I love, love, love this photo! Madonna just remodeled their pediatric outpatient waiting area and this is on the wall above some of the chairs. It made me think instantly of Ryan and all the other little ones facing battles for health and wellness. There are many. And they are definitely heroes. So many of our kiddos don’t get to experience the childhood that most of us got to taste, hear, see, smell and touch every single day. But they are resilient and if you ever want to see someone who knows how to dance in the rain, laugh through the pain and live life to the fullest in spite of difficulty, find a child battling cancer or a life altering disease or the loss of a limb or the heart break of a parent taken too soon. That is the essence of joy right there. It is I Thess 5:16-18 in the flesh ~ Be joyful always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. Because little ones know how to do that.

And in this warm and cozy, cinnamon-smelling place where I get to rest my head every night and wake up every day to sleepy eyed kids who give the best “I love you momma” and squishy hugs, we have three superheroes who are often found behind the scenes, in the background of the smallest superhero’s adventures. Those three are the real superheroes in this house. They are the ones who sacrifice time with friends to serve their brother. They change a 100 pound boy’s poopy diapers without grumbling, they stay up late to make sure he is tucked into bed when mom and dad aren’t home even though they wished they had been cozy and comfy in their own bed an hour ago. They patiently pick up toys and socks and every other little thing their brother throws all over just so they can enjoy the sweet giggles that escape him when he throws things. They keep him secure on the edge of a chair or gently lower him to the floor when he is standing as seizures ravage his body and make him unsteady. They whisper sweet promises of love as those same seizures attack him for long periods of time. They hold their brother and cuddle him when he is crying in pain or gagging because his stomach once again wants to revolt. They cry tears behind closed doors. They pray the most heartfelt requests for comfort to a God who gave them this compassion and love for a broken brother and for the other broken this world holds. They serve and trust a God who is changing them and making them the superheroes they are. They wear a protective layer of resilience to guard their hearts and minds from the stares, the rude comments, the judgmental laughter. They know how to laugh in spite of stress, how to put on a happy face and encourage their friends in spite of their own breaking hearts. They take the assignment before them and instead of being angry at the big boss upstairs, they embrace the good, the bad, the ugly, the laughter, the smiles, the nosey kisses, the snuggles while watching baby cartoons that don’t interest them.

And I, along with Travis, get to be the keeper of the gate at this home filled with superheroes. It’s my privilege and honor to feed them, pray for them and be blessed by the goodness they bring into my world. My superheroes – Brad, Sidney & Trevor – are God’s angels in the flesh.

HAPPY BIRTHDAY SIDNEY & RYAN!

That’s right….tomorrow, October 7th, is a big day around our house. Sidney will be 14 yrs old, and Ryan turns double digits, the big 1-0. I will never forget how upset I was that Ryan was going to be born on Sidney’s 4th birthday thinking he was ruining her day. But now that things turned out as they have, she relishes that they get to share their special day. I can hear her in her room right now talking to Ryan who is sitting on her bed. She is singing to him and telling him all about tomorrow and how special of a day it will be. She’s talking about where we should go out to eat for dinner and asking where he wants to go, telling him he is turning double digits and asking him if he thinks his para and teachers are going to do anything special for him at school tomorrow. He is such a good listener and never argues or disagrees when Sidney picks a restaurant. She picked chocolate zucchini cake for their dessert, and he didn’t argue with that one either, nor did he care that she doesn’t want birthday donuts this year but instead wants her candle in a pile of pancakes. One of them gets to celebrate turning a year older and enjoy the day being just about her; the other has absolutely no idea he is turning a year older nor is that a concept he can even begin to grasp. As the years go by, the emotions of this one short day that rolls around every year become more and more conflicting. There is a chasm in my heart on this one day.

We get to celebrate the beauty of a young woman turning fourteen tomorrow. She is beautiful inside and out, and the love of Jesus radiates through her life. She is energetic, helpful, fun loving, competitive, caring, passionate, intuitive and social. She knows what everyone should be doing at any given time and can run this household all by herself. She is the substitute administrator of this house and loves responsibility. And she’s very good at it too. For years now she has been the mini care taker of all three of her brothers and makes sure the older ones are up and moving every morning when she doesn’t see them upstairs by 7 am or a little after. She knows just where to find the antibiotic ointment when one of them needs it, where the nail clippers or pliers or highlighters are hiding, how to find a recipe for this or that, how many ibuprofen to take when one of them has a headache, where and when everyone needs to be out of the house to get to practice or a friends or a church event. And it’s not that we ask these things of her. She does them because she loves it, because she loves her brothers, because she is a natural born care taker. But aside from that gentle, thoughtful side, she is also very social and loves time with her friends. It is music to my ears to hear her laughing and talking and having fun with her friends behind the closed door of her room. She hates drama and is very picky about who she lets into her inner circle. And while that circle is small by choice, she is fiercely loyal to those who get to take a piece of her heart in their hands. I’m so very proud of the young woman my Sidney is becoming and can’t wait to see what God has planned for her future. She loves Philippians 4:13 which hangs on her bedroom wall ~ “I can do all things through Christ who strengthens me”. My Sidney, I love you beyond words, sweet girl of mine, and I can’t begin to tell you how proud I am of the beautiful young lady you are. It is a privilege to be your mom and I hope you know how very loved you are by all three of your brothers and both your dad and me too. Happy birthday sweet girl!

And my youngest, the baby of the family. I just don’t know where to begin with him. My heart is torn between celebration and grief. It’s been a tough few weeks for some reason and the sorrow I feel is still spilling out, even overflowing into his birthday celebration. But every year is hard. Birthdays are suppose to be about celebrating another year of growth, maturity, learning new things, expanding horizons and seeing kids grow and change. But Ryan’s birthday never seems like much of a celebration to me. Oh sure we sing happy birthday, take his picture on the counter every year sitting next to his only sissy under the birthday banner. But he doesn’t understand, grasp, celebrate or join in the fun. Because he can’t; he simply has no idea what a birthday is. His body gets bigger, his age gets older, but he remains a baby and the gap between physical and mental abilities gets farther and farther apart. And this year as I look back at the past twelve months, I don’t feel the same joy and pride I have for Sidney as she matures, changes and blossoms. Instead I feel sadness for the loss of words, the loss of strength, the loss of engagement with others. It’s not a huge decline that happened quickly but instead it’s a slow progression of loss. I’ve struggled so much lately with the unknown monster who is taking residence in my birthday boy’s body. I want a name, I want to tell this disease I hate its progression, I want to scream “I hate you with every ounce of my being” and have a name to scream at, I want to know what the future predicts for him, I want to know what complications are normal to expect, I want to know if my fear of the other kids passing this same terrible unknown disease to their children some day is possible and justified. But those are things I will probably never know because this monster is silent, he is divisive and tricky and refuses to be found. But I can’t let myself focus on all the sadness, all the unknowns, all the moving-in-the-wrong-direction stuff for too long. Because the truth, the most important perspective, the big picture, the beauty of this almost ten year old’s life is this – my Ryan is changing the world exactly as God intends, one life at a time, one sweet moment of beauty and laughter and joy as they come. Good grief, the Lord has changed me in ways I don’t even comprehend just by being his mom. And it’s such a privilege to be a part of his life, to get to raise him and care for him and love on him every single day. Because every time the sun sets, I get to be one of the few to tuck him in to bed, I get to give him the last nosey of the day, I get to hear the last squeal and see the last smile. And that is beauty at its best. And then I get to repeat it the next day and the next and the next. There are no words to describe the love in my heart for a broken boy whose body wants to fail him. Because yes, he is broken, but he is amazing and loveable and captures the attention and affection of nearly every single person who has the privilege of being a part of his simple little world. He changes people without them even realizing it. So for however many more birthdays we get to celebrate this cute ten year old boy who blazed into our family and changed all of us for the better, I am going to choose to be thankful and joyful and enjoy every single minute of an amazing life that blesses the socks off of me.

God is so very good, and I will never be able to thank Him enough for the joy these beautiful people bring to my life. So happy birthday to two of the loves of my life. Your dad and I are blessed each and every day by you. You both make me smile. Happy birthday Sid and RyRy!

Autumn is here, and we have spent lots of time at football and volleyball games.  It’s fun to see how the kids progress from one year to the next.  The older three are doing well.  It’s hard to believe in six days we will have two birthdays to celebrate – Sidney, 14 and Ryan, 10.  And in two months Brad will be 16 and driving!  And only three short months later, we will officially have three teenagers; this age is such a blast – really! Ryan has been having a tough time these past couple of months and can’t seem to pull out of it.  I’m certain in the deepest part of my heart that it’s our new normal as hard as it is to accept.  He slumps over all the time now and never sits up tall and square like he has for years.  His legs are getting weaker and his ankle braces are now causing sores on his lower legs because they are not tall or strong enough to support his weakening muscles (we will see a pediatric ortho doc in a week).  He is quieter and drools more plus he lays around and sleeps more too.  Don’t get me wrong…he still smiles and squeals, that just doesn’t happen as often as it used to.  I would be lying if I said it’s been an easy adjustment.  I fight the tears often and realize that while we can’t go back, I am grieving the boy he used to be – the energy, the mischievousness, the squeals and laughter.  It’s still there but in very small doses.  These past nine days have been rough as well because he has been sick with on and off again fevers, gagging, throwing up, decreased appetite, smelly breath, runny nose and loose stools.  Travis had his abdomen x-rayed while I was in DC (we had a great time) and thankfully that was negative but he just can’t seem to get over this one which is the norm now – he fights a simple illness for 2-3 times longer than the average person.  His poor little body is just tired.  I did take him to the pediatrician yesterday to check his ears, and he was put on an antibiotic because his throat was so junky and he has a lot of drainage which is obviously leading to the bad breath.  Hopefully he will be felling a little better tomorrow and able to go back to school.

I am still searching for a job which is OK; God has provided in amazing ways and I know He is going to reveal the right job in His perfect timing but I can’t say I’m very patient in the wait.  I am doing flu clinics for a company I applied for and am enjoying the opportunity. After being off the night shift for a month now, I can say I feel human again.  I can’t believe how much more alert, engaged, positive and content I feel.  I don’t miss my old job in the ER one bit and wouldn’t go back to that environment if I had to; I don’t want to be that old Kim again.  I’m actually really excited to start fresh and am praying very specifically about one job I interviewed for that I really want.  I know God has a perfect plan and I try very hard not to get ahead of myself and wish too much for what I think is the right job.  Otherwise things are as they should be which means life revolves around the kids’ schedules, and Travis and I cherish the time we get alone.  God has been gracious to provide everything we need and even in the midst of waiting on Him for my job situation, grieving the new normal with Ryan, cherishing every day with busy kids…my heart is full.

I would like to ask for prayers for a very precious family.  Jason and his wife Kara have four children, they live in Colorado where Jason pastors a church and Kara is fighting cancer.  She’s already gone through the whole regimen of surgeries, radiation and chemo for breast cancer, but in the past two weeks or so when she went for what was supposed to be a routine follow-up, she was told the cancer may have spread.  Just yesterday she had another surgery to remove her reproductive system, and it was confirmed that the breast cancer has spread to that area and I believe also to her lungs.  Please pray for this wonderful family.  Kara has an amazing blog I encourage you all to follow as she is a very creative and touching writer.  Jason’s mom went to high school with my mom, his older sister is one of my older sister’s dearest friends, Jason, Travis and I went to jr high and high school together, Jason was the best man in our wedding, Travis was a groomsman in Jason’s wedding, and our families remain in contact after all these years.  Here is a link to their blog:

http://mundanefaithfulness.com/

Thank you for your continued support and prayers for our family.  We have been so very blessed by a community of believers, family and friends over the years whom we cherish in ways our words can not describe but in which our hearts remain blessed.  You are all so very loved.  Blessings to each of you!

This past month has been interesting. Oh sure it’s been wonderful with football, volleyball, watching and listening to the kids do their homework with their headphones listening and singing to music or watching football on TV with the occasional comment about their Fantasy Football players in the midst of studies. It’s been full of trips back and forth about a thousand times a week to three schools, the football field, the volleyball court. But I love it. I love carting my kids around because I’ve already calculated that in six years Trevor will be in college and all of this will be gone. So I’m going to love every minute of it right now while it is here and I am able to enjoy it. Even with the dirty, smelly uniforms, the clumps of mud in the entry way from football cleats, the pencils and pens and paper left on the kitchen and coffee tables, the shoes dropped on the tile floor, the dirty dishes left in the sink as the kids are running off to shower or leave for practice or do homework. It’s a season and like all seasons of life, I’m learning to enjoy them while they last. Because when I turn around, least expecting it, they have changed. They have grown, their beauty has evolved, their voices have dropped, their mannerisms appear so mature. And I daily choose to relish in those moments and tuck them in the depths of my heart.

And as the seasons of my kids growing years change, the seasons of my own life evolve as well. The season that has encompassed the past four weeks of my life has been one of sorrow, of hope for a better future, of loss and unfairness and loss of trust. It’s a season I hope not to repeat any time soon but as Psalm 23 says, “he makes me lie down in green pastures, he leads me beside still waters, he restores my soul”. And that’s what my Heavenly Father is doing right now. I can’t say every minute of every day I am enjoying the beauty of today, the freshness of the green grass, the calm trickle of the fresh, cool water. Sometimes it’s easier to crank my neck as far around as I can to look back at where I came from and wish I could take a few steps back and stay where I was. But then I look at where the Lord has brought me for today and I’m thankful for the calm, thankful for the lessons of faith, relishing the act of obedience to sit still and wait. Because my truth is that where I came from became ugly. I became ugly. My morals changed, I laughed at what was far from funny, I spoke in words that made me cringe, I hardened in ways I never thought possible. The ugly came out and it stayed even though I didn’t welcome it. As I was walking through my room several days ago, I stopped and kind of jolted when I realized that for quite a while, I had been saying the end of Psalm 27 over and over in my head without even realizing it. It says “Wait for the Lord, be strong and take heart, and wait for the Lord”. This is a chapter I memorized years ago and I know God brought it to mind as I was meaninglessly meandering in my safe haven to find who knows what when I caught myself repeating the promises of God. He was calling me to wait. I hate waiting. Despise it. Loathe it. I am impatient to my core; it seeps through my blood and in every bead of sweat I drop. I want things done yesterday so I can cross them off my list and move on to the next thing. I love surprises; just ask my husband and kids because every day when I go to get the mail I get a little jump in my step wondering what lovely surprise just might be in the box today. Sometimes it’s a card from a friend, a box someone has been waiting for, a magazine filled with beauty, an invitation to something wonderful. And sometimes it’s junk, endless credit card applications, bills and more bills. That’s just life. But no matter what it is, it’s a surprise each and every day. And here I am sitting still waiting for the next surprise. The next move, the next assignment God has for me. I wanted it yesterday but today I am still waiting for the Lord, still watching the sun rise and set, still listening to streams of refreshing water trickle past me, still plucking blades of grass as I wait. And while there is beauty in waiting, in learning to surrender my impatience and my desire for what I want in my own time, there is organizing and cleaning and restoring going on in my soul. Sometimes I just want to sit on the naughty bench and say “OK you got me here, get the lesson over with, let’s hug, make up and move on” like I did when my kids were little. But I know it’s all about His timing, what I need to learn in the wait, cherishing the blessings of His goodness when life seems to strike another blow. And one of these days, that blessing will come and we will move on to whatever comes next. But I don’t ever want to miss what I need to learn today. I don’t want to check out and find myself having missed the grace I was given, having rushed so quickly I forgot the little answered prayers; I want to take in, appreciate, relish and savor the beauty of God’s love for me today, the joy of my salvation, the daily provision, the thankfulness that overflows my heart for all that is right and good and lovely and true. Waiting is hard, but in obedience, I wait.

So many of you know how transparent I have been over the years in the struggles we have faced with Ryan, finances, health, jobs, this and that and the other. And I really believe God calls me to be transparent so He can do what He needs to do in my own life as well as the lives of those around me. It’s my testimony of His goodness, my obedience to His calling. And so today, as hard as it is, I am going to be transparent once again even though I am reluctant, even though the hot tears stream down my flushed cheeks, even though I am fearful of others opinions, thoughts, judgments. Because the hard truth is that I have not had a job for the past four weeks. That’s really difficult to say. But it’s my truth for today. It’s my story. It’s my time of living Psalm 23 and 27 as I described above. And I don’t have a job because I was accused of doing something I did not do. Because someone passed judgment on me and didn’t take the time to find out facts and truth. Because for whatever reason, God wanted me to move on and so I have. I was not fired, I quit, but it was not in the timing I would have chosen. The details do not matter. God and my family and closest friends know and are loving me through it. What matters is that I find myself, and my precious family, in a precarious spot feeling alone, frightened, disappointed, and sad. Feeling like I was punished for something I did not do and so very disappointed no one cared to find out the truth. I have no idea what the Lord is doing in my life and why He chose to allow the events of the past four weeks to play out as they have. I have not enjoyed it, I am a huge believer in justice and truth. But no one seemed to be interested in truth and facts so I am here in the lonely, in the desert, in the hot and sweltering fire trying to figure out what God has for me next. And I know goodness is coming. I’m actually experiencing it today. The verse before wait for the Lord, be strong and take heart and wait for the Lord at the end of Psalm 27 says this – “I am still confident of this; I will see the goodness of the Lord in the land of the living”. And that is my solid foundation; the truth that God has my back. There are so many truths that keep my feet moving with one step in front of the other. The truth that God’s mercy is new every morning, that He is the one who delights in me, that I am here for His purpose only to do His will in His perfect time. The truth that says “if God is for me, who can be against me?” and that “God will supply all my needs in Christ Jesus”. Oh he doesn’t do it in this impatient girl’s time, but He does supply my needs. There has never been a time we have gone without; the Lord has always, always, always supplied exactly what we have needed when we needed it. Never more and never less.

So please pray with us during this time of waiting. We sure need it and we cherish the prayers of those who surround us and walk this journey at our side. He is a good God and no matter how many times I have to repeat Ephesians 6:10-20 over and over again in my mind, I know this to be true – my Heavenly Fathers loves me with a love I will never grasp or understand. And part of that love means my perfect job is coming. It’s not in my time, it’s not in my plan, but it’s what’s best and I know that in the deepest crevice of my soul. So in my ugly, in my deep time of sorrow and waiting and being completely vulnerable, I will wait for the Lord, be strong, take heart and wait for Him to move. Your prayers are appreciated and I can’t wait to tell you all how God is moving and working and providing in the days to come. You are loved and cherished!

What beautiful weather we have! I’m thoroughly enjoying all the open windows and cuddling on the couch with a blanket. Fall is my absolute favorite season and I am welcoming it with open arms, especially after the heat wave we’ve had lately. The kids are all doing great and are in the midst of football and volleyball practices, games and homework. The older three are doing great in school as always. Ryan is doing well too but it’s always an adjustment at the beginning of the year with a new para. He has two paras during the 4 1/2 hours he is at school and thankfully one of his very favorites, whom he had last year, is helping with the transition and Ryan has always been in great hands at Humann. I’m just sad it’s his last year there with such a great staff. After three months off for summer the staff at school has noticed how much weaker Ryan is and that he doesn’t talk as much and drools a whole lot more. His body is growing but his strength is not keeping up with the growth. But again, he is happy which is all we care about.

Otherwise things are great here and we are all doing well. Travis and I stay very busy with the kids and all their activities on top of work and everything else we have to do to keep things going around here. In 1 1/2 weeks I am flying to Washington DC with one of my very best friends and we will sightsee together; thankfully I get to see my older sister too as we will be staying at her house. I’m super excited to show my sweet girl around the capital but also thrilled to see my sissy. It will be a great trip and I think we picked the perfect time to travel.

Sorry for the infrequent posts lately. We’ve been busy with life and around here, no news is definitely good news! I have lots of pictures to upload and will try to get to that very soon. Love to you all!

Feb 14, 2006:
Two days ago it flurried on and off all day long but nothing really stuck to the ground. Sidney & Trevor decided to go in the backyard to catch snowflakes in their mouths – the big huge ones that are fun to catch on your tongue. Anyway, I was making dinner and looked outside and there was Trevor standing in the sand wearing his sister’s purple snow boots, holding a can of olives and eating them while it’s snowing. Then there was Sidney right next to him playing in the sand wearing her girly winter coat and her brother’s spiderman hat and his boyish winter boots. It was the funniest thing I’ve seen in a while and made me laugh. I didn’t get the camera out fast enough. Thank God Trevor is only 4 yrs old and too young to care what others think of him in purple boots. He loves to eat olives & mushrooms out of the can. Better than candy and cookies I guess!

February 27, 2008:
Today was a pull-my-hair-out day. The oldest doesn’t seem capable of listening the first time since “huh? I didn’t hear you”, as he is staring me in the eyes, has been the most used sentence I’ve been hearing. The second is in a lying phase which is driving me completely crazy and I’m sick of punishing but this has to be nipped in the rear quickly. The third one is pretty easy to get along with these days and is just a cute tooth-missing first grader. I know they are all phases but some days are just so much worse than others. I think back to all the grief I know I caused my parents over the years and then realize they are all just normal kids.

Dec 28, 2005:
Tomorrow is Travis’ birthday and believe it or not, he wants to take the kids to Chucky Cheese! I laughed but he likes to play all the games with the kids and since they are all kids – Travis included – I’m sure it will be fun! 🙂 I don’t think my husband will ever grow up and that’s just fine by me!

October 22, 2010:
Last night I was in the kitchen talking to Brad and all of the sudden I had one of those “whoa!” moments. I was looking at him at eye level. Sure enough, he has outgrown his momma. Travis measured us back to back and he has a good half inch over me. Of course Brad thinks that’s great news. Me on the other hand…I’m having a hard time believing my 12 yr old baby is now bigger than me!

May 13, 2005:
We all want our kids to be “perfect” and when your world falls around you when you hear that your child is mentally handicapped, you realize there is no such thing as “perfect”.

February 8, 2011:
Stuff in the fridge is not intended to become wall decorations. Case in point….the other day I walked past the staircase to find a nearly full carton of sour cream all over the walls and splattered on nearly every step. You guessed it. Ryan carried the carton and threw it down the steps. I’m sure he enjoyed watching to explode everywhere although I can’t say I had the same level of enjoyment cleaning all that stuff up. Good thing the dog likes sour cream.

August 14, 2006:
Right now the oldest three are in the boy’s room downstairs playing “storm”. That means they have the noise maker set on “thunderstorm” really loud and they are hiding in the closet under the stairs – their closet is huge. I guess they are using their imaginations!

December 2, 2010:
This evening the kids drew names for their sibling Christmas gift exchange. I love how excited they get to see who they get to buy for. Ryan even picked his own paper out of the jar which the kids loved. We also decorated our candy house which they look forward to. We all had fun and even Ryan helped – sort of. Actually he had a blast throwing candy across the kitchen then laughing hysterically. And we let him do it which he thought was great fun; Travis’s rule was “don’t let him throw the M&M’s!” So he got to throw all the candy no one wants to eat.

November 4, 2010:
Deuteronomy 33:27 says “The eternal God is your refuge, and underneath are the everlasting arms.” That’s exactly where I picture Ryan in the days and weeks to come – in the arms of our everlasting Father who loves Ryan with a fierceness and passion I can not even fathom. I know how strong my love for him is and know it is nothing compared to the love our Heavenly Father has for Ryan.

May 3, 2006:
Ryan had his first trip to the dentist yesterday. Needless to say, he screamed and threw a massive fit the whole time we were there which I expected; it was just too hard for him and having two women in his face didn’t help in a new environment. The dentist said to bring him in just to “look around and get him familiar with our office” a few times before November when we are in the area. Yeah, because I have the time to drive 20 minutes across town to stop in the dentist’s office with a boy who is autistic and is only 10-12 months old developmentally. Like he’s going to get it when I say, “now this is your dentist’s office so get familiar with it so when we come back in a few months you won’t have a difficult time.” Don’t they get it? It doesn’t work that way when you are only in the office twice a year! She’s supposed to specialize in disabled children so we’ll see.

May 1, 2009:
Ryan ate a strawberry last night. It took him a good five minutes of picking it up, smelling it repeatedly, putting it back on the table, looking at it, picking it up again to smell. Finally he tried it! He ate about five or six pieces. Now for some of you, you probably think “so what” but if you know Ryan and his major food issues, you understand that’s a big deal! For one, he only eats brown foods (meat, crackers, cereal) so to eat something red is huge. And two, he never, ever eats fruits because of the texture. I don’t know that he’ll ever do it again but at least he tried. He had a big cheering section at dinner last night while he was doing this. Then later in the evening, Sidney screamed upstairs for Travis and me to hurry up because Ryan needed help. The little stinker crawled under the boys’ bunk beds and got stuck. Why he decided to do that is beyond me but he’s just like a little toddler and does things that make no sense – plus he is into everything. Between him and the puppy, we are constantly on guard waiting for one of them to get into something.

July 21, 2010:
The following letter was in our mail when we returned home from Idaho.

Kim,
“Be still, and know that I am God”
You are in our prayers. Take care during this time, and always place all of your hope in the one above!
God bless,
Your Friend

With it was a cashiers check. We have no idea who the sender of this was and honestly, I don’t want to know. It was a blessing from God and an answer to the prayers Travis, the kids and I had been praying for. With tears in our eyes, sitting around the kitchen table Monday afternoon, the kids, Travis and I gave thanks because He showed up. Remember this blog from Wednesday, June 9th?

We have started praying individually and together as a family for God to show up and provide something we need. We’ve talked a lot about wants and needs with the kids and they understand the difference between asking God for a trampoline compared to asking God to provide a need. I can’t wait to see how He does it because we can’t do this on our own. What an amazing faith story it will be for our kids to see first hand how God provides. We are praying Matthew 21:22 together: “You can pray for anything, and if you have faith, you will receive it.” And Matthew 18:19-20: “When two of you get together on anything at all on earth and make a prayer of it, my Father in heaven goes into action. And when two or three of you are together because of me, you can be sure that I’ll be there.” So please pray with us because He is a gracious and loving God and we can not wait to walk by faith over the next few weeks and see how He works this one out. The kids are excited to see how He shows up and answers their prayers too. And when He does provide, you will hear what it is as we share the story of God’s provision with you.

Well we have a story of God’s provision! He answered our prayers…he answered the kids prayers! He is an amazing provider. We were praying for finances to go on our ten day trip to Sturgis for Whitney’s wedding and on to Idaho. I’ve not kept it a secret that our financial situation has been tough. I’m not so full of pride that I can’t admit we have struggled in this area for a while now.

August 12, 2006:
I went in the front and Brad, Trevor and a neighbor kid all had plastic grocery sacks they were using to catch bees (doesn’t that sound like a smart idea?).

I shared in the last post about Steven and asked for prayers for his kidney transplant that happened yesterday. Again this is Travis’s cousin and her little boy. It is only by the grace of God that Steven and his mommy Penny both came through surgery with no complications. Penny’s kidney was very healthy and she is doing well. Please continue to pray for her strength to return quickly so she can spend as much time as possible with her little one who turns 3 today. Happy birthday Steven! He came out of surgery already off the ventilator and doing so very well. The Lord healed his bladder which the doctors thought was very small and would need to be stretched for the next two months to get to the size it needed to be. God performed a miracle, once again, yesterday and the doctor reported to the family that his bladder was completely normal and he was urinating a lot already. The Blohm’s have endured three plus years of hardship with Steven being born in kidney failure and the Lord has carried them through in a way only He could possibly do. I truly believe their years of plenty are coming and Steven is going to grow up to have an amazing testimony of God’s healing and provision for him and his family. It was such a great way to end the day knowing they were both doing well. I’m sure today will be difficult as post op day one is always so hard. Please continue to pray for rest, control over pain, no infection or other complications and for that beautiful, life saving kidney to thrive in Steven’s body. So many prayers have been answered and my heart is full of thanksgiving and awe at how amazing our God is and the way he answers prayers above and beyond anything we can comprehend.

After spending the day checking my phone a hundred times for updates, praying often and crying tears of joy when they both came out of surgery, I found myself sitting at the dinner table over blueberry pancakes and scrambled eggs with tears of pain flowing down my cheeks. And I said to Brad and Sidney who were there in the moment with me, “Why hasn’t God given us our miracle of healing for Ryan?” I didn’t expect to feel such searing pain at the end of the day. The emotions came out of nowhere and honestly surprised me. While celebrating for Steven, I found myself doubting God’s plan for us. And it was a very uncomfortable place to be. It’s so very easy to compare our own journey to that of someone walking along side us. And it’s not fair to anyone to do that. I had to really stop, pray and believe in the goodness of God that has brought us this far on a unique path all our own. God has not brought physical healing to Ryan because that’s not His plan for today. I once again had to go back to those eight comforting words God spoke to me in January 2005 when he so clearly said “He is as I intended him to be”. What power those words hold in my heart and mind. While I can easily fear for an unknown future, it takes an extra dose of strength and determination to remember to stay in the place of grace God has given me. There is a little place tucked in the corner of my heart that I have to continually remind myself to go back to. A place that involves all those promises tucked away in the depths of my mind that tell me my Father is faithful, He is good, He is glory and love and mercy. My story is my own and comparing it to someone else’s only diminishes the power of God’s work in my life. I am living the beautiful life God intended me to live. And in that story is a beautiful script of redemption and grace in the form of a little boy who captures the hearts of everyone around him. He is part of my story and the God I trust isn’t finished yet. He is working on me day by day and that means the emotions I feel are very real but they have to be from a place of trust and hope and joy. It’s in those moments I am able to relish the beauty of broken dreams, broken bodies and broken hearts. It is in that place where God meets me and says “well done my good and faithful child”. I am living a legacy of love. A legacy of hope and healing all my own. And while it’s so very easy to allow my mind to travel to that cliff of despair, comparison and unanswered prayers, I’ve found it even easier to stay in the grace that tells me God is good and He is working out His perfect plan for our family. Broken beauty is all about grace, it’s all about trusting the unknown future into a very known God, it’s all about believing in the good that comes from every situation and it’s definitely about giving God the glory for all He has done and will continue to do. It’s OK that I had a moment of pain as the tears wouldn’t stop yesterday because at the end of the day, I found myself back at the place of rest in the arms of the One who holds my every dream, the place of thankfulness for answered prayers for loved ones, the place of joy that in spite of circumstances I can’t change I can still find good, the place of healing and redemption for a messy life lived to the fullest. Broken beauty, it’s what I know.

School is going well for the kids. Brad started two-a-days this week and hasn’t been at all thrilled about leaving for school at 5:30 but it’s football season. I think his first game is in two weeks and I can’t wait. I love watching the kids play sports. Sidney starts volleyball practice on Monday and is on a new team; hopefully she loves these girls. And Trevor has been having nightly football practice too. I watched him last night and he has gotten even more aggressive than last year. His games start in a week or two as well. Lots of driving for sure but well worth it. These days will be gone sooner than I want to even think about. Ryan has done well getting back into the routine of school too; he is more tired than usual but I expected that. They all seem settled and happy which is a blessing.

Travis and my song is Remember When by Alan Jackson. I love this part ~

remember when we said when we turn grey
when the children grow up and move away
we won’t be sad, we’ll be glad
for all the life we’ve had
and we’ll remember when

While my heart has such conflicting emotions about the kids getting older, we both have absolutely loved this age. Sure they are normal teenagers with attitudes, hormones and the inability to keep track of their stuff or put anything away, much less clean without being asked 100 times, but they are good kids. So we are choosing to enjoy the moments we have while they are here. We pick our battles and rejoice in the moments that fill us with joy because every day is a gift. I think we have all learned that around here. The Lord has blessed us and we don’t take one single second for granted.

We are missing Travis this week but he is enjoying some much needed brother time. Tuesday he flew to Spokane and met up with his brother and they are now in Vancouver BC for several days. Brady had a dog show to work at for a bit so Travis went with him. They still have lots of time to explore and have fun while there are there. He also gets to spend two days back in Sandpoint ID with Brady’s family before he comes home next week. I miss them all terribly and wish we didn’t have 22 hours of driving between our families, but at least Travis gets to see them.

My heart has been so heavy for Travis’s cousin. I’ve mentioned them before – Steve and Penny, Sierra, Alyssa and Steven. What a beautiful, God loving family. We are blessed to be related to them. Monday Penny will be in surgery for four hours in Kansas City as they give one of her kidney’s to Steven, almost 3 yrs old, who will be in surgery for 10 hours. Please pray for them. They have been to hell and back with Steven’s medical issues and all the other stuff that comes along with raising a special needs child. Steven is adorable and has an amazing second chance. They knew before Steven was born that he was already in kidney failure; and here we are three years later watching how God has moved in their lives to get them to this point. I believe with all my heart that when Steven is older he is going to speak of God’s goodness in his life and tell his story of healing and God’s faithfulness to him. Please pray for all five of them as God brings them to mind. They will be five hours away from home for a while and this will be a long road to complete healing. I have experienced first hand the goodness of God on Ryan’s life and have seen how, even through his severe disabilities and the inability for doctors to “cure” him, God has used Ryan to change others lives for His good. How could I not trust that God will do even more for His glory through an adorable, curly headed, bright and perfectly normal little boy who happens to have non functioning kidneys. Thank you for your prayers!

God bless you all! Much love from us.

Lots of changes coming this week! School starts for the younger three kids on Tuesday, and Brad goes back on Wednesday. Travis also leaves for a week on Wednesday; he is heading north and will be in Canada for a few days with his brother then spend a few days with Brady’s wife and kids too in beautiful Northern Idaho. We will miss him but I’m so glad he gets to go do something just for him. I will be honest and say it’s hard for Travis and me to send Ryan back to school which is nothing new. Having Michelle for his para again this year makes it much easier because we know he will be very loved and well cared for. He has been getting bored so school will be a good change. He will go for 4 1/2 hours of the day like last year. The other three aren’t thrilled about school starting up again – like every other kid – because they don’t get to sleep in anymore. But football and volleyball are here again and they will all love seeing all their friends they lost touch with over the summer. Travis and I will miss them a lot too; we cherish the days when we are all home together with nothing pressing to do. And we’ve been blessed with a lot of those days these past couple of months. It’s been a great summer!

I’d like to ask for prayer for a family who is very dear to our hearts. Penny is Travis’s cousin, and on Monday, August 19, she is giving her son, Steven, one of her kidneys in Kansas City (they live northwest of Lincoln a little ways). They have had a long journey to get to this point, but it is amazing to see how faithful God has been to get them here. Below is the link to their caringbridge site. Please take some time to read through their story and pray for them as God brings them to mind. Long story short, Steven’s kidneys have never functioned; he was born in kidney failure and was not expected to live. But here he is at almost three years old and going strong. And he is as cute as can be! It is only by God’s grace he is doing as well as he is, and I truly believe his story is meant to be told. Please pray for them. Steve and Penny have two older daughters who will also need lots of prayer. I can only imagine how difficult it will be to know their mom and brother are both in surgery at the same time. We love them all and trust Jehovah Shammah is already there, preparing the way.

http://www.caringbridge.org/visit/stevenblohmjr

A bib. That’s all it is. A bib. Something every new parent has for their little ones. It catches slobber and drool and spit out food. We had lots of them when the kids were younger and in fact we still have one or two tucked in the back of the towel drawer for those rare occasions when someone comes to visit with a little one who needs a bib. Kind of like the booster chair we still have tucked in Ryan’s closet or the old books and Lincoln Logs I refuse to get rid of. But now we need them again, those bibs. It shouldn’t be a big deal really. So I have a kid who drools. A lot. Every day. But it is a big deal really. It is. And I can’t explain it and I feel like I shouldn’t be so upset about it. But I am. Sad, teary, painfully real. It’s just a bib but it’s so much more. It’s backtracking. Kids aren’t suppose to not need a bib then one day revert back to needing a bib again years later. But here we are. It’s not a big deal really in the big scheme of life but it’s a big deal in my heart. Because it is another physical sign of Ryan moving backwards. Of one more little slip. I don’t want to have my 100 pound nine – almost ten – year old out in public or at school wearing a bib. He gets enough stares as it is. Not that he knows but the rest of us sure see it. And we feel it in our hearts. That sting and jab. But the fact of the matter is that today alone Ryan went through five shirts because each one was soaked in drool. And who wants to sit around with a sopping wet shirt on? Not me. So it’s time for the bibs to make their way back into the McClintick house. Sidney, Travis and I sat around today talking about what kind of bibs to make. Let’s face it, the ones at the store are not make for 100 pound droolers. So we talked about making some that say “I’m smarter than Obama” or “Drool is cool” or “The slobber king” or maybe making some with trucks or animals or skulls and crossbones. I don’t know. It’s not so fun to talk about making bibs for a fifth grader. It just makes me sad. But here we are and this is what I have to do. Guess it’s time for another sewing project.

Today the sister found a cheap, old Christmas apron that no one knows where it came from and put it on the drooler. Hey it worked for a while. Such a sweet boy. I know I’ll get over this whole drooling and bib drama but for today, this is my reality. Tomorrow is a new day and I’m sure after a few more sunsets and sunrises, my attitude will change and this new normal, once again, will be just that. Normal. That’s usually how it works.

Ry is in post op. I will feel better when I see him with my own eyes. The dentist said everything went well. Hopefully his tummy will cooperate in the next 24 hrs. Thanks for your prayers. 

Wow! It’s the middle of July already and in less than four weeks all the kids will be back in school which hardly seems possible. I swear they start earlier and earlier every year which is kind of annoying. Personally I’d love to see them start after Labor Day. Oh well…totally out of my control. This month is busy but good so far. It’s summer which means spontaneity, flexible schedules, sleeping in, lots of social time and fun in the sun. What’s not to like?!

Brad – Last week was football camp, this week is driver’s ed and next week is football camp again. Then it’s back to his regular summer weight lifting schedule and football conditioning. He’s maturing so much, and I have to say I simply love this age. I’ve always heard people complain about the teenage years but I’m loving it. Sure all three of them would rather spend every waking moment with their friends instead of helping around the house, and they are all allergic to making their beds and hanging up their clothes. But in the big picture, so what. Pretty much every teenager suffers from the same problem. They are responsible, do what they are asked without giving attitude, are fun to talk to and still give us hugs and I love you’s. They are kind and compassionate and yeah, they drive me crazy sometimes but I drive them crazy too. Typical family. But I can’t wait for more high school fun, especially football games.

Sidney – Little miss hard worker made it through her first six days of detasseling and didn’t complain once. Well maybe only to talk about the heat rash she got but she has such a strong work ethic and an even stronger attitude. I was complaining this morning about having to drive her to the high school at 4:30 this morning but I got to go back to sleep. She beats me with her attitude for sure! And she is doing some volleyball, some babysitting and some time with friends. She’s a sweetheart.

Trevor – Baseball and friends sums up his summer. The kid gets more social by the day and has the sweetest group of friends. His baseball team is having an amazing season and has only one game left before entering the tournament as the #1 seed. I have never been a big baseball fan but watching Trevor has changed that; he’s improved so much since last year and is really having a blast. Trevor has matured so much this past year too and is such a sweet kid; he is a gem.

Ryan – We are having a garage sale this weekend and his para came by not knowing we live here. It was so fun to see Michelle come in the house and watch Ryan’s response to her (and vise versa). He just loves her dearly and I was so happy they got to see each other. I just hope he gets her again in a few weeks! On Monday Ryan is having surgery at St. Elizabeth Hospital to do some much needed dental work. He is having at least four teeth pulled, a thorough cleaning, x-rays and sealant put on his molars. I’m sure his mouth will be sore later in the day but it is important for us to take care of his dental work. The general anesthesia needed to get all this done worries me a lot because Ryan’s belly loves to stop working when he is sedated. Those darn ileuses and bowel obstructions like to creep up and settle in. Please pray with us Ryan comes out of this with his bowels and stomach in tact and that he does not suffer any side effects of the anesthesia. It’s hard not to worry when he goes under but I have to constantly remember this verse that I pray over him often ~

I will update Monday so check back then. Much love to you all!

I’ve sat down several times lately to write this post but can’t seem to get past the first sentence. And honestly, I’ve just been blah lately. Several people have even told me they see it, notice I’m not myself. And I guess I haven’t been. It’s been a good month, a good summer, a nice break from the routine of school. And in only 36 days the new school year will begin all over again; I know, hard to believe, right? I’m looking forward to a new year, a new schedule, a new routine, a new year of football and volleyball. But for today I am just here. I’m not depressed, I’m not overwhelmed, I’m not stressed about anything. Sorrow. That’s all it is. Just sorrow. It’s that grief that has reared it’s ugly head again and brought me to a place of sorrow. Because whether I like it or not, my sweet boy who changed my world nine years ago has slipped just a titch. Just enough to make a small, minute, miniscule noticeable difference. Enough that he is a little less engaged, more quiet, more sleepy, less active, more weak, less talkative. He’s still his cute, squealy little self in that big boy body, but he’s changed. And with that little slip comes a heart full of sorrow for this momma. The tears flow more easily, more secretly, more frequently. And there simply aren’t any words to describe how my heart feels. I can’t explain it to people who don’t walk this journey, who don’t know the ups and downs first hand of having a special needs child, one who is fragile and broken. It’s just there, it’s just part of the journey, it’s just a new normal again. So many new normals. And eventually I’ll pick myself up, dust myself off, lift my head up and readjust my sails as we head around the next bend on this journey. It’s not a bad journey, it just changes when I least expect it, when I become most comfortable. But we aren’t suppose to get too comfortable, are we? “And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God” ~ Micah 6:8. It’s a journey full of changing scenery, varying weather, traveling companions who come and go. A journey full of humility. I don’t ever want to be a person who doesn’t know how to be humble. And I think of the times like this where I find myself today and realize that sometimes the view isn’t so great, the terrain not what I would choose, the weather a bit too hot, the load a little too heavy. But then I look to my side and see the others traveling this path with me and I realize what a blessing they are in my life. I’ve come to where I am because I’ve chosen to allow God to access the ugly, the difficult, the stubborn in me. There’s a lot of it. But I look at the good and realize without humility to deal with the rest of me, I wouldn’t be where I am. It’s part of the adventure. I’m so grateful for family and dear friends who don’t ask too much of me, know when to hold my hand and help me up when I need it without having to ask, gently push me and challenge me to stretch, grow and believe there is good in the midst of the mundane, joy in the midst of the sorrow and faith in the midst of the fear. My faith isn’t an emotion but a core belief in the very depths of my soul that tells me no matter what my emotions and thoughts may be at any given time, my God is present, He is working, He is moving, He is challenging me to reach farther than what I think is comfortable. There is a song called He Knows My Name and it says:

I have a maker, He formed my heart, before even time began, my life was in His hands
He knows my name, He knows my every thought, He sees each tear that falls, and hears me when I call
I have a Father, He calls me His own, He’ll never leave me, no matter where I go
He knows my name, He knows my every thought, He sees each tear that falls, and hears me when I call

What a blessing and comfort it is to know every minute of my life is in God’s hands. He is challenging me in so many ways right now to grow, stretch and be the woman He created me to be. Sometimes it’s painful, sometimes it’s easy, sometimes I resist and other times I’m simply complacent. But through it all He’s only a prayer away, right there when I whisper His name, present when I feel the sorrow that has filled my heart. He dances when I dance, holds me when I cry and promises a future full of Him. I know in the depths of my being that no matter what every tomorrow holds, my heavenly Father is right here, preparing me for whatever is to come, for a future that is bright and promising. Even in the midst of sorrow there is always joy, always the opportunity to take each moment for what it is – simply one small piece of my life. These times of sorrow don’t define me but instead make me realize how blessed I am to have a husband who loves me beyond understanding, kids who fill me with a joy that is impossible to put into words, a job I love, family and friends who accept me as I am. It’s such a humble life I lead but I wouldn’t have it any other way. Even when there is sorrow, there is grace. It’s only by God’s grace alone that I am able to put one step in front of the other and enjoy the present. Beauty is in the eye of the beholder and I’m thankful for these moments to see beauty that is marred by sorrow, built on a foundation of faith, sewn in humility and encompassed by joy. Chris Tomlin sings a song called I Will Follow You….

Where you go I’ll go, where you stay I’ll stay,
When you move, I’ll move, I will follow you
Who you love, I’ll love, how you serve, I’ll serve,
If this life I lose, I will follow you
In you, there’s life everlasting, in you, there’s freedom for my soul
In you, there’s joy, unending joy

We are home and all wishing we were still on the beach. What a wonderful vacation we had! God blessed us with safe travels, health, lots of laughter, fun and adventure. It was so relaxing, and we made some wonderful memories with my dad, his wife and Lyndsey who does respite for us but has become part of the family. Here is just a tiny tidbit of our trip; we came home with over 1500 pictures! We are now back into the swing of things and the kids are happy to see their friends. Baseball, weight lifting and football conditioning, babysitting and summer camps are what it’s all about now with the typical summer sleeping in, friends here all the time and swimming. It’s hard to believe that two months from tomorrow starts the new school year. For now we will enjoy these lazy days and pack in as much fun as we can.

at Six Flags St Louis on the way home

love, love, love – this is Sidney’s photography and she is a natural

I found this tip before we left and a snow sled turned out to be the perfect transportation for Ryan on the beach

We were definitely “on the beach” and loved every minute of it!

our morning view up the beach

Love the rainbow but this sweet girl is now a beach girl at heart

one of my all time favorites of these two cuties

on the beach

The best seafood on the island!

A life without love is like a year without summer. ~ Swedish Proverb

First of all, I want to say happy birthday to the best dad ever!  I love you, dad, and am so proud to be your daughter!  Here’s to another year of blessings and great memories to be made with family and friends!

Well today was the last day of school for the kids.  We officially have a sophomore, 8th, 7th and 5th grader.  They all had a great year and thrived academically, athletically and socially. We are all excited about summer which, of course, means sleeping in, late nights, friends, swimming, fishing, summer camps, bon fires, s’mores and lots of laughter.  It also means the countdown to our vacation officially starts today and there are only eight days until we will be on our way to Folly Beach, SC!  I’ve heard Charleston is a beautiful, historic city to visit and we will be only ten to twenty minutes from downtown. 

I am on an antibiotic for bronchitis so please pray everyone else stays healthy.  Travis is not feeling well this evening and is probably coming down with the stomach flu, and he has to work 13 hrs tomorrow.  The older three kids are all healthy but Ryan is getting another infection around his g-tube so I will have to call the doctor for more antibiotics for him.  Hopefully he stays healthy so we can have a great trip with everyone heading south.  

Otherwise things are good.  I haven’t been posting much these past couple months and really, that’s a good thing because no news means good news.  I promise to do a better job this summer posting photos of all our adventures.    The Lord has blessed us with health and strong family bonds, and we cherish our time together and with our dear friends as well. 

My job for tomorrow is to get our chore charts posted again like I do every summer.  Life runs so much more smoothly around here when the kids know what they have to do, and we don’t have to remind them over and over what is expected each week.  During the summer we require much more work from them than we do during the school year.  I always tell them, “you have 24 hrs in your day to do whatever you want; it won’t kill you to give me one of them to work around the house”. 

We send our love to each and every one of you and pray you are all well!  Please let us know how we can pray for you in the comments.  Blessings and sunshine to you all!

What a fabulous day!  OK so it might be 77 degrees in the house and maybe a little toasty, but that’s OK.  One of the kids asked if we could turn the air on and Travis and I both said no way!  We do NOT turn our air conditioner on in April!  Plus, it’s suppose to SNOW Wednesday night with a 1″ accumulation expected.  Seriously?  Only in the Midwest can you tan in a bikini (Sidney), mow the grass, turn your air on, plant flowers, wear a sweatshirt and scrape the ice off your windshield in a 24-48 hr period.  Our weather is pretty bipolar right now but at least it’s causing the drought to weaken with the cooler temps hanging on.  I’ll take it.  I guess you can say our weather keeps life interesting – and kids complaining!

We are in the midst of the end of school countdown and right now I think there are only 18 days left.  Of course all we are really counting down to is our beach trip which is only 32 days away (yes, I am counting).  We are all so excited but I have to say I think my dad is more excited than anyone else.  I love that he randomly calls asking questions about the trip – have you found a hotel near Nashville yet, are we taking our bikes, are you driving your van or SUV, what are we taking for food vs buying there?  This is the first trip we will have taken with my dad and step mom and I have to say, we are all very excited.  Heck, they are fun.  How many people can say their parents who are in their 60’s and 70’s have gone sky diving for the first time only a month ago?  They like to travel, love new experiences and most of all, love their grandkids so I’m sure this will be an adventurous, fun time.  And these are memories we will all cherish for years to come.  OK enough about vacation…can you tell I’m excited?  We never get to do stuff like this because of Ryan’s health and finally we get to take a trip as a family – all of us.  Lyndsey, whom Sidney and I both call our sister, is coming with us so we can still go have fun when Ryan needs to nap or isn’t able to venture away from the house. 

The kids are all in sports mode with Brad still in the midst of golf tournaments and enjoying every second of it.  Sidney has one more volleyball tournament this weekend and possibly a bid to nationals (I’m secretly hoping not but don’t tell anyone).  And Trevor has had a couple of baseball practices and he is feeling much more confident in his skill level now that he has a year under his belt.  And with summer coming so soon, we are signing kids up for camps, clinics, drivers ed. 

I love that as I’m typing, Sidney and Trevor are sitting at the kitchen table while Sidney works on homework while Trevor is making a Genghis Khan model out of a toilet paper roll and a bunch of Sidney’s craft and thread stuff that is due on Friday.  All the while they are both singing to Everfound which is the group who performed at Dare to Share this year.  Brad is still at golf (great day for 18 holes!) and sweet little Ryan is very out of it on the couch.  This little guy just doesn’t handle the heat well at all, never has, and these warm days really get to him.  They zap him of energy and put him in zombie mode.  I feel so bad for him but this is how he has always been so to some degree it always bothers me.  Maybe some day Travis, Ryan and I will move to northern Minnesota and live on a lake.  Think we can do Ellisbrook all the way up there in the middle of nowhere?  Honestly I know we will never leave the Lincoln/Omaha area with our dreams, but I’d rather be here loving on disabled adults in my air-conditioned home with our crazy weather than anywhere else in the world.  Every day I pray God will move us closer to our dream; of course I want to get there faster than He obviously does.  I firmly believe God placed this dream of Ellisbrook in our hearts because He fully intends for us to serve our community by loving and caring for our area’s disabled adults.  I can’t wait to get there!

Travis has been busy working in the yard, doing projects around the house and helping me to get ready to paint the basement bedroom which needs an update from a sports theme to a more mature teen look.  For several years Travis has been wanting another bike trailer to pull Ryan so they can bike together but Ryan outgrew the one we had.  Good heavens, the kid weights 97 pounds already! He is taking after Travis and Brad’s build and is going to be huge. A few months ago Travis was sharing with Ryan’s therapist at Madonna how he wishes we could get another trailer but at the cost of $1000 it isn’t in the budget right now.  Well come to find out Madonna had federal grant money and after applying, we were blessed with a special needs bike trailer which is exactly the one Travis wanted.  It’s huge but Ryan will be able to use it until he is 150 pounds.  I see a lot of exercise in Travis’s future.  We are hoping to bike together every morning after the older kids head off to school and before Ryan’s nap.  It will be great exercise and a fun way for Travis and me to spend some time together doing something we both love.  In fact, here is the trailer right after we assembled it (sorry for the crappy Iphone pic) with a cute little boy who wasn’t so sure what to think of this big contraption.  What a blessing!

It’s a rainy morning but I love it.  There is nothing better than waking to the sound of thunder then spending a bit on the couch in the dark watching the lightning show outside.  I love those quiet moments before the kids wake up.  Ryan has been down and out with another cold for the past two days and didn’t make it to school.  A simple cold absolutely knocks him out; yesterday he woke up at 7:30 and by 8 am he was sound asleep on the couch already and slept all day until 2:45.  He needs to be checked today for an ear infection because these colds go right to his ears.  It’s concerning to me because he will be on his sixth ear infection since October or November if he does indeed have another one.  I don’t want to think about tubes because that means surgery and surgery for Ryan means another bowel obstruction.  So we will see…..one day at a time.  I just don’t want him to have pain.

Brad has been extremely busy with golf when the weather cooperates although he’s spent quite a bit of time out in the rain and cold swinging his clubs.  He’s really enjoying himself but is finding it hard in high school to balance homework, studying, sports and his social life.  It’s a learning curve and I’m sure most other kids his age go through the same struggles of balancing priorities and fun.  Sidney, Travis and I are heading to Kansas City tomorrow after school for another volleyball tournament.  She is so excited and has been packed for three days already.  I’m glad she enjoys the sport and is learning so much about relationships and tolerance in the process.  Like I tell all the kids, life is not fair, you have to learn to tolerate people who drive you crazy and in the end if you’ve learned something and had fun in the process, you’ve figured it out.  I’m sure the kids get sick of me telling them they need to learn now to deal with difficulties and that real life means taking the good with the bad and learning to focus on a cup that is half full instead of half empty.  She is having fun and for that I am thankful.  And sweet Trevor is with his friends all the time.  School comes so easy for him and he is really enjoying jr high.  That boy has matured so much this year and I absolutely love the unique personality he has; he’s a great kid.  Travis and I are doing well and are simply trying to enjoy these moments with the kids.  The older they get the faster time goes by; I don’t want to miss a second of these years because they will be gone in the blink of an eye.

Just thinking about the tragedy in Boston this week is enough to remind all of us that each day is a blessing.  It’s so easy at times like this to focus our attention on all the evil in the world, but I want very much to constantly remember that we live in a fallen world.  These events are the result of sin, but thankfully God paved the way for all of us to find freedom in Him.  It’s through Jesus Christ that we have hope of an eternity full of perfection and beauty.  All of our days are numbered and our job is to trust that our Heavenly Father is in control no matter what the news cast says, no matter how many people are dying from senseless acts of brutality, no matter what threats of war lie beyond the next sunset.  It’s that hope in Jesus Christ, the knowledge and faith that leads me to the conclusion of the story we are all a part of and that is this – in the end, God receives all the glory and He wins.  It’s that simple.  I am grieved and full of sorrow for those affected by selfish, brutal evil in the world, but at the same time, I have to focus on the good that is coming, on the hope of eternity, on the random acts of kindness that occur every day. 

John 10:10 ~ The thief comes only to steal and kill and destroy. I came that they may have life, and have it abundantly.

Colossians 3:2 ~ Set your minds on things above, not on earthly things.

John 16:33 ~ I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.

Romans 8:38-39 ~ For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

All is well here and by the grace of God there is nothing new to report.  We are simply living life together.  Lots of activities, patience with the changing weather and studying.  Lots of driving and working and trips to the grocery store to fill a kitchen that won’t seem to stay full.  Lots of laughter and games and cuddles.

Sidney wrote the following to share at youth group, and I am sharing with you because she speaks from her heart.  From a heart that loves her Heavenly Father.  From a heart that has matured quickly and known more pain than any girl her age should experience.  From a heart that trusts and believes good comes from all things.  From a heart that is gentle.  And pure.  And beautiful.  And fun.  And hopeful.  And full of grace.

I have always grown up in a Christian home. We went to church almost every Sunday and youth group. I had always believed in God but I never knew him as well.

When I really started to know him better is around the time my little brother with autism, epilepsy, and cerebral palsy had brain surgery. Ryan had many surgeries in his 9 years. The time when I really found that I needed God was in 2010 when he had 3 brain surgeries in the matter of 8 days. I thought that something was going to go wrong or that he would pass away. I didn’t really trust that everything was going to go smooth. My mom is a strong Christian and she kept telling me that I just needed to trust God. She kept telling me to pray and that everything was going to be ok. It was at that point that I really realized that I needed God. I started doing my devotions and praying.

From that point my relationship has grown closer with God. Then about 15 months later, Ryan had to have another brain surgery. I was very worried. I figured that if God brought Ryan through the last surgery He can bring him through this one too. But the big question I kept asking myself is why him, why Ryan. I never could figure out why God had made Ryan of all people go through all this. I didn’t know why and I still don’t know why; all I know is that He made him this way for a reason and we just have to love him for the time we have him. Also I found myself constantly coming over this quote, “God gives the hardest battles to his strongest soldiers.” I love that quote because it makes me realize that He gives those battles to people because He knows that they are strong enough to handle the situation.

Another thing that I have learned is that you have to play for God and not for fame or to show off in whatever you do. I feel that I do better when I play (volleyball) for Christ rather than play to look good. For example, before I play, I pray that God would help me to have a good attitude and that I would play for Him. Also, another example is that before I go back to serve I do my routine and then I take a deep breath and say to myself one of two things…Either “Lord help me to get this ball over the net” or the verse Philippians 4:13.  I think it is important to play for God because He gave you your talents and you should honor Him in what you say and do.

I know that my faith isn’t just about me serving God but how God uses me to reach other people in my situations and how I handle what I am given. Also a lot of my faith and trusting God has to do with God giving me my little brother to help me know that I should not take life for granted.

Philippians 4:13 ~ “I can do all things through Christ who gives me strength.”

Isaiah 41:13 ~ “For I am the Lord your God who takes hold of your right hand and says to you, do not fear I will help you.”

There is beauty here in this girl I call my daughter.  And there is strength beyond measure.  I am proud of her, but most of all I am so thankful for her heart that loves Jesus.

Finally some nice weather!  I’m so thankful for the warming temps and days filled with sunshine.  It refreshes my soul.  The kids are counting down until we leave for Folly Beach and get to spend an entire week at the ocean.  I can’t tell you how excited I am to grab a good book, sit on the deck and look out only 20 feet or so to the crashing waves of the majestic ocean.  I am ready to go now!  It’s hard to believe the school year will be over before we know it and the kids will all be another year older.  But before that can happen, I can’t wait to plant flowers and am already excited watching the trees bud and my tulips start to come back to life.

This past month has flown but not a whole lot has changed. Sidney is still in the midst of volleyball tournaments, and Brad had his first golf meet today. Trevor turns 12 on Saturday so tonight he has six great friends over for a sleepover. Right now they are at HyVee picking out snacks which they all thought sounded fabulous because they get to buy whatever they want. You know at this age it’s all about the food! Ryan is doing great and has been healthy now for a couple of weeks. He is as spoiled and spunky as always. It was so sweet to watch Trevor’s friends come upstairs to get nosey kisses from him. One of them ran downstairs and said “I just love getting nosey kisses from Ryan”. It melts my heart.  And here is another picture of our Shih Tzu, Chewie, who is now a year old.  He’s a good little doggie.

This past week has been full of stress and while it isn’t something we want to share with anyone, I can tell you this.  God is good and He absolutely listens to the prayers of those who come to Him seeking His perfect will and plan.  I’ve focused a lot on Isaiah 48:10,17 ~

I have refined you, though not as silver; I have tested you in the furnace of affliction….I am the Lord your God who teaches you what is best for you, who directs you in the way you should go.

I can’t say that I have ever experienced an unknown situation as I did for six days this past week not knowing from one day to the next how God was going to work it out, but in the end, He was faithful and continues to be faithful even today.  I’m at a loss for words (imagine that!) to adequately describe what it was like to fully experience Proverbs 91:4 in a way I have never experienced before.  God truly covered me with His feathers and under His wing I took refuge.  His faithfulness was my shield and rampart. I have been humbled in ways I didn’t know I needed to be humbled which is a good thing.  And this experience, though it tested and refined me, also showed me how very blessed I am to have an army of family and friends who came around me, prayed with me and believed in me.  Just as this saying that sits outside my front door says, my soul has been refreshed.

February is coming to a close which means spring is just around the corner!  I am ready for warmer days, more sunshine, flowers, green grass, cool evenings sitting on the deck, long walks and the rejuvenation of new life that blesses us every year.  February has come and gone rather quickly at our house, and there hasn’t been a lot to speak of in the last few weeks which is fine with me.  I love the saying no news is good news and have enjoyed the mundane routine of the past few weeks.  Over the years I’ve really come to cherish the ebb and flow of routine and normalcy. 

Just this week we have been sadly reminded how quickly the safety and security of daily living can be snatched from underneath us leaving us breathless and shocked.  On Monday a great man and fellow police officer, respectfully known as a gentle giant, passed away while working out at a gym here in Lincoln.  Travis had the great privilege of working with John for the twelve years he was employed by LPD and still kept in touch with him during these past five years.  John leaves behind his wife, Lisa, and three children, Chayse, Hope and Colton, all at home. Lisa has a special place in my heart because years ago when we were starting our journey of hospitalizations, labels, therapy, drugs and all that having a special needs child entails, she came beside me and walked this well-known road with me giving me strength and knowledge for the journey as well as a listening ear.  She and John have walked their own very similar path with Chayse, their high school daughter.  It’s a very tough road to navigate and now she must do it alone.  I can’t imagine parenting alone and my heart goes out to her and their three beautiful children.  Please pray with me that in the days and weeks and months ahead Lisa and the kids will feel the love and comfort of family and friends, but more importantly that they will rest in the loving arms of our Almighty Father.   

Ryan has been sick this week and hasn’t been able to go to school.  He’s had a fever, runny nose, harsh cough  and is gagging a lot.  He isn’t eating and has been sleeping most of each day away.  His fever broke yesterday but today he took a six hour nap and is now sleeping again on the couch.  Whatever he is fighting is sapping him of energy which is usual for him.  With all his seizures his poor little body just doesn’t have the reserve to fight an infection without being completely exhausted.  We did take him to the doctor on Monday and he was started on another antibiotic for his fifth ear infection in six months; the meds are probably helping whatever he is fighting.  I’m pretty sure most of this is viral though since his lungs sound clear and (thank God!) his bowels are still active and have not slowed down any more than usual.  He has been pretty uncomfortable today crying this morning and again when he woke from his nap and even now as he sleeps close by, I can hear him letting out little whimpers in his sleep.  It breaks my heart when he is sick but he is certainly getting lots of attention – a little too much for his liking.  We were suppose to take him to Omaha today for an appointment with the neurologist but chose to let him sleep instead.  Now that we have him on palliative care there isn’t anything new or pertinent we missed anyway with the doctor.  When he is ill I have to continuously place him back in the arms of God because we have been told many times over the years that it will only take one illness to send him over the edge and that has become my biggest worry and fear.  It’s very easy to let my mind slip to that dangerous place where I think of all the things that can go wrong and how lucky we have been so far to avoid any major events with him.  The battle for control of my mind rages at times like this and it takes everything in me to stay focused on God’s goodness and provision.  Tomorrow is a new day and I’m trusting my Faithful Father not only to bring healing to Ryan’s body but also to my mind.

Every day is a gift as so many of us have been reminded this week with the loss of John Clarke’s life.  And today I’m thankful for just that – the gift of today.  No matter what tomorrow looks like whether the sun shines or not, I’m gong to choose to be thankful for the blessings of health, family, friends and a warm place to call home.  Because at the end of the day it’s not about all I have accomplished but about trusting in a God who is so much bigger than what I can grasp.

Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ~ Matthew 11:29

 The LORD is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever. ~ Psalm 23

Travis and I were laughing today as he said “you are turning into me” in reference to his tendency to be upset but not know why.  Last night that’s exactly where I was.  I’m usually very on track with my thoughts and emotions, able to precisely vocalize exactly what I am feeling and why.  Not last night.  I started blaming Travis for a bunch of very minor, menial things that made absolutely no sense and had nothing to do with anything. Then as we laid in the darkness of the safe haven of our room, my tears streamed fresh and warm down my cheeks, soaking my pillow and Travis’s loving arm.  I’ve been so good at keeping my nurse hat on, dealing very matter of factly with the choice we made to put Ryan on palliative care.  I so quickly and easily convince myself that I am strong, am confident in my decisions and know exactly what and why I am making a choice.  Yet at the same time, my ever-increasing ability to hide my feelings, fears and fragility collides harshly with the stoic demeanor I so easily and quickly grasp.  I tend to call it self-preservation but deep in my soul I know its real name is fear.  And that fear can so easily and quickly overcome my heart and mind.  Last night I needed to grieve.  And today my heart is still grieving.  And tomorrow and for days to come I will continue to grieve because I have come to the end of my strength, the facade of strength that I easily throw on.  Deep down I am not strong.  I am human.  And in that humanness I am tender, fragile and very simply stated, a mom who loves my children with an unexplainable emotion that I will never be able to express with words.  And that love for my Ryan  has a twist, a layer, a chord that is even stronger and deeper than my heart and mind can wrap around. 

When I signed up for this parent thing I never imagined one day I would sit here saying the end of our fight has come.  I didn’t think I would tell a medical professional to stop trying to fix my child.  I didn’t comprehend the loss of life saving, medical advancing options.  Yet here we are.  We’ve made the decision out of love for our child. Out of hope for his eternal perfection.  Out of peace for everyone in our home.  Out of the opportunity to continue to love and spoil and dote on our perfectly broken boy.  But man is it hard.  My heart aches for normalcy and freedom from medication, therapy, special education, braces, medical devices and tubes and labels.  Yet in the same breath I can say I would never change a single thing about my Ryan because he has captured this world exactly as God intended him to do.  His mark is felt by so many.  His legacy will be full of redemption and overflowing disbelief for how strongly he has faced every day.  His body will fail him but his soul will live on.  It’s that eternal perspective that gets me through every day, every hardship, every worry, every tear and every difficult decision.  It’s the very core of my being, the very core of my husband and my children’s beings.  It’s what drives us to love and cherish every single day.  So on these days when I feel so overcome with emotion, when my heart feels broken, shattered and frail, I remember verses like Psalm 91:4 that says:

He will cover us with his feathers and under his wings will we take refuge; his faithfulness will be our shield and rampart.

It’s such a beautiful picture, and I focus on it so very much.  Every day I remind myself that this world is temporary and only a the blink of an eye in comparison to our time in eternity with our Heavenly Father.  I can’t wait to get there.  I can’t wait to see my sweet boy running and jumping and laughing and free.  I can’t wait to hear him say “I love you, mommy” and be able to count to a hundred.  To hear him spell words like apple and cushion and freedom.  I can’t wait to see him free from scars and seizures and feeding tubes and braces and weakness.  And I really can’t wait to watch him play football with his siblings and daddy.  God’s plan is so perfect and while I have the wonderful hope of a glorious eternity with those I love, my heart still feels the searing pain and sadness of today.  I have no idea what any of our tomorrows will look like.  I never imagined any of the tomorrows of my past would look like they have.  But no matter what each day held in those days, no matter what each day holds in the tomorrows  to come, my heart overflows with thankfulness that my job is not to worry about those days but instead to hold fast to the truth that centers and steadies the very core of my being.  And that is simply this – God is good all the time.  Through heartache and blessing and pain and laughter and success and failure and disappointment and beauty.  He is good.  He is faithful.  He is loving.  He is truth.  So with those thoughts parallel to the hurt that fills my heart and mind, I am able to boldly and cheerfully proclaim I Thessalonians 5:16-18:

I will be joyful always, I will pray continually, I will give thanks in ALL circumstances because this is God’s will for me in Christ Jesus.

Good morning!  Today is supposed to be sunny and beautiful here in Nebraska with a high of 50 degrees.  I’ll take it! 

Everyone is heading back to school today thankfully.  Travis started the weekend out with an influenza type virus and is still coughing a lot, and then Sidney came down with it.  She missed three days of school but is healthy and back in her routine today.  And best of all she has finally been cleared to play volleyball again after three weeks sitting out.  I’m sure you can imagine her excitement since she lives, eats and breathes volleyball.  The older boys and I have so far escaped getting sick, and hopefully we will stay well.  Sweet little Ryan has missed the last two days of school.  Tuesday he was having lots of tummy pain and ended up sleeping for 6 1/2 hours straight during the day.  Then yesterday he was having way too many seizures when I tried to wake him up to get ready for school so instead I just let him sleep which is what he needs when he clusters so much.  I had to take Sidney to see the doctor and had him check Ryan’s ears.  Sure enough he has another ear infection.  As our doctor said “this guy just doesn’t act like he’s in pain” and he doesn’t. Thankfully I can read Ryan well enough to know when something is off and when I follow my gut I’m almost always right with him.  His seizures are the same – frustrating and frequent.  What bothers me the most are the myoclonic jerks that throw him to the floor because they are so strong.  Just this morning he came into the kitchen and grabbed my hand because he wanted to go back to bed.  And as he took my hand he had a massive seizure that threw him to the floor; it amazes me that he hasn’t broken his arm or slammed his head into anything yet with how strong they are.  Every time he sits there on the floor and cries with big alligator tears streaming down his face.  This type of seizure scares him and it makes me want to scream I get so frustrated knowing I can’t do anything to stop them.  Such is life for little Ryan but it really breaks our hearts to feel so helpless. 

The kids are all going to Dare 2 Share this weekend with our church youth group; this is Trevor’s first time and he is taking a friend. Please pray for Trevor’s sweet friend who had been attending youth group with him and several friends.  He and Trevor have had lots of talks about salvation and what it means to be a Christian.  Every year they come back having learned so much and have been challenged in their faith. It’ a wonderful ministry. 

Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesians 3:20

I didn’t realize I hadn’t posted pictures from November on the blog.  These pictures were so fun to take, and we have been thrilled with the way they all turned out.  They all speak of the love we have for each other and will be pictures we treasure for years to come.  This is honestly the very first time we attempted family pictures when I left with a smile instead of tears running down my face from frustration and the let down of not getting that “perfect” picture.  I think family pictures outside where Ryan had the freedom to walk around instead of being confined to a small space is what helped us get that perfect picture I’ve been waiting for. 

It’s snowing outside and Ryan is happily sitting at the table eating cheese watching the big flakes fall to the ground.  He is so easily entertained, and boy has he been eating a lot lately!  He’s getting a little belly which I am certain will disappear when he shoots up a few inches soon.  Trevor and Brad have been great with nothing new to report, and Sidney hurt her knee a couple of weeks ago and had an MRI done last week.  Thankfully she did not tear anything so she will go through some physical therapy and hopefully be back at full speed by her volleyball tournament in two weeks.  She has missed a week of practice and will not be able to participate in her first tournament this coming weekend but she will be just fine. 

I had a fun birthday on Friday; we went to Omaha and ate dinner at pfChangs with my best friend’s family then she and I headed to a hotel for a girls night and stayed up til 4 am talking.  I am already looking forward to spring when I can fill all my pots with colorful flowers.  I get antsy after the first of the year for the next season to come but am well aware we have a lot of cold days ahead before I’ll get my wish! 

Enjoy your day!

This month is already flying by and I’m not quite sure where the days have gone.  The kids are all going great in school getting all A’s and 1 or 2 B’s which is a blessing.  Neither of the boys are in sports right now but Sidney is full force in volleyball.  Unfortunately she hurt her left knee this week and had to see an ortho doctor Friday; she is now scheduled for an MRI tomorrow morning to see what is wrong.  She is also on crutches because she has such a hard time full weight bearing on that leg and her quad muscles are so weak her knee is giving out on her.  Needless to say, she is devastated at the thought that volleyball might be over for a while; she really loves her club and has a lot of tournaments coming up. 

On Friday Travis, Ryan and I went to Omaha for a palliative care consult at Children’s Hospital.  I talked about this in the last post, but let’s just say is was an emotional meeting but very good.  We were there for two hours, at first meeting with the doctor and a nurse then in a conference room with seven other people.  We talked about everything from our goals for Ryan to how long we think he will live to how we want things handled should a crisis occur.  It was a very frank conversation and one we have never had with a medical professional before.  Most people avoid the topic of what Ryan’s future might look like but in this meeting it was discussed in great detail.  What struck me the most was the doctor, who works in the PICU, said several times that he has never seen a child like Ryan.  He expected Ryan to be a vegetable saying most kids he sees who have the extensive seizure history Ryan has with over 16 medications tried, four brain surgeries and 25% of his brain removed would not even be alive by now and if so, they would be vegetables.  It was a shock to hear because I don’t think either Travis or I had ever considered how much worse he could be.  They all simply couldn’t figure out how Ryan can be walking and functioning with all the seizures and brain damage he has.  He is definitely living life on his own time table and as we keep saying, he has changed the world exactly as he was sent here to do.  He is exactly as God intended him to be and when our Heavenly Father decides to take him home, he will do it.  Until then, we are now able to focus on Ryan’s quality of life without feeling pressure or guilt because we won’t try new things or revisit old meds and diet changes as we have in the past.  Now we have an army of advocates behind us who will rally around us and communicate to the other doctors letting them know our wishes and goals for Ryan.  So when the next procedure, surgery or hospitalization is necessary, we will have the support we need around us. His seizures are definitely getting worse and the tonic clonic seizures are so strong now they sometimes knock him to the ground.  I love this passage because it says exactly what I believe to be true ~

Ecclesiastes 3:1-14

There is a time for everything, and a season for every activity under the heavens: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to  laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace.

What do workers gain from their toil?  I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.  I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil — this is the gift of God.  I know that everything God does will endure forever; nothing can be added to it and nothing taken from it.

Otherwise things are good. Life just marches on whether we want it to or not.  I’m looking forward to spring and planting flowers already although I know we have quite a bit of winter to get through.  Once the new year finds us, I start getting excited for things to liven up and for all the beautiful colors that are coming.  And we finally have our summer vacation plans ironed out.  Originally we were going to spend a week in Rodanthe, NC, part of the Outer Banks, but we heard last week that the house we rented will not be repaired in time due to the damage it sustained from Hurricane Sandy.  So in our rush to find another house, we ended up moving our vacation to Folly Beach, SC, about twenty minutes from Charleston.  There will be more to do and from what I’ve heard, Charleston is a beautiful city to visit.  Thankfully we were able to find a beautiful house right on the beach so we can sit on the deck and see the kids playing in the ocean right in front of the house. It’s always been a dream of mine to stay in a house directly on the beach so I am really looking forward to this time away from the real world. We are going with my dad and stepmom and also taking Lyndsey, our respite provider, with us.  When we want to do something with the older kids that we know Ryan won’t be able to handle or if we will be outside all day, Lyndsey will be there to stay with Ryan so the rest of us can go have fun. She knows how to handle all the medical stuff Ryan needs and we completely trust her.  She is like family anyway and I’m sure we will all have a blast relaxing and finding fun things to do.  I’m ready to go tomorrow!

We still have all our fortieth birthday decorations hanging in the house since we had a wonderful party last Saturday organized by Sidney.  There were around fifty people here and we were blessed with such wonderful company.   I have to give a huge shout out to our parents for helping Sidney with all the food and decorations. Thank you! My birthday is Friday so there is still one more birthday to celebrate then we can move on to something else and take down all these decorations that remind me how old I am getting!  I can’t wait for the girls’ night I get on Friday with my best friend.  Our families are going out for dinner in Omaha then Shell and I are heading to a hotel to talk, laugh and cry all night.  It will be fun and the last time we did this we didn’t go to bed until 5 am! 

Thank you again for your support of our family.  We covet your prayers and are blessed by your kind words and gracious hearts.  You are all loved!

Happy New Year!  The last couple of weeks have just flown by.  We had a good Christmas and New Year, and the kids are enjoying their winter break.  We have one more Christmas to celebrate in Iowa this coming weekend with my dad.  Brad is flying to Colorado this morning to spend six days with his best friend, Nathan, and his second family.  I’m very excited he gets this opportunity – not as excited as he is! – but also very nervous to put him on a plane by himself.  It’s probably a good thing Travis is taking him to the airport and not me because I’m sure I would cry and that would make  Brad more nervous.  So instead I’m at working counting down the hours until he leaves and then I’ll be staring at my phone waiting for him to call and say he is safely with the Peeples.  I know they will have a wonderful time and are going snowboarding too which will be a first for Brad.  Sidney and Trevor are doing well and enjoying time with their friends over the break too.  And Ryan is the same.  He’s still having lots of seizures but is full of nosey kisses and loves his new toys from Santa. 

As we head into a new year, we are facing two birthdays with Travis and me both turning 40.  I know, old!  Travis just had his birthday last week; we celebrated the day with his parents eating too much, going to see Jack Reacher, playing games and watching a movie on the couch.  It was actually a really nice day and Travis said it was a great way to turn 40.  Our sweet daughter is throwing us a 40th birthday party on January 12th at our house (I turn 40 on the 25th) with the help of family and a couple of friends.  This was all her idea and she has done all the planning which is pretty amazing for a 13 yr old; she is a gem and so very thoughtful.  I still can’t believe we are both turning 40 but here we are.  So with a new year and a new decade, we’ve decided this is the year to be healthy. That’s our focus as a family for the year – to be healthy, eat well and exercise.  Travis and I both need to lose some extra pounds and want to be a good example for our kids.

And speaking of kids, sweet Ryan is hanging in there.  He is oblivious to holidays, opening presents, celebrations and such.  This year we are focusing on his quality of life and keeping him happy and healthy.  We are looking into palliative care for him and I will call Children’s next week to set up an appointment.  Palliative care  on their website is defined as this:

The diagnosis of a child’s life threatening or life limiting illness can thrust a family into a maze of confusing medical terms, fear and heartache. Children’s Hospital & Medical Center recognizes the difficulties these families face and offers Hand in Hand, a palliative care program. Its team members work together with families in decision-making and support for physical, emotional, social and spiritual needs. The program seeks to prevent and relieve distress and promote best quality of life for patients and their families throughout the course of illness.

If you chose to participate in Hand in Hand, your goals and wishes for your child and family will be honored and incorporated into all care. Our purpose is to assist you in enhancing the quality of life for you and your child. Our multidisciplinary staff will offer comprehensive and compassionate care for the entire family.

It goes on to say the following which is exactly where we are at right now with the decision to not try any more medications because the negative affects of the meds outweight the chance of anything positive coming from them.  So instead we are doing what we can to focus on his happiness and the emotional health of our family to face whatever comes next.

Doing To and Doing For

When treatments and decisions get complicated there is a question that can be helpful. “Does this treatment do something for my child, or do something to my child?” This question recognizes that sometimes a treatment may be medically possible, but doesn’t really help the child overall. For example, it may be possible to straighten a child’s bone, but if they will never use their arm or leg for other reasons, the surgery may not make sense. With each treatment, in addition to asking about harms and benefits, you can ask if it is doing something for or to your child. 

http://childrensomaha.org/HandInHandDefined

So pray with us and for us please as we try to figure out what is the best approach to Ryan’s health care that will meet his needs and also maintain a good quality of life for him.  We know his seizures are malignant and control is out of reach as it has been for a long time; we simply want to enjoy the life he has, the life we have together and make the best of every day.  It’s a very emotional decision to make but we know with our Heavenly Father leading us, it will work out as it should.  And please, do not take this the wrong way and think we are putting him on hospice and buying a grave site.  It couldn’t be farther from the truth.  We hope we have many wonderful, happy years ahead with him and are simply looking into making sure his symptoms and quality of life are managed and kept as our first priority.  Palliative care is NOT hospice!  It is a new way of approaching his health care from here on out so instead of looking for the next medication or procedure to try and instead of looking into experimental trials (he’s not a lab rat) we are simply going to treat symptoms and pain and any other complications that arise. 

This is the day the Lord has made; let us rejoice and be glad in it!  ~ Psalm 118:24

The past two weeks have absolutely flown by.  I find myself often wondering this time of year why we have to celebrate Thanksgiving and Christmas so close together. I love fall decorations and preparing for Thanksgiving then in the blink of an eye it’s gone. Then it seems we just get the last decoration hung on the tree, the wreath on the front door, the poinsettia on the table and the cookies baked and ready to share with friends and neighbors and then it’s all over and time to disassemble everything.  I wish we could put the tree up, leave the decorations and have a good two or three months to really ponder and celebrate Jesus’s birth and all it represents for us – salvation, grace, the hope of eternity.   And in light of the tragic events from yesterday, that hope of eternity is something I treasure.  Simply opening the msnbc.com app on my phone this morning brought link after link to stories of murder, suicide, child abuse and injustice.  What a fallen world we live in, yet I am so very thankful all this terror and grief is not the world we belong in but simply our temporary home.  God bless the families and loved ones affected by yesterday’s tragic events.

The kids are having fun Christmas shopping and getting ready for the holidays.  I have now made 16 dozen peanut butter balls, the first 5 dozen quickly eaten by the kids, their friends and some that were given away.  The last 11 dozen are in a huge container in the basement fridge with duct tape around it to keep everyone’s little fingers out.  I still have a long list of other baked goods to prepare but I don’t like to do it too far in advance or they don’t seem fresh.  Last year I was terribly depressed and didn’t do much baking at all, but this year I am feeling great and ready to put my Christmas baking spirit on!  And December also means birthdays around here.  Brad turned 15 last week and has been doing a lot of driving already.  He’s doing a great job and loves to get ahold of those keys every change he gets.  And in only 14 short days, the big man in the house will be 40 yrs old!  That’s right, Travis is starting a new decade and then I will soon follow in January.  I distinctly remember standing in my mom’s bedroom watching her fix her hair and talking about how old she was – 36 at the time – and thinking she was OLD!  And now we have surpassed her.  I get it now when people say they don’t feel their age and that age is a state of mind.  I really get it!

Well, we finally came to the conclusion that we are done trying new medications with Ryan.  It’s a very emotional decision to make because we don’t want anyone to think we are giving up on him, which we are not.  And besides, it shouldn’t matter what anyone else thinks because he is our son and no one else could possibly love him as much as we do.  But the Sabril isn’t working.  In fact, we can’t even get him to a sixth of what the therapeutic dose starts at because his body just can’t handle it.  He was like a zombie sleeping all the time, spacing out and falling over to the right when he would sit down.  We tried twice to increase the medication and it simply didn’t work.  Even the Sabril scientists didn’t know what to say because they’ve never had a child on the medication who is missing one forth of his brain so they can’t say how Ryan’s body should react to it.  We then discussed Potiga which is a new drug for seizures but this drug also has a lot of possible side effects like urinary retention and hypertensive crisis.  We’ve known for years he is a medical failure with medications  and just can’t justify putting him on any more drugs that have only a  minute chance of even helping and then for how long?  So the decision is made and unless science can come up with some other procedure or device that can give any hope of decreasing seizures, we are done.  No more surgeries, no more new meds. We will leave Ryan on the six seizure medications he has been on for years and continue to use the emergency drugs he needs and take what comes.  As you all know, he is spoiled rotten, loved beyond words and very well cared for.  He’s happy and giggly and changing the world exactly as God wants him to.  And for that we are so very grateful.  He is a joy that is indescribable and provides so much love and grace for our family.  God has been so good to provide everything we have needed on each step of the journey with Ryan and we know He will continue to guide us in the days and weeks and years ahead.  It’s been an emotional week thinking back to everything we have done to try to stop this terrible monster that strikes our son repeatedly every day, but in the end we have to very simply place him back in the arms of God and receive the blessing that comes with the pain, enjoy the love that comes with the heartache, take in every smile that comes with the seizures and remember that God promises to never leave us or forsake us.  I don’t need more than that.

November 2012

The Christmas tree is up, the house is decorated and I have started my Christmas baking. This is a beautiful time of year. Ryan’s seizures seem to be increasing which breaks my heart, but the ups and downs of his disease have become pretty normal around here. He’s also on his second ear infection in three weeks, opposite ear this time. Otherwise he is as loved and doted on as always. The older kids are wonderful and doing very well. They are normal kids who eat a lot and don’t like to pick up their rooms but they are a joy. Travis and I are doing well and trying to get everything accomplished and planned for the next month, trying to enjoy every moment of the holidays. And I might say, both thinking about the face we turn forty within three weeks of each other, Travis at the end of the month and me in January. I remember thinking how old my parents were in their mid-thirties and how old forty sounded. And now we are here. I saw this poem and loved how it ended so I thought I would share… 

The Twelve Days Of Christmas Special Needs

 On the first day of Christmas, the good Lord gave to me: a child with special needs.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with special needs.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with special needs. On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with special needs. On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs. On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a special needs.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride and courage, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride and courage, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with special needs.

 And that’s exactly what I did Thursday night at our church’s women’s Christmas event. There were three of us who shared our stories, and it was an honor to be one of them. I’ve always believed God gives each of us a story to share, and I am happy to share mine. If one life is changed because of Ryan and the rest of our family, we’ve done our job. And if my journey can encourage someone, then it’s definitely worth telling. This isn’t about me, but about allowing the Holy Spirit to work through me to reach others. One of the things I shared is something I realize I’ve never spoken of before, and I want to share it with you also.

In September 2010, Travis was an elder at the church we were attending at that time. We had a pastoral candidate and his wife in town for the weekend, and before they left we had a big dinner with them that included the rest of the leadership of the church. At some point, the pastoral candidate’s wife, Melissa, came up to me and said she had something to tell me. Now you need to understand I’d never spoken to Melissa, we had no idea who each other was, had never had any contact of any sort. She went on to tell me that while they were flying to Nebraska she was praying for their visit, meeting everyone at church, for peace about the visit and for God’s will would be done with them getting a job offer or not. She said while she was praying, God spoke to her, and this is what he said that she wrote down and told me at the dinner.

While you are there look for Kim. Embrace her tightly. Encourage her with my love. Let her know I see her. Her hopes, her longings, her disappointments, her hurts, her struggles. I will lift her up. I will lift her up.

To this day, more than two years later, it still makes me tear up realizing how much God loves me that he would use a godly woman whom I had never met to speak so personally and directly to me. You have to realize too that this was less than two months before we took Ryan in for his three brain surgeries in eight days at UNMC. Most of you walked that road with us. The emotions I was facing at the time can’t even be put into words. So to hear the voice of God so directly through a woman who became a dear friend when she and her husband moved to Lincoln has remained very precious and dear to my heart. And this is what I talked about during the women’s event. Those moments when God so softly speaks to us, sometimes in the darkness when we are crying out to Him as he did when he told me years ago about Ryan, “He is as I intended him to be”. And four years ago when I kept seeing Travis kneeling at our bed with his Bible open. One day he came to me and said through tears, God keeps telling me “quit and don’t look back”. He then went on to leave the one job he loved, that he had dreamed of doing since he was in seventh grade. Those were tough times as we struggled with understanding what and where God was calling us. He was the only one working full-time to support a family of six, and we had no idea how we would pay our bills. And in the end , He was calling us to simply to be faithful and obedient. I can’t say the last several years have made any sense to me in the direction God has called us to go, but I’m confident He isn’t done. That He is moving and preparing us for something bigger than our dreams, something He will take delight in as He trusts us to do His perfect will with the gifts, abilities and dreams we have, which through our brokenness God is using somehow. As I shared a quote from Sheila Walsh that night, it reminded me again that my job is not to make sense of the events of my life but instead to find joy in the midst of every single day no matter how good or bad that day may be, no matter how much grief and fear I may be experiencing, no matter how high the highs or low the lows. And she said ~

All I have to offer anyone is a life surrendered to Christ so that his beauty and grace shine through my brokenness.

And as I was praying about what to share Thursday night, as I planned and kept practicing my talk, I once again was filled with that beautiful sense that God was again speaking to my heart. And this time he said this ~

You are doing what I’ve asked you to do. You’ve been faithful and trusted me. I’ve showered you with grace because I love you.

I don’t know about you, but I am convinced that nothing can separate me from the love of God. What a sense of security that brings knowing this life, with all its failures, fears and changes, is simply just that. A life.  A short time when we can either  focus on ourselves or spend our time loving others, giving of ourselves, doing what God has called us to do in spite of our own dreams, ambitions and plans. I can’t live this life without my salvation and knowing God has a bigger, better plan than I could ever dream. He never promised it would be easy but He continues to promise He will never leave us nor forsake us. He is a loving God and I’m thankful for the opportunities I’m given to share my story which is simply His story of forgiveness, grace and joy.

This girl makes me laugh!  She knows how to have fun, loves to laugh, and is just a genuinely sweet girl.  I’m thankful for our close relationship and that I get to be her mom.  She is the princess of the family and very loved, no doubt!

These two silly boys melt my heart.  They both love to goof off (this is the Travis McClintick family so what else do we do?!) and have a close relationship.  I’m thankful for boys who have learned early how to take care of a woman, who open doors, use their manners and take the time to say I love you, mom, without embarrassment.  I still get those hugs and love you’s in front of their friends which I cherish.  They are getting so old but I enjoy them more every day.

Then there is this little man who loves to chew on socks.  I love this picture because it is “so Ryan”.  He’s 9 years old now and has taught me more in his short little life than I could ever learn in a whole lifetime without him.  God has blessed us with a very simple boy who is doing exactly what God wants him to do – teaching people God’s perfect will comes in many shapes and sizes, His love abounds to the broken and His mercy to face each day, no matter how big or small the struggle, is endless.  He’s a good God who has given us a very loved, spoiled and doted on little boy who is “exactly as I intended him to be”.  Thank God for His still, small voice that speaks to us when we most need to hear it.  My perfectly intended little boy is moving this world in ways I could never imagine possible. In spite of endless seizures, he is content.  He is my heart in a way words will never express.

Then there is the love of my life, my silly, can’t be serious for five minutes best friend whom I can’t fathom walking this journey without.  He is my heart through and through and the love I have for him and with him is something I cherish every single day.  I respect this man for all he has accomplished and endured, for his faithfulness to our family and his hard work ethic over the years to provide for us.  He is wise, intuitive and a man of great character.  We’ve faced a lot over the past eight or nine years and I can’t imagine not having him at my side to hold my hand through it all.  He has a heart of gold and is a gem;  I am so very thankful he is God’s gift to me. 

Be joyful always, pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus. ~ I Thess 5:16-18

This Thanksgiving, and every other day of the year, I am thankful for health, for stability, for God’s grace , for the ability to walk, talk and love.  I’m thankful for friends who know my heart and love me as I am, for a job I love and the opportunity to use my skills and talents there, for family who puts up with me, challenges me and believes in me, for a warm bed to lay my head on every night, for transportation, for the finances to put food on our table and buy my kids new shoes.   I’m thankful for Diet Coke, new recipes, a warm and cozy blanket, a good book and the time to read, curly hair, laughter, photographs, finger nail polish, the sound of rustling leaves, Watkins Vanilla, fun socks and dancing with my kids.

Happy Thanksgiving to you all!  ~ Much love from the McClintick’s ~

This week has been hard but at the same time full of joy.  Sometimes I kind of laugh at myself because of my conflicting emotions.  One minutes I’m going through the motions not really thinking about how this or that circumstance or my actions and words affect those around me, how they affect my spirit and my mood.  But then I have moments of complete reflection, looking back at all I’ve overcome in my 39 years, all my family has been through, how the choices I’ve made have influenced the circumstances of my life today.  And as we all have those decisions and moments we wish we could change or wouldn’t ever want to experience again, there are so many that are worth remembering, worth sharing, worth keeping close to my heart.  I was asked this week to speak at our church’s women’s Christmas event at the end of the month so for the past two days I’ve been thinking a lot about what to share, what God wants me to share.  I love to speak about Ryan and all that has happened in the past nine years because it’s such a strong reminder and testimony of God’s goodness in the midst of heart ache and struggle. I’ve experienced how He continues to provide for our every need, how He holds us in the dark moments, how He continually reassures us He’s got the future figured out.  It’s a blessing and a privilege to share the good news of God, the hope he gives, the promise of eternity after we accomplish the work He has for us here on earth, the gift of joy in the midst of difficulties, the reminder that in spite of circumstances and heart wrenching times He is still on the throne. 

Sidney made the volleyball club she was hoping to play for this winter which is exciting.  She throws her heart and soul into volleyball and relishes the opportunity to play and do it well.  Right now the club is in the process of separating the girls into teams so she had two 2 hour practices this week and next week has two more.  Would you pray for her?  She is struggling with the fear of being put on a team where she won’t be challenged.  She has been on teams for several years where she has been the best, or one of the best, players and hasn’t felt challenged.  She has been frustrated by the lack of competition and effort some of the players have given.   And now as she starts with a new club, she is hoping she will be on a team where she is the one challenged and has the opportunity to give it her all and sharpen her skill.  So tonight as we came home from practice, she was in tears because she felt like she was playing with girls who “wouldn’t dive for the ball or move their feet, they just stood there”.  She’s worried she’s going to be put on a team that isn’t very good.  Sidney simply needs a good thing right now.  She needs a blessing. She needs an answered prayer.  She told me tonight through tears, “God just doesn’t seem to be listening because he isn’t answering any of my prayers”.  Can I just say how heart breaking that is as a mom to hear from your child?  How do I adequately explain that God doesn’t always give us the desires of our heart?  I can say she realizes her volleyball skills come from God; she thanks him often for the gift of athleticism.  But like I said, she needs a good thing right now.  She’s struggling with fear because of Ryan’s condition.  These kids aren’t stupid; they know exactly what is going on with their brother.  They feel the same pain, the same worry, the same heartbreak Travis and I go through as we watch Ryan very slowly decline.  And it’s so hard to see my kids endure such pain.  I can’t even put into words how difficult it is.  As much as I know beyond a shadow of a doubt that God is good all the time, Sidney doesn’t have the eighteen years of marriage behind her that I have with the difficulties I’ve experienced to be able to see that life is hard but God will always provide. She couldn’t possibly have an adult perspective at thirteen years old.  She needs an answered prayer.  So please pray with me and ask God to bless her with a volleyball team that challenges her.  God knows her heart and I have no doubt he will provide what is best.  But he also tells us in Matthew 7:7 –

Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.

The other boys are doing well.  Such sweet kids who are incapable of doing the dishes without being asked, who can’t seem to find the laundry basket every morning, who leave clothes on the bathroom floor and dishes in the basement.  There are those conflicting emotions again.  Love them to pieces in spite of their inability to pick up after themselves without being nagged reminded. Is it a boy thing?  It is at our house.

Sweet Ryan is having a rough week.  The poor little guy has a cold and as usual for him, that means an ear infection to go with it.  It’s a package deal for Ryan.  Last year at this time he got a cold and ended up in Children’s Hospital for a few days with his first ileus.  His stomach and intestines like to slow down or completely shut down when he gets a cold.  He’s been crying in pain for the past few days.  It’s simply heart breaking because he has a very specific cry for pain and we’ve heard it too much.  So after a visit to the doctor today he is now on antibiotics and even has impetigo because the cold and ear infection must not have been enough.  And as I said last week, Ryan has officially started that “last ditch drug” Sabril.  I have to say it was really hard to get the scissors and cut that first little packet open.  As I sprinkled the medication into some water then stirred it up to put in Ryan’s feeding tube, I remember thinking, “this is it”.  Modern medicine is always coming up with something new, but I have honestly lost hope in the medical opportunities we have for Ryan.  Oh sure we can put him in experimental trials but I’m not about to do that to him. We can revisit old medications that have failed, but really, what’s the point?  Another disappointment and slap across the face reminding me that his seizures are malignant.  Then comes the worry as I sit and fret over what is next.  How long will it be before the seizures come back in full force when this drug fails just like all the ones before it failed?  How long do we have before he stops walking, stops smiling and making eye contact, stops interacting with us.  Boy can my mind get the best of me.  But the truth, that conflicting emotion, is a promise from my heavenly Father that Ryan is exactly where he should be…resting in the arms of our loving, capable Father.  I see him there when I close my eyes at night.  I sense His presence when I sit next to my boy on the couch.  I remember all the verses in the Bible about God’s goodness, His sovereign will, His mercies that are new every single morning, His love that knows no limits.  And then comes the peace.  It’s then I remember my job is not to figure tomorrow out; my job is to trust.  To remember God knew from the beginning of time this would be hard.  He also knew we’d need a lot of reminders of His goodness, of His grace.  We’ve seen it, felt it, experienced it in so many ways from hearing the tender voice of God and receiving His goodness through the blessings from others.  The Afters sing a song with some amazing lyrics that absolutely cuts to the deepest parts of my being.  It’s truly my prayer of thanksgiving and hope.

Waiting for the sunrise
Waiting for the day
Waiting for a sign
That I’m where you want me to be

You know my heart is heavy
And the hurt is deep
But when I feel like giving up
You’re reminding me
That we all fall down sometimes
But when I hit the ground

You lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go
You lift me up when I can’t see
Your heart is all that I need
Your love carries me so I’m letting go

You lift me up with your love
You lift me up with your love
You lift me up with your love
You lift me up

I know I’m not perfect
I know I make mistakes
I know that I have let you down
But you love me the same

And when I’m surrounded
When I lose my way
When I’m crying out and falling down
You are here to

Lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go
You lift me up when I can’t see
Your heart is all that I need
Your love carries me so I’m letting go

I can see the dawn is breaking
I am feeling overtaken with your love
With your love
I don’t know what I can offer
In this moment I surrender to your love
To your love

You lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go

You lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go
You lift me up when I can’t see
Your heart is all that I need
Your love carries me so I’m letting go

I can see the dawn is breaking
I am feeling overtaken with your love

So as Ryan continues to seize, as we see new seizures this week, as he appears weaker than usual, as he sits slumping to the right and drooling down his chest, as he struggles more to get in the car and in his bed, He’s lifting me up.  He’s carrying me with his love, He’s wrapping his arms around me.  What could be better than to trust the One who has everything covered, who never worries but longs for us to trust Him with every tomorrow.  He’s a good God and I believe that even in the midst of trying times, in the midst of tears and sorrow, in the midst of an unknown future, my Savior can be trusted.  That’s all he requires of me.  Authentic faith.

And so we welcome November….I can hardly believe autumn, the time change and the beauty of the falling leaves have arrived.  This is my favorite time of year and I am enjoying every minute before the ice and snow arrive.  October left with bowls full of candy and costumes piled up in a heap on bedroom floors.  And this month we look forward to family pictures in less than two weeks and my older sister and her family visiting from DC for Thanksgiving.  What a blessing it will be to have both my sisters at my side.  We’ll have lots of fun and are even going Black Friday shopping together.  The cousins have not all been together for three years so it will be wonderful to hear them all screaming and laughing together.  I can hardly wait! 

This past week hasn’t been the best around our house as I’ve been suffering from terrible headaches and neck pain for nine days now.  Today I actually feel human again and think maybe I’m finally on the mend.  I still have a small nagging headache but compared to what it’s been for the past week, I’ll take this.  I’ve not been one to suffer from frequent headaches but this has knocked me on my butt.  I have wondered more than once if I actually have meningitis based on my symptoms but haven’t gone to the doctor because there is no point to put myself through tests when there is nothing anyone can do to fix it.  And maybe it’s just been some other funky virus.  Either way, I’m on the mend finally and will be glad when I don’t require twelve to fourteen hours of sleep every day!  My family has put up with me long enough and today Sidney said “mom, I can tell you are feeling better because, no offense, but you aren’t so crabby”.  I’m thankful for my health and the ability to keep working and doing stuff around the house in spite of feeling awful.    Everyone else is doing well.

And Mr. Ryan started the Sabril two days ago.  This is the “last ditch medication” we’ve talked about that can cause peripheral vision loss.  It can cause increased fatigue as if he doesn’t already sleep enough so we’ll see how many naps he needs in the next week as he adjusts to this in his system.  He’s been healthy so far and I’m hoping he doesn’t suffer from any intestinal problems in the next few months.  Last year he was hospitalized for an ileus in November and again in February.

Enjoy your day and go big red!!!

Travis took Ryan to Omaha yesterday to see Dr Madhavan again.  We haven’t seen too many changes in Ryan’s seizure patterns lately, and it’s been about two months since we started him on Onfi.  He does appear to be a little more clear and focused at school now that he isn’t getting a midday dose of a benzodiazepine anymore which is a nice perk of this last med change.  Now it’s time to start the Sabril.  This is the drug that has been coined as a “last ditch drug” if you believe all the sites on the google search engine.  Either way, it’s the last drug we have to try right now so here we go.  This is also the drug that can cause peripheral vision loss which is why I have been so leery to start it for quite a while now.  But like our doctor said in July, Ryan probably doesn’t use his peripheral vision anyway and will never need it to drive or play sports.  Because his vision as a whole isn’t in jeopardy, I’m much more relaxed about starting him on it.  Even still, this is a difficult time for me.  Knowing this is the last drug the doctor has on his list of things to try really brings out a lot of emotion for me.  Of course he told Travis if this doesn’t work we can always go back to trying diet changes or revisit other drugs we’ve tried in the past.  But as research says, once a patient has not gained seizure control after trying at least 3-4 drugs, they are pretty much classified as being drug resistant to seizures.  And we reached that point when Ryan was only a year old.  Of course modern medicine is always coming up with something new, but I simply have a very hard time putting any hope in drugs being able to stop Ryan’s seizures at this point.  The doctor said himself that Ryan has malignant epilepsy, and we all know there is no stopping his seizures from spreading and continuing – they’ve already spread from his frontal lobe to his occipital lobe so they are now pretty much everywhere.  So instead of looking for that magic cure we will never be able to grasp, we just try to slow down the seizures that attack his brain all day long.  Like I have been saying for years, Ryan is happy, loved and pain-free so what else could I possibly ask for? He is exactly as God intended him to be and he is changing the world in the way God planned.  So as long as we get to love on him, we will cherish all that God gave us in our little Ryan.

This morning as I sat in my chair and listened to the leaves rustling about and enjoyed the crisp, cool fall breeze,  I read from Jesus Calling by Sarah Young.  And I want to share part of today’s devotional because it struck me so profoundly as I place my Ryan right back in the arms of God where I need to remember he belongs.

I have called you to walk with Me down paths of peace.  I want you to blaze a trail for others who desire to live in My peaceful Presence.  I have chosen you less for your strengths than for your weaknesses, which amplify your need for Me.  Depend on Me more and more, and I will shower Peace on all your paths.

The LORD is my shepherd, I shall not be in want.  He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake.

Psalm 23:1-3

He’s a trustworthy God who knows exactly what I need when I need it.  I’m so thankful for these times when He simply asks me to be still and let Him do what he does best – lead the way and calm my anxious heart.

Freshman football is now over and both boys have put their helmets, pads and cleats away for the year.  I love this picture of Brad and the intensity on his face.  His team lost only one game and walked away winning All City for freshman.  Trevor played this fall with a new intensity, and Sidney is in the process of trying out for club volleyball.  She has been and will continue to be very busy.

This is Ryan with his para, Michelle, who is a gem.  She loves our little boy so very much and showers him with love while he is at school.  Ryan will be starting school two hours earlier next week (at 11:00) and I’m not quite sure how things are going to go for a while because that is right in the middle of his nap time.  But, we are trying to transition him to a little bit of a longer day so hopefully he will adjust his sleeping habits to this new schedule.  He’s been doing a little better with a decrease in seizures, but we know from years of experience that is only because he started a new medication recently and he is still in the honeymoon period where seizures lessen.  Give him a month or two and he’ll be back to his old patterns. We have an appointment with the epileptologist next week so we’ll see what he has to say and report back to you of course.

And our trip to St. Louis last week…..We were there for Travis’s grandpa’s last 390th bomber reunion and enjoyed it very much.  It was so interesting, and very educational, listening to the WWII veterans talk about their experiences flying the B17s and the war in general.  The kids enjoyed dressing up and were also very intrigued by all the experiences that were shared.  I know we all learned a lot.

We are dressed up and ready for the first night of the banquet to start.  It was so fun to see family from Utah, Tennessee and Omaha.

We did some sight-seeing while we were there and spend Saturday at Grant’s Farm and the famous arch. I love this picture because of its abstract angle.  Sidney was not at all a fan of the small elevator and the swaying from the wind at the top but the boys did love the views from the arch.

Trevor waiting to get in the elevator to head up.  Did you know it takes 4 minutes at 4 MPH to reach the top and 3 minutes to come back down?

Grant’s Farm was absolutely beautiful this time of year and if you ever travel that direction, it’s worth stopping at. 

In Travis’s words, this is the kids holding up a wall.  I guess he doesn’t appreciate the angle but I love it.  Not sure how these kids got so big so fast!

Gotta get a pictures of the ladies.  Travis’s parents spent the day sightseeing with us.

We saw all kinds of animals; this is Grandpa Mac with Trevor.

I love this picture as the oldest two show their personalities.  Overall it was a great trip, and while we were gone Ryan was safe and sound at home being very spoiled by our respite help.  It was a blessing to leave him home where he was comfortable and secure although we missed him so much.  We are thankful for the opportunity to spend the weekend with family, near and far, and really enjoyed the time with the older kids and seeing the beauty of fall with all the changing colors. 

Blessings to you all!

I am in love….with my husband, my kids, and now with the weather.  This is my favorite time of year with the changing leaves, all the beautiful colors and the cooler weather.  Of course I can’t forget football, volleyball, having the windows open, pulling out my favorite, and some new, fall recipes. 

My friends and I had a relaxing, fun time at Table Rock last week and it was nice to get away.  We laughed, shopped, saw some shows, ate too much, stayed up late and slept in.  The cottage was in the middle of nowhere surrounded by lots of trees and right on the water.  It was serene and I could easily move down there although the one lane drive from the main road would be hairy, and unplowed, in the winter.  All in all it was a fun week.

Everyone seems to be doing well here.  The kids are settled into their routines with school, sports and homework and continue to do well.  This is Trevor’s last week of football and Sidney’s last week of intramural volleyball.  She still has two tournaments for club volleyball then tries out for the club season.  Brad is immersed in football and has his first  homecoming this Friday night.  He has a date and is looking forward to lots of fun with his friends.  I’ll post pictures this weekend.  Sunday is a big birthday event at our house with Sidney officially becoming a teenager and Ryan turns nine.  I’m not sure how they got so old but my baby is already nine years old somehow.  Sidney has a volleyball tournament that day so we’ll celebrate with family that night then she is having a bunch of friends over in a couple of weeks for a sleepover. Her big presents were a trip to Iowa City last weekend with my dad and his wife where she was spoiled and got to attend a Hawkeyes game (she’s a big fan).  Then two days ago I took her to get her ears double pierced.  Ryan doesn’t even know what a birthday is so to him, Sunday will just be another day.  We still celebrate the blessing he is and always remain thankful for his health and another year to love on him. 

As I said I’ll post pictures this weekend.  Enjoy the beauty of today!  Love to each of you.

I am smiling because there is absolutely nothing new to tell you!  The saying “no news is good news” is true today.  We are enjoying the blessing of routine, everything being the same, no drama, no changes.  Looking back over the journey we are on with Ryan, I have learned to cherish these days of normalcy because I am so aware of how quickly it can be taken away.  And I know difficult days will be coming once again some day as they do for everyone.  But for now, I will cherish the beauty of simplicity. 

The kids are all doing well.  The older three are as busy as ever with football and volleyball in full swing which is fun.  And they have all done a great job of keeping their grades up.  I’m bragging but I have to say it anyway – the lowest grade among the three of them is an 88%.  I’m simply proud of them for working hard and doing a good job of prioritizing and getting their studying and homework done without Travis and I needing to nag and get on them to keep their studies a priority. We have been richly blessed as parents and don’t take a single day with any of them for granted.  They are all growing like weeds and Brad has absolutely nothing to wear once the colder weather comes.  I’m hoping to find some clothes for him at the outlets next week while I am on my girls trip to Branson.  This is the adorable cottage four friends and I will be staying at. 

We leave on Monday and are all very excited to relax and enjoy five days right on Table Rock lake.  We have plans to see some shows, do lots of relaxing and some shopping too.  There is so much to do in the area; I’m sure we won’t run out of things to keep us busy when we aren’t in the hot tub or down by the lake.  And I have to give a huge shout out to Travis for keeping everything going while I leave for the week with friends.  He is a blessing I will never take for granted.

I’ve been reading Sheila Walsh’s book When a Woman Trusts God again and love what she says in the chapter titled Trusting God With Your Dreams –

What has happened to your dreams? Does it seem as if they have been buried beneath a busy life, or do you question yourself as to whether they ever had any validity at all?  Do you doubt they will ever come true?  Do you trust God for their timing?  I think back to the words of my wise mentor Dr. Kirby: Jesus is more interested in what he is doing in you than through you. In our humanity we have timetables in our hearts and, when our life veers away from those, we assume that we are off course or we have missed whatever it was God had for us at one point.  I no longer believe that to be true.  All we are asked is to trust God and keep following him no matter how dark our path gets.

She goes on to discuss the life of Joseph starting in Genesis 30 which is a great reminder that God has a bigger plan than any of us could possibly understand.  And as He so beautifully shows us through Joseph’s life and the restoration he gave Joseph and his brothers, he wants to do the same for us.  I know how quickly and easily I get frustrated that our dreams for Ellisbrook seem to be so stalled, yet I don’t want to miss what God has for me in this moment.  It’s a daily reminder I must give myself to remember that God does indeed delight in me every single day and while we might not get to live out our dream of caring for disabled adults right now, there is much to be experienced, learned and appreciated in the fullness of God’s goodness today just where I am at this moment.  I don’t ever want to miss the blessing of today.

Fall is on the way in and all this hot weather is hopefully on the way out for a while.  I’m ready for the changing leaves and colder days.  Life is moving along at a faster pace than I’d like but all is well at the McClintick home.  Brad is all about the F’s in life – football, friends, fun and food.  He is beyond social and I’m realizing my time with him is getting shorter and shorter.  It’s been a real eye opener sending him off to high school and the changes that brings with new friends, more experiences and a whole new level of independence.  My heart is so not ready for him to be in high school although I do love the young man he is becoming.  Sidney is in full volleyball mode with two club practices a week and two more at school for the intramural team plus games and tournaments starting.  She is loving school and I enjoy how self motivated she is to do her best and get things done.  I’m just not ready for all the boys who are really starting to notice her.  She has a very small, tight group of friends and avoids drama at all costs which I like!  And Trevor really loves junior high and the more challenging classes he has now.  He has made some very sweet new friends and is really becoming very social like his big brother.  He is really enjoying football with a new aggression we haven’t seen before and also loves going to the varsity games every Friday.  Ryan is the same as always – happy, noisy, loves his car rides and naps.  He sleeps an average of 11 hours at night with two to three naps usually totalling another five to six hours of sleep a day.  His seizures continue as usual and the ketogenic formula we are giving him four times a day doesn’t seem to be doing anything different.  He just started a new medication as well but we are too soon in the process to know if this will cut down on his seizures for a few months – that honeymoon period we love.  School is going well and he seems to be very happy going in the afternoons. 

As for Travis and me, we simply run the kids all over creation like every other parent these days.  I love fall but it’s always a transition to get used to all the driving and running again.  Travis had an endoscopy last week which thankfully turned up negative for Celiac Disease, but now there is the question of why he is having GI symptoms when he eats carbs.  He has to do a breath test next week, and honestly I don’t have a clue what it is except that it tests for food allergies and he does it at home.  He also had an ultrasound of his liver which was negative but I’m sure his numbers were slightly elevated because of the GI stuff going on.  He’s busy as always around the house and loves his time with Ryan during the day.  Work is still part-time and he loves it because it’s completely stress free and flexible.  My job on the other hand has been rough for a while now.  Lots of details I can’t, and shouldn’t, go into right now but it’s been hard for a lot of people in the ER.  I know it’s temporary but it’s no fun going to a job I love only to deal with the stress of everyone around me then also come home and often have stress here from Ryan’s health and other things we deal with.  But I know where my security is and continue to pray the verse that gets me through so many days –

So whether you eat or drink, or whatever you do, do it all for the glory of God. ~ I Corinthians 10:31

I’m really looking forward to a girls trip in two weeks to Table Rock with several close friends.  It will be a treat to get away and relax, laugh and have fun with the ladies.  We’ll be gone five days and have a gorgeous house right on the lake that is secluded with lots of trees and a hot tub on the deck overlooking the lake.  I can’t wait to get away!  There is so much to do in and around Branson so I’m sure we’ll stay plenty busy finding things to occupy our time when we aren’t relaxing at the cottage.

Tomorrow we have the privilege of taking Ryan to church with us as we start a new class for special needs kids.  Travis and I will be helping in the class for special needs adults, but we are anxious to see how Ryan does.  It’s always been tough not being able to go to church as a family with all five of us taking turns staying home with him every Sunday.   Now we can all go together and enjoy this new ministry our church is providing.  The kids are excited to see how Ryan does too which I love.   They certainly look out for him!

Enjoy your day!

School is in full swing, and the kids all seem to be doing well.  I can’t say the older three are very enthusiastic about homework and studying, but it’s simply not their new routine yet.  After so many lazy days of summer, I remember as a kid not enjoying those first few weeks of work again although it was always so fun to catch up with all my friends again.  And my kids are no different!  Football is running full speed ahead for both boys.  Trevor had his first Midget game this past weekend, and he had a great game.  He is playing on the line for offense and defense and is much more aggressive this year.  Brad also plays on the line and this past weekend he had the freshman jamboree where all the high schools play each other in short games and for special teams.  It’s more of a practice run, but it was fun none the less.  His first real game is tomorrow against Norfolk.  And Miss Sidney starts both club and intramural volleyball next week.  As you can imagine life is busy around here, and we certainly spend lots of time carting numerous kids back and forth.  All I have to say is thank God for car pools!  Ryan is also doing well and is set in his routine of napping for several hours each morning, going to school in the afternoon then napping again when he gets home.  His seizures are really bad in the morning when he wakes up and again in the late afternoon and evening. Nothing has changed there, and after a month of insurance and pharmacy hiccups, we are still waiting to get him on the next drug of choice.  I don’t hold a lot of hope with drugs anymore, but usually it at least gives us a couple of months during the honeymoon period when the seizures decrease for a while.  He’s happy which is all that matters.

Yesterday Travis had an appointment with the GI doctor because we have suspected for several months that he might have a gluten intolerance.  Things moved quickly at that appointment, and he is back there now having an endoscopy this morning.  They will get biopsies and next week we’ll know if he does in fact have Celiac Disease as the doctor suspects.  He’s changed his diet for a couple of months now and has had a lot of success cutting out his symptoms when he doesn’t eat anything with gluten in it.  But yesterday he had to go back to eating lots of bread and felt awful all day with his ugly symptoms returning.  But this way the doctor will be able to see how his GI tract reacts to the gluten and figure out if it’s truly that or something else going on. 

And there is nothing new with me at all.  I’m still working and enjoying watching my kids grow up.  I’ve been doing a lot of reading again lately, which is one of my very favorite things to do, and am also looking forward to a girls trip in three weeks.  Four of us from work are heading to Branson where we’ve rented the most adorable secluded cottage on the lake for five days.  Two of these women are wonderful friends, both a bit older than me, but I love the relationships we have and look forward to a relaxing, fun week. I’m so very grateful for the blessing of friendship.  I also was able to spend Friday night relaxing with one of my very dearest friends, Becky, then Monday spent the day with my Michelle doing absolutely nothing while she continues to recover from surgery. 

Here’s a look at our week in pictures…..

Candy, Lori and me on our way to lunch and pedicures celebrating Candy’s birthday.  These are the two sweet women I was just referring to.

And of course along the way we had to stop at home so Ryan could get some Aunt Lori and Aunt Candy time.  These ladies are madly in love with our boy!

This is the other thing Sidney and I have been in to lately – coming up with fun, new hair styles. We’re girly girls and love our nail polish too!

Brad is #64 and this was taken at the Freshman Jamboree this past weekend.  I have yet to figure out how my sweet little baby became a 5’10” (and growing) high school football player.  Boy when they say time flies do they mean it!

Trevor and one of his cute friends at the high school varsity game on Friday night.  I remember how much I loved Friday night football games growing up with all my friends.

And Sidney and her sweet friend Kaylie at the Jamboree Saturday morning.  She has some wonderful friends too.

My cute boy.  It was raining and humid Saturday morning at Brad’s game but we still had fun.  I love this man!

And last but certainly not least, the kids with Great Gpa Mac and his friend Bonnie.  We had lunch with them  and Travis’s parents on Sunday then played a game of Joker which was fun.  We love grandpa and the time we get to spend with him!

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.  ~ Psalm 28:7

It’s been a busy few days around here.  On Friday I headed to Omaha and spent almost 24 hrs at Methodist while my sweet Michelle had a radical hysterectomy due to cervical cancer.  She came out with shining stars and by the grace of God is able to avoid chemo and radiation.  It was a rough couple days for her but I’m thankful she is sleeping soundly in the comfort of her own bed.  There’s nothing like having a sleepover in a hospital room.  And as Michelle said, our next sleepover will require a hotel room and hot tub.  Saturday brought the wedding for a beautiful co-worker of mine.  I simply love weddings and hers was elegant and fun.  By the time I got home I was completely exhausted and ready to lay my head on my pillow after hardly sleeping the night before.  The kids enjoyed spending lots of time with their friends after their first four days of school which went well for all of them.  Ryan didn’t take any time at all to get back into the routine of school and knows when we say “it’s time for school” that it’s time to go.  Taking him in the afternoons only has proved to be the right choice since he sleeps all morning.  And he has the same SPED teacher as last year which we were very happy about because she knows him so well.  His para is one from last year as well and she is wonderful with Ryan. 

Sunday we had a special service at church which included lots of music, testimonies and baptisms.  It was the first time Travis and I have actually shared publicly, besides this blog, about Ryan.  We are very open to sharing our story with anyone but it’s the first time the opportunity has been there.  We both laughed when one of the pastors called several weeks ago to ask if we would share a quick, 4-5 minute testimony with a few pre-selected questions because he said our names came up when they were trying to find a couple to share about pain and suffering.  I have to admit it felt good after the service when numerous people came up to us and thanked us for sharing, said they were praying, some who could relate.  I have always said our story isn’t about us but about making a difference in others lives by how we handle life, sharing our testimony of grace.  And my friend sent me this today ~

It just goes to show that no matter what we face, it’s our choice to stick together, trudge ahead, lean on each other and persevere.  And that everyone can find joy no matter their circumstances.  The saying mind over matter is more true than a lot of people care to admit.  I’m thankful to walk this road with Travis because we have certainly faced enough situations that should have torn us apart but we really have come out stronger in the end – with a lot of forgiveness and grace for sure. 

Well the second week of school is successfully under way.  We, like most everyone else we know, are living the busy life right now getting back into school, activities, sports.  Or translated another way, we are playing taxi cab.  The boys are both loving football and have the usual bruises all over their arms and legs.  Both start their seasons this weekend, and all three kids plan on going to the Southeast varsity football game this weekend….and every other weekend for the season.  I love college football, but I love high school football even more so it will be fun to get back into that scene again. Sidney just made  a spot on a volleyball club that is much more competitive than the club she played for last year.  She is especially excited because her coach is a former Husker volleyball player. She lives, eats and breathes volleyball so this will be good for her.  And little Ryan is doing well.  Napping for three hours every morning then going to school for the last 2 1/2 hrs of the day is working out well.  Even after coming home from school he often sleeps again for another thirty to sixty minutes; the little guy just needs a lot of sleep.  Thankfully with Travis only working part time now, as hard as that is, it’s worth it so one of us can always be here for Ryan.  This works so we’ll stick with it.  Ryan has been transitioning to a ketogenic formula meaning high, high fat and so far he is doing OK on it.  We won’t be able to give this to him at night because it can’t go into his small intestine which is where his night time feedings go now.  But if we can transition him to getting the formula for all his day time boluses, we are hoping it might help at least a small amount with the amount of seizures he is having.  It’s worth a try and so far he is tolerating the changes. 

Yesterday I was able to go to lunch with two very dear friends then we had pedicures.  It was so fun,  and these are two of the ladies I’m going to Branson with for five days next month.  We rented a beautiful cottage on the lake, and I can’t wait to go relax with them.  After lunch we stopped home to see Ryan before he headed to school so Lori and Candy could get some Ryan time.  He loves these ladies but with the amount of love and affection they shower on him, I’m not sure how it could be any other way.

We desperately need to have family pictures taken again but simply keep putting it off.  With fall around the corner I hope to get some good outside photos to share.  And I need to post some more pictures of the kids…something to get working on for the next post.

August 7th ~ Jesus Calling

Understanding will never bring you Peace.  That’s why I have instructed you to trust in Me, not in your understanding. Human beings have a voracious appetite for trying to figure things out, in order to gain a sense of mastery over their lives.  But the world presents  you with an endless series of problems.  As soon as you master one set, another pops up to challenge you.  The relief you had anticipated is short-lived.  Soon your mind is gearing up again: searching for understanding (mastery), instead of seeking Me (your Master)…..My Peace is not an elusive goal, hidden at the center of some complicated maze.  Actually, you are always enveloped in Peace, which is inherent in My Presence.  As you look to Me, you gain awareness of this precious Peace.  

Now may the Lord of peace himself give you peace at all times and in every way.  The Lord be with all of you.  ~ 2 Thess 3:16

This is a tough week for Travis and me.  Some of it is simply getting the kids ready to head back to school and all the planning, buying, and organizing it takes to get things figured out.  This is a week when we are heading in fifteen directions at one time.  Brad has two a day football practices, Sidney has volleyball clinic, Trevor has football practice every night, Ryan has therapy, the kids have ortho appts and everything else in between.  I think all I did today was drive back and forth from home to various other places carting the kids around before heading to work.  And the rest is simply tough situations we are dealing with that I don’t really want to air to the world.  I’ve always been very transparent but there are some things that just can’t be shared.  We are just struggling with several things but know the God of Peace is here with us the whole way.  And I relate so well to the devotional from today because there is one area in particular I have spent way too much time trying to figure out and fix.  That’s why I love the picture from above because while I feel like things are completely falling apart right now, I realize they are really probably falling into place even though it doesn’t feel that way. We have been blessed this week having been asked to share a small piece of our testimony and while I don’t ever want my story to be about me, I realize the situations we have been through are causing things to fall into place as God intended, even when all I see is the struggle.  Like I keep saying, He’s a good God.  But I have to say, sometimes it’s hard to remember he is near just like on a cloudy night when  you can’t see the stars but you know they are there as well.  Eventually the clear skies return and the brightness of the stars is displayed for all to see.  I sure hope the bright stars in my life return soon.  I’m tired of the cloudy days.

And for your viewing pleasure, there are twenty two videos of Ryan.  Everything from trying to talk to seizures to time with siblings to clapping and squealing.  Enjoy!

If you don’t have an account on youtube, you will need to sign in so please feel free to use my account.  I only have it to access these videos.  I simply ask you please view only and do not post anything under my name.  Thank you for respecting my privacy!

User: kmcclintick6       Password: Bradley1

http://www.youtube.com/my_videos?feature=vmdshb

So I get tired of saying the same thing over and over – the kids are good, Ryan’s seizures are bad.  Blah, blah, blah.  So today I’m doing something different and sharing my favorite quotes and verses.  And hopefully in the next few days I’ll have some videos up for you of Ryan, some showing his seizures.  They are all on my phone right now and I need to take the time to download them onto the computer. 

I absolutely love this first one! How true that no matter what is happening in our life, our attitude is truly what determines how happy we choose to be!

OK, I’m the first to admit I’ve done this….more than once. A lot actually.  And so do my kids.

Isn’t this the truth?  How many of us get anywhere but more miserable when our attitude stinks?!  IT’s easier said than done sometimes, especially when we are feeling sorry for ourselves, but I’ve learned no one else can get me out of a bad attitude but me. 

No matter what we face, life truly does go on and at the end of the day when the sun sets, we’ve made it through another day.  And when the sun rises again to start fresh, it’s a wonderful reminder that life goes on.  This is a message I try very hard to get across to my kids. 

One of my absolute favorite verses.  It brings pictures of a mother duck hovering over her babies with her wing protecting them from the harsh elements and realities of the world.  And in the same way it’s the exact picture of how God loves on us and protects us.  I just think it’s an amazing word picture!

My all time favorite verse, this is the one I have clung to since the beginning of our journey with Ryan.  It means more to me than I can express. And there are times when I am struggling, when I feel alone that I actually hold my right hand out and ask God to let me feel him holding my hand.  It’s a promise I will never let go of.

My mom always loved Erma Bombeck and had several of her books lying around the house when I was growing up.  This quote is exactly how I want to be when I stand before God someday – having used up ever gift, talent and opportunity I’ve been given.  Being able to say I did my best, used my experiences on this journey for God’s glory.

I love this.  The battle is the Lord’s, and my job is not to take the reigns but to allow him to do as he wishes with my life.  I’m a controller, I like to have my way, I’m independent and opinionated (very opinionated really) and a go getter.  Being still is a lesson I have to relearn every day.  I’m a work in progress.  But I’ll tell you what, I sure feel comforted knowing I don’t have to have things all figured out.   

I have so much on my mind right now.  I’m sure you’ve all had those moments when everyone around you is going through hard times and you wish so badly you could just scoop them up and fix things.  That’s how I feel today.  These past two weeks have been full of sadness and stress but also a time of really seeing God’s goodness.  I’ve already shared our journey with Ryan these past few weeks and the wide range of emotions I have gone through as we have felt like we were at the end of the road with options to “fix” him.  And in reality there is no fixing to do because Ryan is exactly as God intended him to be.  I am the one who has needed fixing.  My perspective.  My attitude.  My faith.  I have prayed Proverbs 30:8 every single day for so long now wanting it to be the only desire of my heart.

Give me neither poverty nor riches but give me only my daily bread.

And I’m sure you will all see me quote it again and again in future posts.  It’s an amazing place to be dwelling in this moment, teaching my brain not to focus on future what if’s or past if only’s.  It’s not easy to learn to live in the moment, having simple thanks for God’s provision in this little space of time.  But the joy that has filled my heart as I’ve learned to do just that is an overflowing fountain of grace and acceptance.  Of being able to say OK God, whatever you say, do as you will.  Of being able to experience peace when everything around me seems to be falling apart.  Of being able to know in the deepest corners of my heart God is an amazing provider, a loving Father who desires to bless us with his goodness.  He is El Roi, the God who sees. What an amazing promise to know he is already aware of everything in my life because He sees my inmost being, He knows my joys and fears, He is intimate with the longings of my heart. 

Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. ~ Isaiah 46:4

In the past week, I’ve learned my best friend’s cervical cancer has not spread so she can have a radical hysterectomy and not have to go through chemo.  This is the same woman who has three kids 11 yrs old and younger who lost her own mom to breast cancer when she was twelve.  And someone else very close to my heart is enduring much persecution at work, being attacked and belittled.  A sweet friend from high school’s wife was just diagnosed with stage two breast cancer and has a long, difficult battle ahead.  My sweet Ryan’s seizures continue to wreak havoc on his little body and just this morning he has a massive myoclonic jerk that threw him to the kitchen floor.  There are several other friends who come to mind with lingering health problems, financial hardships, emotional baggage they have carried far too long, trials of all sorts.  But isn’t this life?  We live in a fallen, broken world.  Yet there is hope in the One who saves, who picks us up and carries our burdens, who lavishes His forgiveness and grace on our imperfect choices.  And I am again reminded of one of my other favorite verses from Psalm 27:13 ~

I am still confident of this:  I will see the goodness of the Lord in the land of the living.

We have nothing if not for the hope of eternity and also the hope of God’s goodness right here today no matter what situation we face.  He is a good God and while He doesn’t promise us an easy, carefree life here on earth, he does promise the joy of eternity with Him, to meet all of our needs, to fill us with his love and grant his mercy when we least deserve it.  He promises never to leave or forsake us.  It’s with that security found only in relationship with our Lord and Savior Jesus Christ that Travis and I face each day knowing good things are to come.  Not in our timing, not by the means we hope for, not as easily as we’d like, but God’s blessing and perfect will for our lives is coming.  It’s here today too; I don’t want to miss it in this moment.  I love the Jesus Calling devotionals by Sarah Young, and the one for today is so worth sharing.  May he be your Anchor today in whatever you are facing as well.

July 29 ~ Come to me continually.  I am meant to be the Center of your consciousness, the Anchor of your soul.  Your mind will wander from Me, but the question is how far you allow it to wander.  An anchor on a short rope lets a boat drift only slighty before the taut line tugs the boat back toward the center.  Similarly, as you drift away from Me, My Spirit within you gives a tug, prompting you to return to Me.  As you become increasingly attuned to My Presence, the length of rope on your soul’s Anchor is shortened.  You wander only a short distance before feeling that inner tug – telling you to return to your true Center in Me.

School starts again for the kids in twenty days.  It’s hard to believe how quickly the past couple of months have flown by, and Sidney just asked me today when we are going shopping for school stuff. We had Brad’s best friend with us for a week (he moved to Denver last month) then they headed to Colorado with Travis and a group of other guys from church.  Sounds like they had a lot of fun camping, hiking, biking.  It was very rustic and our SUV still doesn’t smell the same after having seven guys drive home in it after not showering for four days.  But what’s important is that they had a lot of fun and made some great memories.  And the weather was fantastic with highs in the 70’s up in the mountians.  So very jealous!  I think everyone is tired of the heat around here. Thank you God for the blessing of air conditioning!

Trevor is at Camp Sonshine this week from 9 am until almost 430 pm with a friend, and they are outside all day.  My sweet neice is there as well having a fabulous time too. They are all having so much fun that I don’t think the heat bothers them all that much although Trevor is very tired at night.  And Brad has football camp this week then has a week off before football practice starts.  I still can’t believe he’s heading to high school already but know he’s going to love it.  And Sidney and Trevor are ready to head back to school too; Trevor is very excited to start jr high and isn’t nervous at all.  Ryan will only be going to school in the afternoons again and we are in the process of trying to work those details out with his school.  He still sleeps for three hours every morning plus another 1-2 hrs in the late afternoon in addition to sleeping for ten hours at night.  The neurologist thinks with him missing 1/4 of his brain, being on six seizure meds every day, and with the number of seizures he’s having daily, he needs his sleep. His poor little brain just can’t keep up.  I can’t justify sending him to school only to have a para sit in the room while he sleeps all morning so we will take him when he wakes up.  He needs the socialization but isn’t making any gains developmentally at all so it’s not like he is missing out on a lot of academic time.  In fact on Monday his OT at Madonna was saying how much strength and tolerance to touch he’s lost in his left arm because of seizure activity. 

Travis and I were just saying a few days ago how excited we are to start Ellisbrook and how much our hearts have changed especially over the past year.  We are in a waiting period though as we don’t feel like God has clearly made the way for us to move forward.  The kids are excited too and I pray we are able to get moved and started while the kids are still in school so they can experience this next phase of our lives firsthand.  It’s amazing – and such a blessing – to see how God has really moved their hearts toward caring for special needs adults as their vision for our family has also changed.  It’s hard to be patient as we wait for God’s timing when we are so excited to move forward in this ministry!

Prov 16:9 ~ A man’s heart plans his way but the Lord directs his steps.

Travis and I sat with the neurologist yesterday afternoon and came up with a plan for Ryan and his ever-increasing seizures.  Basically the doctor said there are two “last resort” medications we can try and if those don’t work then the only thing left is experimental studies.  There is a new drug out called Onfi that is a long acting benzo we are going to start Ryan on as we taper him off the Tranxene (a short acting benzo).  He’s been addicted to benzos for several years now since we’ve had to give him so much of the drug through daily doses and rescue meds.  If this drug doesn’t work then the last one is Sabril which is the drug that can cause vision loss.  The doctor explained it’s peripheral vision he could lose but in someone like Ryan who will never drive, play sports, etc, he doesn’t need his peripheral vision anyway.  I honestly don’t hold a lot of hope for either drug because he’s already been on fifteen seizure meds and none of them have worked long-term.  But at least it’s something.  I think I just had to come to the point that I accepted – once again – what is going on with Ryan and can move on knowing two things.  One, Ryan is God’s child first and he loves him more than I ever could so who am I to doubt His care, protection and perfect will.  And secondly, Ryan is very loved and has a great life because we continue to do everything we can to give him the best quality of life possibly.  It is what it is.  I have these periods of time when I grieve and feel the loss of control over his seizures and then I get through it and move on.  I guess that is probably perfectly normal.  Thankfully I don’t stay in those seasons for too long!

Travis, Brad and Nathan were off early this morning to meet the rest of the guys heading to Colorado.  It’s a group of ninth graders from church who are hiking, biking and camping until Monday evening.  I’m sure they will have a blast and create lots of wonderful memories.  The other kids and I will be home.

I have to run but wanted to get an update out about Ryan’s appt yesterday.  Off to my mammogram….I’m getting old!

It’s been an interesting week.  I decided to become a SANE (sex assault nurse examiner) and had forty hours of training which was very interesting.  We had a fabulous speaker who is highly regarded nationally.  But, it was hard to sit for that long because I am used to being on my feet!  This is something I’ve tossed around for several years now and finally decided to do it because we need more trained nurses in the ED to care for these patients.  I didn’t enjoy being gone from Travis and the kids for five full days as I am spoiled with twelve-hour shifts but overall, it was a really good experience. 

I also talked to the PA at Ryan’s neurologist’s office and made an appointment with the doctor for Thursday.  We are going to sit down with him and talk about “now what?”.  It’s a very, very, very emotional topic for Travis and me because we both feel like we are at the end of the road with Ryan.  As a nurse I am very much aware that doctors don’t always tell patients and their families everything.  They reserve their opinions, thoughts and insights sometimes, and I’ve seen it firsthand.  It’s hard to be on the other side wondering what the doctor thinks about Ryan that he isn’t telling us, and that’s the information we are after.  We’ve tried four brain surgeries, diet changes, the stimulator implanted in his chest, at least fifteen seizure meds over the past eight years, numerous other tests and monitoring.  And we are to the point that we feel we’ve tried everything there is to try.  There is only so much we are willing to put Ryan through and we feel like we’ve reached that point.  We know medications aren’t going to work long-term and just experienced that again for the umpteenth time now that we are through the honeymoon period with the Valproic Acid he has been on for the past few months.  The seizures have returned and now there are new ones we’ve never seen before.  Ryan now has seizures in his occipital lobe in the back of his brain that we see in his eyes.  So we simply want to know what is next.  And maybe we won’t get that answer but we don’t know what to expect, what is reasonable, what is OK, what is not.  There has never been a diagnosis, an idea of what is going on in his sweet little body, what is causing his brain to continue to seize so much.  It’s hard to watch after everything we’ve put him through, everything we’ve been through emotionally, financially, spiritually, everything our amazing older kids have had to endure and try to process.  So now we simply want answers we may not get and that is the most disappointing part of it all.  Knowing we will probably be told no one knows what to expect now.  Travis and I both see a beautiful little boy who is so loved but who is so trapped in a body that fails him.  We know he is exactly as God intended him to be.  We know he has touched lives, changed hearts, moved people in ways no one else could.  Yet in my human mind, I want more.  I want more than to simply trust God for whatever tomorrow brings.  I want something I can read, see, touch, process, rationalize, study.  I want a diagnosis that has a beginning and an end.  I want to know what is coming tomorrow, what is going to happen to Ryan, how long he will live. I just don’t know what I should be thinking, expecting, preparing for.   And deep in my heart I know I’m not going to get the answers I desperately want.  God didn’t hand us an outline in the manual of “how to parent Ryan” when he was born.  I think most of us parents wish we had that with each of our kids.  Because I’m certain if I had such a thing, as silly as it sounds, I wouldn’t need my heavenly Father when I’m fearful for the future, when my tears are flowing, when I am overcome with anxiety and negative thoughts, when I worry and find myself making up scenarios in my mind that will most likely never come to be.  I wouldn’t have learned to trust, to walk by faith, to remember the verse in Proverbs that says a man’s heart plans his way but the Lord determines his steps, and I certainly wouldn’t have learned to let go of my dreams and desires so they could be replaced by God’s perfect will for my future.  It’s just hard, this journey we are on.  I never expected my life to turn out as it has.  And while some days all I can concentrate on is all the loss, the disappointments and heartaches, there are far more days when all I can do is relish the joy of the Lord in my heart, smile at all the answered prayers, the numerous ways he has met every single one of our needs, the depth of my prayers every single day as I pray for God to give me neither poverty nor riches but give me only my daily bread.  It’s an amazing journey Travis, the kids and I find ourselves on and if given the opportunity, I’m not so sure I’d change the circumstances of my life because I wouldn’t want to miss out on the blessings God has showered on us, the richness of his love, the abundance of his grace.  He’s doing far more than we even realize and I’m so excited to see what’s coming – good and bad.

All I know is what is probably very obvious to all of you – my emotions are very conflicted.  And I suppose that’s simply part of the journey, a piece of the process.  And it’s OK.  I know that.  I just don’t want my human emotions and fears to get bigger than my faith which tells me no matter what the future brings, God is there, he has a perfect plan for us, he’s never going to leave us or forsake us no matter what trials and blessings are coming.  The unknowns can be so very hard to process though.  It’s a journey.

Travis saw the doctor recently, and we are waiting for labs to come back because we suspect he has Celiac Disease which is basically described as this:  an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. What does this mean? Essentially the body is attacking itself every time a person with celiac consumes gluten.  I won’t go into the details that most of you won’t want to hear anyway but this is something we have suspected for a long time.  He will be referred to a GI specialist but has already cut gluten out of his diet and has seen good results when he strictly adheres to it.  It’s just a hard lifestyle change to become accustomed to.  Who wants to never eat another piece of bread or cake?  Not me.  And I’ll tell you, gluten-free pizza or bread is not the same as the real thing.  But it is what it is. 

Otherwise we are very aware the summer is coming to a close much too fast.  In four short weeks the kids will be back in school – August 14th to be exact.  They are still having lots of fun with friends, swimming, shopping, hanging out, running, lifting weights, eating a lot, having sleepovers, doing normal kid stuff.  And they are such great kids.  Travis and I are so blessed and it’s something we never take for granted.  The kids are all growing and eating us out of house and home.  Our grocery bill is ridiculous.  And when I find Trevor eating lasagna at 10 pm then a huge bowl of cereal at 11 pm and he says it’s his third meal since dinner, I know he’s growing.  He is simply never full.  Brad has football camp in two weeks, Trevor has Camp Sonshine the last week of the month and Sidney is starting new volleyball clinics.  They all have activities but still have a very free summer to do as they please which is how it should be since they are kids.  We chose not to put Ryan in summer school because he is sleeping so much and are in the process of trying to figure out what to do about school this fall and how much to put him back in for.  He just woke from a three-hour nap which is his daily routine so if we can, we will probably just put him in school for the afternoons.  There are a lot of details to figure out with that. 

Travis, Brad and Sidney are in Omaha right now waiting for Brad’s best friend Nathan to get off a plane from Denver.  His family moved out there last month and Nathan is coming back until Friday when a group of church boys will be driving to the Colorado mountains for four days of camping, hiking and biking.  Travis is going with them as a leader, and I am praying they all have a fabulous time. 

I saw this quote somewhere this week and was very struck by the truth in it……

I was reading Ryan’s old caringbridge blog this morning at work and found some cute things the kids said and wrote and have to share them with you.  They made me smile!

Friday, November 10, 2006 12:01 PM CST

How to Go Sledding – by Brad McClintick
(this was a school assignment last week)

Do you want to know how to go sledding? Anybody, anybody, okay, you do. Well here is how. First, you see if the snow is adleast six inches. And if it is you ask your parents. If they say yes, prepare to go. Second, get three shirts, a coat, a pair of winter gloves, swett pants, and thick nylon pants over the swett pants, a hat, two sleds and a happy dad, and a happy brother and sister. Third, go to a place where you know a hill is for example, by the library and the Cooper YMCA. Fourth, drive to the hill you are going to. Finally, you get out of your car, get the sleds and go up the hill with the sleds, your brother, sister and dad. Then you sit on the sled, have your dad give you a push and ZOOM! Down the hill you go! 25 mph! That is how to go sledding.

OK this one broke me heart….

This is not what kids should be thinking about in a Thanksgiving card to their family. At least God has blessed her with sensitivity and insight.

“Dear family,
I’m thankful you are a part of my family. I love you all. To mom and dad, it is hard with Ryan. I hope you do not think you are a bad mom and a bad dad. I love you.
Love, Sidney M.”

Monday, November 20, 2006 8:03 AM CST

Love this one ~

March 9, 2006 – Trevor said something cute today. He asked what happens if you lose a parent tooth. After I told him it’s called an adult tooth, I said the dentist makes a fake one that looks like the real ones. He said, so you get a paper tooth? Where do they think up this stuff?

Sakes alive do I  miss these years of cute saying!!!

November 16, 2005 ~ I asked Trevor today if he is still sucking his thumb at night when he sleeps. His reply was “Only on Tuesdays, Mom.” I thought that was cute. In other words, “Yes, Mom, I do suck my thumb but I know I’m not supposed to so if I say I only do it one day a week, you won’t be upset with me.”

Oh Ryan….

February 8, 2011 ~ Stuff in the fridge is not intended to become wall decorations.  Case in point….the other day I walked past the staircase to find a nearly full carton of sour cream all over the walls and splattered on nearly every step. You guessed it. Ryan carried the carton and threw it down the steps. I’m sure he enjoyed watching to explode everywhere although I can’t say I had the same level of enjoyment cleaning all that stuff up. Good thing the dog likes sour cream.

One of  my all time favorites ~

Travis after church:  Sidney, what did you talk about in Sunday school today?  Sidney: We learned about the story when Jesus went to a party and turned the water into beer.  Travis:  Well that must have been some party!

And some things simply never change!

Feb 13, 2010 ~ I wish my kids could, without being told or reminded, do things like put their dishes in the dishwasher, vacuum the floors when they notice they need to be done, do their own laundry and not complain they have nothing clean to wear, refill the toilet paper when the roll is empty, stop leaving empty cereal boxes in the pantry, quit growing up so darn fast.

I’m sure some of you thought I fell off the face of the earth with my absence in posting recently.  I’m still here but have been pretty quiet for a while.  I’m usually one who blabs every emotion and detail of my life but for the past couple of months, I’ve been pretty introspective and have kept a lot to myself.  It’s simply been a period of really learning to rest in God’s protective cover. 

 Psalm 91:4 says “He will cover me under his feathers and under his wings will I take refuge.”

And that’s where I’ve been spending my time lately.  For years I’ve always been able to look ahead and say we have this or that to try with Ryan.  And those years are over.  I’m simply grieving.  It’s like getting to the end of a great book and saying “that’s it?! What a let down!” Or going on a vigorous hike, cresting the hill and saying “Really? I expected something much more beautiful”.  I feel like we are at the end and now we just sit, wait, watch and love.  Just the other day a friend of ours was over watching all the kids blow up fireworks, and Ryan was sitting between us.  We were talking about him as he had numerous seizures and she said to me, “Kim, most of us simply can’t possibly understand what this is like for you.”  And she’s right.  I don’t expect people to understand either.  I just can’t put in to words what it’s like to watch your fragile child have seizure after seizure after seizure knowing there’s nothing we can possible do to help him.  Knowing his brain is being destroyed right in front of our eyes.  Knowing it’s getting worse and we are helpless.  It’s simply heartbreaking.  And so in the midst of the heartache, the fear, the let down, the loss and grieving, I’ve come to a place of simply resting in God’s refuge, in the quiet of his love, in the comfort and security of his arms.  And it’s an amazing place to be.  I’ve never, at one time, experienced such highs and lows as my earthly self sits in the middle of a  field of fear knowing tougher, longer, harder days are ahead.  Yet at the same time, resting in the strength and promises of a Heavenly Father who has it all under control, who knows what our tomorrows are going to bring and tells me every day he’s got it all figured out wherever the road leads.  That he loves me with a love so intense I will never be able to comprehend.  And my part is really quite simple.  Let go and trust.  It’s hard work, it take a lot of discipline.  But it’s the choice I make every day, and honestly, some days it’s easier than others.

Zephaniah 3:17 ~ The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.

And so, life continues on as usual around here with the kids growing like weeds.  The older they get, the more I realize how blessed I am to have three amazing kids who are full of compassion, life and energy.  Brad and Sidney had physicals two weeks ago and were told if they stay in the 90th percentile as they continue to grow, Brad should be around 6’4″ and Sidney at 5’10”.  Trevor is winding down with baseball with only a handful of games left.  He’s enjoyed it but has decided football is definitely his favorite sport.  Sidney continues with her volleyball games and clinics and has been doing a lot of babysitting for her cousins and also Ryan.  And Brad is getting some serious muscles weight lifting four days a week.  Football starts in a few weeks and he is excited.  Ryan continues to take 2-4 naps a day and spends most of his awake time sitting on the couch.  He’s cute and happy and spoiled.  Travis and I are hanging in there.  June was a trying month with way too many unexpected expenses but that’s just the way life goes.  So we deal with it and move on.  In the end, God always provides and we simply keep going.  I’ve been especially thankful these past few months realizing God put Travis and me together to walk through all this together. He’s a blessing beyond words and I am so grateful to have him by my side. 

Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  ~ 2 Corinthians 4:16-17

We love you all and appreciate your support and kindness more than we can outwardly express.  Blessings to each of you dear friends.

Hey guys! Hope you all are doing well and having a great summer! Boy has  it seemed that the summer has flown by!

Well Ryan is doing ok. We have definitely seen a lot more seizures from him than we had before. He has had a nice time at the pool with us kids and with the babysitters. He loves watching us jump in / pushing us in the pool and splash as long as he doesn’t get too wet or if it’s not too sunny out. We have noticed an increase with him sleeping, as in taking 3-4 naps a day. He is really happy too! Which is very nice to see!

As of us older kids, we have been enjoying the pool that our very kind neighbors have been letting us swim in whenever we want to. Also we have had a lot of time with our friends! Brad is still enjoying weight lifting, and he is starting a golf clinic tomorrow for the next two days. Trevor is enjoying baseball and definitely enjoying the pool most out of the 3 of us kids. I’m extremely excited to go to Iowa this weekend and see my grandpa and grandpa (my mom’s dad and step-mom). We will just be hanging out with them and enjoying the time we get to spend up at the farm. We are only going for one night, so it will be short but extremely fun!

As of mom and dad, they have both had some crazy hectic schedules. Everything from work to playing taxi and driving us wherever we want to go! (We kids are definitely grateful for what they do for us. Especially for letting us have SO much freedom!!) My mom hasn’t been feeling the best, with a cold. 😦  Dad has been home cooking and baking some REALLY yummy stuff that we really appreciate him doing!

~ Sidney

Happy Father’s Day to all you dads out there.  I have been very blessed over the course of my life to have some amazing men beside me.  My dad for one, of course.  Thank you, dad, for always being there, for loving me through the tough times and never giving up on me, for your guidance and protection over the year, for simply being you.  I love you!  Thank you to my father in law for your love and devotion to our family, for always being there, for all the long talks over the years, for loving me as I am.  Thank you, Grandpa Mac, for teaching me the value of family and sticking together through thick and thin, for showing me a generous heart. 

And my sweet Travis.  Thank you for giving me four beautiful children who have changed my life in ways I never knew possible.  I can’t even put into words how grateful I am to walk this journey with you as we face each new day.  What a blessing your laughter and joking bring to our home.  I have told you for years you can’t be serious for five minutes but it’s one of the things I love most about you – your ability to have fun and keep people smiling.  You have faced more challenges than many people will ever see and have done it with grace and dignity; the kids see your strength and fortitude to learn what God is trying to teach you in the moment and to never give up.  You face each day teaching our kids God is faithful and always, always provides, giving them unconditional love, showing them forgiveness and acceptance, modeling respect for others, teaching them to laugh and have fun, keeping them accountable for their actions and words, teaching them to return things in better condition than when they borrowed them.  Thank you for being the dad our kids deserve – one who is active and present in their lives every day, who has sacrificed your own wants, desires and dreams to take care of them, who walks with them through the ups and downs, who takes the time to listen and comfort, who does far more than most dads cooking, cleaning, doing their laundry, grocery shopping, driving them everywhere, taking them on dates, wrestling, joking around, playing in the backyard, lying in bed and around the fire pit telling them your outrageous stories, simply being you.  You are modeling Christ to them every day and showing them to treat others with respect, to accept people as they are, to remember they don’t always know people’s stories but to love them anyway, to not take life too seriously and to never stop believing in the goodness of God and his amazing provision.  The kids and I are all so proud of you and thank you for being the amazing father and husband you are.  You are very loved!

Today I’m struggling with all the unknowns of the future.  Most days I do a really good job of staying in the present, enjoying today, recognizing the grace and blessings of the past and believing our future is completely in God’s hands.  Most days the future is something I don’t have to worry about because He has proven from past experience that I don’t need to spend my time worrying about what may or may not come.  But tonight my heart feels very heavy, the tears are on the verge of falling, I can hear myself sighing frequently and my mind just refuses to shut off. 

Today as I drove down Old Cheney on my way home with my oldest in the front seat next to me and the youngest behind him, fear struck me.  Ryan was having constant seizures and Brad turned around and said in a very agitated voice “knock it off Ryan!”.  I calmly explained he isn’t seizing on purpose and Brad said “I know, mom, I just hate these stupid seizures!”.  It hit me, again, how hard this is for the kids.  They had so much hope Ryan’s surgeries 19 months ago were going to stop his seizures – we all did – and that failed.  Then we put lots of hope in the vagus nerve surgery and that device has also failed.  Then we put hope in the corpus callosotomy surgery in February and ended up with a month long hospitalization and new stomach problems. And now the seizures are back with a vengeance.  The honeymoon period from adding Depakote back to his long list of meds is now over.  And while the last surgery did keep his seizures from spreading from one side of the brain to the other, he is back to having clusters of small seizures almost on an hourly basis.  He’s also been sleeping more, seems less active and more content to just sit and do nothing.  Don’t get me wrong, he is still happy and content.  It’s just been a struggle to realize everything we can do for him has already been done.  It’s hard, and I’m not going to lie and say I’m OK with not knowing what the future holds.

We’ve never figured out what is wrong with him, why he is as he is, what awful disease or genetic disorder is ravaging his sweet little body.  And maybe, probably, we’ll never know.   But I’m not OK with that.  I want a name, a visible target to throw darts at, something to blame for stealing my son’s health.  Most days I seem to do OK not knowing what tomorrow will bring but these past few days as I’ve watched the seizures relentlessly attack my sweet boy’s little body, it’s really bothered me.  I am very much aware that God has all of our tomorrows in His very capable hands, and it’s not that I don’t trust His perfect will.  But…I’m still human, I still hurt, and I still feel sorrow and fear for what is coming.  And I know one of these days the grief won’t be so overwhelming, my heart won’t feel so heavy and my hope won’t seem so fleeting.  That day isn’t today.

For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. ~ Jeremiah 29:11

Tomorrow is our 18th anniversary.  To celebrate, we went to Omaha for the night and as Travis said, “that was the best 24 hrs I’ve had in a really long time”.  We had a blast and are so glad we didn’t cancel our reservations.  After replacing our transmission last week, we didn’t think it would be wise to go to Omaha but instead realized we really needed the time away in spite of everything happening around us.  And we dressed up too which was fun, something we hardly ever do.  Thanks to some very sweet friends, we enjoyed a nice dinner at Biaggi’s and even went with my oldest and dearest friend and her husband.

One thing I have always loved about my husband is his ability to make me laugh, alway be silly and never take things too seriously.  Fo example, the Mother’s Day post picture – go back and look if you don’t know what I’m talking about. 

Later that night we went to Shadow Lake Mall and had some ice cream then sat next to the outdoor fireplace and waterfall.  It’s beautiful and we had a great time talking and enjoying the gorgeous weather.  It’s amazing how the older we’ve gotten the more we appreciate just simply sitting and talking and don’t need to constantly be doing something to enjoy our time together.

We came home for a few hours then headed to a Saltdog’s game to celebrate our sweet friends Andy and Amanda who are getting married on Friday.  It was hot and windy but thank God for the shade; we had a fun time and can’t wait for Friday.  This couple is an amazing example of waiting for God to bring the right person into your life no matter how many years it takes.  He has been faithful to answer their prayers and honor their convictions and desires. 

I love this man with all my heart and am so very thankful for the blessing he has been these past 18 years since we said “I do”.  We’ve had our up and downs, as everyone does, but overall it’s been an amazing ride.  We have both been blessed to find someone who accepts us as we are, loves to be together and whose heart still skips a beat when the other person walks in the room. 

Proverbs 3:5-6 ~ Trust in the Lord with all your heart and do not lean on your own understanding.  In all your ways acknowledge Him and He will direct your path.

Looking back at the hardships God has placed in our lives and ahead to the calling God has given us to care for special needs adults and waiting for Him to say GO, I can’t imagine spending every day with anyone else but Travis.  And I know he would say the same about me.  Happy 18 years, my love!

And pray in the Spirit on all occasions with all kinds of prayers and requests.  With this in mind, be alert and always keep on praying for all the Lord’s people. ~ Ephesians 6:18

Once again I have been humbled by God’s strong presence in our lives this week.  It was disheartening to find out the noise that sounded like a box of rocks in our SUV was actually the transmission going bad.  Even the mechanics were surprised we have to replace the entire thing.  So here we are again taking one step forward and several steps backward.  It’s very easy to feel like we can never get ahead, yet if we were ahead and this wouldn’t be a big deal for us, we would have missed out on what God wants us to learn this week.  Yesterday Travis and I sat on the edge of our bed and prayed for God’s provision.  I feel like that’s all I do – trust him to provide this or that or to get us over the next hurdle, through the next storm.  And yet, isn’t that exactly what we are called to do?  Rely on Him only, all the time.  That’s why I love the verse above because our job is to constantly, in all things, keep praying.  Keep trusting.  Keep believing.  God never intended for us to be independent, solve our own problems, live our lives through our own means and for our own gains.  Our job is to trust, to walk in His strength, to fully believe He is enough. And to always thank him for his provision because he desires to pour his blessings out on us.  And as Travis and I finished praying and I looked up to see my husband’s face so full of sorrow, I strongly heard God say “I will provide, Jehovah Shammah”.  To be very honest, I had absolutely no idea if I was hearing God right because I didn’t know what Jehovah Shammah was.  I had no idea that is a name of God meaning “God is there”, seen only in Ezekiel 48:35 where Jehovah is spoken of as though residing in an earthly city or place.

But it is Jerusalem the Lord is talking about when he reveals himself as Jehovah – Shammah, The Lord is There. This is in fact the very last line of the prophetic book of Ezekiel chapter 48:35; “All the way around shall be eighteen thousand cubits; and the name of the city (speaking of Jerusalem) from that day shall be: THE LORD IS THERE.” Ezekiel is prophesying about a time that is yet to come.  

It was such an intense reminder that God is already there in all of our tomorrows. What was true for Jerusalem is also true for us today.  He is present in everything after the sun rises again.  And he will still be present when the sun sets.  He knows everything that is going to happen and is already present in that situation, far before we get there. 

I think of how amazing that is with my own life as we trust God for the transmission that is being put in our SUV right now.  I think of our sweet friends James and Sandy who are facing a multitude of changes in their family as they take in family members and also face James’s newly diagnosed cancer.  He is already there, James and Sandy.  I think of Steve and Danelle who are sending their oldest off to Westpoint next month.  He’s already there, guys, waiting for Jesse to arrive.  I think of Lisa and David and their sweet boys, one of whom is Brad’s best friend, as they move to Denver on Friday.  He’s been there waiting for them to arrive.  And he’s got it all under control.  I think of Travis’s cousin Steve and Penny as they have to decide when to allow the doctors to perform a kidney transplant from Penny to their cute little boy, Steven. He knows the time. I think of my dad and stepmom who are facing the grueling task of caring for Donna’s aging parents who are in their 90’s trying  everyday to continue living in their own house as their health fails.  And while their time on earth is coming to a close, God is already there ready to welcome them home and to see you through the difficult days ahead, dad and Donna.  There are so many people I can think of who are facing trials, we all do, yet it’s exciting to realize God is already ahead of the game, already there in the situation that is coming, already ready to face the task ahead, one day at a time.  He’s ready to carry us through, ready to provide whatever we need, ready to pour his blessings out on us when we trust him to do exactly that. 

My sister reminded me that God is also El Roi, “the God who sees”.  It comes from Genesis 16 when Sarai gave Hagar to Abram then Sarai mistreated Hagar and she ran.  God met her in Genesis 16:13 –  She gave this name to the LORD who spoke to her: “You are the God who sees me,” for she said, “I have now seen the One who sees me.”  I love this –

God as El Roi is never caught by surprise; He never says, “Oh my! Look at that! How did that happen?” For He knows our future as well.

Nothing is a surprise to him.  So whatever you are facing today, whatever is coming in the days or months ahead, my prayer is for you to find comfort in El Roi and Jehovah Shammah.  He sees, he is not surprised and he is already there.

Twelve years.  The same amount of time my daughter has been alive.  Twelve whole years and she is gone.  The pain has eased with time but the hole in my heart doesn’t get smaller as the days and years pass.  The cliche that no one can take the place of your mom is really quite true.  Because no one will ever fill the corner of my heart that is my mom’s.  I just pray to God I get more years with my children than I had with my mom.  I was newly married when she was diagnosed with multiple sclerosis then pregnant with Brad when my sisters and I had to put her in a nursing home.  When she died I was 27 yrs old and had two littles ones ages 2 and 8 months.  God took her before I was ready for her to go but I realize she did what God called her to do here and now she is dancing and free from the disease that ravaged her body.  And I miss her.  But the legacy she left is one that my heart will hold on to until I get to see her again. 

On Memorial Day we went to her grave, which I don’t like to do because she isn’t there, and put flowers there for her.  She always loved pink flowers.  So mom, on this day that most people label as the day you died, I know it’s really the day  you lived.  The day you ran into Jesus’s arms and got to hear him say “well done my good and faithful servant”.  It’s the day my sisters and I shed so many tears of sorrow but it’s the same day you shed tears of joy as your body was made whole again and you were able to walk and run through heaven’s beauty.  And some day, I will see you again, mommy.  I love you!

The frenzy and craziness of summer is here with kids coming and going all day long.  I think there has only been one night since school got out last week that at least one kid hasn’t had a sleepover.  Ryan seems to be adjusting well to the new routine, and I know it helps that he wasn’t in school all day so he isn’t missing it as much.  As long as he gets out of the house at least once a day he does OK.  In two weeks we start our summer camps, and Trevor is in full swing with baseball. 

I love how God speaks so gently to me when I need it most but also least expect it. These past couple of days have brought a lot of time simply thinking and having to adjust my attitude about all kinds of things.  And that reflection has brought me to a place of realizing, once again, that I am exactly where I am supposed to be with my family, my job, my friends, my daily activities.  It’s very easy to get caught up in the idea that if this changed, my life would be so much better, if I moved over here, I could get rid of this stress and things would be easier.  But then I come back to the familiar realization that no matter where I am, what I face or how I view my circumstances, life is always going to be hard and there will always be struggles.  My job is to be able to weed through the stress, anxiety and pain to see, and enjoy, the good that every day brings.  Because no matter how bad things get, there is always, always, always something to be thankful for, something to bring joy, something to smile about.  Just this morning I was once again reminded that my attitude is so much more important than my circumstances as I read from Jesus Calling by Sarah Young:

I am involved in each moment of your life.  I have carefully mapped out every inch of your journey through this day, even though much of it may feel haphazard.  Because the world is in a fallen condition, things always seem to be unraveling around the edges.  Expect to find trouble in this day.  At the same time, trust that My way is perfect, even in the midst of such messy imperfection.

Stay conscious of Me as you go through this day, remembering that I never leave your side.  Let the Holy Spirit guide you step by step, protecting you from unnecessary trials and equipping you to get through whatever must be endured.  As you trudge through the sludge of this fallen world, keep your mind in heavenly places with Me.  Thus the Light of My presence shines on you, giving you Peace and Joy that circumstances cannot touch.

As for God, his way is perfect; the word of the Lord is flawless.  He is a shield for all who take refuge in him. ~ Psalm 18:30

For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. ~ Isaiah 41:13

This last verse is one I have carried in my heart since Ryan was very young.  It’s been the one verse I hold on to whenever things get hard, when the journey with him seems unbearable, when I have reached the end of my rope and I have nothing left to do but cling helplessly to the One who saves.  It’s a simple yet profound reminder that no matter what life throws at us, it’s not too much for God.  Nothing is too much for Him.  His resources are limitless, His grace is sufficient, His love is overflowing, His forgiveness is new every day, His mercies are amazing, His Word is true and His name can be trusted.

There are many of you who come to mind who are also facing some very difficult situations right now.  My prayer is for you to also reach out to the One who is enough, who loves you more than you can possibly imagine, who wants nothing more than to comfort you and keep you in his perfect care, who has an amazing plan for your life, who longs to be worshiped and praised, who gives peace in the midst of the storm.  He is enough.

Three days until summer break!  I have to say I am really looking forward to lazy mornings and not having to get the kids to school.  And the kids are looking forward to sleeping in and staying up late too.  It’s been a busy week with everyone coming and going but it’s been a pretty good week all in all.  There are lots of changes coming in the next couple of weeks with school getting out, summer sports and camps starting, the kids getting used to their summer chore charts again.  They are never happy about the increased responsibilities but like I tell them every summer, you have how many hours to play with your friends?  I’m only asking for about thirty minutes of your day.

On Wednesday, Brad and quite a few of the other eighth grade boys from youth group got together for dinner at Valentino’s and had a “True Love Waits” commitment saying they are making the choice to honor God and their future wives by waiting until marriage to be intimate.  I know Brad is a young man with strong convictions and pray he honors that commitment.

I found this picture of Sidney when her hair was as curly as can be.  We never took her in public without someone making a comment on how cute her hair was.  This is one of my favorites.

And then of course another favorite is her with her hair brushed out.  Years ago my sisters actually asked if it was a wig on her head but no, it’s really her hair.  Some people would give an arm to have all that hair!  This picture makes me smile. 

And sweet Trevor, my baby who is growing up so fast and heading to junior high this fall….He spent Friday at the Omaha zoo with his class and got to spend the day with several of his best friends.  They all had fun, and Travis went along just like he did with the older two kids.  This week they are all going to a baseball game then the fifth grade party is Thursday night.  I don’t know how he grew up so fast.  It seems it was just yesterday we had to watch him like a hawk because he loved to flush everything down the toilet or put it in the trash.  I’m amazed all our plumbing is still intact. He was a very sweet, but sneaky and naughty toddler!

And Mr. Ryan had to come to the ER to visit me this weekend because he got a huge splinter stuck in his finger.  Alli and Sidney couldn’t get it out so they brought him to me, and the staff helped our PA.  It took five of us holding him down to get it out.  Poor kid doesn’t understand but he did calm down when he got to ride around the ER in a kid wheelchair, of course, pushed by his beautiful big sissy.  On a good note his GI system is not getting worse.  He is tolerating four boluses into his stomach every day but is still having frequent belly pain.  We still don’t have his system back to where we’d like it to be, and maybe never will, but at least he is home. 

Happy Mother’s Day to all you moms!

It’s been a beautiful day except that I am not feeling the best.  I have had a sinus infection this week and today am fighting a headache, fatigue and general achiness.  I feel pretty blah but it’s still been a good day.  After church this morning Travis grilled steaks and his parents came over for a few hours. And in Travis’s quick wit and endless humor, he decided to join in the picture taking with this pose.  Never a dull moment!

Mother’s Day can be hard for me because it reminds me how much I am missing out with my mom.  We were always very close and not having her here to celebrate the joys and cry together in the tough seasons is still tough at times, even after almost 12 yrs since Jesus took her home.  No one can ever replace a mom but I have to say, I have several really wonderful older women in my life who bless me with their love and life lessons. 

Ryan is still not back to his new normal as I call it.  We did the huge doses of Miralax last week which caused severe diarrhea but once we went back to the normal daily dose, he stopped pooping again.  He still has several periods each day when he is in pain and has neurological symtpoms I’ve mentioned before – nystagmus in the eyes, shakes, unable to walk.  It’s very strange how he reacts after getting his meds in either the G or J tube.  So, I’ll call the GI doctors again tomorrow and see what they suggest.  I’m not sure what is going on but I know we can’t continue to give him large doses of laxatives; that can’t be good on him long term.  We’ll see what this week brings.

Ryan is on the mend!  Thank God.  And thank you all for praying for him.  We did what the GI doctor told us to do and gave him 1 1/2 times the adult dose of Miralax twice a day (that’s six times his normal daily dose) and it certainly worked.  As Travis said, “If we didn’t have a leather couch it would have been on the curb”.  Let’s just say Ryan went from not pooping at all to liquid.  It was a mess for a few days but he is on the mend and is digesting again.  Sunday night he ate two biscuits and has since eaten cheese and Cheerios.  He isn’t eating much at all and is completely dependent on the tube feedings which I don’t think will change, but at least we know his stomach is digesting.  He’s back to getting only nightly feedings on the pump and four boluses a day into his stomach.  The blessing in all this is that we now know how to handle things the next time his system starts to shut down.  We both knew if we could just figure things out now that he has the J tube we’d be fine.  If we can handle his GI tract shutting down and avoid the hospital, then we are good as gold.    He’s still happy as ever and is doing well othewise. 

The older kids are excited school is coming to a close.  Trevor has several trips coming up – Omaha Zoo, Saltdogs game, end of the year party.  Our school does a great job celebrating the end of elementary school.  He can hardly wait to get to jr high next fall and I think part of that is having older siblings.  Sidney had her first 4×4 volleyball game last night and it was fun to watch too.  There are no coaches and the kids just get out there and play together.  It was relaxing and a much different pace than tournament play.  Of course she was still as competitive as ever but she’s having fun.  And Brad had his last jr high band concert and gets his Presidential Academic Award tomorrow at a breakfast for the students and families.  He’s very excited to start golfing again with one of his friends.  We are getting him a city golf course pass for the summer so they can golf as much as they want. 

Travis and I are doing well.  He’s busy this month with several days of training and has picked up some extra hours due to the national car races at the airport in May.  The Lincoln airport has a mile long landing strip because it used to be an air force base and is one of the few places the shuttle can land if necessary.  Because of their extra space, they host national car races out there every year which Travis likes to work.  My week has been insane and it’s probably why I feel crummy today.  I worked three nights, was off one, worked another night, off one again, and work two nights.  This isn’t my normal schedule and let me tell you I couldn’t keep this schedule up if I had to do it all the time.  Otherwise I’m very excited to plant flowers this week; it’s one of my absolute favorite things to do.  I think we have fourteen or fifteen flower pots so it takes a while but I’d do it every week if I could.  I think I just love the color and beauty the flowers bring. 

On Saturday we had a meeting with the Masterpiece group at church.  This is a new ministry for special needs kids and adults our church is starting and we are blessed to be a part of it.  It’s really exciting to see where we will fit in and how our experiences may help other families.  We were sharing our story since there were a few people we didn’t know and one of the other men said “if it’s God’s will, it’s God’s bill”.  It sounds kind of cheesey but it’s so true.  When God decides it’s time for us to start Ellisbrook, he will provide what we need, including a bigger house, to do it.  My heart has been so moved toward caring for special needs adults and I am so excited to see this up and running.  We will start small with just a few adults in our home and if God chooses to grow us into more homes and as big as my dreams are, then He’ll do it.  For now we just keep praying about it and trust that when the time is right, we’ll know it and move forward. 

Thanks again for all the support so many of you have given us over the past several months.  I am still in awe, every single day, of how loved our little boy is.  How loved all of us are.  It’s very inspiring to see the goodness of God lived out through the generosity of others.  We have so many cards and emails from people expressing their concern for our family and it’s been an honor to be able to say thank you and really mean it.  I know all of the events that have led us to where we are right now on our journey are simply a part of God’s plan to prepare us for whatever is to come.  It’s exciting because we’ve learned to thank God for his provision in the past, live by his grace for today and believe in his perfect will for all of the tomorrows to come.

It’s been a frustrating week trying to figure out what to do with Ryan.  On Monday, as I said in the last post, we took him to the Children’s ER in Omaha and were sent home with the diagnosis of constipation and told to do an enema every day for three days.  Well we did two enemas and neither was very successful.  Today the GI doctor said not to do enemas and to increase the Miralax he is getting every day from one dose to two larger doses.  If he doesn’t poop in the next three days then we have to call her back and see what the next plan is.  We certainly don’t want him hospitalized since that is an absolute pain in the rear but at the same time, we don’t want to do nothing then end up with a bigger problem than we started with because we ignored his symptoms.  We simply don’t know what is acceptable and what isn’t now that he has the J tube which allows us to feed him directly into his small intestine.  We’ll figure it all out eventually but it’s been very frustrating watching Ryan in pain and not being able to do anything about it.  The nerve pain in his abdomen when we give his meds is still going strong and that’s probably the worst of it all.  Within ten minutes of giving his meds, he gets nystagmus in his eyes, his body shakes and he can’t walk from pain.  We will pick him up and take him to bed and he holds on to us so tight it’s as if he is scared to death of something. It’s heartbreaking because he can’t tell us what he feels and frustrating beyond belief at the same time because no one can figure it out.  So, we’ll see what the next few days hold and go from there. 

I am so very grateful Travis is home with Ryan.  God certainly knew what he was doing by allowing Travis to lose his job while we were in the hospital in February.  It was painful at the time but it’s actually been a huge blessing because Ryan is still only in school for 2 1/2 hrs a day and he definitely needs one of us there to take care of him at all times.  Some days he doesn’t even make it to school because of pain or needing more sleep.  We’ve been able to see firsthand how God prepares the way and allows situations that we label difficult to actually become blessings.  It’s been a long journey getting  Travis through three years of school only to lose the first job he got after receiving his masters degree.  But it’s all about His plan, not ours; we also know both of our educations and job experiences will help tremendously when we are finally able to do Ellisbrook. 

The older kids are doing well.  Trevor is in full swing with baseball practice – no games yet – and is really doing well considering he hasn’t played before.  Sidney starts a 4×4 volleyball league next week and is very excited to be able to play through the summer.  And Brad just had his last jr high band concert tonight.  He did great and is really looking forward to high school and all the opportunities it will bring.

I need to get some more pictures on here so hopefully I can do that soon. Enjoy your day!

So this morning I called the pediatrician’s office and our doctor was not in the office today.  The PA who saw Ryan on Thursday, and is fabulous by the way, thought we should go to Children’s ER because of his symptoms.  So we packed a bag and off we went.  I will be nice and not say what a bunch of morons the Children’s ER staffs (oops, did I say that out loud?).  Never have been good keeping my opinions to myself, have I?!  Can you tell I was slightly irritated? Anyway, back to the non-morons in the ER…..now you have to remember I am an ER nurse so I’m slightly biased and opinionated about how we should be treated.  And let’s just say I was less than pleased with the care we received.  The triage nurse, who was very nice by the way, asked us about Ryan’s allergies and medications which is fine, but when we got to the room, we didn’t see the nurse until after the doctor came in and told us he wanted to start with an abdominal xray which I expected.  She came in and told us to put Ryan in a gown and keep him upright for ten minutes before someone came to get him.  That’s it.  No questions, no interaction with Ryan, no assessment.  Then the doctor came back in and said “Ryan is constipated” and that there is no reason to keep him so he’ll get our discharge paperwork ready.  We saw the nurse one last time for about two  minutes and came back home.  Travis and I were both less than pleased with our time there and have vowed we will never go to that ER again.  Now I have to say something nice about the hospital – the hospital staff on the floors at Children’s is another story; they are wonderful and everyone we’ve met while inpatient has been great there. 

I am not at all convinced the doctor is right.  From the symptoms Ryan is having, I think his intestines are stopping again but we’ll wait a few days and see how he does then either go to my ER (which is what we should have done in the first place) or convince the doctor to do an outpatient xray to see if anything has changed.  In the mean time we did another enema tonight and will do another one tomorrow.  The issue is that if nothing moves on its own, the enemas aren’t going to fix the problem.  This is very frustrating, but it is what it is and we’ll just deal with it. 

Brad was home sick today and will be home again tomorrow.  He has a lovely stomach flu and was up several times last night vomiting.  Now he is weak, tired and has a headache so he’ll stay home tomorrow and rest.  Sidney is a Pound Pal so she spent a majority of her day setting up and getting ready for the Humann fifth graders to tour the junior high then led some of them – including Trevor – on a tour and ate lunch with them.  Trevor had a great time and is very excited to get out of elementary school.  He is looking forward to lots of fun trips and activities coming up as he finishes his years at Humann.  I can’t believe my baby is old enough for junior high already but I know he’ll love it. 

Travis saw the ortho doctor again today who said his foot is still healing and to allow a full six months before the bone is completely healed but he is doing well.  And our sweet little puppy Chewie is doing great.  He has turned out to be a very sweet, laid back dog who is fluffy and cute as can be.  And he has become Travis’s baby.  Just today Chewie was sitting at the top of the basement stairs whining and crying because Travis went down there, and the dog still won’t go down those stairs.  I said, “Chewie hush!” and Travis replied, as I rolled my eyes, “don’t talk to my baby like that.  He misses his daddy”.  Good grief.  No wonder the dog sleeps in our bed!

Ryan is having some rough days lately. He has been gagging and coughing a lot but thankfully he hasn’t thrown up yet. That will be our indicator he needs to be hospitalized again. He is also having a very hard time pooping which isn’t good. In the past week we’ve given him large doses of Miralax, prune juice, Milk of Magnesium, milk and molasses enemas. And things are still not working right. I’m very concerned he is slowly shutting down again. We took him to the doctor this week and he has an ear infection and a bad cold. That’s all it takes to shut down his GI tract so we put him back on 24 hour feeds again to avoid giving him large boluses of meds and formula which are harder for him to process. So we’ll see what happens but hopefully this will pass.

We are headed to Mahoney State Park to meet all the McClinticks for dinner. Enjoy your day.

One month from today school will be out for the summer and we will have one in high school, two in junior high and running kids to three schools.  It’s hard to believe how old the kids have gotten but they are fun and we certainly enjoy our time with them.  We are getting the kids organized for this summer with activities but thankfully are not overbooked so the kids should be able to spend lots of time with their friends.  Trevor started baseball which will keep him busy throughout the summer, and he’s also going to Camp Sonshine again for the fourth year.  Sidney is going to volleyball camp again and is going to play beach volleyball.  And Brad will be busy with weight lifting at high school, football camp and his drums.  We’ll probably put Ryan in summer school again just to give him something to do since he tends to get bored.  All I care about is being able to plant flowers soon!

Speaking of Ryan he is doing OK.  He has good days and bad days but thankfully things are still moving in his digestive tract so we are able to stay home.  He is still having pain and trouble stooling but we are able to manage things thankfully.  Ryan still requires so much sleep that he often sleeps for 3 hours in the morning which is why we haven’t put him back in school all day.  Hopefully by the fall he’ll be in a better place because he is so social and loves to be at school. 

Brad just got a letter today from his school saying he is receiving the Presidential Academic Award on May 10th.  This is a national award for kids leaving elementary, jr high and high school who have maintained a GPA of 3.5 or higher and scored at 85 percent or higher on a national math or reading test.  He’s pretty proud of himself and should be.  The school is having a breakfast and ceremony to award the kids.  I have to say I’m so thankful for three kids who value their education and strive to do their very best.  They are all doing very well and it’s because they push themselves.

There isn’t anything else new going on.  My job is going well and Travis stays very busy at home with Ryan and working part time.  Thank you for your continued support and love.  You all have blessed us more than we can express.  God has been so good to meet our every need and teach us that life is about serving and giving to others to honor Christ. 

I’m in love…..with AOL Radio on my iphone.  Their Christian station is amazing, and I’ve been listening to it all night.  Those who know me well know I love to sing and am very moved by it.  Nothing energizes and fills me up like music.  Huge fan here!  So tonight I heard this song and fell in love with the lyrics which I copied and pasted below.  I am so touched by these words –

recklessly abandoned, never holding back, i want to live like that

What a statement.  I’ve been so convicted lately about the legacy I am going to leave some day.  The legacy I’m living each and every day right now.  Am I someone who reflects the love of Christ?  When people talk to me, do they sense compassion, acceptance, respect? When they see me, do they see You? Of course I am so hard on myself that when I look in the mirror I see all the things I don’t like about myself and everything I wish was different.  I guess in some ways that can be a good thing because it keeps me on my toes, constantly aware of the message I am sending to others.  This week I’ve had a couple of conversations with people who have really made me think about who I am, what I believe and how willing I am to stand up for those convictions I strongly believe in.  I want to be someone who lives so that everything I do points to You.

Like Like That – Sidewalk Prophets

Sometimes I think
What will people say of me
When I’m only just a memory
When I’m home where my soul belongs

Was I love
When no one else would show up
Was I Jesus to the least of those
Was my worship more than just a song

I want to live like that
And give it all I have
So that everything I say and do
Points to You

If  love is who I am
Then this is where I’ll stand
Recklessly abandoned
Never holding back

I want to live like that
I want to live like that

Am I proof
That You are who you say You are
That grace can really change a heart
Do I live like Your love is true

People pass
And even if they don’t know my name
Is there evidence that I’ve been changed
When they see me, do they see You

I want to live like that
And give it all I have
So that everything I say and do
Points to You

If  love is who I am
Then this is where I’ll stand
Recklessly abandoned
Never holding back

I want to live like that
I want to live like that

I want to show the world the love You gave for me
I’m longing for the world to know the glory of the King

I want to live like that
And give it all I have
So that everything I say and do
Points to You

If  love is who I am
Then this is where I’ll stand
Recklessly abandoned
Never holding back

I want to live like that
I want to live like that

Here’s a link to the song on YouTube if you want to listen to it:  http://www.youtube.com/watch?v=mwZsywhXDg8

The other thing that’s captured my heart lately is Ellisbrook.  Travis just said the other day “our hearts have really been changed” and he’s right.  If you had asked either of us four or five years ago if we would ever consider giving up our hopes and dreams to start a residential home for disabled adults, we’d have probably laughed.  But today we both stand with hearts burning for those who the world rejects, those who are vulnerable, those who desperately need love and security and stability.  And that’s exactly what we want to give them.  But it has to be a God thing because we don’t have the resources, finances, ability to do this on our own.  We strongly believe God laid this ministry on our hearts, and He is going to provide.  His resources are limitless, His plans are perfect and His timing is always right on.  So as we wait for things to happen in His timing, we ask you to pray for this dream of ours.  We dream big hoping for a huge acreage with several houses where families live with 3-4 disabled adults in the home.  And while we will probably start small with just our home, we know if God wants to expand Ellisbrook, He will.  We dream of dogs and chickens and gardens and family dinners and chore charts and outings and basketball and fishing and lots and lots of love.  Loving on those the world calls handicapped, special needs, mentally retarded, broken, useless.  Because when I look at my Ryan and the joy he brings to our lives, I know there are so many others just like him who deserve to be loved and accepted just as much as he is. I see Jesus in my Ryan. I  want to be Jesus to the least of those.  And that’s our goal.  To bring Jesus to them with reckless abandon.  Yes, I want to live like that.

This is Chewy.  He’s an eleven week old male Shih Tzu we surprised the kids with yesterday when they got home from school.

We named him after Chewbacca from Star Wars (above).  Wicket was our first thought, as in Wicket W. Warrick also from Star Wars, but didn’t love the name (below).  And originally we went with Louie but today decided Chewy fits him much better.

It was fun because the kids had absolutely no idea we were talking about getting a dog again.  He is the cutest, fluffiest, most laid back, sweet little bundle of fur I’ve seen.  Of course all puppies require a lot of time and attention, and he is no different.  He’s spoiled rotten and certainly hasn’t lacked for attention except at night when he thinks he should be on our bed snuggled up in our necks all night, not laying in his crate. 

Even Ryan is warming up to this little fur ball and has suprisingly given him two kisses.  Last night he sat next to Chewy on the floor and kept picking his tail and back leg up trying to throw them then would giggle.  The dog has already learned to completely ignore him.  He will pet him occasionally too and I think with time they will become fast friends.  Ryan never took a liking to our big dogs but seems to think this little creature is pretty funny, and he’s obviously not intimidated by his size.  Eventually we’ll teach Chewy to play catch with Ryan because his favorite thing in the world is to throw things and if the dog will return them, they’ll have quite the perfect game going on.  It has been kind of funny to watch because Ryan has no idea Chewy’s toys are for dogs.  He loves to take the toys out of the dog’s mouth and throw them across the room with a huge belly laugh.  So now we have two babies, not one.  Good thing they are both so cute cause they both like to get into things they shouldn’t!

This week has been a bit tough.  We’ve taken some steps backward with Ryan but nothing that is too alarming at this point.  He has been gagging a bit after his meds are given and having some stomach pain, hitting at his belly.  He’s not doing this every time but on occassion.  And the seizures are coming back too.  Not the big ones that make him fall over; those are the ones this last surgery was suppose to stop, and did.  The mouth seizures are back and today he was tremoring (I doubt that’s really a word) so I had to give him Ativan.  Travis took Ryan to Omaha Tuesday while I slept to see the neurologist.  He didn’t have any insight into why Ry is having stomach issues but did change one of his medications around.  He also changed the frequency of Ryan’s vagus nerve stimulator so instead of turning on for thirty seconds every five minutes, it now turns on every three minutes.  I’m not sure that’s going to make much of a difference, but it’s worth a shot.  The doctors really don’t know what to do for him anymore.  But again, he’s happy.  And into everything.  It’s like having a one year old who never grows up.  Anything and everything he can throw down the stairs, he throws.  It’s common to hear people say to others when we can’t find something “did you look at the bottom of the stairs?”.  He’s really into slamming doors – repeatedly – and jiggles the door handle until it opens again only to slam it shut and laugh.  He has been very curious lately getting into dresser drawers and closets. We’ve found all kinds of things stuffed where they don’t belong.  I was in the kitchen the other day and kept hearing him laugh.  I knew he was getting into things and sure enough, he got into his closet and was throwing all his feeding supplies down the stairs.  And I found a dirty washcloth and some other stuff from the kitchen counter stuffed in the silverware drawer. He’s a curious toddler in a huge eight year old body.  And while his antics are often amusing, he can be completely exasperating at the same time.  But he’s happy and listening to him laugh never gets old.

Everyone else is doing just fine. Brad has been exercising a lot to get ready for summer football conditioning and can’t wait to be done with jr high. And he’s still the most social of our kids who can’t bear not to be with his friends every second he’s not in school.  Sidney has only two more volleyball tournaments left for the year and is really transforming into a beautiful young woman.  Trevor has been spending lots of time at the park after school and loves his new cell phone.  I have to say it’s nice to be able to reach him now when he’s not home. He starts baseball practice next week and was also put in the gifted program for jr high.  I still can’t believe  the kids are done with elementary school after this year. Or that Brad is starting high school.  And by kids I mean the older three; Ryan is kind of his own entity.  At our house it’s like having three kids and Ryan.  Trevor really is like the youngest because he’s really the last to do all the normal things kids do.  That might sound cruel to some people but Ryan will never take a test, read a book, make a science project or get excited because he got an A on a report.  He’ll never understand what jr high is or worry about what others think.  He’ll never have a cell phone or ride his bike to a friend’s house.   He’ll never spread his wings, learn to drive or have to decide where to go to college.  In some ways it’s easier to watch the kids grow up and get excited about their achievements and successes because we will always have Ryan who isn’t going to experience the same things the older kids will but instead will always rely on us for his care.  He’ll never stop needing us. It’s just a different way of life, an unusual way of looking at the kids as they grow up.  But it’s our normal and we’ll take it.

Ryan is doing so well!  His stomach is healing, and we are certain it is because so many people have been praying.  Thank you!  God is good and we are really enjoying the spunky little boy who is into everything again.  He can be a real pain in the rear but that’s simply because he is developmentally just a curious little one yr old in most things. He’s back to his annoying throw-everything-down-the-stairs routine and when we can’t find something, we all simply say “check at the bottom of the stairs”.  If we ever move we’re having an enclosed staircase! 

As for his feedings, we are trying something new this week.  I bolused 2 oz of formula into his stomach and within an hour it was digested.  So later in the day I did 4 oz of formula and 1 oz of water yesterday straight into his stomach and he did great.  I wrote down a new schedule we are trying and hopefully it will work for now – keep overnight feedings on the pump at 70cc/hr into his small intestine and give four boluses into his stomach during the day.  I figured out the calorie count and this gives him about 1200 calories a day with the formula which is close to half way between the 1500 he was getting on all day feeds with the pump and the 800 he was getting with three boluses before his brain surgery.  He is eating more these past few weeks but not nearly as much as before surgery.  And he still won’t drink anything from a cup at all.  Hopefully he will continue to tolerate the new schedule so we don’t have to keep him on the feeding pump during the day.  I can’t tell you how nice it is not having him carry the backpack around all day!  I don’t know that we are going to hurry to have his feeding tube changed back so it only goes into his stomach instead of what he has now with one port into his stomach and the other in his jejunum.  We are well aware that he is very prone to both ileus and gastroparesis problems now since he’s had both so we will probably keep the g/j tube so we are ready if we have more problems down the road. 

He has been saying bye independently and can now say hi without being prompted.  Other than that mom is the only word we hear him say and even that is sporadic.  Of course he can still repeat a few words when prompted, and we always hear all his loud squeals and laughter.  And he’s enjoying school but is still only going for 2 1/2 hrs each day from 1-330.  He is taking naps in the morning for up to 2 1/2 hrs so we don’t want to shorten those since he is still healing.  This works for now so we’ll do what’s best for Ryan and keep him home most of the day. 

Everyone else is doing just fine.  The older kids are ready for summer and are starting to count down the weeks until summer break.  Trevor is excited to start jr high and Brad is really excited to start football weight training in June for high school.  Sidney has two more volleyball tournaments left then she is done until summer camps.  And Trevor starts baseball soon which he has never played but is very excited about.  Travis and I are good and have enjoyed some more time together lately so we feel much more connected than we had been during the height of Ryan’s hospitalizations and those first couple weeks home.  Life just marches on as we all know.  Now if only we can get everyone through this allergy season!

I love the Proverbs 31 daily devotionals which is where this one came from.  Had to share it today.  We are all broken; it’s what we do with that brokeness that counts!

Broken – Kelly Langstrom

“Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!” 2 Corinthians 5:17 (NIV)

Broken.

It was now broken, with an asymmetrical flutter to its wings that moments before lifted the butterfly in a dance around the church lawn.

The butterfly wasn’t what first caught my eye though as I stood in line to pick up my son, Alec, from a day camp for special needs children. It was the boy with autism that first captured my attention. He was tugging on the arm of his caregiver with a brawny strength, roughly pulling her this way and that.

As I watched the two in their strange dance, my heart ached for the boy just as it does whenever I see a child with autism. A familiar feeling rose in the pit of my stomach. It was the same one I felt when I didn’t know how to reach my autistic son in his younger years. I’ll never forget how hard and long the days could be.

Lost in my memories, I was more than happy when the butterfly caught my eye. As I watched it, in one quick swoop-and before his caregiver could stop him-the boy’s hand captured the butterfly in a clenched fist. She pulled it free from his grasp and I watched fragile wings fall to the sidewalk. The butterfly fluttered for a few moments before dying.

Isn’t it strange how something so simple can hit you so hard? Grief rose in the back of my throat, but I wasn’t sure what hurt me most. Was it the brokenness of a boy who longed to touch something beautiful and carefree, only to crush the life from it? Or was it the thought of how quickly something so lovely can die? The vivid scene stuck with me all night, broken wings falling to the ground.

The next morning, I walked with Alec up to the church for another day at camp. I stepped onto the sidewalk behind a little girl with Down Syndrome. Without a care in the world she sang, and when I heard the words, I stopped in my tracks:

“I am a beautiful butterfly! I am a beautiful butterfly”

With each light step, she twirled and sang this little song. I realized then what God was showing me.

Yes, Lord, I get it! These children are like that butterfly. They are full of beauty! Full of grace and wonder, and even so, they are broken. But oh, how lovely and special they are to You, Lord. And how precious to behold one single moment of the beauty that lives within them!

As a parent to one of these broken, beautiful butterflies, it is a privilege to see God carry him through painful days. And I know I’m graced to be touched by the beauty that exists in brokenness. To feel the loss of what might have been, the crush of overwhelming need, and the Divine Light that runs through it all and makes it worth our efforts.

Alec’s teenage camp buddy leaned down to greet my son with a high five and a smile. It was then I noticed the counselor’s shirts with the words “I am a New Creation” on the front and on the back was the week’s Bible verse:

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! (2 Corinthians 5:17)

Like the butterfly, we’re all broken. But, praise God, there is great beauty within our brokenness when we allow God to carry us through the pain. Better yet, we are new creatures with a future and a hope of eternity—unbroken—in Christ. One day each broken body will be resurrected to a new beauty unimaginable in this life.

Dear Lord, thank You for choosing me to love a child with a special need. Help me to see the beauty in my child through Your eyes, as a marvelous creation, beautiful and full of potential. You’ve promised a purpose and a plan for my child. Your Word tells me that You use broken individuals to do amazing things for Your glory. Help me then, Lord, to be all that my child needs me to be, as I rely on Your strength to carry us through difficult days. In Jesus’ Name, Amen.

Yesterday was Trevor’s 11th birthday and this is what he got.  It’s the electric bike he’s been wanting for over two years.  He was only able to ride it once because it started raining but I’m sure today with the sunny, hot weather we are having he’ll be out there quite a bit on it.  We had a fun day celebrating with one of his friends and all the grandparents.  Travis took Trevor and his friend to see Hunger Games right after school then we ate dinner at Shogun which was a lot of fun.  It’s a Japanese restaurant that has the grill at the table so it’s very entertaining. 

Otherwise things are good around here.  Ryan is doing exceptionally well this week.  We figured out a new way to give his meds over a 20-30 minute period and have not had any retching for the past four days!  It’s a huge answer to prayer; we’ll take it!  He also started back to school on Thursday in the afternoons only.  He was exhausted that first day but Friday did much better.  I think we’ll give it another week before we see if he can handle longer periods.  He’s still taking a pretty long nap every morning so we may let him continue with that for a while. 

Sidney and Travis are at a volleyball tournament today and the boys and I are home although Brad and Trevor will be off with their friends soon.  I had breakfast with one of my best friends and probably could have sat there for another 2 hours chatting.  Tomorrow we are heading out to the country to spend the day with some wonderful friends.  The kids love going out there because they have 4 wheelers and lots of space to play.  Trevor is taking his new bike out and hopefully they can all go fishing too. 

We have been blessed with a pretty good week, especially with Ryan doing so much better.  Thank you so much for all your prayers.  God continues to amaze us with His goodness in many forms. 

Wow.  Not sure how five days have passed since I last updated but I guess this week has flown by faster than I anticipated.  It was busy.  Travis started the week with a trip to the ortho doc who said his foot is still not completely healed and he looks good, but no exercise for the next six weeks which is when he sees the doctor again.  Then Ryan saw a new dentist on Tuesday whom we really liked.  He explained a lot more than the last dentist we saw, and said Ryan’s teeth are about 7 1/2 yrs old developmentally, or one year behind his biological age.  He is doing fine and the doctor said Ryan doesn’t need xrays for two more years and he wants to do a thorough cleaning the next time Ryan goes under general anesthesia.  This dentist has rights at Children’s, UNMC and both Lincoln hospitals which is helpful.  His hygienist cleaned Ryan’s teeth which he hated, but that’s the first time it’s ever been done so Travis and I were very happy about that.  On Wednesday Travis took Ryan to see the neurosurgeon’s PA – finally – for his post op appt; she said he looks good.  Travis explained the problems we are having with the retching, nystagmus in his eyes, tremors and pain after giving meds.  She called us later in the week and said the neurosurgeon thinks it could very well be nerve related but he’s never really heard of Ryan’s symptoms.  Thursday Travis headed back to Omaha with Ryan again to see the GI doctor who is one of the doctors who saw Ryan in the hospital.  She is very sweet and said she, too, has not heard of all the neurological problems Ryan is having, but did say his intestines and stomach seems to be doing well and are progressing very slowly in the right direction.  The good news is Ryan is eating more and able to tolerate small amounts of food without throwing up or getting nauseous.  It’s progress we are very excited about but he is still nowhere near being able to get off the feeding pump.  And then there is still the issue of all these problems we are having with medication administration.  Once again Travis was told to see the neurologist which is what we will be doing on April 10.  We continue to try everything we can think of including eliminating medications, isolating each one to see if he’s developed an allergy or side effects suddenly but we simply can’t figure it out.  On Monday Travis is going to try a new schedule he came up with giving one medication every thirty minutes which will take three hours to finish.  He essentially tried this earlier with Ryan and after one of the meds, Ryan started retching and having lots of pain and tremors.  But then when I tried giving this medication alone again, he was just fine.  It’s puzzling and very aggravating not being able to figure out what is going on.  I am completely convinced this is all a neurological issue, and Ryan has nerve damage affecting his stomach and intestines.  I guess time will tell when we find out if the neurologist can do anything.  If not, we may end up needing a referral out-of-state which I certainly don’t want to do.

On a positive note, the older kids are doing great.  Brad had an all-nighter with some friends at their church so he slept a lot today then went to dinner with one of his best friends.  I made him go to bed early which he wasn’t thrilled about but thankfully he was smart enough not to argue with me.  These kids don’t understand how much sleep they really need but what kid ever does?  Trevor was all over the neighborhood today after a friend spent the night last night, and Sidney and I spent the day in Omaha at a volleyball tournament.  I was able to sneak out and have lunch with my dear friend, Michelle, then some of our best friends came over in the late afternoon for a while.  Travis is at work this evening, and I had a house full with lots of the kids’ friends here.  They have really enjoyed Sidney’s volleyball net in the backyard, and even the boys like to play.  It’s been so nice outside and Ryan has spent quite a bit of time on the deck these last few days watching the big kids run around out back.  Of course he loves to be in the front yard too throwing rocks all over the driveway but that’s what he loves to do out there.

Travis and I are doing OK although we seems to not get a lot of time together these days.  We’ve been so busy with appointments and me working that we simply haven’t made the time to get away for an hour or two.  It’s hard though now that he is working a few nights each week again with me working nights too.  And during the day Ryan is with us all day when we do see each other; we are making it a priority next week to get some time together even if we have to schedule it on the calendar.  That sounds pathetic, but with Ryan’s medical issues continuing and our new work schedules, it’s been hectic trying to fit time for us in.  I have to say what a blessing Lyndsey has been taking care of Ryan when both Travis and I are gone.  And hopefully Alli will be back doing respite very soon too.  We’ve had some very wonderful woman in the last few years who are priceless and have all become family, loving on all our kids and becoming staples around our home.  It’s been a big adjustment not being able to leave Ryan at home with the kids now that he has his feeding pump but this new normal is just going to take time to figure out.

This week at work there has been a lot of grumbling because we are changing from self scheduling to assigned lines, or six-week rotating schedules.  So now instead of picking when we want to work, we will have the same shifts every six weeks.  I’m fine with it because I’ve learned over the years to pick my battles and not let situations I can’t control get the best of me.  There are positive and negative results from any decision in life and I can either learn to accept things as they are or be miserable complaining about everything that is wrong in my life.  It’s simply a matter of finding  joy every day no matter what I am facing.  I’m not always good at it, but with time, God is really working on my heart showing me that what is really important is relationships, not circumstances.  My job is to be the light in the darkness and if I’m focusing on the things that are going well and learning to be thankful in every situation, that’s when I’m filled with joy.  It’s definitely a choice whether we let circumstances control our attitude, and thankfully, it’s one I’m getting better at every day, little by little. And it’s amazing how God continues to provide when Travis and I stop worrying and fretting over things we can’t control lately.  I love this saying! Isn’t it the truth?!

I wrote the following post yesterday but apparently never posted it.  I haven’t heard from Travis yet this morning after his appt with the ortho doctor;  he went to lunch with a friend right after his visit.  Ryan had a very rough morning and I literally didn’t get a thing done this morning until after 11:30 because he was having pain and wouldn’t let me get off the couch.  So I sat with him and read a book which was nice but I sure didn’t feel productive.  I’ve had a few friends tell me in the last few days that they haven’t heard from me in a while and it’s true.  These past 2 1/2 weeks have been a blur trying to figure Ryan out, working extra hours, trying to figure out our new normal with Travis working part time in the evenings again, kids coming and going.  It’s been a rough transition and I feel like so much of my time is spent working, talking on the phone to doctors and nurses, making appts or getting supplies ordered from home health and trying to spend time with the kids.  Travis and I haven’t had a lot of time together but hopefully things will settle down soon. God has been so good to supply all our needs and we feel very blessed.  I can’t put into words how humbled we feel! 

__________

Sunday:

I updated the video of Ryan and added a song and pictures from the past two years at the end.  It’s long but it’s our story in pictures. 

http://www.onetruemedia.com/shared?p=6a49f46d980f573a683065&skin_id=1011&utm_source=otm&utm_medium=text_url

Nothing has really changed here these past few days.  The kids are at the tail end of spring break and head back to school in the morning.  I’m sure it will be hard for them to wake up and get moving.  It’s been a good week, and we couldn’t have dreamed of more beautiful weather.  Ryan continues to retch but otherwise is doing OK.  He seems accustomed to the feeding pump and carrying it around everywhere.  He still isn’t handling a lot of stimulation and does best when he’s out for only an hour or so, still needing a lot of rest and sleep.  It’s going to be a busy week.  Travis follows up with the ortho doctor; he is healing but still limps a bit.  Then we have an appointment with the neurosurgeon on Tuesday, then the GI doctor on Wednesday and Ryan sees a new dentist too.  He is starting back to therapy at Madonna but we have no idea when he’ll get back to school.  We honestly haven’t thought that far at this point and he isn’t ready anyway. 

I’m off to work a few extra hours so this will be brief.  Enjoy the gorgeous weather!

So we are still having problems with retching and vomiting after giving Ryan’s medications.  I found some very interesting articles that I that I think apply to his situation and I’m really curious what you all think.  If you have an opinion or experience with any of the things we are facing, please comment.  We are grasping at this point and trying to find as much info as we can so when we go to Ryan’s GI appointment next week, we are armed with as much education as we can get.  Everyone who has dealt with any kind of chronic problem knows that doctors simply don’t know everything as much as we’d like them to.  And of course being a nurse I know that first hand from working in the ER.  God bless them, we have some wonderful doctors but they simply don’t have all the answers (which we definitely figured out once again during our most recent time in the hospital).  So, we feel like we need to gather as many ideas as we can before we head into next week’s appt.  Of course our goal is to stop the retching and keep Ryan from the pain he is having when we give his meds.  Again, quality of life.

The articles are below.  Read them if you have the chance and like I said, feel free to leave comments because we’d love to hear your opinions and advice.  And once again, in case any of you can’t remember or don’t know what is going on, here it is in the short version.

After coming home after four weeks in the hospital – brain surgery, ileus, three different hospitalizations, two ER trips, a g/j tube surgery, two weeks on TPN and finally getting Ryan’s small and large intestine to finally work but having severe gastric emptying issues and him refusing to eat at all now – Ryan is getting formula 24 hrs a day through a feeding pump at 70 cc/hr which gives him approx 1500 calories a day and is the only nutrition he gets.  He also gets five seizure medications plus one for mood.  The seizures are fairly controlled now (which might be the honeymoon period which lasts about 2 months for him after starting a new medication) since he started Depokene post op.  But he is retching for up to an hour starting 15-30 minutes after we give his medications in the morning and at night – all given very slowly with his feeding pump turned off for an hour.  Well we’ve tried everything under the sun to stop the retching and nothing is working – the list of what we’ve tried in the past two weeks is long.  He also retches if we make him change positions within an hour of giving his meds – carrying him from the couch to his bed or even just going from lying down to sitting.  That tells me this is a nerve issue causing his intestines to be very sensitive to any change. 

We simply are grasping for anything that will help get this retching stopped.  We both have very little hope we’ll get Ryan off the feeding pump and if we could just get him comfortable we’d be thrilled with that.  OK enough explaining.  Here are the articles I found that are interesting and maybe helpful to what Ryan is experiencing. 

http://www.articles.complexchild.com/00006.html

http://www.wellcome.ac.uk/en/pain/microsite/science3.html

http://www.articles.complexchild.com/00010.html

Otherwise things are good here.  The kids are on spring break all week and are constantly coming and going with their friends.  We splurged (not practical but very much needed) and took the older three kids to Omaha yesterday.  We saw a movie, went out for a nice dinner, spent the night at a newer, very comfortable Embassy Suites, swam, went to Defy Gravity (a trampoline jumping place that was very fun), had a wonderful time together focussing on the older kids.  Our sweet nurse friend, Aunt Candy, stayed with Ryan and did a fabulous job taking very good care of him.  I jokingly told her before we left “now make sure you don’t play with him constantly but let him take a nap when he’s tired”.  She is so wonderful and loves Ryan dearly; he was definitely in very loving, capable hands while we were gone.  What a blessing!  Thanks, Candy!  We love you.

http://www.onetruemedia.com/shared?p=6a49f46d980f573a683065&skin_id=1011&utm_source=otm&utm_medium=text_url

This is an old video I made of Ryan.  It’s about time to do another one but I’m sure some of you have never seen this so I thought I’d share it. 

Unfortunately he is still retching after some of his morning and nightly medications are given, worse at night.  I guess we need to call the GI doctor again.  If you didn’t see the last post by Sidney, check it out.  She did a wonderful job journaling and I need to convince her to do it more often!  There’s also a cute video of her and Ryan giggling together.

http://www.onetruemedia.com/shared?p=107e8fb46f49e6aa1c9a88f&skin_id=701&utm_source=otm&utm_medium=text_url

    Today Ryan was very happy to play with his toys and get out of the house. Ryan has had a big change from the first day with his backpack and now a week later he is used to it and it has become a part of his daily routine. My mom took this video of us thinking you guys might want to see some giggles from him.

    Everybody is doing good here. Trevor had a friend over for a while today and Brad is at the High school basketball game with a few of his friends. We dropped them off and took Ryan on a long drive. I can tell you that I have seen a lot today. Everything from huge houses to a home-made tent under a bridge. I can definitely say that I’m thankful for what God has gave me! Even if we are not rich or even if I don’t have as much as all my other friends or a big house, I can still say that I’m still grateful for my family and friends.

    Dad is at work tonight and is doing better but he is still sore. I just keep praying that he heals quickly. Mom had a long day too. She took me to Seward for my volleyball tournament and we were there from 7:30 til 2. Boy was it a long day for the whole family.

    Well we figured out a new game plan… To help Ryan stop  retching and throwing up. We found that if we turn the pump off then do his meds and then wait and hour and turn the pump back on it works!

  Almost of you know that us older kids are on Spring Break which means we have Monday through Friday off! My Dad, Mom, Brad, Trevor,and I are all going to Embassy Suites on Tuesday and spending the night, going to dinner, and then going to see a movie. It will be good for all of us 5 to get out and have some time not having to worry about Ryan. Speaking of which, Ryan is going to be staying here with my moms dear friend Candy, who LOVES Ryan.

     I hope all of you guys are doing well and have a great week! : ) 

Sidney