These last few weeks have been interesting to say the least.  To say that I’ve been having a difficult time would be an understatement, but in the same breath I also have to admit I’ve had some beautiful, blessed, undeserved days too.  The journey Travis and I are on right now is not easy, and it sure feels long, arduous and never-ending: I feel like I say that a lot!  He still is without a job after having sent in numerous applications in five states.  I can’t tell you how hard it is to wait.  All Some of you already know the same frustration and fear from past experiences or maybe because of a situation you are facing right now.  Everyone keeps saying “this is a tough economy to be finding a job”, and with his masters degree that means he’s not looking for an entry-level $12/hour job either.  It’s tough, and there is a lot more that we simply don’t say.  But that being said, it’s been a real battle of the mind, more so for me than for Travis for sure.  I can’t put into words, nor do I really want to, how much of a battle it has been to keep my mind focused on the positive, to stay away from worry and put my energies and focus on all the things that are going well instead of all that is not.  I’ve found myself pulling away from nearly everyone which isn’t always the best way to handle things either but sometimes (OK, usually) it’s easier to not have to answer yet another “how are you?” or for the hundredth time tell someone once again that no, Travis still has not found a job.  So instead of facing things, I’ve just pulled away into my little cocoon where I can control the environment and who I let into my shell.  Sometimes it’s simple self preservation and sometimes it’s very honestly a neglect of those I am close to.

The battle of my mind has honestly been the battle for my life lately.  There are just so many things going on I can’t say out of respect for my marriage, for our dignity and simply because it’s no one’s business (and a lot because of pride even if I hate to admit it), but with my transparency I will say it’s been the most difficult battle I’ve ever faced.  Worse than losing my mom eleven years ago, worse than all of Ryan’s diagnoses, worse than January 4, ’08, worse than the medical issues we face every single day.  On some days it is a minute by minute struggle to stay focused on God’s promises ~

Isaiah 43

Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
² When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.

Psalm 86

Hear me, LORD, and answer me,
for I am poor and needy.
² Guard my life, for I am faithful to you;
save your servant who trusts in you.
You are my God; ³ have mercy on me, Lord,
for I call to you all day long.
⁴ Bring joy to your servant, Lord,
for I put my trust in you.

⁵ You, Lord, are forgiving and good,
abounding in love to all who call to you.
⁶ Hear my prayer, LORD;
listen to my cry for mercy.
⁷ When I am in distress, I call to you,
because you answer me.

⁸ Among the gods there is none like you, Lord;
no deeds can compare with yours.
⁹ All the nations you have made
will come and worship before you, Lord;
they will bring glory to your name.
¹⁰ For you are great and do marvelous deeds;
you alone are God.

¹¹ Teach me your way, LORD,
that I may rely on your faithfulness;
give me an undivided heart,
that I may fear your name.
¹² I will praise you, Lord my God, with all my heart;
I will glorify your name forever.
¹³ For great is your love toward me;
you have delivered me from the depths,
from the realm of the dead.

¹⁴ Arrogant foes are attacking me, O God;
ruthless people are trying to kill me—
they have no regard for you.
¹⁵ But you, Lord, are a compassionate and gracious God,
slow to anger, abounding in love and faithfulness.
¹⁶ Turn to me and have mercy on me;
show your strength in behalf of your servant;
save me, because I serve you
just as my mother did.
¹⁷ Give me a sign of your goodness,
that my enemies may see it and be put to shame,
for you, LORD, have helped me and comforted me.

I know beyond a shadow of a doubt we are where God has called us to be for this moment.  Am I enjoying it?  Not so much.  But I know the God who saved David from death numerous times, saved  Shadrach, Meshach and Abednego from the fiery flames, saved Jonah from being eaten by the whale, saved Isaac by giving a ram for sacrifice in his place, saved the woman at the well, saved many from blindness and leprosy and drug addiction and selfishness and…..  How could he not also save me?  I believe in Christ’s death  and resurrection so how can I doubt His presence in my life when things are not going well, or as I should really say, not going as well as I would like.  I’ve been praying like crazy for God to give me an undivided heart as David prayed in Psalm 86 so I can trust His provision instead of also trying to figure it out on my own which isn’t working so well.

And I know the same God who provided this beautiful sunrise every morning in Florida,

is the same God who can be trusted to provide an equally beautiful sunset to close out each day. Such beauty. Every single day his mercies are new just as he displays his beauty differently every day too.

Who am I to doubt the goodness of God or question his ways?  Just because I’m not happy with his timing doesn’t mean he has forgotten about me or isn’t working in ways I simply can’t see or understand.  Some days the sun is a beautiful, glorious sight to see, keeping us warm, while at other times it feels hot, bothersome and causes damage when we are in its presence too long.  But always, it is fulfilling its purpose to bring light to our day.  So I often feel about God’s plan for my life.

Time does march on, no matter what we are facing.  And with time at our house lately that means crutches for Brad who hurt his right knee after being tackled in football last Sunday.  He has been hobbling around ever since and is being fitted for a hinged knee brace today.  We saw an ortho doctor, had an MRI and found out that, by the grace of God, he does not have any tears to the ligaments or cartilage so he doesn’t need surgery or therapy.  But he sprained his MCL which, according to the doctor, is the worst ligament to sprain and is the slowest and most painful to heal, and it will take a good two months before he is back in the swing of things.  He is doing well although he was devastated he can’t finish out the season with his team.  He continues to go to every practice and can be found in his jersey, leaning on his crutches on the sidelines of the games, encouraging his teammates.

Sidney loves being back in volleyball season playing and watching her Huskers.  She gets frustrated easily with her teammates because most of them are not as competitive as she is so she often tries to overcompensate and becomes a ball hog.  We’ve spent some time explaining she has to let others be accountable for their own positions.  She is going to need to move on to club volleyball this winter, and we are trying to figure out where to put her since this is a big commitment and the cost is high.  But she needs more instruction and to be pushed; this is her passion so we want to do what we can to support that and provide her with opportunities to be the best she can be.  She also is moving up to more dif classes at school this week which did a lot for her self-confidence.  She started the year in dif math but is now adding dif language arts and reading to the mix.

Trevor is doing great in football and is enjoying an easy academic year in fifth grade although school has always come very easily for him.  He really doesn’t have much new going on but has been a great help to Brad this past week.  And of course he spends as much time with his friends as possible usually being found in front of the TV playing video games or outside throwing a football around.

And Ryan…he’s doing well in school but struggling with continued seizures.  We see the neurologist again in two weeks and will have his stimulator turned up one more time but this is the last change we can do to the device.  It’s scary to think that in two weeks time we will be to the end of what we can do to help Ryan.  This is the last trick anyone has up their sleeve then we are out of options.  I know Ryan is in God’s hands, perfectly designed and just as He intended him to be, but I have to say it’s all very scary.  We have done everything we possibly can to give Ryan the best life possible, free from seizures and pain.  And while we believe he is relatively pain-free, he is certainly not seizure free.  What tomorrow brings is not up to me, but I will live every day loving him and knowing that no matter what happens with his seizures, we’ve done everything we can for him.  He brings so much joy to our lives and is a blessing that can’t be described by words.

Much love to you all.

This is where I am spending my week…..relaxing in the sun, listening to the waves crash and spending time with my sweet friend Becky in Panama City Beach, Florida.

We are having the best time laughing, sharing our lives and simply having a much needed break from real life.  It’s so peaceful, and I really am not ready to head back home tomorrow to be honest.  So for today I’m going to enjoy spending time with my friend, take in every sight and sound and be grateful for this opportunity to get away and relax. The weather has been gorgeous too!

Shopping at Pier Park on the beach, going out to eat, sight seeing….

The water is just crystal clear and every morning we sit on the deck eating breakfast and watch for sea life.  So far we’ve seen lots of schools of fish, stingrays, jelly fish, and about 16 dolphins.  Below is a picture of some of the dolphins we saw from our balcony yesterday morning.

And at the end the day, we get to watch beautiful sunsets like this.  God’s canvas is amazing!

Tomorrow we are parasailing in the morning then I’ll soak up as much sun as I can before it’s time to come home and face the music.  For today I’m going to pretend real life doesn’t exist and enjoy the peace and quiet of the beach!

On Monday morning, my sweet friend Becky and I will be leaving to spend five days in Panama City Beach, Florida, doing absolutely nothing but relaxing and soaking up the sun.  I can’t tell you how excited I am to escape from real life for a while and get away to rejuvenate and have a change of heart.  I can’t wait to relax on this deck with a good book and wake up to these beautiful views.

Thankfully I am married to a wonderful man who can totally survive without me.  He cooks, cleans, shops, does laundry, keeps the kids coming and going and does it all with a great attitude and willing heart.  I’m so blessed!  Please pray things go smoothly for Travis and the kids; I have no doubt they will be just fine.

Otherwise things are pretty much the same around here except we are now adding Sidney’s volleyball games to our already busy Sunday afternoons.  For the next three weeks we will have three games in one day (both boys in football and Sidney in volleyball) which we did last year too; it’s crazy but I know these days will be gone some day so we enjoy them while we can.  It gets rather difficult with Ryan when we don’t have anyone to watch him because he doesn’t handle the games very well, but somehow it always works out.  We have someone new starting respite so at least we have more options for child care although weekends are usually difficult to cover because people are so busy.

I’m hoping my time away from the real world for five days does my heart and mind some good.  Oh Florida…..I can’t wait to see you.

Yesterday I took the kids out of school at noon and we spent the afternoon at the air show; it was a special invite only event for disabled vets, special needs kids and adults and their families. And we had the perfect day to go with it!  Not too hot with a much-needed breeze, sunny with occasional relief from the clouds.  Travis was working the event and spent the entire afternoon driving an ATV around; the kids had a lot of fun jumping in the back and riding around with him.

Ryan lasted about 1 1/2 hrs as we walked around looking at the planes before the heat, wind and sun got to him.  Once the planes started flying overhead, it was simply too much so I took him back to the SUV and we watched the rest of the show from the fence line.  He was perfectly happy to sit in the back seat for 2 hrs so the older kids didn’t have to miss out on anything.  Here are just a few of the many pictures we took.  Sorry about the quality of the pics but since I dropped my phone in the toilet last week (yes, a very proud moment!) I have had to resort to using a digital camera that isn’t as good as the one on my phone.

This plane is from Anchorage, Alaska.  We were the only ones on it at the time so the kids got to hear all kinds of great stories from the pilot and loadmaster about the plane.  This one in particular has carried Willy, the killer whale, three times as well as an elephant.  It can also fit three Black Hawks.  Trevor loved hearing about the logistics involved in getting everything loaded in just the right spot so the plane can fly.

While I was sitting outside the SUV watching the planes, a very sweet veteran came over and shared stories about his years in the Navy.  He told me all about the planes, helicopters and tanks, but my favorite part of our time together right outside that fence line was watching the excitement on his face as the planes flew over us.  Thank you to all our military heroes!

Today I would like to be here….

but instead I am at home doing this….

with Travis’s help of course.

And the kids?  Well, they are off with their friends riding bikes, playing, being kids.  All I know is that when they get home, they have a list a mile long of chores they need to do before bed. And they won’t be happy about it.  At all.  Because they were asked a couple of days ago to get their chores done, and they didn’t as usual because I didn’t nag them a hundred times. I know, we are the worst parents in the world because we actually  make our kids help with the cleaning, do their own laundry, have responsibilities around the house like scrubbing bathrooms and picking up after the dog. I guess if that earns me one of these, then I’ve done my job.

At least I know when they are on their own someday, they will know how to cook, clean, work hard and manage their own lives without relying on someone else so do everything for them…..which is a lot more than most people can say these days. And as for that beach I so want to be sitting on?  Well two weeks from today I’ll be there with my great friend, Becky.  This is the first time I’ve ever taken a real vacation with a friend and can hardly wait to relax with my nose in a book and my feet in the sand of Panama City Beach. Then in October Travis is heading northwest for a week to see his brother in Idaho, and they will be going here….

I’ve never been to Seattle and am extremely a bit jealous he gets to see it all without me, but he needs time with his brother. And time away from real life. It’s just too bad we can’t get a vacation in together, but time with friends/family is a good thing. And I’m pretty sure my kids will also want a vacation after they work their rear ends off this afternoon.  I think this is the only “vacation” they are going to see for a while!

September already?  Really?!  Oh how I looooove the fall.  Football.  Volleyball.  Sweathshirts.  Sitting on the deck at night with Travis wrapped in a big blanket. Pumpkins. Getting all my “cold weather” recipes out.  Changing colors. Falling leaves.

It’s been a trying period for Travis and me, and as the seasons are changing with school back in session, the weather getting cooler soon, sports starting up again….nothing seems to be changing with the job situation. We’re waiting. And we both question what God is doing right now.  It’s been nearly four months since Travis finished his master’s degree and while he has applied for quite a few jobs, nothing has worked out so far. We both have some tugging on our hearts of what direction we might be heading but there’s that imperative question of  “are you sure, God?  how are we suppose to do that?”  It keeps coming up.  That continual thought of “well if that’s another door closed, then where are we suppose to be?” continued with “just show us what you want us to do!” followed by so many comments that go something like this: “just keep praying, God will open the door at just the right time”.  Ugh…do you know how hard it is to be patient and wait?  I feel like that’s all I do….wait.  And I’m not a big fan.  I am more of a “well let’s get it done and cross it off the list so we can move on to what’s next” kind of person.  I’m not patient.  At all.  Not. A. Drop. Of. Patience. In. My. Bones.  You’d think I’d have gotten it by now.  Yeah, not so much. And I hate not knowing what the future holds for us.  But then I have to laugh at myself because while I’m a planner, there has been absolutely nothing planned, laid out or organized about our lives these past several years.  I think of all the hours we’ve spent waiting with Ryan.  Waiting for diagnoses.  Waiting for therapy to work.  Waiting to see doctors.  Waiting for test results.  Waiting for developmental progress.  Waiting for surgery day. Waiting for him to talk. Waiting.  Waiting.  Waiting.  But I’m still not good at it.  Last year we were waiting for this…..

And Ryan survived.  We all survived.  There are plenty of scars to prove to the world everything that cute, chubby faced little boy endured.  And while removing a huge part of his brain during three massive surgeries and ten days in the PICU didn’t fix his problems, it did make things better in some ways.  And in the same way, we know things are going to turn around with the job situation. But right now we have to wait.  Did I mention I hate to wait?  This is not an easy season for many reasons that are very deeply personal and private. Travis and I both understand that everything happens for a reason, that we are supposed to be in this season for a very specific purpose.  But it’s hard.  It’s just simply hard.  And it hurts. And it’s just difficult.  But we are waiting for a reason.  Waiting for answers to our questions.  Waiting for God to move.  Waiting for the right door to open.  Of course I am usually found screaming at God “hurry up! I’ve had about enough of this waiting game!”  But I know when I get to the other side of this period, there is going to be a blessing.  There always is.  Just like the blessing that came with Ryan’s surgeries last year….a happier, more content little boy.  He’s still very broken, but he’s happier and calmer.  And I hope that when we get through this time of waiting, we are better because of it just like Ryan.

I had to giggle to myself when I read this post from one year ago.  I was thinking about how much waiting we were doing for Ryan’s surgery dates, waiting for Travis to get done with his internships.  It was the first football games of the season for the boys just like this past weekend.  This is so typical of Sidney and so endearing at the same time.  It’s worth sharing again.

August 30, 2010:

It was tough Sunday afternoon because the boys had back to back games at 1:00 and 2:15 (which didn’t start til 2:40) and it was very windy out at the field.  Well Ryan stuck it out for twenty minutes before I had to take him and Sidney back home.  He just couldn’t handle the people, the wind, the noisy whistles and yelling.  I felt terrible asking Sidney to go home and watch him since Travis had to head to work but she, like always, was a great sport.  Trevor’s team played first and they lost 0-24 so there were some tears and a lot of frustration after that one.  It’s never easy to handle a big loss on your very first tackle football game. He does a great job at linebacker and also played on the offensive line in the second half of the game.  Brad’s team won; he played center the whole game and also did some defensive line playing.  At center he was nose to nose with one of his best friends from church which was kind of fun; they didn’t beat up on each other too much!

By the time I got home with the boys, Sidney had made them notes of encouragement and had them sitting on the table with ring suckers – I had to call her before we got back so she knew if they won or lost so she could write their notes accordingly.  She had also made cookies for Brad’s swim party which turned out great.  Then as I was getting ready to take Brad to his party and head to work, she asked if she could make a homemade pizza.  She made pizza dough from scratch, thawed and browned the hamburger and made the entire pizza all on her own with absolutely no help.  She amazes me every day with her independence and ability to take on any challenge.  The pizza was fabulous, and she is turning into quite the homemaker at the ripe age of ten!  She is going to have one very blessed husband when she grows up!

Such great kids.  And no waiting involved to enjoy the blessing they bring to our lives. Every. Single. Day.

It was a fun, but busy, weekend.  Saturday we celebrated Trav’s dad’s 29th birthday again with breakfast and cake.  The kids made me laugh with their “we never get cake for breakfast” talk.  What do they think the difference is between a piece of cake and a donut?

In the evening we went to Valentino’s with my dad, his wife and my sister’s family then headed to the hotel to swim.  It was nice to have the pool to ourselves and even Ryan decided to join the fun.

He wasn’t so sure about the water at first but once he realized grandpa and sissy would give him balls to throw in the pool, he was all squeals and smiles.

And like usual, when he was done, he let us know by standing at the door.  I took him back to the room for a nice warm, relaxing bath while everyone finished swimming.

Then it was off to football today as the season started for the boys. They both won their games with shut outs which is always a nice confidence booster, and it’s hard to believe how much bigger and more aggressive they have gotten this year.

The quality of Brad’s team photo isn’t the best but I didn’t get my camera out in time and had to get this photo from another mom but you can still see how big they are.  I can’t believe next year we’ll be moving on to JV with Brad, but I’m going to enjoy every minute I can with both the boys since one of these days I know how much I’ll miss this…..even with the foul-smelling, cluttered mess this season brings with helmets, pads, practice jerseys and pants, game uniforms, shoes and water bottles all over the place.

And this week we add volleyball to the mix which is exciting.  How we managed three games every Sunday last year and will do again this year I’m not sure, but it’s fun while it lasts!

Sometimes I like to look back at Ryan’s caringbridge blog to see what was going on in years past.  I am so thankful I’ve kept a blog going for the past six years because it’s amazing what I’ve forgotten!  I read some of the posts and think “wow, did we really go through that?”  Sometimes I am truly amazed at how far Ryan has come, how much easier he is today than he was just a couple years ago.  I vividly remember how much he used to bang his head, slam it really, into walls (he put his head all the way through the dry wall five times in various places around the house); the massive tantrums sometimes in the middle of the night and we would take turns sitting with him praying the other kids wouldn’t wake; having to put him in the van in the garage or take him on a drive so one of us could vacuum, run the blender, turn on my hairdryer; all the times we had to leave the store because there was too much noise; sitting in the car for an hour while the rest of the family sat in a restaurant eating because Ryan couldn’t handle it and one of us had to leave with him.  Ryan has overcome so many obstacles that really don’t bother him anymore and I am absolutely amazed and grateful for how far he has come.  It’s a real testimony that with hard work, determination and never giving up, anyone can change.  We are different people today than we were in years past and even though we still face some very difficult situations, I am so grateful for all we have come through.  I can’t say life has gotten easier but we’ve learned how to face every bump in the road with sheer will and determination knowing that what doesn’t kill us truly does make us stronger.  And best of all, we have three beautiful kids who have found a compassion and acceptance of others that never would have been possible without the struggles their baby brother has gone through – that we all have gone through.

Two years ago I made the following post and it was a reminder I really needed today.  It’s worth sharing again.

Sunday, August 23, 2009 8:45 PM, CDT

“My thoughts are not your thoughts, nor are your ways My ways,” declares the LORD. ~ Isaiah 55:8

I Will Move the Rock
by Cindy Lu

A man was sleeping at night in his cabin when suddenly his room filled with light and the Savior appeared. The Lord told the man he had work for him to do and showed him a large rock in front of his cabin. The Lord explained that the man was to push against the rock with all his might.

This the man did, day after day. For many years he toiled from sun up to sun down, his shoulders set squarely against the cold, massive surface of the unmoving rock, pushing with all his might. Each night the man returned to his cabin sore and worn out, feeling that his whole day had been spent in vain.

Seeing that the man was showing signs of discouragement, Satan decided to enter the picture by placing thoughts into the man’s mind such as: “You have been pushing against that rock for a long time, and it hasn’t budged. Why kill yourself over this? You are never going to move it.”

Thus giving the man the impression that the task was impossible and that he was a failure, these thoughts discouraged and disheartened the man even more. “Why kill myself over this?” he thought. “I’ll just put in my time, giving just the minimum effort, and that will be good enough.”

And that he planned to do until one day he decided to make it a matter of prayer and take his troubled thoughts to the Lord. “Lord,” he said, “I have labored long and hard in your service, putting all my strength to do that which you have asked. Yet, after all this time, I have not even budged that rock by half a millimeter. What is wrong? Why am I failing?”

To this the Lord responded compassionately, “My friend, when I asked you to serve me and you accepted, I told you that your task was to push against the rock with all your strength, which you have done. Never once did I mention to you that I expected you to move it. Your task was to push. And now you come to me, with your strength spent, thinking that you have failed. But, is that really so? Look at yourself. Your arms are strong and muscled, your back sinewed and brown, your hands are callused from constant pressure, and your legs have become massive and hard. Through opposition you have grown much and your abilities now surpass that which you used to have. Yet you haven’t moved the rock. But your calling was to be obedient and to push and to exercise your faith and trust in My wisdom. This you have done.

“I, my friend, will now move the rock.”

At times when we hear a word from God, we tend to use our own intellect to decipher what he wants, when actually what God wants is just simple obedience and faith in him…

By all means, exercise the faith that moves mountains, but it is still God who moves the mountains.

Ryan and his morning para, Michelle, on the first day of school

Well someone out there has been praying, and we say THANK YOU!  The first two days of school have been wonderful which just brings me to tears.  I can’t begin to tell you what a blessing that is.  This momma’s heart is overflowing with gratefulness this morning.  And while I know there will be days coming when it’s not going to be smooth sailing, I’m going to take in the sunshine and the blessings of today.  Isn’t that true of all of us though?  Such a great reminder that there are many times in our lives when we worry, stress, fret, cry and become so anxious about how something is going to turn out.  And often times, things go much better than we anticipate.  It’s very easy to get pulled into the swirling emotions of doubt and negative thoughts.  God tells us in his word “Do not worry for tomorrow has enough worries of its own” for a reason, yet how often do we trust that the One who got us through every yesterday is the same loving Father who will also see us through the difficulties of today and every tomorrow that will come.  I know I fall into the worry trap; it’s easy to do.  Much easier than trusting in my faith sometimes.  When I look back at all the yesterdays we’ve experienced, especially in the past seven years, I’m reminded of how many unexpected blessings we were handed.  How many times we didn’t know how anything good could possibly come from the circumstances surrounding the day, but there was always good present in some form.  How we doubted God’s provision, yet we always had what we needed.  How even during the most devastating, crushing moments, there was always an unexplainable peace that somehow, we were going to get through this.  I love how The Message puts it in Matthew 6:24 ~

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.

Now how many of us don’t need to hear that today!  My job as a mom, a wife, a friend, daughter, sister, nurse…whatever role I am in…is to trust that God is doing a work far better than anything I could possibly understand or hope for.  So during those times when I worry over if my child is going to get through the day at school, or the myriad of other dilemmas that run through my head, I have to remember that it’s not about me or how hard I try to make things good and right and fair and fun and perfect.  It’s about believing, really understanding, that my life is more than what meets the eye.  It’s about helping others to see that God is good and His will is always best, trusting Him even when I really don’t get it or see the whole picture.  Cause sometimes the pieces of the puzzle don’t look so pretty but every once in a while I get to see a glimpse of beauty, of that big picture, when two or three pieces get to fit together.  Trust is a beautiful thing.

Trevor 5th, Sidney 6th & Brad 8th

 (not the best pic of Brad but they were goofing off)

There are simply no words to express how heavy my heart is right now.  I should be excited….the kids are all going back to school in just over 24 hrs yet my heart is so heavy that I can’t adequately explain how I feel.  I’ve always been a very transparent person, and I know these last several days it’s been written all over my face that something is wrong.  I just haven’t been able to say it, share it, vocalize it.  But here I am because as I’ve said a million times and will continue to say a million time more, this is my life – our life – and right now all these lemons are not at all anything close to lemonade but I’ve always felt like life is supposed to be shared. 

August means it’s time to face the music with school again.  And with school comes paperwork, meetings, notes from the doctors, lots of phone calls, getting all the supplies together.  There’s diapers, wipes, snacks, medication, tube feeding supplies, formula.  Stuff kids aren’t suppose to need at school but that my Ryan can’t survive without.  And with the beginning of the school year comes another notch to carve out of his educational tree but there’s not any mental gains to go with it.  Sometimes it bothers me more than others, and this year is one of them.  I guess I forget over the summer how stressful the school year is with him because I don’t have to be constantly waiting next to my phone for the next phone call….”Ryan’s having lots of seizures.  What should we do?  Are these normal?  Can you come?”  or “Ryan’s having a bad day.” or “Just wanted to let you know when we tried to do Ryan’s tube feeding some of the formula spilled out.” or “We’re out of diapers…or snacks…or medications….or it’s time for new tubing.”  It’s always something and when we get to sleep in, spend our days doing whatever we want, watching the older kids come and go all day all summer, I get to forget Ryan isn’t normal.  Forget he requires so much darn work to go to school.  Forget he can’t just strap on his backpack and be so excited to see all the friends he missed over the summer like the other kids.  Forget he’s not going to bring home a spelling list for us to practice or be excited for the next field trip. Forget that having a  hundred seizures a day isn’t normal and freaks people out.  Oh Ryan enjoys school eventually but the beginning of the school year always means stress – especially for him – and adjustments, tantrums, new paras and teachers who don’t know and understand him.  It means lots of explaining and listening and planning.  And I’m OK with all the work it takes to get him back into a routine because eventually he absolutely loves school and all the attention, but it’s still hard.   Really hard. It still hurts so badly cutting to the core of who I am with all my overwhelming emotions and thoughts. 

So bear with me as we start a new year.  I’m not good at pretending everything is fine and dandy.  As Travis just told me the other day “Kim, just get it out because it’s not you to hold everything inside.”  And he’s right; I’m a talker, a vocalizer, a spill-the-beans type of person.  Always have been, always will be whether anyone – including myself – likes it or not.  And that means it’s my season to really grieve and hurt and cry.  And boy are the tears coming.  I’m just simply not very strong right now, and I guess it doesn’t do any good to pretend I am.  I just can’t talk about it, can’t keep opening my heart to people, can’t keep telling the same story over and over again.  Ryan is so much of the very heart and soul of who I am, of what defines my life.  It’s sacred ground. I know he is here for a reason and part of that is to impact others. So I have to do what I feel God has called me to do…..share our story even when it’s hard and my heart is breaking. 

This whole world of raising and caring for a disabled child is by no means easy, and while I love that little boy with every fiber of my being, I can’t deny the pain that comes side by side with the joy of having him in my life.  Some days are just more rainy than others and right now, there are a lot of rainy days.  But I also know that eventually the clouds will pass and the sun will shine.  There will be many hurdles before that happens, but I know brighter days will come.  They always do.

So we decided to spend the weekend in Iowa on the farm with my dad and his wife.  And thankfully the vicious storms that hit Lincoln didn’t come to Hinton so we were able to enjoy lots of humid outdoor time.  Can I just tell you my love of taking photos was rejuvenated this weekend with my dad’s very nice, extremely expensive camera?  I was lusting over it actually and am secretly hoping Santa Claus finds a way to put one under my tree at Christmas!   I had so much fun taking far too many pictures of the kids all over the place but here are a few of my favorites since I can’t put them all in one blog (and by the way between my dad and me, there were over 400 pictures taken!).

The boys spent lots of time shooting skeet and pop cans and of course my dad was out there most of the time too.  This was Trevor’s first real experience using anything other than a bb gun or air soft gun, and he really enjoyed it.  Travis made him take a 30 question quiz on gun safety on the way up then we went over it as a family.  Trevor asked me numerous times over the weekend if we could please move to the country. As always, he loved roaming around, exploring and climbing, and desperately wants a dirt bike.  I hope his wish comes true!

Check out this spider!  I have no idea what kind it is but my dad calls them Hawkeyes (and there were A LOT of them).  The kids and I  got to see a grasshopper jump into the web and the spider quickly spun a web around it which was really neat to watch.  This picture was taken the following day, and you can see a smaller brown spider in there too.

Soon after we got there Friday my dad took Travis and the kids out to the field where they picked gobs of corn, and here they are shucking some for dinner.  We also got to bring a huge 42 gallon bag of it home which one of my friends and I are going to bag up tomorrow or how do you say it?  Put up corn?  I can’t remember but I did it years ago with another friend.

Check out this beautiful sky! I know it’s hard to see and this picture doesn’t do it justice, but trust me, it was gorgeous.  We always love a good fire, and here we are after filling our tummies with lots of marshmallows, chocolate and graham crackers.  It was a wonderful night, and we were so thankful the lightening on the horizon never made it to us.

So yesterday….my designated “picture day” that ended up being a flop.  This is a very upset, mad at mom, little boy who was desperately trying to climb the stone steps and get back inside after I made him come out for family pictures.  If there is one thing about Ryan’s disabilities that gets me worked up every single time, it’s pictures.  I’ve never been able to give up the idea of getting that perfect photo.  I keep trying, but it never turns out with everyone smiling, everyone looking at the camera, perfectly posed and happy.  Every single time I end up in tears trying to catch that dream shot.  Why I do this to myself repeatedly I will never now but its’ something that means a lot to me, something Ryan just simply doesn’t allow in his little world of autism cause he simply can’t handle being posed.  And I should be OK with that but I’m not and probably never will be.  After a good few minutes of me barking at everyone to hurry up and get in position while Ryan squealed and squirmed unhappily refusing to sit in his designated spot, I gave up and walked away in tears.  So instead of the perfect shot, I did get a cute one of the older three where there were suppose to be six.  But like my dad said, “posed pictures are not real”.  And he’s right but I’m still never going to give up on that perfect picture even though I know my next attempt will probably also end up in tears.  I’ll keep trying though.

So instead of getting a family shot outside with the bench in just the right spot and the plants strategically placed on each side, we went indoors after I cleaned myself up from the tears and we got this one which is OK.  It’s real….that’s for sure.  And I do love it even if it’s not “perfect”.  But I have to say, my favorite picture of all is this one.  The one that shows two people who love each other desperately, who cling to each other in the tough times, who have been best friends for over eighteen years now, who laugh hysterically, who have walked hand in hand through some very deep, dark moments lately, who cling not only to each other but to our Heavenly Father, who ask you to pray for a peace that surpasses all understanding as we wait patiently for Him to move and direct, who simply try every day to enjoy each blessing in the moment.

I started Ryan’s caringbridge blog in 2005, which is hard to believe, and it has served us well over the years.  But it’s time for a change.  For quite some time now I’ve wanted to send out updates that are not so Ryan-focused but instead highlight our entire family and the events going on in all our lives.  So here it is.  Some of you may wonder about the title and how I came up with it.  Well, it’s quite simple really and pretty much speaks for itself.  I’ve always said “you have to learn to take the good with the bad” and that’s what life is really about…..learning to take those lemons, the tough situations none of us ask for, and turn them into lemonade, something sweet, refreshing and easily shared with others.  That’s really our goal as a family – to use whatever we are handed to impact others, make a difference, be all we are suppose to be and do everything we are called to do.  And sometimes that is easier said than done, but we try and give it our best. 

So here we are, turning a new leaf.  And just as school is about to start which means we are entering a busy phase again with sports, activities and so many holidays around the corner, I look forward to sharing what is to come in the next few months here with us.  We don’t know what tomorrow will bring, but we are doing our best to stay focused on today and the blessings it brings.

The kids are trying to cram in everything they want to get done before school starts in two short weeks; they actually go back on August 16th which seems so soon.  Every year in June I say how long of a summer it is going to be and by the end of July, early August, I say I can’t believe it’s time to head back to school already.  But they are ready.  Brad will be in 8th grade this fall, and Sidney will be joining him as a new junior higher in 6th grade which she is very excited about.  Trevor is heading into his last year in elementary school in 5th grade and is excited about all the field trips and fun events he gets to do in the months to come.  And Ryan will be in 3rd grade already; we will miss Nancy very much, one of his paras who has worked with him for the past four years but has moved on to bigger and better things.  The new school year is always hard on Ryan but he eventually adjusts; this year will be interesting as we get to know a new school nurse and also get the staff familiar with Ryan’s vagus nerve stimulator. 

So welcome to lemonade lane….we hope you will continue this journey with us!  There is a place to sign up for email updates on the right side just like we had with caringbridge so make sure you get that done before you leave.

Enjoy your day!