I started this post on November 15th and put it away in the drafts folder but thought I would drag it out today…
This is our third day home from a quick 28 hour hospitalization. But while the hospitalization may have been quick, the emotions that have followed have been difficult, fragile, unexpressed. After we made the decision to put him on palliative care in January, Ryan started having new symptoms – weakness, balance problems, new seizures – and we felt it was necessary to look into it all and see if there was anything we could do to increase his quality of life. We have been asked by a few people why we would put him through another hospitalization for monitoring and consider new meds if we put him on palliative care. And let me just say this please……it is very easy to look into someone else’s life and judge their decisions. But until you have walked in our shoes, you don’t understand the conflicting emotions that go with trying to accept that no one has an answer. It’s not easy to watch our son have hundreds of seizures a day and know there is no fix for him. Oh sure we can put him through another surgery, we can try different combinations of drugs until the day he dies, we can travel the country finding new specialists. But none of that will stop his seizures. None of that will stop the progression of whatever undiagnosed disease he has. It’s a very emotional place to be. And neither Travis nor I really wanted to take this stop on our journey. We didn’t want to deal with looking into the specialists eyes and for the first time see that he, too, has lost hope. We didn’t want to have to say “OK, now we are really done. We know for sure.” Ryan has so much spunk, he still likes to be goofy and laugh and tickle. He still slams drawers and doors over and over again. He gets into things. He still loves to throw decorations and toys and socks and anything else he can lift as far as his arms will let him. So to feel like there is nothing else is hard to swallow. But I will tell you this one thing. God is faithful.
And now nearly a month later, things are looking up. But that is the ebb and flow of chronic illness. There are days that are good and days that are bad. Moments of tears and moments of laughter. Periods of hope and periods of fear. I can’t put into words the emotions that go with a hospitalization, talking about the future, the inability to “fix” my child. But as always, as Phillipians 4:7 says, “the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus”. That peace is once again present in my heart and mind. Whenever I think about the future, my mind immediately goes to Heaven and all the glory and perfection there. We are all broken in one way or another. For some, like Ryan, it’s very obvious, and for others, it is the inner battle of the mind, the secret addiction, the horrific past that won’t stay in the past, choices we can’t undo. Whatever cross we carry here on this earth, and I always say everyone has their own cross to bear in this life, eternity takes that cross and buries it with our physical bodies. I don’t know about you but I can’t wait to get there. To be healed in all areas of my life. To be in God’s glory. To never worry or fret or deal with hardships. To feel and experience the love that put Jesus on the cross. To be free, completely free.
In the typical less-than-a-month-between-Thanksgiving-and-Christmas fashion, life has been busy. The kids are all doing well and excited for Christmas and time with family and friends. Here’s another update on us since I am not sending Christmas letters out. I think everyone who is in our circle reads this so I’m not sure what I could send out in a letter that would be new. And I post pictures here so why spend all that money for stamps? At least that’s my rationalization this year!
Brad – He’s driving! Woohoo! I can now say after a week how much I love having another driver in the house! He has done great and got some snow and ice experience this weekend with Travis in his own car so I am much more comfortable sending him off every day. His best friend is coming for a week after Christmas (from Denver) and we are all so excited to have him here. I’m already thinking of the food I will need to stockpile with all the extra friends who will be around. But I’m OK with that; I’d rather have them here anyway. I’m thinking Gator Bowl party for church friends, maybe a New Years Party for school friends….I can’t wait!
Sidney – She is doing well and doesn’t have anything new or exciting in her life these days which is just fine. As she says, there is enough drama at school that she doesn’t need anything else. She does a great job trying to stay out of the drama but at this age it’s just about inevitable. We did have a weird thing yesterday when she came home from school with something in her eye that she couldn’t get out. It was painful and causing her eye to water excessively. We ended up at the eye doctor and after some dye and numbing meds, she had a “foreign body” scraped off her eye. It was just one of those weird things. Her best friend was with us and took this picture of Sidney’s eye. You can see the white dot at 2 o’clock on her iris.
Trevor – Nothing is new with Trevor these days which is the norm for him. He’s doing very well and is a huge help around the house when he isn’t with his friends. He’s matured so much these past few months and I am really enjoying him. He’s a deep thinker and we have the most interesting conversations.
Ryan – He is as cute as a pig’s ear as Travis tells him. He is starting, or I should say, trying pool therapy tomorrow. I’m not so sure how this is going to go but if he does well, we will switch from typical PT to the pool. In OT yesterday we got him into some plastic eyeglass frames for five minutes which for him is a huge success; we have these at home now to try to get him used to the frames – no success yet. The goal is to get him to leave the frames on so we can try some prism therapy since he has so many vision problems. The issue is that he can’t talk to us so we have no idea what he sees, how he experiences the world around him through sight, balance and perception. We distracted him during OT yesterday with pushing a big punching bag type thing so we could get the glasses on him. Isn’t he cute?! Can you say Harry Potter?
Travis and I are doing just fine – we are happy and blessed. This year we will head to Iowa the weekend before Christmas to also celebrate my step mom’s 75th birthday with a big family party. I can’t believe Donna will be 75! She doesn’t look or act her age. At Thanksgiving she was standing in my sister’s kitchen peeling potatoes and Sidney said “Grandma! You’re wearing Miss Me jeans!” She had no idea Miss Me jeans are very stylish (even though she is always so tailored and stylish) and Sidney has wanted some for a long time but at $100 a pair, that isn’t happening. So to celebrate this YOUNG grandma will be fun. We always have a wonderful Christmas on the farm anyway.
I start a new job for the state on Monday and am very excited about it. I will be working for HHS as a program specialist in the Medicaid and Long Term Care department. I’m certain there will be a big learning curve coming but I am up for the challenge and excited to be on the administrative side of nursing. It will be a big adjustment working Monday thru Friday when I am used to having a few days off during the week. I can’t say I will miss the night shift and working weekends and holidays! Most of all I will really miss the days with Travis when all the kids are in school. We’ve been very spoiled for years with our schedules because we’ve always had time alone during the weekdays. I guess the date nights will have to come back again!
Please remember Jesus and the gift His birth is this season. Without Him we would not have the hope of eternity and the joy of our salvation. What a blessing and honor it is to serve the One who was gave His life for us. Blessings to each of you!