This weekend, Grayson projectile vomited while we were out shopping, soaking his clothes with vomit and mucous. His tube extension came out multiple times, soaking his clothes with formula. I was called to the nursery at church this morning because they were worried about his stiffness. He isn’t sleeping through the night anymore, and often cries out in a state of half-consciousness, his body rigid and obviously in pain. He can’t be left “loose” on the floor for more than a minute because he loses his balance and hits his head. His disease is progressing: the disease with no treatment and no cure.
I try to be real and honest on this blog with my words, but I realize I’m sometimes my pictures skew reality. I’m no photographer (and 99% of pictures I take are on my phone), but I pick out pictures of Grayson to post where he looks adorable- smiling and happy. And a lot of the time he is- I can sing “Wheels on the Bus” or start a Veggie Tales song and he busts out with this killer smile, genuine joy on his face.
But the real story behind the pictures is there is often a lot of tears, gagging, throwing up, whining, and pain in his day. A lot of my time is spent keeping Grayson calm and safe, while at the same time happy and engaged. Some days I am more successful than others, and am so grateful for the support system I have that helps me accomplish these goals.
People often say that caring for kids gets so much easier as they get older, and I’m sure that’s true for typical children. But taking care of Grayson gets harder and harder as he gets older and more symptoms appear. He’s 26 pounds now- what’s life going to be like when he’s 40 pounds? 80?
His Mito doctor is putting him on a new medication for his seizures and is referring us to another specialist about his stiffness; it looks like we may be on the road to trying Botox again. It’s frustrating to have no guarantees- no assurance that this medication will control his seizures or the Botox will help his body relax (it didn’t before).
In this day of blogging and social media where everyone has digital photography and can post whatever they want to portray their lives however they want, I have to remember that everyone has struggles behind the smiling faces of their adorable kids and fabulous vacations that appear on the computer screen.
This week is Spring Break for both Ryan and Grayson- hopefully we can capture some moments of joy on camera and make some happy memories as a family while keeping the moments no one wants to remember to a minimum!