It’s been nearly a week since Grayson got his diagnosis. I am so thankful for the abundant love and support our little family has received. We know people care about and are praying for Grayson around the country (and even the world) and are so grateful.
I’ve cried almost every day since Friday. Since we started this journey, I really haven’t cried much- I guess I feel like the majority of time I have to keep it together for him- if I fall apart, this whole operation falls apart. But the reality of the situation has been sinking in- my son has a chronic disease that will affect him his entire life. His life will be very, very different than the life I imagined for my child, and as a result, our family will be very different as well. No, different isn’t necessarily bad, but this disease isn’t “good” either. Having a 19 month old who doesn’t eat, crawl (yet!), sit up, walk, or talk is hard- it just is.
I saw my counselor on Monday and she helped me work through my fears, especially the fear that Grayson has Leighs. But the reality is we don’t have any idea which type of Mito Grayson has, and won’t know for at least another few months, if ever. So I’m not going to be in denial about it, but also can’t let fear take over my life. I have too much to live for and enjoy right now, today.
My little guy has truly been amazing me the past few days. The Mito specialist doubled the dose of CoQ10 prescribed by our neurologist, as well as increased the dosages of his other supplements. I’d been giving him too little of the CoQ10 because I converted the milligrams to milliliters wrong (yes, I’m a former math teacher, shame on me). So actually now he’s getting 10 TIMES the amount he has been the past few months.
Well, it’s doing it’s job, apparently. Grayson spent a good part of today in this position.
And he has figured out he can MOVE himself by picking his hands up and turning his body.
|CoQ10, where have you been all my life?|
Sadly, he got his first “crawling” injury a few minutes after I snapped this picture- a busted lip on the wood floor. Poor little tough guy.
The most amazing thing today (and I didn’t have my camera, grr) was when I went into his room when he woke up from his nap. I got right up close to him so he could see me, and he got a big grin on his face, pushed himself up and grabbed the crib railing! I seriously almost fell over.
I’m realizing there is a good thing about having a child with developmental delays, as I’ve been told. I truly do marvel and appreciate the “inchstones”. Any tiny bit of progress is cause for celebration (or a slobbery kiss from Izzy).