Yesterday, April 20, marked one year since Grayson was diagnosed with Mitochondrial Disease. I remember in the weeks leading up to the appointment, his first with our Mito specialist, I had such conflicting emotions. Of course I didn’t want my baby to have it, but I also needed so badly to have something to call the group of symptoms causing so many problems in his little body.
One year later (and 7 months since his specific diagnosis of Leighs) Mito is our normal, our life. We are no longer running any diagnostic tests, waiting weeks and weeks for biopsy or genetic results, or scouring Google for hours finding diseases and syndromes that fit Grayson’s symptoms. We know what it is, and now are just living with it, and trying to manage it.
I’ve been really worried about Grayson lately though. I don’t know if it’s the new medication he’s on, or disease progression, but he seems to be disconnected a lot of the time. A lot of times he doesn’t respond when someone calls his name or even gets close and talks to him. His stiffness is still awful, although the medication does seem to be making him more comfortable and he’s definitely sleeping better. He’s retching and vomiting at least once a day again.
When I can’t get him to respond or interested in anything else, I know music will always make a connection. I spent a lot of time this weekend just cuddling my boy and singing to him. He makes amazing eye contact, grins and giggles at his favorite parts when I’m singing his songs. It’s so funny though that, just like toys, he only likes certain ones. “Wheels On the Bus”- always a winner. “Twinkle, Twinkle”- meh.
We did a fundraising walk at the zoo Saturday morning with a team from his school. Although Grayson couldn’t see any of the animals, he seemed content to be outside, bundled up and pushed in his stroller (it was unusually cold for April). It makes my heart hurt that he can’t enjoy normal kid things like the zoo, but I have to remember what my counselor keeps telling me, that it’s me that’s sad, not him. He doesn’t know what he’s missing so he can’t be sad about it.
After such a stressful, scary, and sad week, along with G’s bittersweet anniversary, it was wonderful to have a weekend to spend together as a family- walking at the zoo, cuddling, singing, going to church, eating good food, and resting. Whatever happens with Grayson in the near or distant future, I hope I always remember the little fun things we did as a family- the days are hard and not always fun, but these are still good days.