Days Like This
6/1/2020
With Holden having mitochondrial disease, he has less energy than healthy kids his age. Mitochondrial disease is progressive which means it gets worse with time. For Holden, his brain and muscles are largely affected. Every day is different, he has more energy some days than others. Some days he won’t take a nap and he seems to be in overdrive (this is usually when he is having an episode of hypothalamic storming) Some days he will sleep most of the day with very little wakeful periods. And some days he’s fine in the morning and then he takes a nap and wakes up a completely different person (sad/angry/irritable). We never know what the day will bring but always hope for the best.
This last year has been hard for Holden. He is weaker and has lost most of his head control. He has spent most of the year upset and uncomfortable and we have tweaked his meds every 10-14 days in attempts to keep him comfortable. In February, we made the difficult decision to switch from oral feeds to tube feeds. It is incredibly difficult to make these kind of decisions because it seems so “final” in accepting what is changing in him. Since we switched him to tube feeds he has been a lot more comfortable. We can’t really make sense of that, but we haven’t had to make any permanent changes to meds since. That’s pretty amazing with how often we were having to do it before.
My favorite days are when he lifts his head away from his wheelchair and holds it there for a short amount of time, especially if we are on a walk. I love seeing the sun touch the little hairs on the back of his thin neck. I want to stop walking and kiss this area but I know he is working hard to get himself in that position and I need to let him enjoy that triumph. Every time he does this it melts my heart in unimaginable ways and I immediately want to cry because I’m so proud of what he’s doing. I know on these days he is feeling good and he is feeling strong and I couldn’t be happier for him.
I always wonder if other parents are able to appreciate this simple milestone as much as we do.
* Edit: This entry was originally written to post on 5/6/2020. Unfortunately during the time between then and now we did have to make a “permanent” change in meds to keep Holden more comfortable. I say “permanent” very loosely since it will change again at sometime down the road, but hopefully not too soon.