When you’re a parent to a child with fragile physical health, a degenerative condition and severe mental health issues, it seems like there’s no end to the heartache.
Gavin is the child in our family who the above paragraph describes and it’s true, there’s no end to the heartache we feel as his parents. Helplessly watching him lose skills, abilities, memories and independence is a gut-wrenching experience I wouldn’t wish on anyone.
Poor Gavin is having such a hard time today.
He’s been walking into people and things all day long. He’s stepping on things he shouldn’t because he’s not paying attention or isn’t focusing on his surroundings. It’s not his fault but he doesn’t get that and frankly, it doesn’t make it any less disruptive either.
We’re decorating the Christmas tree and straightening up the house and Gavin wants to help, as he always does.
He’s having a difficult time navigating around the living room with all the boxes pulled out of storage. There’s plenty of room to walk between them but he ends up kicking them, tripping over them or bumping into his brothers as he attempts to avoid the boxes.
It’s frustrating for all involved but more so for Gavin because he’s not trying to do any of these things.
As his Dad, it’s absolutely heartbreaking to see him go through this and know there’s nothing we can do to make this better. Childhood Disintegrative Disorder will run its course and where it leaves him has yet to be revealed.