Tuesday, October 14, 2014

This Guy

The big brother
In case you think the world doesn't revolve around the big brother let me reset your impression. I have had a few conversations with families whose oldest child has an extra chromosome or some other challenge and their youngest is 'typical'. I think we can all agree that 'typical' means everything and nothing but here I use it to mean someone with no cognitive delay. The parents often lament that their 'typical' child who happens to be the younger one, gets ripped off. They don't have as many activities focused on them. They get dragged around to the appointments and events which make up their disabled sibling's days.

I'm convinced it's a birth order thing. Most of my writing here is focused on my little girl because I have found value in reading the stories of others and in sharing our stories. I probably haven't expressed the fact that much of her life has consisted of being towed around to her big brother's events and activities.

I have many many stories about this guy. I adore him beyond imagining. The best thing I have ever written remains unpublished because it's about him and he has asked me not to post it as he is self-conscious enough to find it embarrassing. So I won't do it until I have his permission. It hurts though, it's a really good story.

He is a big, big light contained in a skinny freckled body which he does not always inhabit. He soars up to the heavens in excitement at new ideas. He crashes to earth and lower when disappointed, tired or frustrated. He needs time alone with his large imagination and we try to let him have that although it can be quite a challenge in days filled with school and soccer and capoeira and swimming and homework.

There are many days where I admit to myself that my 'typical' child has me more worried than my disabled child. Many days. Days where I remind and cajole and debate and do the 1, 2, 3 count and find the 100th lost item and then finally give myself a timeout before I lose it. Or worse, days when I do lose it. Days where I hear the echo of my late father's pathologies and try to remember that this is a different time and place and I am a different mom and history does not have to repeat itself, not while I am here to stand my ground and hold a big enough space for him.

There is one person who can ground him back to earth in an instant. There is one person who can bring back the brilliant, blinding light. His little sister (of course).

This guy is not getting ripped off. Neither is she.