I don’t know what dang blasted cartoon
is telling my son about things like high school and college, but I want to ban it. I drive down the road, rocking in my minivan, 90’s music on a low rumble so my kids can’t hear me sing, and my 8yo is going on and on about going to college.
“I want to go to college.”
“Hmm,” I mumble.
“Dad can take me to college. I want to go right now.”
“Mom,” his brother interrupts. “Are you going to tell him?”
I glare at him, my eyes narrow and red, both with anger and fierce determination to maintain dry-eyed neutrality.
He means, am I going to tell his brother that he probably won’t ever go to college?
You see, my son has Hunter syndrome.
But he doesn’t know it.
He has yet to reach the intellectual level where he understands that he’s different. Or that he has a life threatening disease. Or that most kids like him don’t live to 15.
He may never reach that level.
Even though I’ve fought our way through a clinical trial for five years, involving five spinal surgeries and 68 doses of an experimental medicine into his brain, I still battle daily with my fear of the future.
“I want to go to college.” He repeats. Then he proceeds to sing “Let It Go” at the top of his lungs.
I acknowledge without acknowledging, vowing to vet every cartoon he watches, removing all references to significant future events like high school, and prom, and a job, and college.
Sometimes it’s just too painful.
Right now, I’m thankful that he can still talk and say these things because, as I usually remind his brothers when he’s singing at the top of his lungs, were it not for the clinical trial he got into five years ago, his language would be long gone.
We’re still not sure certain that he’s stable. Not sure if he has a future.
But sometimes, I just take thirty seconds and dream.
What if… he grew up?
What if… he got a job?
What if… he liked a girl?
What if… he went to college?
I’ll let myself dream for thirty seconds, then I’ll go back to living in the now, rocking in my minivan and agreeing with him as he sings at the top of his lungs, “Let it go….”
Last modified: May 17, 2016