Sometimes I forget my son has trisomy 13... you’d think it wasn’t possible to forget that your child has a condition that wreaks havoc with every part of their body and mind... that leaves them physically disfigured.. And mentally.. Different... but, sometimes...for a moment... i do forget.
When he’s sleeping, he looks so peaceful... like he’s just a normal little kid, all tuckered out after a long day. His little body rising and falling with each breath... no sign of any disability.. Or abnormality... nothing wrong with him.. At all. just my little boy, daddys little trooper... fast asleep.
It’s only when he wakes up that this beautiful illusion is shattered... and his routine begins again, searching for toys to grasp with his hands... to put in his mouth... anything within reach will do... he’s wide awake now, but not a word leaves his mouth... no good morning, no, hey dad, no.. im hungry, whats for breakfast. Not now, and.. Not ever. He’ll continue his routine for maybe a few more years... it might change a little.. Maybe a new toy will become his favourite, but... it’ll all be mostly the same..
And.. its not that i need anything to change... i mean...i dont need anything from him.. I dont expect him to get up and run around.. I dont expect him to contribute anything.. And i never will. I’m happiest if he’s just.. Comfortable. If a smile breaks on his face when i cuddle him.. A laugh when i tickle him.. Then, that’s enough.. For me. And i’m sure it’s enough for him too.
My daughter on the other hand... well, i do expect a lot from her... i expect her to run.. And dance... to be a good person... to be kind, gentle, to be... a normal little kid. If there is such a thing... I have hopes and dreams for her... i think of our relationship in the future... maybe we could be friends when shes all grown up... I hope so. And.. i expect her to contribute to our family.. To help me clean up her toys when she’s done playing... to say sorry when she does something wrong... there’s a story there.. A rich story.. Full of adventure.. Excitement... hopefully, a long story... one that we can share with each other..
And when she wakes up from her dreams.. She’s the same vibrant, capable little girl... she springs back to life with a torrent of thoughts, ideas, and laughter streaming out of her..
But with my son.. There... well... there is still a story... and laughter... but...they’re... muted... There is some adventure to be had for him... But, the limits to that story are very clearly marked. I can’t say i know exactly what he’s capable of.. What he will be capable of in the future... but, i can make a pretty good guess at what he’ll never be able to do. And.. that hurts.
I want the most for him... I want him to thrive.. Whatever that means for him. Even if it seems trivial to others... insignificant compared to what my daughter can do... if it makes him smile, then.. Its good enough.
The only blessing is that.. He has no idea about any of this. He doesnt care at all...
And, sometimes I don’t care either.
It is hard to forget that my son has trisomy 13.. But, sometimes, when the day is kind to me... even if just .. for a moment. I do.
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