Our son is fully aware that his little sister is different. He knows about her chromosomal disorder and her cognitive and medical challenges. He understands the implications of the R-Word and he’s aware of the range of physical disabilities that exist for so many people.
He has been aptly schooled.
We’ve shared Avery’s diagnosis and prognosis with him little by little. It’s like sex education that way — you want to provide enough information to prepare your child for what lies ahead, but you don’t want to bombard them with too much, too soon.
He is basically up to speed when it comes to his sibling’s cognitive and physical challenges, or so we thought. I honestly assumed he already knew about her pinky fingers.
Avery has a genetic condition called Clinodactyly.
Tonight as I was making dinner, Sebastian taught me a “mind reading” trick he learned at summer camp. In a nutshell, he asked me to choose a hand, then a specific finger on that hand. From there he had me choose a section of that finger and asked me to think either “moon, stars or sun” and keep repeating my choice silently in my head. Via some mysterious process where he squeezed the pad of my finger and looked for either a crescent symbol, a white circle or several red dots, he could tell me which celestial being I was thinking of. He did this five times and was correct every time! I have no idea how he did it.
Then Avery asked for a turn. When Sebastian asked her to choose a finger, she picked her pinky. When he asked her to choose one of the three finger segments for him to examine, he looked confused. Then he was stunned.
“Mum! Avery only has two sections! She doesn’t have three sections. She only has two! Two sections….it’s the same on both hands!”
“You knew, that didn’t you?” I asked. Dumb question. Clearly, he did not.
And so I explained the ‘whats’ and the ‘hows’ and the ‘what it means.’
After reassuring him that it doesn’t bother her or hurt at all he asked, “Will it ever grow?” And then possibly my favourite question in ages, “It’ll be cool to have that when she gets older, right? Because not many people have that.”
Yes, it will be cool because YOU think it is. It’s cool to be different and even cooler still to see people in their totality and to celebrate how awesome they are despite their differences.
Oh and yes, she *might* have trouble playing the trumpet. Good point kid. We’ll keep that in mind when we’re helping her choose an instrument in the future. 🙂
