Additional Needs
The Monster We Live With
by Carolyn Voisey
on 4th December, 2023
Acceptance is the Most Precious Thing in the World
For the first time in many years, we spent Christmas away from home.
As Sam’s hoist, equipment etc is all there, it’s been easier in previous years to just stay put and have family and friends over to visit instead.
So, van packed as if we were going on a month-long road trip (seriously, just how much STUFF does this child need?!), we braved the pre-Christmas traffic.
J likes to remind me of life BC (Before Child), when we travelled around Japan for 3 weeks with just one bag each.
My, how life has changed!
I am blessed not only with an incredible little boy, but also a 10-year-old niece who has a heart of gold and a 4-year-old nephew, who is just the kindest, most gentle little boy.
Isaac hasn’t really met Sam that much before; the last time he was only a baby really.
I had no concerns about these two and Sam, Daisy has seen seizures many times before and knows what to do.
But how would the little one react?
Some of Sam’s seizures are seriously aggressive, and they can be more than a little frightening to witness. I had nothing to worry about.
After being stuck in his chair for hours, Sam was glad to be able to stretch out on the floor – Isaac hopped off his chair and went straight over to say ‘Hi’.
Mum gently explained that Sam can’t talk… then stopped herself as Sam gave Isaac a ‘thumbs up’ sign and smiled at him.
Isaac didn’t need any more encouragement, here was a new play friend and that was all that mattered!
He sat down with Sam and happily played away, before long he passed a book to Daisy so she could read to them both. Holidays can be acutely painful – watching other children run and excitedly play while our little boy can only watch.
That gentle acceptance made more of a difference to Sam and to us than those children probably realised.
They don’t see Sam as different, because their parents have taught them that different doesn’t mean better or worse.
How much better would our world be, if everyone remembered that?
