How can I help them to realise that while they look at my son and pity him/us that, honestly, he is far more wonderful than they can possibly imagine?
I read a wonderful piece today, from 2011, by a lady whose son was dying from a rare genetic disorder.
As she explained, parents who will ultimately lose their children learn to live differently; they are the dragon parents, loving with an intensity and ferocity that is both amazing and terrifying in equal measure.
We have no idea what Sam’s future will be, but having him has given us a rare and beautiful opportunity to experience love in its purest form.
It’s like a slow-motion ballet; while other parents are speeding ahead, comparing exam results, which child is fastest/smartest/tallest/who has what role in the school play, we have the rare privilege of watching our son develop and gain skills that were considered impossible when he was tiny.
Other parents miss those little gains, they don’t get to appreciate the incredible complexity of muscle control that it takes to hold a pencil for example. Or to say a word. Or to smile.
We get to marvel at those achievements, and frankly we celebrate them as if our child had just won gold in the Olympics.
This week my boy managed to control his muscles enough to say Mum, and gave me a huge smile as I looked at him in utterly astonishment! He is brilliant; courageous, strong-willed...
I used to joke that he’d inherited my worst traits – I’m stubborn, I refuse to take no for an answer and once I decide to do something it’s virtually impossible to change my mind.
For my boy, these traits will give him the best possible opportunity to carry on developing, gaining those skills.
At the age of 5 he can now sit up with minimal support, something his medical team didn’t dare think he would ever do due to his poor tone.
Don’t get me wrong, I would do anything for him to not have to face seizures almost every hour, and to have a typical, ordinary life. Boring even.
But over the past half-decade I’ve come to realise what really matters isn’t having a typical existence, but having a happy one. And he certainly has that x