Seeing things in a new light: it’s the little things
By Kelly Wilton
The other day Facebook popped up a photo that I hadn’t seen for a while. It was a 6 year old photo of when my son, Mikey, first became sick. He was sitting up in his highchair with his little lopsided smile – which we thought at the time was caused by a stroke. He was out of ICU and had moved onto the ward for rehab.
Memories came flooding back of the party we had been to just the week before. He was a ‘normal’ baby at that party; he had actually started crawling! A week later he would be fighting for his life.
It’s amazing how much we take for granted.
Even now, 6 years on, I find it hard to comprehend how our lives changed instantly overnight. We didn’t know it, but for whatever reason, fate had another road for Mikey to follow, and it wasn’t one of the ‘norm’. It would be a journey of a little boy defying the odds of a seizure syndrome that was only to be managed through brain surgery.
He wasn’t going to hit any of the ‘typical’ milestones; he was going to do things in his own way, in his own time. He was going to teach us that following the ‘normal’ life isn’t our path – it wasn’t meant for us, it never was, and that being different is such a breath of fresh air!
Seeing the world as our boy sees it, is a fresh of breath air. Boy is it.
Yes, it’s challenging, it’s scary and it can be hard work but what human on this planet hasn’t had some life challenge that has made them feel this way?
Being different is a wonderful asset. In fact, the more I discover Mikey’s way of life and his way of doing things, not to mention the amazing little people in his life, I realise how these kids are here to teach us something. And if we don’t start taking notice, we, ‘the neurotypical’, will miss out.
The developments that he is making through his ABI (acquired brain injury) have showed me how his neurodiversity is a gift.
I would never have thought that 6 years ago; I felt it was a curse, that we had done something wrong, that he was being punished. There was sorrow and heartache of what we had lost. Society told us that not living a typical life would be a curse.
They were wrong. It is a blessing.
Whatever challenge your ‘special child’ has, is just that – a challenge. But it doesn’t define them. Their personality will shine through regardless.
One day our society may catch up to the fact that being different is a gift and that uniqueness is what occurs when something out of this world happens.
When you feel all is lost, when you have reached the point of no return – then a miracle happens. The darkness starts to lift, you start to feel hope again; there is a breakthrough.
All you have to do is follow your child and they will show you a new way.
That’s what I see now, a new way. And it’s pretty damn great.
Follow more of Kelly & Mikey Danger’s journey at www.lovingdanger.org. Their patient page for HHE Families can be found at: www.rareconnect.org/en
