I hate the word disability.
Every time I sign a NDIS document or a standard form and have to tick that box it makes my jaw clench.
It implies she’s less than.
Amounts to less
Has less of a contribution to make.
Her ability is now and always will be, less. Determined from the age of 3. It makes me sad because I know her ability is different but certainly not less.
On the contrary she’s more than I’d ever dreamed. In all the unexpected imperfections, these things make her who she is and I live in awe of her daily.
Kicking a ball was something she worked for years to do.
As was jumping. Holding a pen. Finding the words to ask for something.
She learns how to ask for help. How to make a friend. The things most kids, just do.
She has more determination than some people have in their pinky finger and while some days my heart is heavy that life is so hard for her, what a special person she will grow to be.
Her smile can light up a room and when she conquers something, her face lights up and so does our entire family because we have seen what she has had to do to do the thing she’s aiming for. Her ability is earnt and the joy is endless when she conquers something new.
She reminds us of what life is about.
It’s not about boxes being ticked off.
It’s not about winning.
It’s not about fulfilling criteria.
It’s about treasuring the small moments.
Treasuring every milestone wherever it falls and remembering that there is no such thing as normal and that our ability is measured by our ability to not give up.
The horror that I felt when I realised my child wouldn’t easily reach the milestones I assumed she would always reach on my wonder weeks app was heart wrenching but also kind of laughable. I didn’t know this world then, the one where no one is the same but all awesome in their own unique way. She was sent to teach us that nothing and no one is normal. On the other side of fear and grief and ego – is a beautiful view. One where anything is possible and resilience lives.
Once you choose to see the view, it everything will be OK. I promise.