When I sat in my first NCT meeting all those years ago we talked about the things we’d like to do with our babies. ‘Take them cycling’… ‘go to the cinema’…’explain the stars’. And we did, and we do, do these things with Big. Nowhere in those conversations did we say: ‘Spend endless hours in hospital’… ‘Use Google to untangle the reports full of medical language we don’t understand’… ‘Fill our spare time researching the equipment our children need because Social Services is so woefully underfunded’. And yet this has been our life with Small. Not just us, hundreds and hundreds of other parents are in the same boat.
I think sometimes we underestimate quite how amazing we are. It’s true that when you sign up to parenting you have no idea how much your life will change. I remember friends doing that knowing chuckle about how we’d never lie in or read the paper again. This and many other truisms came along with Big. She was a shocking sleeper at first (colic? reflux? teething??) and needed constant attention, as all newborns do and I remember the total relief of going back to work and being able to have my lunch by myself and, ooh, read a book.
But when your child has disabilities, you are no longer simply his or her parent. You are their carer, their advocate and the constant educator of the world on both disabilities as a whole and your beautiful child in particular. It can be more tiring than you’ll ever know. But we all do it. We fit these things in around the rest of our lives, our work, our partners, our other children… the never-ending needs of our households just to stand still, never mind advance forwards. And we do it with a sense of humour because, frankly, that’s all that stands between us and a vodka bottle sometimes.
We know this isn’t normal, but, to us and all SN families, it is. It’s only when you stand back and look at what you do, how you do it and the extent to which you push yourself forwards Every Single Day to advance your child that the sheer enormity of it hits you.
We are all amazing.