“Don’t wash your dirty knickers in public.”
My grandmother’s advice is ringing in my ears. I was brought up not to talk openly about private family matters; it was very much frowned upon. That’s why my recent decision to start blogging about my son’s birth brain injury (hypoxic ischemic encephalopathy or HIE) hasn’t been an easy one.
I’m filled with doubt and questions. Should I really be doing this? What would my son, Leo, want me to do? What will he think if he reads it when he’s older? Which parts of this story are mine to tell and which bits belong to him?
In the early days just after his birth, I knew there was a risk that any blog would be driven by too much pain, too much raw emotion. I thought of my grandmother’s advice and was afraid to embarrass myself. But the thing that’s always frustrated me is how little people on the outside understand what this journey feels like. How little I understood what it was like until it happened to me.
Leo is now nearly 3 years old, and it feels like the right time to talk. It seems everywhere I go, I’m reminded that it’s something I must do.
For example, today I took my son to the hospital dentist. As we waited for our turn, the door opened and a woman came out with her adult son. He has cerebral palsy and was in a wheelchair. I could see they looked stressed; they were having some sort of disagreement. “Mum, I can do relationships!” he shouted. Immediately, she started whispering at him to be quiet. I tried to make eye contact, to smile at them. “It’s OK,” I wanted to say to her. “You don’t need to feel awkward in front of me, I am one of you!” But she didn’t see me, and they left.
I know from an outside perspective my child probably doesn’t “look” disabled. You can’t see the scar on his belly from the feeding tube, I don’t carry around the telephone book-sized piles of medical notes we have at home. At first glance, you wouldn’t know the journey we’ve been on and the challenges we face. I feel caught between two worlds – the disabled community and the “typical” one. I don’t know where I fit.
Our culture tells us that disability can be easily spotted – we’re told that all people with cerebral palsy are like this, all people with autism are like that. We assume that disability is fixed, that it’s black and white. It isn’t. Disability can be a changing picture, things can go forwards and back. It’s difficult to put it in a box — it’s complicated and confusing. Perhaps this is why as parents we shrink away from labels. Labels are one way of cutting through the confusion, a short hand to help explain it all, but they don’t really mean much to us. They don’t describe our children.
When I think of my son’s label – HIE – I realize he’s just one small part of a diverse group. In wanting to tell my HIE story I know I can’t possibly encompass it all, I can’t do it justice. There’s no way I can describe what it’s like for everyone who finds themselves with an HIE diagnosis; all I can do is say how it is for us.
As parents of children with disabilities, we must be brave and bring our stories out into the light. It’s only by showing people what it’s really like that they can start to understand. Maybe they aren’t listening, maybe they don’t want to know. But at least if we try, we’re beginning to break down stereotypes and build a world where the word “disabled” doesn’t feel so alien.
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