I came across a fantastic blog post this evening: My child with a disability is not my hero. I would encourage you to read it first, and then come back here. I’ll wait.
Are you back? Excellent. Allow me to explain why my child with a disability is my hero.
Dehumanization and marginalization
It is quite easy to marginalize a child. Adults do it all the time. Children are often thought of as “just children,” and not people of worth and value until they’re older. “Oh, she’s just a child,” some think – or even say – as if a child isn’t a real person yet.
When I taught Sunday School to seventh and eighth graders, they were surprised to find that I didn’t come the first day with a plan, a set of lessons, anything. We spent the entire first class just talking. I shared stuff about myself, and explained that I did have a bunch of things I wanted to talk about, but they could overrule that. We talked about what they wanted to learn, what they wanted me to teach them. Above all, they were surprised that I was taking them seriously – they were being treated like people, not “just kids.”
Jessica and I hold that the same attitude must be taken with parenting. A child must be taken first and foremost as a person, not a child. Their hopes, their fears, their desires – all are valid, just as valid as anyone’s. Whether or not we see our daughter as a hero has no bearing on our treatment of her. She isn’t compared to anyone else; she is her own person, and why should she be any other?
Strength and determination
Hero (n.): a person who is admired or idealized for courage, outstanding achievements, or noble qualities.
When Namine talks about her activities and accomplishments in physical therapy – about which she talks much more than speech or occupational – it is primarily with pride. She refers to herself as our “strong girl,” but she acknowledges her failings along with her successes. The times she has cried the entire session, and the times she has walked with few breaks or complaints – they are points on the same scale, all part of her progress. All part of her. There is no shame in failed attempts. There is only the constant march of her progress, borne of her iron will. Always her will.
It is that will, that determination, that enables her to do what doctors, therapists, and pathologists have all said was impossible. Not unlikely – impossible. And it is that strength of will for which we call her our hero.
Her value lies in who she is – not in comparison with other children, physio-typical or not. Being a hero is not an expectation, it’s an acknowledgement. An acknowledgement of how much she’s accomplished, and how far she’s come. On those bad days – and there are bad days – she doesn’t feel like a hero. She doesn’t feel strong. But that’s okay, because she knows (and sometimes needs to be reminded, as any of us sometimes do) that we love her for her.
We expect the impossible. We expect it because she’s done it. She wasn’t even expected to survive her first two weeks alive. Then she was expected to have a tracheostomy for life – she was decannulated at two and a half. And have a g-tube until at least third grade? Try three years old. Her life is punctuated with the impossible.
But of course we know better than anyone that the past does not prove the future. Why should we push her so hard to walk? Why should her therapists? The only valid reason: Namine herself. She looks forward to going to therapy. She doesn’t dread it because it is the means to an end, the means to being able to walk on her own. Namine sets the standard, but she doesn’t yet have the willpower to execute it. What five year old would? For that matter, what adult? That’s where therapists come in, of course.
So yes, we have high expectations. We expect that Namine push herself to her very best, but no matter how much or how little her best may be, it will always be enough.
I’m proud of my little girl, my little love. I’m proud to call her my strong girl. She has come so far, and she is far from the helpless baby she once was, those long five years ago. She is independent and strong, full of life and love.
I’m proud to call her my hero.