I did it, too. Trust me, I spent hoursssss incubator-side Googling all sorts of things like, “grade 4 ivh success stories,” “what is cerebral palsy,” “cerebral palsy severity,” “chances of (x).”
I Googled it all. And you know what that got me?
Absolutely nothing. Except a bunch of wasted time, data overage charges and anxiety. Is having a baby or babies in the NICU tough? Of course it is. It’s also tough to hear the words that your child may have a disability, especially in the way doctors usually deliver this news, like it’s the worst possible thing imaginable (spoiler alert: it’s not, but more on that later).
We were offered multiple times to remove life support from both twins, simply based on the prognosis of their brain injuries and the likelihood that they would be disabled. Basically, a conversation like, “Hey, your child probably won’t walk… do you still want them?”
As if walking is some pinnacle of human achievement that everything else must be measured to. Well, I know plenty of people who walk who are complete and total dicks, so there’s that.
What’s a “Success Story” Anyway?
How do you define success for your child?
At first, it’s that they lived at all. My boys weren’t predicted to make it past the first week. Doctors wouldn’t even discuss their conditions with us until then because they were so sure they wouldn’t live, and it would be a pointless conversation. On the 7th and 8th days, when it became clear the boys were still there — still very critical but THERE — we started finding out what was going on.
So, at first I’d say survival is a success, right? Isn’t that true for all of us? We’re born, we survive, ta-da: success story. Something bad happens to us, we prevail, ta-da: success story. Rags to riches. Cruel to kind. Grinch to Whoville. Success.
But suddenly: “Your child may have a disability.” or: “Your child has cerebral palsy/autism/insert other diagnosis here.” Where’s the success in that? Well, they’re here aren’t they? It’s the same thing.
These conditions come with challenges, yes. For both parents and the children themselves. Are certain tasks and experiences going to be tougher for them, and you as their parent? Of course. But there is nothing unsuccessful or wrong about having a disability. It’s part of the human spectrum of existence.
Your Anger Isn’t About Disability, It’s About Ableism
I was angry for a long time after it became clear the boys would have life-long impairments and then later, when they were formally diagnosed with cerebral palsy and other things. Part of that anger was rooted in ableism. The messages we get from traditional media and society in general is that disability is either “something bad that happens to you,” or something to be pitied and often, ignored. “Too bad, so sad.” “Glad it wasn’t me.”
Disability definitely isn’t a success story, is it?
Sure, I had a friend growing up who wore AFOs and walked with a limp. I was very young and didn’t think much of it. But had I ever seen a disabled person in a starring role in a movie or TV show? Had I ever met a disabled person, as an adult, who was praised for doing something amazing because they were an amazing person, not ONLY because they “overcame their disability” or some other garbage inspiration-porn message? No, I hadn’t.
So I felt angry that my boys would be disabled. Not at them, but it was driven by a sadness for them. The things they’d miss out on. The pain they’d go through. What would their lives be like? Would they have any friends? Who will care for them when I’m gone? (This last one still keeps me up many nights because, well, it’s a real fear.)
After awhile I realized that my anger wasn’t really about disability or cerebral palsy itself. My anger was with inaccessibility. I wasn’t angry they couldn’t walk, I was angry that mobility equipment is not appropriately funded by our so-called “amazing Canadian free healthcare system” like I assumed it would be. In Canada, break a leg? No problemo, totally covered at the hospital, bro. Have a chronic condition or disability? Have fun paying $30,000 for a wheelchair! (In BC anyway, and yes, some things are covered, but for brevity’s sake, it’s inadequate for many to say the least.)
Disability is not the problem.
Inacessibility in the world is.
Ableism + Mom Guilt = Recipe for Disaster
You may be reading this and think that’s a lofty place to be. How enlightened of me to be so accepting. “What about (x)?” “You don’t know what it’s like.” blah blah blah. Trust me, I do. I thought some really negative things. I felt shame that my body couldn’t create a “typical” pregnancy and baby/babies like everyone else I knew. I had to let go of the dreams I had of watching them play sports when they’re older. (Who knows, maybe there will be an adapted league where I live that they want to do?)
I had to face some really scary internal truths: that I was ableist. And, well, that made me a pretty shitty person. But I committed myself to learning more about ableism, following more adult disabled people online for the positive representation I was sorely lacking in my “real life”, and changing my internal mindset.
Disability is not a punishment.
Disability is not a “bad outcome.”
Stop Googling Success Stories and Take Action
Instead of being angry and sad about your child’s diagnosis, start looking for ways to make your world more accessible. Maybe it involves lobbying government or joining a group to promote disability rights and healthcare equity in your province/state/country. Maybe it involves challenging your local school or park to update an inaccessible playground. Maybe it simply involves telling people to fuck off when they ask, “What’s wrong with [your child’s name]?”
Stop fighting yourself, and reality. Start learning about ableism (from disabled people), and fight ableism instead.
Don’t let the preemie/NICU world convince you that success stories are only children who turn out “normal.” Spoiler alert: disability is normal. Disabled people make up 20-25% of the world’s population. That’s pretty damn normal.
Stop googling success stories, NICU parent.
I know you won’t, not right now. You’ll probably still be angry for awhile. But I wish you wouldn’t.
Some of my favourite disabled content creators who educate about ableism are: