My son was diagnosed with three medical conditions in the first four years of his life. Not a solitary condition – they weren't wrong two times and then right once – but an additional condition each year.
A clotting condition at 10 months, mild cerebral palsy when he was two, and asthma at three-and-a-half. The last one was already on our radar (his dad has asthma, too), so it was barely a blip – thus far, the first two have been the big guns.
Visiting what seems like a million doctors and specialists is exhausting, and the reality of the visits is that the end goal is usually to get a short-term terrifying or a chronic, terrifying, and life-long diagnosis for your kid... which is also exhausting.
As a parent, you find yourself wrestling with a grab bag of emotions and thoughts: guilt, concern, worry, fear, hope, guilt, terror, happiness, sadness... guilt. It's easy to lose sight of the most important piece of the puzzle (your kid), and it's wildly easy to forget that once you get the diagnosis you still have so far to go.
That is, until The Day: the day the doctors finally figure out what's up and how they're going to proceed. And then all of the sudden it hits you: There's something going on with my kid, and I can't do a whole lot about it. This is where you'll want to lose your shit, and I'm here to tell you that this is ok to do. Here are a few other tips I've learned in almost seven years of this game:
1. You Need to Mourn The Life You Thought Your Kid (And You) Would Have
This is something I read early on that has stuck with me when so, so many other tips and tricks have failed or faded away. Whatever way you came into parenthood, you probably entered into it already dreaming of what your kid might and might not be, might and might not like, might and might not do. I think this is totally natural and healthy and great, but it's the kind of thing that a big medical diagnosis will crush in a heartbeat.
When our son was diagnosed with his clotting condition at 10 months and we started visiting St. Jude's every other month for tests, we started to let fear creep in. What would this mean for him in the long run?
Obviously contact sports were out, but what else? Would he be able to jump? Hike? Play with sticks? Would every bruise and scrape mean an instant hospital visit? Is it possible we could pack him up in a bubble and let him live there? (No.)
The cerebral palsy diagnosis hit us the hardest, and that condition remains the one I would happily take away from him if I could. Since we can't, we've had to learn to let go of the really general stuff we had imagined our kid doing.
Our son's CP is mild, but walking can be a struggle. He never climbed things or ate his feet as a baby, and he struggles with confidence because he doesn't always trust his body to do what he wants it to do. So we had to let go of what we thought a kid would be able to do or want to do, and learn about what our kid is able to do and wants to do.
You also have to mourn the loss of the life you thought YOU would have as your kid's parent. I think people initially think this is a little selfish, but... I don't think it is. While you were imagining what your kid would be doing as they aged, you were probably also imagining your role in it -- maybe even the role of your whole family. You have to let that go, and open yourself up to the new reality you all now have.
2. Remove “I Can't” From YOUR Vocabulary
Lots of parenting websites and books will really hit hard on teaching your kid that “I can't” isn't an acceptable reply to basically anything. And I agree: this is important!
But I think it's equally important for all parents, but especially parents of kids who have disabilities or medical conditions, to remove the phrase from their OWN vocabularies.
One of the most important things parents do is teach their kids how to (or not to) get through the world. There aren't that many role models for kids who have disabilities in mainstream pop culture, and it falls on you, the parent, to model what a strong belief in yourself and your abilities means.
3. Get Ready To Learn a Whole Bunch
Cerebral palsy is wildly understudied and research is incredibly underfunded, and our son is growing up with mild CP in a world that likes to treat everyone who has disabilities exactly the same.
And I even get this: before my son was diagnosed with it, I had NO IDEA how big the spectrum of disability truly is. I had known people who had disabilities, but since this didn't directly impact me... I never stopped to think.
Something I take very seriously as my son's mother is educating myself and our community. For me, community includes the people we see on a regular basis and the people I interact with online -- Facebook, whatever -- because these are people who play some kind of role in my life and/or the life of my kid.
So I'm That Mom, the one who shares articles about disability awareness a little too often. The one who gets preachy or informative a tiny bit too much. I bring awareness to things like why it's not a great idea to use the toilet that's specifically designated for people who have disabilities (reason: because you never know when someone who has a real need for it might come into the bathroom, and I mean this even if you have three kids with you or if it's the only one free – just wait).
I've had to learn SO MUCH STUFF while raising my kid, and it's all been worth it. Sometimes I am mentally drained just thinking about the information that's filed away in my head, but seeing the way this information enlightens others, which hopefully makes the world a little easier for my son and kids like him, makes it worth it.
4. Don't Make Your Kid (or Yourself) A Martyr
I think this is crucial because the rest of the world? They can't WAIT to martyrize your or your kid. They're just about to burst open because they want to tell you how inspirational your kid is, or how they can't imagine being in your position, or that you must just be so, so much stronger than they are.
You know what, guys? This isn't true. Most parents, if you're decent at all, can rise to just about any obstacle life wants to throw their way. If your kid was diagnosed with cerebral palsy tomorrow, I'm pretty sure you'd start learning as much as you can, and in doing so, you would find out just how strong you can be.
Yes, parents of kids who have disabilities and medical conditions are strong, but they aren't stronger than anyone else. I don't believe that we're only given what we can handle – I think most of us can handle quite a lot.
Likewise, the kids who are living with these conditions and disabilities aren't more incredible than other kids. At some point, each of us is challenged and we have to figure out how to overcome that challenge. These kids just know from a pretty early starting point what their challenges are, and they have a leg up on the rest of the crowd in trying to figure out how to overcome and/or work with what they've got.
I mean, my kid is amazing... but not because he has CP and other medical stuff going on. He's just cool.
5. The World Isn't Going to Cater to You
This... this one hurts. It hurts when you realize that the world isn't set up to make kids who have disabilities and medical conditions feel like they're cool, too. I mean, there are windows – the Franklin book series includes a character who walks with canes, but (as my six-year-old likes to point out), there aren't any Avengers who have disabilities.
My feathers were ruffled when the raccoon in Guardians of the Galaxy made a disparaging comment about someone who was missing limbs (and by ruffled, I mean that I angry-tweeted at the writer of the movie... and the studio... several times).
We love the Harry Potter series a ton in our house (maybe a little too much), but I'm certain that one day we're going to have to have a really hard discussion about how if we were wizards, we could magically make our medical conditions go away (or else... why doesn't anyone have cerebral palsy at Hogwarts?).
On the plus side, The X-Men? They're hardcore. While it's not my favorite thing to equate the idea of mutunts with disabilities, my son is getting into them and I'm going to roll with whatever makes him feel like the general population thinks he might be cool, too.
The bright side is that there is a powerful movement to change this. Dolls have disabilities now. Sites like TeenCP (and it's vibrant Facebook community) exist, and they're thriving. Forums are changing, and there are whole nights on Twitter during which conversations about disabilities are had, in the open, between people who are actually living with the conditions.
Nike released a cool shoe (the Flyease) for adult males who struggle with being able to put on their shoes (and I also tweeted at them asking about a kid's line... stay tuned!)
The general public is becoming increasingly aware of the fact that kids who have disabilities and medical conditions are out there, and they want to be represented. Does this mean that Marvel will invent a character that wears AFOs? Probably not... but maybe.