But how…?

When I announced my pregnancy, I found out that not a lot of people expected me to ever be a mom. That was part self-inflicted, part not.

Here’s the part that’s my fault: I was loud about my uncertainty regarding my like of babies. I think I actually hashtagged #nobabiesonlypuppies on Instagram once. Whenever anyone asked if Bryan and I had plans to have kids, I said, “Maybe eventually…we talked about it last August and agreed to talk again this August,” for like 3 years in a row. It’s not like I was brimming with enthusiasm at the idea, and I totally get it if friends and family doubted we’d ever get our act together and go for it. By the way, I’m now a firm believer in “don’t knock it until you try it.” My new hashtag is #givemeallthebabies.

Here’s the part that isn’t my fault: I’m disabled. When I called my family to tell them I was pregnant, some of the responses were flat out weird. One person realized five minutes after we hung up that they hadn’t congratulated us because our phone call had consisted mostly of, “Really? Is that a good thing?” (Don’t worry — they called back.) Another responded with, “Huh…didn’t think you could be.”

Huh? That second one could have been the response to me announcing that I was half human and half panda bear, or that I’d just decided to be an astronaut. They won’t let you astronaut if you’re in a wheelchair. The injustice.

What my family was expressing was fear, and that was reasonable. I was aware that an orthopedic surgeon had said once…when I was 8…that he didn’t know if pregnancy would be a wise endeavor for me, and I’m sure that stuck with my family, but we also heard doctors and other specialists say I’d never walk, feed myself, or go to college, let alone drive or live independently. I’ve learned to take the medical community’s predictions and expectations with a grain of salt, give or take a shake.

This experience isn’t unique to me or to pregnancy. Able bodied kids are told to reach for the stars. Push yourself; you can do anything you put your mind to! Disabled kids are told the only thing they should bother reaching for is the toilet paper; not to get their hopes up, to set  realistic expectations. You see, it’s ok for a typical kid to fail and learn how to be resilient, but we wouldn’t want to damage a disabled kid’s fragile self-esteem — clearly, if you’re disabled, you have good reasons to be insecure. (Please read my sarcasm.) Is it appropriate to tell a kid with a severed spinal cord that he’s not trying hard enough to walk? No! But should arbitrary limitations be set because of the assumed impact his disability will have on his life? Dude, no! It’s dangerously easy for those low expectations to become self-fulfilling prophecies.

Once my family moved past the initial shock, we celebrated. They were excited for a grand and great-granddaughter, a niece and great niece. Inevitably, though, the narrative they’d been inundated with my whole life crept back in.

Are you sure delivery will be safe? You probably won’t be able to push. You’ll have a cesarean, right? Even strangers seemed interested in what opening through which my daughter would be entering the world, which says a lot about popular assumptions, I think.

How are you going to take care of a baby? How will you carry her, change her, bathe her?

What about when she’s mobile? How are you going to keep up with a rolling, scooting, crawling, walking baby?

Reasonable questions, if only the tone was brainstormy, rather than doubty. Tone matters, you know. The former makes me feel like we’re in it together, while the latter feels like an accusation that I’ve gotten in over my head.

I’m regularly surprised at what I can do if I don’t dwell on possible negative outcomes and just go for it. I rearranged all the furniture in my office by myself once, including a heavy futon. Bryan was convinced I’d been faking this whole disabled thing. I take my time, think through various ways to accomplish a task, pick the best one, and then I go for it. Or I don’t and just cry uncle when I get myself into a stupid situation, like when I decided to walk (yes, wheelchair users can say walk even when we mean roll — if you correct me, I’m liable to get violent) from my hotel to the University of Washington in Seattle by myself, even though it was 6 blocks up a very steep hill. Two blocks in, I found myself trying to make eye contact with any passerby who might be kind enough to give me a push. I’m not proud, ok? Also, I know it’s better to acknowledge my limitations and ask for help than to risk my safety or Arwen’s — we’re on a high deductible insurance plan. ER trips are expensive. (That was a joke. Don’t email me.)

Like the time I tried to take my chair up an escalator at the mall, parenting has been a lesson in acknowledging my limitations and thinking creatively to overcome them. For a lot of disabled people, I think parenting feels out of reach, which is tragic, because our community has so many unique lenses through which to raise other humans to not be crappy.

There’s a handful (a small handful) of resources on the internet for disabled parents, but let’s be honest: I’m a millennial. I like pretty blogs and advice from other snarky moms, not hospital library resources written by doctors and therapists. Learning on the fly is a strength of mine, anyway (Apple Retail told me so), so my canned response is always a confident, “We’ll figure it out!”
I’m working on a guide through the techniques and stuff I’ve found useful in navigating this new endeavor of mine. If you’re someone who could use the advice, I hope you find it useful and that my experience can help knock down one of those pesky socially constructed barriers we all face. If you’re a voyeur, I hope you find it interesting. (We all have a little voyeur in us, don’t we?) I’ll be publishing it in pieces here and there, with the first coming later this week or early next.

In the meantime, go catch some Pokémon.


2 thoughts on “But how…?

  1. So very informative and well said! We are proud of you and really don’t notice a disability. We admire your strength and determination and independence. You’re an awesome Mom and certainly do “work it out”. You can’t blame us though, for feeling protective of you and always willing to help in any way we can. We love you, Bryan and beautiful Arwen with all our hearts and are in awe of your incredible parenting.

  2. I loved your article and you have an amazing outlook on life. You will do what all parents do and figure it out!

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