disabled parenting: the pre-pre-show

i went to the doctor on monday to get a referral to an ob/gyn to get started on this whole baby-makin’ thing (not actually starting on it for real until after summer, but i wanted to establish a relationship with an ob/gyn in advance of conception) & to address some of my pain issues. the jury is still out as to what is actually wrong with me. the only thing that is 100% definite is that i have severe scoliosis, which is a curvature of the spine. lots of people have scoliosis, & most of them are asymptomatic–it doesn’t cause them any pain or bring up other health issues. but that’s not the case for me!

the doctor did some spinal x-rays & confirmed that i am indeed missing two vertebrae in my lumbar spine (lower back). my first orthopedic specialist ten years ago noticed the same thing & just kind of shrugged & said, “i’ve never seen anything like that before. oh well.” i mean, he did say that the missing vertebrae are probably the cause of the scoliosis. the rest of my spine has to work that much harder to hold up the upper half of my body, & has developed a deformity as a result. but as there is nothing to be done about it, he didn’t really fuss over it.

turns out that pretty much the only possibly cause of the missing vertebrae is spina bifida–spina bifida occulta, to be precise. that is spina bifida is its most mild form. spina bifida is a neural tube defect in which a fetus’s spine does not develop correctly. the defect usually develops in the second month of pregnancy as a result of a folate deficiency. that’s why obstetricians & midwives are constantly on their clients about taking folic acid supplements. since the birth community started busting their humps to raise awareness about the importance of folate (which they began in the early 80s), there has been a marked decrease in the incidences of babies born with spina bifida. prenatal specialists count folate awareness as one of the great leaps forward for modern-day prenatal care.

but i was born in the late 70s, before the big awareness campaign really got going. i guess my mom didn’t know or something? she switched obstetricians like 95 times while she was pregnant with me so i don’t know about the level of care she received. in any case, some experts say that as much as 5-10% of the general population has spina bifida, & most of them never manifest any health effects from it whatsoever. most don’t even know they have it. so apparently there are many situations in which it’s just no big whoop. when it is a big whoop, it’s REALLY BIG. babies can be born with their spinal cords just flapping in the breeze. the level of disability that can manifest in severe spina bifida is REALLY FUCKING INTENSE.

so if this is part of my condition, i got off pretty lucky, all things considered. i mean, it would be great to have a normal spine & everything, but at least i have skin on my back. skin really is a gift.

there’s also still the possibility that i have osteoarthritis, rheumatism (awaiting further diagnostic tests), or some more obscure form of immunosuppression arthritis (also awaiting tests). who knows?

i talked a little with the doctor about how all of my pain & disability stuff could impact the process of being pregnant & parenting. at first, i was just freaking out a little about pregnancy. all that extra weight on my joints seems like a recipe for disaster. but then i had another day when i couldn’t lift my arms (that happens a few times a month) & all of the sudden i was like, “oh snap, lifting your arms is pretty important when you have a baby.” i started thinking about all the baby/child stuff that is going to be so hard for me to do–stuff that is so easy for able-bodied people. buttoning the little snaps on a onesie, unscrewing a jar of baby food, even just having the stamina to hang out with a kid at the playground. am i going to be able to deal with this? i certainly wasn’t looking at parenting & thinking that it was going to be a breeze, but i do need to think about the fact that it’s going to be even harder for me in a few specific ways than it is for the average mama.

the doctor (who is a woman & a mom) agreed with me & said i should ask myself some hard questions about how invested i am in having a child–& not just in terms of giving birth myself, but in terms of being a parent, full stop. that is a hard question. i 100% want to have a kid. there’s not even a tiny little sliver of me that doesn’t want to do it. but want & ability don’t always go hand in hand.

& of course, all of this freaks jared out. he seems to be into the idea of having a kid, but i don’t know if he is as 100% on board as i am. the plan has been for me to be the primary caretaker while he’s off being a PhD student & a professor, but when i told him all the crap the doctor said, he was like, “huh. sounds like we might have to think a little bit more about how to balance a disability & a research schedule.” yeah, i guess.

i kind of wonder if i am over-thinking the whole thing. lots of disabled people are parents. lots of people become parents, & later become disabled & they work their shit out. but most (all?) of my parent friends are able-bodied, & when i envision my ideal parenting strategies & decisions (most of which are riffs off of attachment parenting), i wonder if they are realistic for my actual life & situation. nine or ten years ago, i enrolled in midwifery school & had a lot of ideas about how home birth can be really awesome–better than normal, uncomplicated hospital births in a lot of situations, due to the lack of intrusion from extraneous doctors & nurses & rules & stuff. i won’t lie–i think i actually got pretty up on my high horse about it (especially for someone who has never even given birth). i still think home births can be a good choice for a woman with few or no complicating health issues–if that is what she wants. but i no longer think it’s an option for me, with my chronic pain & weird blood pressure issues (my blood pressure plummets in response to pain; i’ve been rushed to the ER three times because of it & had to have adrenaline shots to stabilize my vital signs on two separate occasions).

this is some of what i have been thinking about this week.

Published by Ciara

Ciara Xyerra wrote zines for the better part of two decades. She has a brilliant & adorable preschooler named Ramona & sews as much as she possibly can. She lives in Lawrence, Kansas with her boyfriend. She enjoys catching up on "The New Yorker", meatball subs, keeping it cranky, intersectional post-third wave feminism, dinosaurs, & monsters. If you have nothing nice to say, she recommends that you come sit here by her, so you can say not-nice things together.

One thought on “disabled parenting: the pre-pre-show

  1. Hey man, trust me when I say it: you can do this. You don’t have to put your baby in onesies; put her or him in pants and shirts, dresses and leggings. You can make your own baby food in the blender, or take a good health day to transfer it to Tupperware or Ziplocs and store it in the freezer, or bypass the baby food thing entirely (a popular option these days). Keeping up with a kid is hard work- especially when they’re toddlers and want to get into/destroy EVERYTHING within arm’s reach- but you can handle it. Like everything else, you’ll figure out your coping mechanisms as you go along.

    I think you’re doing the right thing by taking the time to think this out. Every potential parent should do that. But don’t deny yourself if it feels like something you really want to do, just because you’re worried that you won’t be the perfect parent. That ideal just does not exist.

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