A couple of days ago, almost two months into being a mom, I participated in a panel discussion on adaptive parenting and babywearing hosted by Baby K’Tan. It was pretty successful, and people asked a lot of great questions. The theme I saw was hesitance and insecurity, which are two things I felt (and still feel, to some degree) throughout my various phases of considering pregnancy, being pregnant, giving birth, and caring for a brand new baby. With that in mind, I’d like to use this space to share my experiences, tips, favorite products and adaptations, and plans with you all. Being a disabled parentcan feel like a solitary experience, and I hope I can help ease that problem.
I’m the brand new mom of a sweet, spunky, needy 7-week-old. I’m also disabled.
We didn’t get pregnant on purpose. I mean, we did the thing that gets one pregnant on purpose, but the resulting pregnancy wasn’t really the intention. (TMI?) I’m 28 and my husband, Bryan, is 30. We’d been discussing the possibility of maybe-eventually-down-the-road-we’ll-talk-about-it-later having kids, but we weren’t committing to anything.
The thing is, I’m not very good at routines, and birth control pills require daily consumption to be effective, as we found out. I’d say oops, but this little human is my favorite thing in the world, and I’m so glad she happened.
For my whole life, I’ve had concerns about what pregnancy would mean for me, orthopedically speaking. I have a spinal cord injury from birth at C6-C7 (the base of my neck), and I’m an incomplete quadriplegic, meaning I have some control of all of my muscles below the injury level, but not the full function of many of them.
Sidebar: When people hear the word quadriplegia, they usually jump to the conclusion that a person has no sensation or voluntary use of any muscles below the injury, but paralysis is complicated and nuanced. Every injury is different. If the spinal cord is severed, then yes, complete paralysis is the result. But there are about a zillion degrees of damage between non-injured and severed, and every body handles the trauma differently. So there’s your science lesson for today.
Anyway, I was a little worried about pregnancy being physically hard for me. I walk short distances, but my balance is bad, and have pretty weak abdominal muscles. You can probably imagine the kinds of issues I was afraid of. As it turned out, those were the least of my worries because I got hyperemisis, which anyone can get, and it totally sucked.
As we told family and friends we were expecting, we were met with a wide range of reactions, from, “Wow, congratulations!” to, “…are you sure that’s a good idea?” Um, well, no, but we’re kind of in it now, so…
I’m blessed with an unbelievably supportive husband who’s totally confident in my ability to gauge what will be best for me in any given situation. We found an OB and a doula (both of whom we fell in love with, by the way) and proceeded just like anyone else would.
The next several months were a blur of dealing with extreme nausea 24 hours a day (hyperemisis) and trying to get a grasp on what adaptations we’d need to make to the typical roster of parenting equipment and supplies to accommodate my low muscle tone and poor dexterity.
Unfortunately, I found it really difficult to find much in the way of advice. I’m not particularly connected to the spinal cord injury community, and I don’t have friends with mobility disabilities like mine that are also parents, so I did a lot of guesswork. When you have a disability, sometimes it’s best to approach a problem as brand new; that is to say, rather than observing how an able bodied person does something and trying to get as close to that as possible, it’s better to focus on what you’re trying to accomplish and find your own way there. Otherwise, it’s easy to get caught up in feeling inadequate for not doing it like everyone else, and there’s no need for that.
All of this to say, if you’re disabled, disabled-curious, a parent, not a parent, whatever, I invite you to join me as I figure out how to be a mom in a world and industry designed for…well..not me.