it’s not that hard, and i’m not that special


Guess what? It’s still October, and it’s still Spina Bifida Awareness Month. Inspired by this post my friend Mary Evelyn wrote last year addressing reader questions about SB, I thought I’d cover a biggie that I’ve never answered before: How hard is this SB/special needs parenting thing day to day?

Like Mary Evelyn, I have to say: it isn’t. 

I feel like twins has always given me a unique perspective on this as I parent two same-age kids side-by-side. Parenting Claire has never been fundamentally different from parenting Etta. Sure, Claire’s had two major surgeries. We worry a little more about fevers and vomiting and other normal sick kid symptoms because they could mean a shunt malfunction (aka more surgery) or a UTI (more urology issues) or some other serious thing. She has a lot of therapies (OT, PT, speech), so she goes to a developmental preschool that allows those therapies to be more spaced out than they would be if I was trying to drive her to 7 appointments per week– but a lot of kids her age are in childcare for similar hours per week, so it’s no more difficult than taking a typical child to a daycare. We catheterize her every four hours, but now that I’ve gotten over my squeamishness about the tubes, it’s really not that much more difficult than changing toddler diapers all the time. I could probably do it with my eyes closed.

Otherwise: my girls wake up laughing and calling for Mama and Daddy, and I find them playing in their room. We snuggle as the parents drink their coffee and the girls get their one apple juice of the day. We’re really into Daniel Tiger on PBS. I fix breakfast. We get ready for our day, and Claire goes to preschool around 9 am. Etta and I do some sort of toddler activity (or run errands) in the morning before we come home for lunch and nap. She and I might run an errand before we pick up Claire, or we play a bit. We get Claire around 3:30. They’re always happy to be reunited. If their daddy is home in the afternoon (which, he often is, ER shifts are odd hours a lot of the time), then the girls play with him while I make dinner. We eat. We go for a walk. The girls take a bath. We get ready for bed. We read stories and snuggle. We give goodnight kisses. We pray no one (Etta) wakes us in the middle of the night. We rinse and repeat.

I get to parent two amazing girls. They are both hilarious, smart, and beautiful. They can both be so exasperating I want to run away from home. Thankfully those days are not the norm. Most of the time I can’t believe how lucky I am that they’re both mine.

Sure, I spend time looking for socks tall enough to wear under braces, or pants that fit over them, or shoes that go with them. Sure, sometimes I’m a little on edge about whether or not a shunt is malfunctioning. Sure, sometimes we have to juggle extra doctors appointments and therapies. There will be future hospitalizations and surgeries and therapies. But mostly, I really don’t think parenting my child with SB is fundamentally different from parenting my child without SB. And I think me on diagnosis day would have been so relieved to hear that.

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