When we found out that one of our unborn baby twins had something called Spina Bifida, I knew almost nothing about SB. I didn’t know if the doctors were telling me my baby would never walk or talk, or if she would suffer constant pain, or even what she would look like. Between my pediatrician husband and genetic counselors, I quickly got a fuller picture of what SB meant, medically, but I remember a very specific hunger for images of what SB would literally look like. In the midst of what was a grieving process to accept and understand our new normal, I sought out pictures of people, particularly kids with SB. And more than anything else, these images comforted me. I remember being thoroughly relieved to find that people with SB were just like any other sort of people: beautiful, silly, happy, sad, and completely themselves. After seeing some actual images of actual people with SB living life in the world, I could move away from clinical distance from this new SB reality and embrace my growing bond with Baby B– our Claire, as a full and complete person, not a diagnosis or a disability.
Now another Spina Bifida Awareness Month is upon us, and more than anything, what I want to do is speak to others in that place where we were just a few short years ago: newly diagnosed, just wondering, “What does Spina Bifida look like?” One of my favorite blogging friends, Sarah at Wifeytini, suggested we post photos of our kids in all their beautiful ordinary exasperating glory, and label them “This is what Spina Bifida looks like,” and share them using the hashtag #embracethebif.
This isn’t a viral social media charity challenge. You don’t have to make a donation or dump ice on your head. But if you’re a person with SB or the parent of a child with SB, maybe you could join in and share some positive images online this month (and be sure to post them on the Wifeytini Facebook page), so that other folks just starting out on this journey will be able to take comfort and know that they aren’t really going to have to be a special kind of parent, raising a special kind of kid. Because SB is just another way of being a person in the world, and like any part of life, it has its share of hardships but also more than its share of beauty and normalcy too. And if you don’t have SB in your life or in your family, feel free to share some of these instead.