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. Continue reading “this is what spina bifida looks like”
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