In this room full of toddlers in tutus, absolutely no one is worried about their rounded belly under purple spandex. No one has given a thought to her chubby thighs in pink tights. Not a one has looked in envy upon the body of her classmates. Instead, as a boombox plays an instrumental of “Beauty and the Beast,” they giggle and grin. They grab hands and twirl. They hug and spin. They are grace in action, even as they regularly fall down.
Even as I feel my own infrequently-exercised thighs burning as we march with high knees and pointed toes around the room, I’m learning powerful lessons too. And they have nothing to do with poise or pointe, and everything to do with grace. Grace for myself and my perfectly imperfect body. Grace and love for the women around me, that I may see them as hands to hold and partners to dance with, not competition or something to compare myself to. Grace, even, for my toddler when she refuses to participate with the rest of the class on a particularly bad morning.
Six weeks of dance classes with Etta Jane are drawing to a close, and I am happy to sign us up for the next six. My happiness is doubled because this time, I get to sign Claire Bear up too. After a year and a half in developmental preschool, Claire has made a lot of amazing progress. Enough, in fact, that we feel ready to back off on some of her therapies. She’s going to be staying home with Etta Jane and me, and we’ll be seeing her PT on an outpatient basis. I am thrilled to get more time with my girl before she has to start real preschool all too soon, and I know she’s going to love dance class as much as Etta Jane and I do. I talked to the teacher and made sure that it would be ok if she had to wear braces and sneakers instead of ballet shoes, and was assured that she is more than welcome to join the class. Grace abounds. There was a point where I didn’t think our girl would walk, and now she’s ready to DANCE.
Over the past three years, there have been many times that I’ve thought about me on our Diagnosis Day, the day we found out that one of the babies then growing in my belly had spina bifida. It was my 27th birthday. We were excited to find out if our twins were boys or girls. We found out they were girls, and we also found out “Baby B,” the “one in the top bunk” had something wrong with her head and spine. Continue reading “Dear me on diagnosis day:”
It started when I saw the posts from the Spina Bifida Association on Facebook, again letting their audience of people who already have SB in their lives know that SB can sometimes be prevented by making sure women of childbearing age are getting enough folic acid even before they become pregnant, as neural tube defects happen so early in a pregnancy that by the time you miss your period and start taking your prenatal vitamins, it’s too late. But I have a feeling if you’re following the SBA on Facebook, you already know that.
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?
We’re sitting on the couch. Claire reaches up her dimpled hand and touches the knot just behind her right ear, mostly hidden in her loopy white blond curls. “I have an ouchy.” “Oh baby,” I say, “that’s not an ouchy, that’s your shunt! You have that because you have Spina Bifida. Your shunt helps your head feel better.” “Oh,” she says, “I have a buckle on my head.” Continue reading “coming into awareness”
If you read my Twitter bio, you’ll notice that among the facts about myself I chose to include in my scant 140 character allowance, I use the phrase #spinabifida mom.
This means my feathers were somewhat ruffled last night when someone I follow (and like!), whose baby has recently undergone surgery, expressed bewilderment that some moms choose to identify themselves through their children’s illnesses. For one thing, my daughter’s disability is not an illness. It’s not something that we can treat and eventually put behind us. It’s part of who she is and has been since long before she was born. It has shaped our lives in many ways up to this point, and it will be a defining (note I said “a” and not “the”) factor in the rest of our lives. Spina Bifida will mean more surgeries. It will mean more therapies. It will mean doing many day-to-day life processes differently. It will mean concerns about the accessibility of public places and the adaptability of certain activities. It will mean advocacy and activism and acceptance. It’s just a fact that it’s a huge part of Claire’s life, and, because we are her parents, ours. Continue reading “why I call myself a #spinabifida mom”
Having just spent my morning getting myself and the girls ready to go to Spina Bifida Clinic, three hours and change trapped with two two-year-olds in one exam room, and having gotten them home without car napping and successfully into and asleep in their beds, I pondered a daytime adult beverage. Instead, I wrote a blog post. Continue reading “A Claire Update”