This Mother’s Day weekend, I kept finding my mind flittering back to our 20 week ultrasound with Lily, and the time before she was born. The ultrasound tech mentioned Lily’s long legs and pointed toes, and my husband made a comment like, “maybe she will be a ballerina!”
I remember seeing a look flutter across the woman’s face as she awkwardly said, “uh, yeah, maybe.” At that point, I thought her reaction was strange, but wrote it off as her being just a bit standoffish.
Fast forward a few hours, and her look made more sense as we sat across from a fetal care specialist, telling us that our baby girl had Spina Bifida.
Damage to the spine. She may not be able to move her legs. She may be paralyzed. A huge spectrum… none of which seemed to line up with her growing up to be a dancer.
That year, one of the popular designs for baby girl clothes and blankets was ballet shoes. We received a few things with this design for Lily, and each time I looked at them, I would think about the irony of my husband’s comment and the diagnosis we received a few hours later. Just looking at them made me uncomfortable, because I wasn’t sure if it was right to dress her in clothes that proudly proclaimed an activity she likely wouldn’t be able to participate in. I kept telling myself … it’s fine. You never know what she’ll be able to do until she shows us.
Well, this mother’s day weekend… she showed us.
She beamed at us from the stage, cloaked in sparkly purple and teal, tapping her feet, doing sashays like a champ, twirling and jumping with gusto and joy oozing out of her.
What a great reminder that I shouldn’t worry about the future when I don’t know what it holds.
What a wonderful Mother’s Day present! You really never know what our kids can accomplish until they surprise us. My SB daughter (also named Lilly) will never be a prima ballerina, but she certainly can dance with joy!
The dance company paired Lily with an older dancer who danced with her – it gave her freedom to move right along with the other dancers, without being encumbered by her crutches or walker. It was wonderful seeing her have so much fun up there.
Thank you!! This post is tearing me up so much. So beautiful. My 5 year old son was born with SB too, it was a surprise at birth, and I asked a doctor if he would be able to swim, as I have loved swimming all my life. He said (so ignorantly!), probably not. Well I found multiple inspiring videos of children with SB swimming on swim teams and even coaching swimteams, and I knew he was wrong. Yesterday my 5 year old son and I had our first parent-child swim class at the YMCA
He also loves to ride his Kettler tricycle with footclips! He doesn’t walk yet and has always been so resistant to using a walker, but this year I want to work with a walker more and creatively encourage him, and also move on to crutches. Your blog is really inspiring to me, thank you so much.
Yay Yay Yay for swim lessons at the YMCA!
That is so awesome!
I had a similar experience with my son. He has cerebral palsy and we weren’t sure if he would be able to walk. I was given footie pajamas with footballs on them. Every time I looked at them I felt uncomfortable too, for the same reasons. I ended up taking them back. My son is now three and spends hours at a time throwing around a football and crawling after it. I love watching him play football and he has a good arm. Now when I think about those pajamas I smile. It reminds me how much I’ve learned.
I just got goose bumps. You nailed it. I feel the same way. I recently bought Lily a “dance dance dance!” shirt, and now rather than feeling awkward putting it on her, it makes me smile and remember how far we have come.
My daughter with CP (uses walker) just started dance. I’d love to know more about your daughter paired with an older dancer. Also, how did you find tap shoes to fit over her braces? They’re so narrow!
I so appreciate reading these reports of these spina bifida encounters. I too (now 74 years-old, yikes!) was born with spina bifida. Very fortunately, I did learn to walk and wore corrective shoes through high school. Now, I still have to purchase mis-matched size shoes, but I realize that I am fortunate to wear regular shoes and walk. I’d love to hear stories from others who have faced this challenge—–and who may possibly even be looking for some other female to share stories ( and maybe even shoes for our close-to-same opposite feet (sizes 11/2- 2 on left foot and 4 1/2-5) on right foot.