When my daughter, Lily, was just a year old, we discovered she had spina bifida. Since then, our family has put in tremendous effort to ensure she feels cherished and accepted just as she is, making sure she knows she can do everything her peers do. In many respects, we’ve been fortunate; after extensive surgery on her spine at age three, her condition improved significantly. Despite some weakness in her legs, she is fully mobile. However, she does struggle with being doubly incontinent, which inevitably sets her apart from her friends.
Living with a hidden disability is tough. It’s challenging to explain to other kids why she needs assistance at school or why she has to use a different restroom. Some children find it hard to understand why she sometimes shows up in one outfit and leaves in another. As a mother, I find it difficult to explain her condition to new friends. It’s a complicated reality, far beyond the simplicity of changing a diaper. It involves catheters, bowel irrigation pumps, medication, and an array of accidents—often waking up wet nearly every morning.
Overall, it’s a tough situation. On particularly challenging days, I find myself crying, wishing fervently that she didn’t have to face these hurdles. I wish she could attend day camp like other children her age. I wish she could go on sleepovers or hang out at friends’ houses without my anxiety about bathroom schedules or whether she’ll share her challenges with her friends’ parents.
It’s a hard truth to swallow, but this is her reality. So, I put on a brave face, tell her everything will be okay, and navigate these challenges as best as I can—whatever “normal” means. I try to comfort her, saying no one can tell she’s wearing a bulky diaper under her dress. I assure her that it’s perfectly fine for me to accompany her to the restroom, and if her legs falter and she stumbles, I remind her that no one is even paying attention.
I thought this was the best approach—being the upbeat mom, always smiling and reassuring her that her hidden disability is just that: hidden. But then, at the age of ten, Lily shifted my perspective dramatically with just a few words.
At this age, she’s becoming more self-aware. She loves pretty dresses, twirly skirts, and cute hair accessories. Like many ten-year-olds, she can also get moody when things don’t go her way. One day, her dress didn’t look right, and she became upset. Unable to articulate why it was wrong, she erupted in tears. I knelt before her and took her hands in mine. “You look beautiful,” I said. “You always do.”
“No, I don’t!” she pouted. So, being the encouraging mom, I pressed on.
“You do! Have you seen yourself? You’re smart, funny, kind, and loving. You have gorgeous hair, a beautiful smile, and legs that look amazing!”
“I am NOT perfect!” she suddenly shouted. “Stop saying I’m perfect when my body doesn’t work right! I have to wear diapers to bed every night and wake up wet! You keep saying I’m perfect, but I’m not! Nothing works right, and I hate it, so please don’t call me perfect!”
I held her close as she let it all out. Once she calmed down and chose to change into her favorite blue dress, I realized I needed to have an honest conversation with her. Should I have been more open about how her condition affects me too? Should I have shared my own fears for her future?
“I hate it,” she admitted. “I hate not being like everyone else. I hate having accidents at the play center and needing a change of clothes. I hate needing two extra assistants at school camp—I don’t want that!”
“Yeah,” I agreed, “it’s horrible. I wish it were different too. You know, I also wish my thighs were a bit smaller.” She laughed, surprised that I had insecurities of my own. While my wobbly thighs don’t compare to her challenges, I think it’s crucial to acknowledge that discussing imperfections can be just as important as promoting a positive body image.
Ignoring our flaws won’t help my daughter. Instead, it’s essential to embrace and talk about them.
In conclusion, while navigating the journey of parenting a child with a hidden disability is filled with challenges, sharing our imperfections helps foster understanding and connection. It’s a reminder that everyone has their struggles, and embracing them together can be a source of strength.