When my daughter, Lily, was just a year old, we discovered she had spina bifida. Since that moment, our family has dedicated ourselves to nurturing an environment where she feels loved and accepted, ensuring she understands she can do everything her peers do. We consider ourselves fortunate; after extensive spinal surgery at the age of three, she improved significantly. Though she experiences weakness in her legs, she is fully mobile. However, she faces the challenges of being doubly incontinent, which sets her apart from her friends.
Navigating a hidden disability is no easy feat. It’s often awkward to explain to other children why she needs assistance at school or why she uses a different restroom. Some kids struggle to grasp why she occasionally changes clothes between arriving at and leaving school. As a mother, it’s challenging to introduce her condition to new friends. The complexities of her situation extend far beyond the typical challenges of diapering a toddler; they involve catheters, bowel irrigation pumps, medications, and frequent accidents, including waking up wet nearly every morning.
In short, it’s tough. On particularly hard days, I find myself in tears, wishing that she didn’t have to face these struggles. I long for her to have the same experiences as other children, like attending day camps or going on sleepovers without me worrying about bathroom schedules or her explaining her condition to friends’ parents.
Despite these challenges, I put on a brave face, telling her that everything will be alright while navigating these obstacles. I cheerfully assure her that no one notices the bulkiness of her diaper under her dress and that it’s perfectly normal for me to accompany her to the bathroom. I even tell her that if her legs give out occasionally, no one will see her stumble.
Initially, I believed this was the right approach—being a super-positive mom who masked the reality of her hidden disability. Then, at age 10, Lily changed my perspective with a few poignant words.
As she began to develop self-awareness, she adored pretty dresses and whimsical accessories. Like many girls her age, she also experienced mood swings, especially when things didn’t go her way. One day, she was distraught because her dress didn’t fit right. In her frustration, she couldn’t articulate what was wrong, leading to tears of self-doubt. I knelt beside her and took her hands in mine. “You look beautiful,” I reassured her. “You’re smart, funny, and kind. You have gorgeous hair and a lovely smile.”
“No, I don’t,” she pouted back. So, I tried to lift her spirits further. “You’re perfect! Just look at you!”
“I am NOT perfect!” she shouted. “Stop saying that! My body doesn’t work right! I wear diapers to bed every night! I hate it!”
I embraced her as she wept, allowing her to express her pent-up frustration and sadness. After she calmed down, she decided to change into her favorite blue dress. I wanted to discuss her feelings further, but I didn’t know where to begin.
Had I been wrong all these years to treat her as “normally” as possible? Should I have talked more openly about our shared feelings of sorrow and frustration? Should I have admitted that it pains me to see her undergo hospital tests without improvement? Should I express my fears about her future and whether she will find someone to love her for who she truly is? The reality of her condition brings me more heartbreak than I can articulate.
While I can’t change her circumstances, I realized I could engage in honest conversations about her feelings. “I hate it,” she said immediately. “I hate being different. I hate having accidents and needing to change clothes. I don’t want to need extra help at camp!”
“I get it,” I agreed. “It’s tough. It is what it is, but I wish it were different too. I mean, I wish my thighs were smaller!” This made her laugh, but it also showed her that I, too, have things about myself I must accept.
While having jiggly thighs isn’t comparable to being doubly incontinent, I’m learning that while fostering a positive body image is crucial, acknowledging imperfections is equally important. Ignoring the challenges won’t help my daughter.
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In summary, sharing my imperfections with my daughter not only fosters a deeper understanding between us but also encourages her to embrace her own challenges. It’s essential to create a space where we can be vulnerable and honest about our struggles.