When my daughter, Lily, was just a year old, we discovered she had spina bifida. Since that moment, our entire family has dedicated ourselves to making sure she feels cherished and accepted for who she is. We’ve worked hard to ensure she never feels limited compared to her peers. In many respects, we’ve been fortunate; after a significant spinal surgery when she was three, her condition improved, and although she experiences some weakness in her legs, she is fully mobile. However, the reality of being doubly incontinent means that she faces challenges that set her apart from other kids.
Living with a hidden disability can be tough. It’s often awkward to explain to other children why she needs assistance at school or why her bathroom routine differs. Some kids struggle to understand why she sometimes changes outfits during the day. As a mother, it’s difficult to introduce her to new friends without feeling the weight of her condition hanging over us. It’s far more complex than simply having a young child in diapers; it involves catheters, bowel irrigation pumps, and a myriad of medications, along with the frequent accidents that can occur.
Honestly, it can be overwhelming. On particularly challenging days, I find myself in tears, wishing that she didn’t have to endure these struggles. I long for her to experience day camps and sleepovers without my mind racing with concerns about schedules and what might happen in unfamiliar surroundings.
Despite all of this, I put on a brave face, assuring her that everything is okay. I tell her that nobody notices the bulky diaper underneath her dress and that it’s perfectly fine for me to accompany her to the bathroom. When her legs give out, I remind her that no one is paying attention to her stumbles.
For a long time, I believed this was the best approach—being the ever-optimistic mom, always smiling and assuring her that her hidden disability was something no one else would notice. Then, one day, Lily changed my entire perspective with a few heartfelt words.
At 10, she’s starting to become more self-aware, enamored with pretty dresses and delightful hair accessories. Like many children her age, she experiences mood swings and frustration when things don’t go her way. On one particular day, her dress didn’t sit right, and she couldn’t articulate why, leading to tears of frustration. I knelt before her, holding her hands, and said, “You look beautiful.”
But she retorted, “No, I don’t!” In that moment, I decided to help her feel better. “You do! You’re smart, funny, kind, and caring. You have gorgeous hair and a radiant smile. You’re perfect!”
“I am not perfect!” she shouted. “Stop saying that! My body doesn’t work properly. I have to wear diapers to bed every night, and I still wake up wet! I hate this, so please don’t call me perfect!”
As she cried, I held her, allowing her to vent her feelings. Once she calmed down, she decided to change into her favorite blue dress. I wanted to address everything she had expressed, but I wasn’t sure where to start.
Have I been wrong all these years to treat her as “normal” as possible? Should I have discussed her condition more openly, sharing that it pains me to see her go through hospital tests with little improvement? Should I admit that I fear for her future, worried that she may struggle to find love? Should I confess that the permanence of her condition breaks my heart?
While I can’t change her circumstances, I can create a safe space for her feelings. “I hate it,” she shared. “I hate being different. I hate having to change clothes at the play center when I have an accident. I hate needing extra help at the school camp.”
“I get it,” I replied. “It’s tough. It really is. I wish things were different, too. But you know what? I wish my thighs were smaller.” She chuckled, surprised to hear I have insecurities too. I didn’t dive into my full list of flaws, but it seemed to comfort her to know that imperfection exists in all of us.
While struggling with jiggly thighs is not on the same level as being doubly incontinent, I’m learning that, especially as a parent of a child with a hidden disability, it’s crucial to foster a positive body image while also acknowledging that imperfection is part of life. Ignoring these realities won’t help my daughter grow.
In conclusion, embracing our flaws and sharing our struggles can create a deeper bond with our children, helping them navigate their own challenges with greater understanding and resilience.