When my daughter was just a year old, we received the diagnosis of spina bifida. Since that moment, our entire family has dedicated ourselves to ensuring she feels cherished and accepted just as she is, empowering her to believe she can accomplish everything her peers can. In many respects, we have been fortunate; after undergoing significant spinal surgery at the age of three, her condition improved considerably. Despite some weakness in her legs, she is able to move around independently. However, she faces challenges such as being doubly incontinent, which creates noticeable differences between her and other children.
Living with a hidden disability can be particularly challenging. It can be difficult to explain to her classmates why she has support at school or uses a different restroom. It can be uncomfortable to address why she sometimes arrives in one outfit and leaves in another. As her mother, I often find it tough to explain her condition to new friends and their parents. This journey is not comparable to merely having a toddler in diapers; it involves a complex routine of catheters, bowel management tools, medications, and frequent accidents, including waking up wet most mornings.
Truthfully, it can be incredibly disheartening. On particularly tough days, I find myself shedding tears, wishing she didn’t have to endure such burdens. I yearn for her to participate in day camps like her peers, to enjoy sleepovers without worrying about bathroom schedules or whether she will be able to confide in her friend’s parents during an unexpected accident.
Nevertheless, this is her reality, and I put on a brave face, assuring her that everything will be alright while navigating these challenges as best as I can. I try to comfort her by saying that no one notices when she wears a diaper under her dress, even if it is bulky, and I reassure her that it’s perfectly normal for her mother to accompany her to the restroom. When her legs falter and she stumbles, I remind her that others are likely unaware.
For years, I thought this was the best approach—being the ever-optimistic mother who downplays her hidden disability. However, my perspective shifted dramatically when my daughter expressed her feelings one day.
At the age of ten, she was starting to become more aware of herself and her surroundings. She loved wearing beautiful dresses and adding fun accessories to her hair. But like many children her age, she also experienced mood swings, especially when things didn’t go her way. On one particular occasion, she became upset because her dress didn’t look right. As tears of frustration began to flow, I knelt down and held her hands. “You look amazing,” I reassured her. “You are beautiful.”
“No, I’m not,” she replied, and I decided to bolster her confidence further. “You absolutely are! You’re intelligent, funny, kind, and caring. You have lovely hair and a bright smile. You are perfect!”
“I am not perfect!” she shouted in response. “Stop calling me perfect when my body doesn’t function right. I wear diapers to bed every night and still wake up wet! You always say I’m perfect, but I’m not! Nothing works right, and I hate it! So please, don’t call me perfect!”
As she cried, I held her close and allowed her to release her pent-up emotions. When 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 how to start.
Have I made a mistake by treating her as “normally” as possible all these years? Should I have discussed her condition more openly, expressing my own feelings of sadness and frustration? Should I have shared my fears about her future—worries that she might not find someone who loves her for who she is? Or that the permanence of her condition breaks my heart more than anything else?
While I cannot change her situation, I can create space for conversations about her feelings. “I hate it,” she said immediately. “I hate that I’m different from everyone else. I hate that I had an accident at the play center and had to change clothes, and then my friends asked why I was wearing something different. I hate that I can only go on the school camp if two extra helpers come along. I don’t want that. I don’t want any of it.”
“I agree,” I replied. “It is indeed unfair. While it is what it is, I too wish it could be different. On a lighter note, I wish my thighs were a bit smaller.” She chuckled, seemingly surprised to learn that I too have insecurities. While my minor concerns pale in comparison to her struggles with a hidden disability, I’ve come to realize that fostering a positive body image in our children is crucial, but so is acknowledging and discussing imperfections. Ignoring these issues won’t benefit my daughter.
Conclusion
In conclusion, it is vital to have open discussions about vulnerabilities and imperfections, as they can foster deeper connections and understanding between parent and child.
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