When my daughter, Lily, was just a year old, we received the life-changing news that she had spina bifida. This diagnosis prompted our entire family to work diligently to ensure she feels loved and accepted for her unique self. We strive to empower her, so she never feels limited compared to other children her age. While we’ve faced challenges, including extensive spinal surgery when she was three, we are grateful that she is fully mobile despite some weakness in her legs. However, she does face the reality of being doubly incontinent, which inevitably sets her apart from her peers.
Navigating a hidden disability is complex. It’s challenging to explain to other children why she needs additional support at school or why she uses a different bathroom. Some kids struggle to comprehend why she sometimes arrives at school in one outfit and leaves in another. As a mother, it’s difficult to introduce her condition to new friends or their parents. The management of her needs is intricate, involving catheters, bowel irrigation pumps, and a myriad of medications, coupled with the reality of frequent accidents, including wet beds nearly every morning.
It can be disheartening. On particularly tough days, I find myself in tears, wishing she didn’t have to endure these challenges. I wish she could participate in day camps like her peers or attend sleepovers without my anxiety over bathroom logistics or her ability to communicate her needs to others.
Despite these difficulties, I wear a smile and reassure her that everything will be just fine. I tell her that no one notices when she wears a diaper under her dress, even though it might be bulky. I comfort her by saying no one thinks it’s odd that I accompany her to the restroom, and when her legs give way, I remind her that no one seems to notice her stumbles.
For years, I believed that maintaining a positive outlook was the best approach—being the super-optimistic mom who portrays her hidden disability as something unnoticeable. But then, at just ten years old, Lily altered my perspective with a few heartfelt words.
As she began to embrace her individuality, she developed a fondness for pretty dresses, twirly skirts, and cute hair accessories. Yet, like many kids her age, she also experiences mood swings when things don’t go her way. One such day, she became upset because her dress didn’t look right, and her frustration quickly turned into tears. I knelt before her, holding her hands and saying, “You look lovely.”
In response, she exclaimed, “No, I don’t!” In an effort to lift her spirits, I began to list her wonderful qualities. “You’re smart, funny, and so kind. You have beautiful hair and an amazing smile!”
But then she shouted back, “I am not perfect! Stop saying that when my body doesn’t work right. I hate wearing diapers to bed every night! Don’t call me perfect when nothing works correctly!”
I held her as she cried, allowing her to release all the pent-up frustration and sorrow. Once she calmed down, she expressed her desire to change into her favorite blue dress. I contemplated her words and felt uncertain about how to proceed.
Have I been wrong all these years by treating her as “normal” as possible? Should I have openly shared my feelings and frustrations too? Should I tell her how much it pains me to see her undergo hospital tests without improvement? Should I admit my fears about her future, that I worry she might struggle to find someone who loves her as she is? This heartache is more profound than anything else I’ve ever experienced.
While I can’t change her circumstances, I realized that it’s crucial to have these conversations with her. “I hate it,” she said bluntly. “I hate that I’m not like everyone else. I hate when I have accidents at the play center and have to change clothes in front of my friends.” I agreed with her, acknowledging that it’s indeed a tough situation. I wish things were different too.
I lightened the mood by joking about my own insecurities, mentioning my jiggly thighs, which made her laugh. It was surprising for her to hear that I also have imperfections I deal with. While my body image issues do not compare to her challenges, I learned that while fostering a positive body image is essential, discussing our imperfections is equally important. Ignoring these realities won’t benefit her or help her cope.
If you’re navigating similar challenges or are interested in learning more about home insemination methods, I recommend checking out this insightful post on Cervical Insemination and exploring Make a Mom for reliable at-home insemination kits. For further information on pregnancy and home insemination, visit CDC’s pregnancy resource page.
In summary, sharing our imperfections can foster understanding and connection. By discussing our struggles openly, we teach our children that it’s okay to feel vulnerable and that everyone has their own battles to face.
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