When my daughter, Lily, turned one, we discovered she had spina bifida. From that moment forward, our entire family has dedicated ourselves to making sure she feels cherished and accepted just as she is. We want her to know she can do everything any other child can. In many respects, we’ve been fortunate; after undergoing extensive spinal surgery at age three, her condition improved significantly. While she has some weakness in her legs, she is fully mobile. However, she faces challenges like being doubly incontinent, which naturally leads to noticeable differences between her and her peers.
Navigating a hidden disability is tough. It’s often awkward trying to explain to other children why she needs assistance at school or why she uses a different restroom. Some kids struggle to understand why she sometimes changes outfits during the school day. As a mother, it’s challenging to introduce her condition to new friends. Managing these complexities is no small feat; it involves catheters, bowel irrigation pumps, medications, and frequent accidents, including waking up wet nearly every morning.
It’s undeniably tough. On particularly difficult days, I find myself in tears, wishing she didn’t have to endure all of this. I long for her to attend day camp like other kids her age, to enjoy sleepovers, or to play at a friend’s house without worrying about bathroom schedules or whether her friend’s parents will understand if something goes wrong.
Despite these struggles, I put on a brave face, assuring her that everything will be okay. I tell her that no one notices when she wears a diaper under her dress, even though it’s bulky. I reassure her that it’s perfectly normal for me to accompany her to the restroom, and if her legs let her down and she stumbles, I remind her that no one is paying attention.
For a long time, I thought this was the right approach: a super-positive mom projecting an image that her hidden disability was just that—hidden. But one day, everything changed with a few heartfelt words from Lily.
At age 10, she began to become more self-aware, developing a love for pretty dresses and delightful hair accessories. Like many kids her age, she can get moody, and one day, she was upset because her dress didn’t look right. In her frustration, she couldn’t articulate why it felt wrong, leading to tears of self-doubt. I knelt down, took her hands, and said, “You look beautiful.”
“No, I don’t,” she replied, and I tried to lift her spirits further. “Yes, you do! You’re smart, funny, kind, and caring. You have gorgeous hair, a lovely smile, and legs that go on for miles. You’re perfect!”
“I AM NOT PERFECT!” she shouted. “Stop calling me perfect when my body doesn’t work right! I have to wear diapers every night and still wake up wet! I hate this! Don’t say I’m perfect!”
I held her as she cried, allowing her to express her frustration. After she calmed down, she decided to change into her favorite blue dress. I wanted to discuss everything she had shared, but I found myself unsure of where to start.
Have I been wrong to treat her as normally as possible all these years? Should I have been more open about my feelings, expressing that it hurts to see her undergo hospital tests without improvement? Should I share my fears about her future and the possibility of finding love?
I can’t change her circumstances, but I can take the time to talk about her feelings. “I hate it,” she confessed. “I hate being different. I hate having to change clothes at the play center after an accident. I hate needing extra help to go on school trips.”
“I know,” I replied. “It’s tough. I wish things were different too. I mean, I also wish my thighs were smaller.” She laughed, surprised to hear I have insecurities of my own. While struggling with jiggly thighs doesn’t compare to her challenges, I realized that acknowledging our imperfections is just as vital as fostering a positive body image.
In the end, ignoring her challenges won’t help her. Instead, I’ve learned to embrace our discussions about imperfections, reinforcing that it’s okay to feel frustrated about them.
For more information on navigating parenthood and the challenges associated with insemination, check out our post on at-home insemination kits. If you’re looking for expert resources, Cleveland Clinic offers excellent information on intrauterine insemination, which can be invaluable for those on the journey to parenthood.
In summary, sharing flaws with my daughter has highlighted the importance of acknowledging imperfections alongside celebrating strengths. It’s a journey of understanding that we’re all navigating life’s challenges together.
Keyphrase: sharing flaws with my daughter
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