Why I’ve Chosen to Share My Flaws with My Daughter

home insemination Kit

When my daughter Lucy was just a year old, we found out she had spina bifida. Since that moment, our family has made a concerted effort to ensure she feels loved and accepted just as she is, so she never feels limited compared to her peers. In many ways, we’ve been fortunate; after extensive spinal surgery when she was three, her situation improved significantly, and despite some weakness in her legs, she is mobile. However, she does face challenges due to being doubly incontinent, which inevitably sets her apart from her friends.

Living with a hidden disability is tricky. It can be uncomfortable to explain to other kids why Lucy needs assistance at school or why she uses a different bathroom. Sometimes it’s hard for them to grasp why she might come to school in one outfit and leave in another. As a mother, it’s daunting to have to explain her condition to new friends. Managing this situation is complicated; it’s not just like having a toddler in diapers. It involves catheters, bowel irrigation, medications, and more than a few accidents—including wet beds nearly every morning.

Honestly, it can be overwhelming. On tough days, I find myself crying, wishing deeply for a world where she doesn’t have to endure all of this. I wish she could experience day camp like other kids or enjoy sleepovers without my worries about bathroom schedules or what she might say to her friends’ parents if something goes wrong.

It’s a tough reality, but this is her life, and I do my best to remain upbeat. I put on a smile, telling her everything will be okay while navigating these challenges the best I can. I assure her that her diaper under her dress is unnoticeable, even though it’s bulky. I let her know that no one thinks it’s odd when I accompany her to the bathroom and that if her legs give way sometimes, no one is paying any attention.

I thought I was doing the right thing—being the ever-positive mom, always reassuring her that her hidden disability is just that—hidden. But then Lucy shifted my perspective with a few heartfelt words.

At age 10, she’s starting to become more aware of herself. She loves wearing pretty dresses and cute hair accessories, but like many kids her age, she can get moody when things don’t go her way. One day, she was upset because her dress didn’t look right, and despite my reassurances, her tears began to flow. I knelt down to hold her hands and told her how beautiful she is.

“No, I’m not!” she exclaimed, and I tried to lift her spirits further. “You truly are. You’re clever, funny, and so kind. You have beautiful hair, a lovely smile, and legs that go on for miles. You’re perfect!”

“I am not perfect!” she shouted. “Stop saying that! My body doesn’t work right, and I have to wear diapers to bed every night! I hate it! Just stop calling me perfect!”

I embraced her as she cried, letting her vent her frustrations, and then she decided to change into her favorite blue dress. I wanted to talk about everything she just expressed, but I wasn’t sure where to start.

Was I wrong to treat her as “normally” as possible all these years? Should I have been more open about my feelings—sharing that it angers and saddens me too? Should I tell her how hard it is to watch her go through hospital visits without any real improvements? Should I express my fears that she may struggle to find love because of her challenges?

I can’t change her situation, but I realized it was crucial to discuss her feelings with her. “I hate it,” she confessed. “I hate being different. I hate when I have accidents at playdates and have to change. I don’t want assistants at school camp.”

“I get it,” I replied. “It’s tough. It is what it is, but I wish it were different too. Just like I wish my thighs were slimmer,” I joked, hoping to lighten the mood. She laughed, surprised that I have things I’m not thrilled about too.

While having jiggly thighs might not compare to her challenges, as a parent, I’m learning that while it’s essential to promote a positive body image, it’s equally important to acknowledge and talk about imperfections. Ignoring these issues won’t help Lucy in the long run.

For more insights on navigating parenting and hidden disabilities, check out this post on our other blog. If you’re looking for more information on family planning, Make a Mom is a great resource. You can also find helpful information on infertility procedures at Healthline.

Summary

In this heartfelt narrative, a mother reflects on her journey of raising her daughter, Lucy, who has spina bifida. Faced with the complexities of her daughter’s hidden disability, she learns the importance of discussing imperfections openly, fostering a supportive environment where Lucy can express her challenges and emotions.