When my daughter, Mia, was just a year old, we received the diagnosis of spina bifida. Since that moment, our family has been dedicated to fostering an environment where she feels cherished and accepted for who she is, ensuring she never feels limited in her abilities compared to her peers. In many respects, we consider ourselves fortunate; following significant surgery on her spinal cord at age three, she made remarkable progress and, despite some weakness in her legs, she is fully mobile. Nonetheless, she faces challenges as she is doubly incontinent, which means that her differences from other children are unavoidable.
Navigating a hidden disability presents its own unique difficulties. It can be awkward explaining to other children why she requires assistance 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 challenging to introduce her condition to new friends. The complexities extend beyond simply having a young child in diapers; they encompass catheters, bowel irrigation pumps, medication, and frequent accidents, including wet beds nearly every morning.
In short, it can be incredibly overwhelming. On particularly tough days, I find myself sitting in tears, wishing she didn’t have to endure all these hardships. I wish she could attend day camp like her friends, go on sleepovers, or play at a friend’s house without me worrying about restroom schedules or whether she would feel comfortable informing her friends’ parents about her condition.
Yet, despite these challenges, I maintain an optimistic facade, assuring her that everything will be fine. I often reassure her that no one can tell when she’s wearing a diaper under her dress, regardless of its bulkiness. I tell her that it’s perfectly normal for me to accompany her to the bathroom and that if she stumbles due to her legs acting up, no one seems to notice. Initially, I believed this was the best approach—being the super-positive mom, always smiling, and framing her hidden disability as something that goes unnoticed.
However, my perspective shifted dramatically after a pivotal conversation with Mia when she turned ten. As she began to develop her self-awareness, she became more conscious of her appearance, loving pretty dresses and twirly skirts. One day, she was upset because her dress didn’t seem right. As she struggled to articulate her feelings, tears of frustration and self-pity began to flow. I knelt in front of her, holding her hands and reassured her, “You look lovely. You are so beautiful.”
To my surprise, she retorted, “No, I don’t! Stop calling me perfect when my body doesn’t work right. I hate that I have to wear diapers to bed every night and still wake up wet! Stop saying I’m perfect!”
As I held her through her tears, I allowed her to express her pent-up frustration. Once she calmed down, she decided to change into her favorite blue dress. I wanted to engage her in a deeper conversation about her feelings, but I hesitated, unsure of how to approach it.
Had I been wrong to treat her as “normally” as possible all those years? Should I have discussed her condition more openly, sharing that I too felt sadness and anger about her situation? Should I have expressed my fears for her future, worried she might struggle to find someone who loves her unconditionally? The reality of her condition, and knowing it would never change, weighs heavily on my heart.
While I cannot change her circumstances, I can create space for her feelings. When I asked about her thoughts on her situation, she candidly shared, “I hate it! I don’t want to be different. It’s embarrassing when I have an accident, and I have to change clothes in public.”
I validated her feelings, saying, “Yes, it’s awful. I understand. It is what it is, but I wish it were different too. By the way, I also wish my thighs were smaller.”
She chuckled, surprised to learn that I also have insecurities. Although dealing with jiggly thighs pales in comparison to her challenges, I realized as a parent of a child with a hidden disability, it’s crucial to foster a positive body image while also addressing and discussing imperfections. Ignoring these realities won’t benefit her.
In conclusion, the journey of parenting a child with a hidden disability has taught me the importance of honesty about imperfections. Acknowledging our flaws can pave the way for open dialogues, fostering resilience and self-acceptance in our children. For those looking for more insights on related topics, consider exploring this post on hidden disabilities or checking out resources on IVF. Also, for those interested in at-home insemination solutions, CryoBaby offers valuable information.