My daughter started to lose all her hair and goes bald due to alopecia when she was 3. It was heartbreaking to witness her struggle, but I’m determined to do all in my power to help her develop a healthy sense of self-worth as she grows older.
My 3-year-old daughter, Gwen, had some of her eyebrows missing when we were on vacation last year, so I took a closer look. It seemed to me as we swam and played in the water that she was trying to imitate her elder sister by fumbling with her goggles and pulling them on and off her little face. I didn’t think too much about it because it appeared to be entertaining, so I didn’t give it much thought.
It was the same vacation pool a year later, and I caught a glimpse of Gwen’s slick, hairless body as she sucked for air and then wriggled away once more. Eyelashes and eyebrows had faded from her face, leaving her eyes unprotected. She wasn’t bothered. A big sea snake was stalking her like an evil unicorn, and she was doing her best to keep up with it. I couldn’t bother her because she was too preoccupied.
Gwen has alopecia, an autoimmune illness in which her immune system destroys her hair follicles, causing her to lose her hair. Alopecia areata, the most common type, causes splotchy hair loss that can come and go. Gwen suffers from alopecia universalis, which means she has lost all her hair.
The rate at which I was losing my hair was startling. Gwen’s scalp hair began to fall out in circular sections after a few months of losing her eyebrows, which immediately led to her diagnosis. A spotty hair loss with regrowth was what we expected.
It didn’t take long for us to come to terms with the fact that she would eventually go bald. We discussed it with Gwen, letting her know what was coming. We handed over command to her. A sunny March afternoon saw us gathered on the back deck as a family to support her as daddy shaved off the remaining hair. Nothing came back.
The hair on her arms, legs, nostrils, and eyelashes fell out over the next three months. In our quest to get the perfect hairstyle, we tend to overlook the many purposes that our hair serves. When Gwen kept wiping her nose, her nose hairs fell out, and her upper lip became infected. Headbands kept the sweat out of her eyes, while a headwrap shielded her from a riding helmet’s glare. We fought all summer long over whether she should wear a hat to cover her bald head or just apply sunscreen.
She was diagnosed on the first day of the week. I cried for her future adolescent self and the baldness I had caused her. My husband comforted me by reminding me of the crucial things: she’s healthy; it’s just hair; and when she’s ready, there are wigs and makeup and hair replacements. He was on the money. But it was nonetheless a little unnerving to see my daughter’s head without her trademark pigtails.
After then, I came to terms with the fact that there was no remedy. There had been two weeks of living with a bald child, three months since the diagnosis, and the conclusion of a week spent seeing specialists. Fortunately, we have a variety of medicinal options available. Hair regrowth may be possible, but it will only be a short-term solution.
Furthermore, nothing comes without negative consequences, some of which can be life-threatening. In the aftermath of the incident, I was shaken to the core. Waiting until everyone had gone home from school, I broke down in tears. I planned an eight-hour gardening session on the spur of the moment so that I could pour my heart and soul out in the dirt, rant into the wild blue sky, and utterly exhaust myself. Those were the final words. I was done with it after that day.
As a result of this, I was able to finally let go of my hair-fighting mentality. For the time being, I threw in the towel and refused to take any medications that promised to restore my hair. Everyone has their own unique set of criteria for making decisions.
It’s possible that one of the therapies might have been effective. Possibly, she would not have suffered from such debilitating negative consequences. I choose to skip that section in favor of redoubling my efforts in support of her sense of belonging and community.
Gwen is more than the color of her hair or how she looks. Much more is possible. Moreover, I shall cherish, enjoy, and proudly display all of her. And she’ll grow up in a world where people think she’s amazing because she doesn’t have any hair.
It’s going to have an impact on her in a different way. It’s going to be difficult. Men and women alike are still judged first and foremost by their outward appearance, despite the fact that we live in a beautiful time of “female power”. Everyone says they’re open-minded, and now we can see how they perform in practice.
Shortly after learning of Gwen’s diagnosis, I took to social media to share my thoughts. Sharing our vulnerability before an attack could be launched as a means of gaining some control in a situation where we had no control. As it turned out, talking about Gwen’s hair loss on social media was a wise decision on her part.
Several folks knew someone with alopecia and were able to put me in touch with them. I learned about websites, Facebook groups, and other organizations. Connectivity and educational resources provided with our family continue to benefit us.
Gwen had only recently started school. We sent letters to her instructors, classmates, and school officials before the start of the school year to let them know what to expect. We were treated kindly and supportively once more. We’ve reached the halfway point of our journey.
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