By Paula Quinn
Learn more about Alopecia at the National Alopecia Areata Foundation here.
The first time we noticed a handful of soft brown curls on Rosie’s pink-princess pillow, it was a bright and sunny Saturday morning in October. Rosie was already up and out of bed. She was a proud two-and-a-half year-old excited to help “dress” her new baby sister, like a real-life doll. Maybe she’s stressed about the new baby? we thought. Or allergic to her shampoo? We replaced her shampoo with another brand, but Monday morning brought more of the same—this time with twice as many curls. It was time to call the pediatrician.
Over the phone, the pediatrician assured us it was probably just stress from the new addition to our family, but he offered to see her to ease our minds. We’ll never forget the look on his face when he first saw Rosie waiting on the exam bed, still with her glowing smile. His usual, pleasant chit-chat stopped as he carefully examined her patchy-haired scalp. “I don’t think this is stress,” he finally said, “I think it’s Alopecia. I’m referring you to the best specialist as quickly as possible.” By Thursday, Rosie’s hair was all but gone. The following week, a specialist diagnosed Rosie with Alopecia, an autoimmune disorder wherein the body mistakenly attacks the hair follicle, causing the hair to fall out.
“There is no cure,” the specialist said. Those words are engraved in my mind.
In the following months we relied on hats to shield Rosie from unwanted stares as we held onto hope that her hair loss would be temporary. In the meantime, we sought answers from books, from second (and third) opinions, and genetic testing. We scoured the Internet for miracles, success stories, or a magic bullet that would return those soft brown curls back to Rosie’s smiling face. We were desperate. After trying countless treatments, ointments, creams, steroids, herbal medicines, special diets, and even a lifestyle change designed to reduce stress, nothing worked. Reality set in that this was our “new normal.”
It soon grew harder to convince Rosie to wear a hat everywhere, and the next few months were filled with ups and downs. Parents would shush their children in our presence to counteract the “Shhh—don’t stare,” “Stop pointing. It’s not polite” while grocery shopping or waiting in line at Starbucks. When Rosie asked why they were pointing, we’d explain they were simply curious, all the while whisking her away from the pointers with a pit in our stomach.
Over time, the unwanted attention began to seem natural. We stopped retreating from the stares and decided to embrace it. We were surprised the first time a stranger reached out in sympathy about our child’s cancer, but we soon honed our response, “Thankfully our little girl is very healthy. She has an auto-immune condition called Alopecia which makes her bald.”
When people—usually children—asked Rosie about her hair, Rosie would instantly give them creative, witty answers: “My hair is on vacation.” Sometimes she’d say, “My hair is just taking a break, it might come back soon.” Other days she’d get right to the point, “I’m just bald and I have Alopecia.”
It wasn’t all sunshine and roses. One particular type of public comment bothered Rosie more than any other; “Hey little guy, how are you today?” or, “Great scootering, buddy!” She’d frown and tell people she wasn’t a boy, and usually she’d be too annoyed to explain further. She began to ask, “Why do they think I’m a boy, I’m wearing pink? Boys don’t wear pink!” Of all the answers we’d had to provide, this one was the toughest. By the end of the discussion, we found ourselves explaining to our teary-eyed Rosie that sometimes things happen to us that we can’t control.
That night, after Rosie fell asleep, we decided to focus on controlling what we could about her diagnosis—Rosie’s emotional development and self-esteem—and leave behind the unfairness stance. Instead of focusing on fixing her baldness, we shifted our approach to raising a little girl who loves herself unconditionally, hair or no hair.
We came up with some friendly rules of engagement and dubbed them “Operation SPIRIT.” In the moment, after seeing a child point, stare, or even ask innocently “why is she bald?” Rosie has learned to do the following:
Smile—smile and wave hello
Pride —show pride
Introduce— introduce herself
Raise Awareness—share her Alopecia story
Inquire—ask what makes them unique
Thankful—be thankful for sharing their story
These days, if you happen to look in our direction, you’ll see a beautiful little bald girl who makes up in confidence for what she lacks in hair.