For more than twenty years, I’ve worked as a makeup artist — my job is literally to make women feel beautiful on one of the most important days of their lives. But when my own daughter began to lose her hair, I was at a loss. All of a sudden, I didn’t know how to make her feel beautiful.
It all began one evening when I was putting my then 3-year-old daughter, Sage, to sleep, and I noticed a large patch of hair missing. I didn’t tell her at first. At night when I gave her baths, I’d hide the clumps of hair that came out.
After visiting the doctor, we learned that Sage has alopecia. This occurs when the immune system attacks hair follicles, which creates sudden hair loss. When it was time to explain this to Sage, I bought children’s books about alopecia. (Our favorite is “My Hair Went on Vacation” by Paula Quinn.) We gave her a doll and let her cut all of the doll’s hair off so they looked alike.
At night when I gave her baths, I’d hide the clumps of hair that came out.
Alopecia affects each person differently, and we did not know what Sage’s journey would be like. That unknown has been the most difficult part. As the months progressed, we would wake up and one eyebrow would be gone. The next day, her right eyelashes would be gone. Eventually, she had no hair at all.
Even as I tried to protect Sage and make sure she didn’t feel as though anything was wrong, I was struggling. I felt like someone was taking my beautiful girl’s identity away. I felt defeated. I felt helpless. I mourned the loss of her hair for months. I cried behind closed doors. I stopped taking pictures and videos of my beautiful daughter.
Eventually, I realized that I needed to look at this in a different way. This past summer I decided to go to the National Alopecia Areata Foundation conference with Sage and my mom in Washington, D.C. We met families who were going through the same experience and emotions. I suddenly didn’t feel so alone. Together we built a new community. Seeing girls of all ages being bald, beautiful and confident empowered us to take this experience and turn what I thought was a negative situation into a positive one.
When we returned from the trip, I finally made the decision to share with my social media platform Sage’s diagnosis. I felt a sense of relief, like I could breathe again.
Since Sage she was a little girl, she has loved the spotlight. We have always known that she is meant for greatness. Being on stage or on camera is where she shines. She loves singing and dancing. She is spunky and has more sass than any other kid I’ve ever met. Finally it hit me: None of that had to change. Now I share Sage’s funny videos on social media. She says, “I have alopecia; alopecia doesn’t have me.” It is a part of who she is, but it is not who she is entirely. She exudes confidence, and watching her sing and dance and smile has taught me that beauty truly comes from within. We teach her friends and the kids at school about alopecia. I use the peanut allergy comparison and tell them that, in the same way that some kids are allergic to peanuts, Sage is allergic to her hair.
And yet, she is still a 6-year-old girl. Every day her school calls me about something — someone did or said something that hurt her feelings. Or we’ll be at a restaurant and someone will pay for our meal thinking that she has cancer. My daughter is confident and assertive, but it still hurts. I can’t imagine a child who is more timid or shy than Sage is having to deal with this.
We have highs and we have lows. We have bedtime routines filled with tears. ... But we also have days filled with hope.
We have highs and we have lows. We have bedtime routines filled with tears. We have mornings before school filled with questions of why she can’t wear her hair the same way as other girls do. We have days where she wants to wear a hat and days that she doesn’t. We have days when she wants to wear a wig and days that she doesn’t. We have days where she can’t handle these big emotions for a 6-year-old and she acts out. But we also have days filled with hope — more and more of those, actually, since Sage has discovered an entire community out there of people who also have alopecia.
That’s why it’s so important to share her story — so that other little girls with alopecia can see themselves in Sage, and know that they are not alone. September is National Alopecia Awareness Month, and on Sept. 18, Sage and I will be doing a lemonade stand in Boynton Beach, Florida, to raise funds for the Children’s Alopecia Project, an organization whose goal is to raise awareness and build confidence in kids who have alopecia.
Sage gives me courage every day to be strong and makes me so proud to be her mom. Her smile lights up the room wherever she goes and I know in my heart that she will never let alopecia define her. My husband, Josh, and I remind her every day of the beauty she possesses both on the inside and the outside. And each night, before she closes her eyes, we remind her to go to sleep proud of what makes her different.
We don’t know what Sage’s journey with alopecia will look like in the future, but I do know that my daughter now has the tools — and the confidence — to tackle whatever it is that comes her way.
