Our Alopecia Journey: From Diagnosis to Acceptance

My memories of Maddie’s diagnosis are a series of events blurred together like a documentary: First, I am brushing my five-year-old Maddie’s hair, and it is becoming harder and harder to cover her widening part; I flip her part from one side to the other, but either way it is still obvious that her hair is thinning. Fast forward a few days, I make an appointment with a pediatric dermatologist in Hershey and immediately burst into tears on the phone. I am baffled by my emotion. I myself have alopecia areata; I get coin-sized bald spots from time to time, but it’s never been a terribly intrusive condition. Later, I realize this must be what they call mother’s intuition. A few weeks later I take Maddie to see Dr. Miller in Hershey. The nurse gives me pamphlets about alopecia that depict people with absolutely no hair. I am appalled. Why would I need these brochures? Maddie isn’t going to lose all of her hair. In hindsight, it’s as if my intuition knew what my mind could not comprehend: This is going to get a lot worse.

About two months later, Jeff and I take Maddie to see Dr. Miller for the second time. Her hair loss has progressed, and she is now missing over 50 percent of her hair. I will never forget two things Dr. Miller tells us this day. First, he explains that Maddie’s case has gotten progressively worse, and this is not a good sign; she will probably continue to lose more hair. Then he tells us that having both of her parents come to the appointmentis a very good sign; she has supportive parents and we will get her through this.

Jeff always talks about the drive home from Hershey that day. That’s where his memory of this journey begins. We drove for a few minutes in silence unsure of what to say as our five year old, seemingly unaffected, played with toys in the back seat. When Jeff realized I was crying, he, the more emotional of the two of us, had to pull over. Maddie’s future or lack-thereof flashed before our eyes as we wondered whether or not she would have friends, do well in school, fall in love, get married, or to the contrary if she would live with us forever never reaching her full potential. Once we’d shared every negative thought imaginable (whispering of course), Maddie looked up from her toys and asked, “Why are you guys crying?”

I would like to say that from that moment on, we were strong and brave for Maddie’s sake, but it wasn’t until a few weeks later, when I got choked up at a school event, that a friend told me what I needed to hear, “I know you’re upset, and rightfully so. But you really need to suck it up when Maddie is around. You don’t want her to see you cry.” I may not have been ready to hear it at that moment, but that was the best advice anyone has ever given me, and eight years later I replay her voice in my mind sometimes, and even offer her same advice to others with newly diagnosed children.

For weeks Jeff and I had been buying Maddie bandanas, hats, scarves, anything to cover up her baldness. We thought we were doing this for Maddie so she wouldn’t have to deal with the pointing and stares and the comments, but in retrospect, we were also doing it for ourselves. When Maddie had her head covered, we could go on with our lives almost as if everything was fine. Like a band aid, the hats and bandanas covered Maddie’s baldness so we didn’t have to think about it or deal with it.

One night, Maddie’s babysitter told us that Maddie had worn her hat to bed. It wasn’t a particularly cold night, and I began to wonder if we were sending Maddie the wrong signal. Were we making her think that there was something to be embarrassed about, something to hide?

A few days after my friend’s comment, Maddie came home from school with a concern. The next day was the kindergarten’s Thanksgiving play, and Maddie was a Native American Indian. She had to wear an Indian headdress and worried how it would look to wear her usual bandana under her headdress. I was about to say, “Why don’t I call Mrs. O and see if she can switch you to a pilgrim?” when Jeff interjected, “Why don’t you just not wear the bandana?”

I thought he was crazy and insensitive, but feeling the importance of the moment I didn’t interrupt. Maddie didn’t need much persuasion, and when Jeff offered to go into her classroom and talk to the kids about alopecia, Maddie quickly obliged. It was as if she had wanted this all along. The next day Jeff spoke to the kindergarten class, explaining that having alopecia is like having a booboo and that Maddie’s body thinks her hair is a booboo so it mistakenly fights it and causes it to fall out. When Jeff was finished talking and Maddie took off her bandana, the kids were more interested in showing Maddie’s Daddy their booboos than in looking at Maddie’s balding head. The Thanksgiving Play went off without a hitch, Maddie was a Native American Indian, and from that day forward Maddie opted not to wear her bandana to school or anywhere else.

Making the decision to encourage Maddie not to wear her bandana to school that day and to ultimately let her decide how she wanted to handle her increasing baldness changed Maddie’s life forever. Maddie’s baldness is an afterthought, something you tend to forget when in her presence.

Of course as a mom, I continue to worry about her. When Maddie was in third grade, I asked her teacher how she was doing in class, how she was handling everything. She looked at me as if she didn’t know what I was talking about, and when I mentioned alopecia, she said, “I honestly forget she is bald sometimes.”

Today Maddie is a 14 year old girl who just started high school. She is smart, beautiful, popular at school, and most of all she is happy. She plays tennis and dreams of being a fashion designer or stylist some day. Oh, and she is completely bald.

Jon Pacific
Jon Pacific