I want to raise my son to be proud and bold, and amazing and strong. And sometimes I fear that he will have a hard time — I know he will. And, because of his alopecia universalis, I worry. What can I do to help him?
Millie, Montreal, Canada
(I wrote this when Maddie was 9!)
Sounds like you’re on the same page with us at CAP in focusing on your son’s self-esteem, more than a cure or treatments. I can tell you’re on the right track! My daughter is 9 and has au too. She’s had it since kindergarten and has only had regrowth once (in first grade). I worry about her too, but over the years I have found that by focusing on her self-esteem and making sure she feels “normal” (Who’s really normal?), she is really turning into a neat kid who doesn’t let her alopecia get her down. She has her days of course, but who doesn’t, and those “days” aren’t usually related to her alopecia. We treat her just like our other 3 daughters, and she is busy with sports and other activities. It wasn’t always this easy though. In the beginning my husband and I cried (sometimes in front of her). We bought her hats and bandanas, her grandmom knit her hats — we just wanted to “cover it up” but then we realized that we were making her feel like something was wrong with her. Now she walks around “bald as a bean.” She has a wig, but she tells people it is “just an accessory” and it truly is: she wears it when she feels like it. So, my point is that this whole alopecia thing is a process, and it sounds like you are on the right track.
Today, Maddie is 14, and I am amazed at how much of what I said 5 years ago is still as true as ever. Maddie is brave and strong, and now that she is in high school, our “process” of raising a child with alopecia continues. Maddie still has good days and bad days, but her bad days are rarely about having alopecia and usually about having too much homework or not enough free time or about her sisters getting on her nerves. The process will continue when she starts college and so on and so on. But we just keep taking it one day, one month, one year at a time, just like we do with our other children, just like you do with your CAP Kid and other children. “Keep calm and carry on…..”
Betsy, Executive Director, CAP