Last school year when our daughter Quinn was smack dab in the middle of middle school she started exhibiting a lot of anxiety. She’s come by the anxiety honestly because she’s been raised with a chronic, ongoing, life-threatening condition. She and her brother have ARPKD (or Autosomal Recessive Polycystic Kidney Disease) and have both had kidney transplants. They will need liver transplants sometime in their future. They share a vision disorder and educational challenges for which they attended a great, small school where they are thriving, even if the smallness upsets our daughter sometimes. Then she has added skin issues and well, there’s a lot she deals with emotionally.
See? A lot of reasons for anxiety.
Her anxiety manifested itself into hair pulling, or Trichotillomania, which is a compulsive disorder and from what I have read and her dermatologist says, is hard to kick. Her teacher noticed it about the day after I did. It wasn’t obvious because she has skin issues and is often itchy and scratching. She said the hair pulling made her “feel better.” I told her it probably gave her something else to focus on, which was completely understandable.
It’s been rough. We sort of got it under control at the end of the school year and the two large patches were filling in quiet nicely. We got a haircut she liked and easily styled over the spots of new hair growth. Last week I noticed her pulling again. She cried, felt shame, said, “I’m so ugly, everything about me is ugly!” My husband and I told her she wasn’t, she didn’t believe it and when we further tried to combat her screams of, “It’s all my fault!” I could only cry along with her and comfort her. It was all I had.
As things settled down over the next couple of days we revisited something we’ve talked about before and something her dermatologist brought up at her last appointment. Some people with this condition shave their heads in order to “start over.” Quinn decided she wanted to do it. She wanted to start fresh. She was tired of crying about it and being depressed because of it. So she took control of it.
When she decided to do it she didn’t want to wait. So one day last week as soon as the wig shops opened she wanted to go. She wanted to get a wig, get her head shaved and be done. It was a way for her to “move on,” she said. The pictures and videos in this represent an hour in her life.
I have to say, she did move on. I’ve not seen her as happy as I did the moment her hair was all gone in a very long time. There were no tears. There were no moments of pain of the hair being shaved off. There was relief and joy, contentment and most importantly, power.
Why do I say power? She has so little power with her disease progression and treatments I think it’s important for her to make choices she thinks will help her when possible. She’s thirteen and has had to deal with more than most adults. She made the choice, proudly might I add, to announce it on Instragram and told me I could blog about it without any prompting from me.
Remember when you were 13 and your looks were everything? Besides loving her and doing all I can to help her be a confident person in today’s world, I can’t really imagine what she is going through. I can only try to support her in the best ways I know how and keep searching for more.
Shave your hair by choice? Go bald sometimes, where a wig sometimes, have people think you have cancer and not even care? Yes to all of that. She is by far, the most amazing girl I’ve ever known.
NOTES: Blogged with permission and encouragement from Quinn, so no nasty emails, please. Also, the music in the video was selected because Quinn loves heavy metal and rock music. The music is royalty free from Kevin MacLeod.
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Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.