I don’t think anyone expects to shave a 5 month old baby’s head. It’s not on the list of ‘new mom’ tasks. Feed, wash, burp, change diapers…shave head. But I took Emmy to my hairdresser in April 2006 and quietly cried as she shaved what was left of the glossy black hair Em was born with. We had absolutely no idea why our sweet girl was pulling her hair out, but several times every day day we would find her baby fists full of hair. Her tiny head, covered in patches of stubble, and wisps of dark hair. She looked like a lunatic monk. We read that there are certain cultures where babies are routinely shaved to cultivate a thicker, fuller head of hair so we said ‘okay, why not?’
She sure did look a funny kind of cute with her new ‘do’ and it grew back as blond as her Norwegian cousins. We didn’t forget the feelings we’d had, but we moved on. Her hair came back and we didn’t really think about the shave except to tell it as a story of what a magically unusual child she was.
Then, 2 years later she was diagnosed with Rett, and within a month she started to pull her hair out again. This time, each handful felt like a knife in my heart. I begged her to stop. I held her hands and pleaded with her to stop. But once again, her fists were full of shiny stands of femininity. This time we cut it short enough that her fingers couldn’t complete the twine-ing action she needed to get a good grip. Once again it grew back, but a year later she pulled it out again. Girls with Rett do this sometimes, pull their hair out. I don’t know why exactly, but I can imagine.
Rett syndrome is a thief. A bold, brazen, bullying thief. It doesn’t steal under cover of night, it steals while looking you in the face. It mocks you as it takes the most precious things. It steals these things from your child. If someone came to your little girl in the playground and stole her toys, you’d be angry. If they stole while looking right at you, taking toys, and shoes, and coats and food…you would be enraged. Rett takes your child’s laughter. Rett takes their words. It takes their achievements, mobility, focus, security and health. It takes their safety. It takes their future. And you, well….you’re powerless to stop it. You are literally powerless to do one single damn thing. It’s like being tied up in that playground as your child screams and cries…it’s worse.
Then someone tells you that there might be a way to catch that thief. And you would do anything.
Treatments for Rett are a very real possibility. They aren’t some hope we whisper to help us sleep, they are real. Potential treatments are in clinical trials, now. And I would do anything to move that along. To (as we say at Rettsyndrome.org & curerett.org) accelerate research & empower families. Anything.
Emlyn lost so many things, and only the smallest of those is her hair. I can’t lose the things she lost. I would take each of those loses and make them my own if it meant she could have them back. I would swap places with her in a heartbeat, giving her my future and my potential. But I can’t. As small and insignificant a thing as this is, I can give up my hair. I can take something from myself and by doing so, I can try to give something to her. It’s not just hair. Rett stole her confidence. You can call it vanity but my confidence will be diminished with no hair. I will feel vulnerable. I will feel naked. When I take Emmy out in her wheelchair, people stare at her. I might get a taste of what that feels like. It will be nothing like what she lives with, I’m not even ruffling the surface of the water she swims in…but it’s something.
Tomorrow night at 9pm I’ll close my eyes & I’ll picture her face. I’ll make an emotional leap & think ‘okay, why not?’, and when the razor starts my heart will shout ‘GERONIMO!’ and I’ll hope she feels my love.