Rett Syndrome, Here’s Why You Should Sleep With One Eye Open

By Julie Shaffer

Dear Rett syndrome:

Some days, Rett syndrome, you’re under my thumb. That’s the case less often than I’d like. Most days, you’ve got us up against the wall. I have nothing nice to say about you or to you. I hate you morning, noon and night. When I’m carrying Lucy around, I often feel like I carry an extra entity all of itself that is you — the condition with never-ending reminders of how cruel you really are. Lucy weighs 42 pounds these days, but Rett syndrome, you seem to weigh so, so much more.

I hate the way you’ve stolen Lucy’s voice, the way you hold her breath and arrest her hands. I detest the way you make her legs appear frozen in place and her feet nailed to the floor when she tries to take a step. Every single time I hook her up to her feeding pump so she can get adequate nutrition, I hate you. And I hate you with a white hot passion each time I watch her body flail through a seizure and her eyes fill will terror at what’s happening to her. My resolve to hate you never wavers. My heart never stops breaking, my fears for Lucy’s present and future never subside, and I never let my guard down when it comes to you.

In spite of my hatred, I get up each morning to battle you. My goal: to beat you into submission. The reality: you’re the boss most of the time. But each day as I rise — so does Lucy — and I know without a doubt that she shares the same goal as I do: to conquer you. All day long she tries to let herself out of the prison you’ve created for her. She fights and fights until she’s spent, and then when she regains her strength, she puts up her dukes again.

You might think this is going to be the place in the letter where I say if it hadn’t been for you maybe we wouldn’t have known how strong we could be, and Lucy wouldn’t have learned how brave and amazing she can be, but I’m not going to say that. Never will I say that. We could’ve learned those things in any other more pleasant way. We’re strong, with or without you, and Lucy would’ve been amazing no matter what. Yes, we’ve learned things about ourselves we maybe never knew, but I would give every bit of that knowledge back if it meant freeing Lucy from your oppression.

There are warriors also known as doctors and scientists all throughout the world who are working diligently to try and get rid of you. There are possible treatments in the works, and these warriors believe there will be an actual cure within Lucy’s lifetime, maybe even before she’s an adult. I hope they’re right. To you I will say good riddance and never look back. Perhaps your days are numbered. But what I wonder is, what will Lucy say about you?

image1 (3)Someday, if there is a cure or amazing treatments that keep you at bay, what will Lucy say? I wonder if she will say, “Well, back when I had Rett syndrome…” and then fill in any number of thoughts on what that was like for her. I mean, what if she can say that with her mouth instead of with some alternative means of communication? All of your power over her will be gone, hopefully. And what I wonder is, will she be glad to have known you? If she is freed of your shackles, will she cherish every day of her freedom and be grateful that she’s known life both ways? I don’t know. She might be bitter that part of her life was stolen from her, but she might realize that even throughout your reign of terror, she still lived. She was still Lucy, and her personality still shone through. She learned to communicate and thrive in spite of all of the obstacles you put before her.

I guess what I’m saying is that with or without a cure, no matter how hard you try to destroy Lucy, she will live a valuable and full life. We will make sure of that. And no matter what you throw at us, we will keep fighting you, even though the terror you make us feel will never leaves us. The fear that you will take Lucy from us at any moment could consume me if I let it. But I still have to live with you all day, every day. All of us do, and I guess that makes us brave. We don’t hide from you, and we don’t let others hide either. Even though we fear you, we will never back down or quit trying to beat you.

Rett syndrome, you’re a miserable bully. We all hate you, and you’re not welcome here. We hope to be free of you someday. I hope Lucy can learn to walk and talk and use her hands while you look on in defeat from the sidelines. But for now, we’ll just continue our battle of good versus evil and take our victories as they come. But if I were you, Rett syndrome, I’d sleep with one eye open.

The Shaffers

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