Knowing Brings Relief

It’s been a full month since my last post. Life has been busy, it’s true. But I also couldn’t quite grasp a firm topic to discuss. Sure, lots of news stories have come and gone in that time, but they’ve been talked about so much, and I felt that I wouldn’t be able to bring anything new to the table. So I put off writing for another day. Today is that day, I suppose. It’s quiet now (relatively). With Anna and Damien both sleeping, and Leah occupied with watching a movie, I have free hands and a little room in my brain to formulate a new post.

I suppose I should simply discuss the only thing that seems worth discussing right now.

Last Thursday, Anna received an official, on-paper, clinical diagnosis of Rett Syndrome.

According to websites and parent forums, it’s typical for parents to be grieved after the diagnosis. But I’ll be honest–I’m relieved.

To be clear, I’m not relieved at the prognosis. The possibility of her losing the ability to walk, to eat, to use her hands… The likelihood that we may never hear her speak a single word… Those are not things that bring relief. But it’s the knowing.

There’s a part of the book, “One Thousand Gifts” by Ann Voskamp (one of my new favorites!), where Ann and her husband are facing a mysterious illness in their pigs. It sums up beautifully how I feel about this diagnosis:

I point to the screen, to that name too long to pronounce. “If that’s really what’s going on out in the barn, are you OK?”
I can feel his relief, the way it drains into me.
“Yes… and no. I don’t like what it is, or that it looks like it’s nearly impossible to eradicate, but you know what?”
I turn to find his eyes, the way he and I meet, touch. His hands around me tighten, us melded in hope.
“I’m strangely happy.”
It’s true. No furrow plows across his brow. His maritime eyes lay calm.
“God’s good. Just naming it… Just naming it. When you don’t have the name for something, you’re haunted by shadows. It ages you.”
I press my lined forehead onto his.
“But when you can name something…”

We’ve “known” for a while that it was Rett. After the doctor mentioned it at an appointment in January, I did some research online and every description I found looked like a perfect descriptor for Anna. At first I did grieve. The future was too heavy to imagine. With “just” autism, there is some hope for improvement. But with Rett, there is only decline. Things do not get easier; they get much, much harder.

As time went on–as we waited for blood test results and had more testing done (one of which was an EEG in which we discovered she was having seizures, so now she is on anti-seizure medication–and has been improving in connection and awareness since then!)–the diagnosis of Rett was no longer a “possibility”, but a fact. Before long, we couldn’t see anything but Rett in her. And so it was a slow process, four months long before we actually received the diagnosis, which allowed us to drink it in slowly.

While it was yet undiagnosed, we were able to hold onto that last bit of hope that maybe it wasn’t Rett–maybe it was just severe autism. And who would’ve thought that severe autism would be the less debilitating condition? I never would’ve imagined saying such a thing. But it’s true. There is more wide-spread knowledge of autism, even severe and low-functioning autism. There are more community supports, more parents who can relate, more resources available. But Rett? Not so much.

Still, just knowing is a relief. Having that name to look at, to research, to champion for, to share with others; having a more specific course of action laid out, despite the numerous possibilities and wide range of outcomes within that singular diagnosis.

But now we know what to expect. Sometimes losing hope gives another kind of comfort. Giving up the anxiety of “Will she ever be potty trained?” and exchanging it for, “I’m glad she’s still eating solid food.” Giving up all notions of a “normal” future will allow us to focus on the here-and-now; to rejoice in the smaller accomplishments, because now those small things, are really very big. Rather than grieving her lack of words, I can be even more excited when she uses other means to connect–her eyes, her cuddles, her vocalizations. Now that we have been warned what the future may hold, we can enter into it more gracefully, and slow down to enjoy each moment leading up to those harder things.

Learning about Rett will be a whole new journey. I have a 500+ page handbook on the subject, given to us by the Rett specialist who confirmed her diagnosis. I’ve barely started; it’s not the type of book you rush through. It has such a wide range of information–scientific studies, histories, personal stories, advice from experts–everything you can imagine on the subject. And I’m determined to learn everything I can about it, so I can help Anna as much as I possibly can.

I may have actually run out of words on that subject for now. I’m sure it will be revisited time and again in the future. It’s our new life, now, after all.

Below, I’m going to list my favorite websites for Rett Syndrome. I encourage you to check them out and learn a bit about the condition. Most people aren’t aware it even exists, so you’ll be ahead of the game. And the more people who know, the more support and understanding we’ll gain from the community at large.

http://www.rettsyndrome.org

http://www.curerett.org

http://www.girlpower2cure.org

http://www.nwrettsyndrome.org

http://www.graceforrett.com

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1 Comment

  1. Diane Magnan said,

    May 2, 2014 at 4:35 pm

    Yah Grace…it’s been a journey, with much more to come! I had not seen the website for Grace Forrett before. They are finding that Rett girls can be trained to use the computer with their eyes and that they have the same abilities as their “normal” counterparts. It would be great to find out how to train Anna (and thus train yourself) on how to use her eyes to spell words and do math and everything else that we use our hands and voices for! It’s such a mix of sad and exciting, isn’t it? It would be wonderful to have a conversation with Anna!

    Love ya, and we’re here for you!


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