Knowledge is power

I remember struggling through the book ‘Orientalism’ by Edward Said when I was in grad school. I think it was one of the very few books I didn’t finish as it was too dense and, truthfully, boring. But what I did get from this tedious, yet paradigm-shifting and acclaimed read is the underlying thesis of his book – knowledge is power.

I agree. Knowledge IS power. But sometimes knowledge sucks.

For example, Rett Syndrome.

Here is some knowledge about Rett Syndrome:

Rett syndrome is a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.

Devastating.

AND…. And yet, there is still hope. Plenty of hope.

Lily’s therapists are amazing and are teaching the both of us how to maximize her potential (which, from an intellectual capacity is limitless) and mitigate her regressions (which is, unfortunately, ongoing – swallowing and hand function continue to be an issue).

From a physical perspective, Lily is growing normally. No slowed head or height growth (her current height puts her 6 months ahead of her actual age). I equate her ‘typical’ physical growth to knowledge. The knowledge to research like hell and talk to cutting-edge nutritionists to learn how to support this kids body which is constantly working against her. Lily takes supplements and vitamins galore – I look like a mixologist when putting together her morning and evening bottles. She eats clean and healthy foods. I stay on top of her constipation (which is a constant battle) to keep her comfortable. She gets PT and OT to ensure that she gets physically stronger every day.

So not all knowledge sucks.

But for Rett Syndrome in general? So much of it is unknown. How it manifests in each girl is different. And how it unfolds over the course of a girl/woman’s lifetime is a complete shot in the dark. There is NO body of knowledge to point to how this will fully impact MY child.

A fellow Rett momma blogger aptly put it this way:

Rett Syndrome is a relentless bully. …It is the type of bully who, just when you think you have fought hard enough to keep it at bay for awhile, sneaks around a corner and kicks you in the face.

I constantly need to be on my toes. On watch. On guard. Researching and reading and watching my kid like a hawk and meeting other parents who are years in to this experience (regardless of the pain their knowledge causes me). It’s a nonstop process.

Lately Lily has been having some pretty major zoning out episodes. They’re not seizures (as per the Rett specialist). They’re just Rett zone-outs, for lack of a better term. And it’s scary to watch. And there’s nothing I can do but hold her hand and talk to her soothingly until she snaps out of it.

Regardless of all the scariness, there is this hope.

I believe that my kid is going to rewrite the Rett books; that she is going to help pave the way for a new way to look at Rett Syndrome. That she will be cured of this horrific disorder and will be able to live a fully independent and symptom-free life.

And in the meantime, I’m just going to keep loving my kid. And reveling in her strength and beauty and joy.

This holiday season, please take a moment to put your life, and the lives of your children, in perspective. Give thanks for ALL the gifts you’ve been given – especially those gifts that you take for granted on a daily basis.

We ALL have so much to be thankful for.

Love,

C and L

All dressed up for her preschool's holiday soiree!

All dressed up for her preschool’s holiday soiree!

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Beaming with pride!

Lily has a new speech therapist at school.  Actually this woman is the head of the speech program and has been working closely with Lily’s therapy team from the start of school but she’s stepped in to teach her directly.  Here is a note from her that I just received earlier:

Hi,

Just wanted to let you know I had my first official therapy session with Lily today and she did very well. Following work on her oral motor skills, I worked on getting Lily to vocalize to express her wants and needs. While she was looking at her Ipad I worked on having her say “help me” following my models when she needed assistance. . At first we worked on just exhalation of the /h/ sound and then added an /mmm/ which she has produced before. By the end of the session after 3 or 4 approximations following my model, Lily sat next to me and independently called out “help me” in an audible voice while I had turned to say something to Ursula during the session. Ursula and I immediately turned toward her and offered her help. She was very pleased with herself to have gained our attention, smiling brightly and was happy when I pushed a button on the Ipad to reset it. I think we are off to an excellent start. I know that Lily has an understanding of many things and we have started the paperwork to get her the augmentative eval with the dept of ed as per our discussion.
Signed,
Lily’s SLP at WOC (translation: speech language pathologist at William O’Connor)
Lily pride