I was a busy lady in October. Ok, I’m always busy. But October was especially crazy as it was Rett Syndrome Awareness Month.
From articles in the NY Daily News to Facebook posts and participating in the Strollathon with my amazing family and friends, I was on a mission to provide a voice for all the girls who don’t have one. Below are some of the clips I wrote in October about this monster of a disorder.
Facebook Post October 1:
Today marks the beginning of Rett Syndrome Awareness Month. I will try to post daily on this topic.
First post is about my Lily, who developed normally, if not a bit advanced, until she was about 14 months old. Then she started regressing.
After almost two years of getting incorrect diagnoses – from autism to a rare form of epilepsy, we finally got an answer as to what was happening to this sweet kid, shortly before her 3rd birthday.
Lily had so many words for a baby. The words are gone now but I know that they will come back.
Facebook post October 4
Don’t ever again take for granted your ability to hold a cup, use a fork, tie your shoes or speak your mind. These are just some of the things Rett Syndrome steals from our girls.
Facebook post October 5
Team Lily – top fundraiser for the NJ event!!! $10,000+ raised by my amazing friends and family. Thank you all for making this day so special for me and Lily.
FB post October 7
Something to keep in mind about parenting Rett Syndrome or any other developmentally diferently-abled sweeties, these kids give us just as much joy, if not MORE joy, than the neuro-typical child. We parents of special needs kids revel in every inchstone they accomplish. We are their cheerleaders, their advocates, their biggest fans. I’m truly amazed – every day – by my sweet little girl. She is so strong, so kind, so smart. It blows me away.
FB post October 11
Girls with Rett Syndrome work HARD. Physical, Occupational, Speech, Behavioral, Augmentative – you name a therapy, Rett girls rock it. Lily goes to an all-day preschool where she receives numerous therapies throughout the day. And as that’s not enough, she has after school therapies from 4-7pm – every day. She’s the hardest working 3 year old I’ve ever met. And she does this all with joy and grace (well, most of the time at least). Here she is below, working with her OT, Lynda…
FB post October 16
Rett syndrome is spectrum disorder – some girls are only mildly affected. But most girls cannot walk, talk or use their hands in a meaningful way. My Lily walks (and even runs), has some language (which comes and goes) and some hand function. I guess you would say her symptoms are on the milder side of the spectrum. But it is still devastating.
FB post October 26
The odds of having a child with Rett Syndrome are 1 in 10,000. The odds were the same for you as they were for me. What does 1 in 10,000 mean? It means a girl with Rett is born every 90 minutes. It means today alone 16 girls with Rett will be born. And most of their parents won’t begin to suspect something is wrong until sometime between April 2015 and April 2016.
Let’s find a cure for this monster.
FB post October 27
Parents and researchers (now) know that most children with Rett Syndrome have greater receptive language (what they hear and understand) than expressive language (spoken language). Parents consistently report that their daughters understand far more than they are able to communicate. They see their girls laugh appropriately at jokes or things which happen to other family members. They see her eyes briefly turn toward something being discussed or a movement in response to a question.
Here are pics of Lily in which she’s telling me – with her eyes – to ‘keep singing Mommy!’ in photo 1. Photo 2 is her ‘saying’, ‘phew, I’m glad you’re singing a song I like.’
FB post October 28
Rett girls know how to keep their parents busy. At last count, Lily currently has 9 different therapists, a one-on-one para-professional (to help her at school) and at least 12 specialist doctors. Tomorrow she is seeing a swallow specialist. Next week she has a follow-up with her neurologist. And the week after is her check in with the Rett specialist. All of this is on top of her daily therapies and school activities
FB post October 30
Every stage of development brings a new set of health issues and concerns for the Rett girl. From loss of hand function and scoliosis to everything (I mean everything) in between, it is a never ending feeling of worry and anxiety for their parents.
Click here to see the 4 stages of Rett. Warning: It is not an easy read, especially if you have children.
For those of you on FaceBook, apologies for the redundancy. For those of you who aren’t, I hope you found this enligtening.
Lastly, here is my pumpkin on Halloween. She may have Rett Syndrome, but Rett Syndrome does NOT have her.