It has been a few years since Queen Esther, my lovely daughter, was diagnosed with Rett Syndrome. I’m just now at a place where I want to share more of her life and what a life she leads! While Rett Syndrome has stolen so much of her control over her body, The Queen is SMART. She loves people and adventure.
Rett Syndrome is caused by a random mutation on the MECP2 gene on the X chromosome shortly after conception. There is no known reason why this mutation occurs, but it can’t be prevented and currently there is no cure. This mutation affects the MECP2 protein which is present in all cells and helps the mind signal to the body. This mutation impacts fine and gross motor skills, speech, muscle coordination and tone, and general developmental skills. Boys and girls with this syndrome often understand everything people say to them, but the absence of the MECP2 protein keeps them from being able to vocalize or sign their responses. Their eyes often communicate what their bodies cannot.
The Quiet Queen has slowly gained control over her hands. We have this cool electric ball thing motivates her to lift her arm and touch it, which was impossible for her to do a few years ago. Today, I got a video of her and her sister playing. You can see a glimpse of how she uses her fingers to play with some jewelry.
In this picture above, Esther is playing with her “lap doggy”. She loves stroking his head and I’m sure he loves it too!
I was the guest storyteller for an improv show at Alchemy Comedy Theater where I shared stories about our Quiet Queen and a team of improvisers performed scenes inspired by these stories. This is an enormously talented group of people who perform live comedy shows every week and they really honored our Queen with their hilarious, witty scenes.
We finally have the video of the show up for anyone to view! The first half is on YouTube and I have the second half added here, as well.
This was such a hilarious way to honor our Quiet Queen. Again, the stories I told were about Esther’s achievements, struggles, and overarching sweetness. The improvisers performed scenes inspired by those stories. Please share these videos as a way for others to learn about Esther and just to laugh.
We all know the Queen is amazing, but she has been doing so much lately that continues to excite us and add to our hope for the future. Last night, Isaac came running down the hall to say that Esther said “Uh yeah!” when he asked if he could sleep with her in her room.
Tonight, she said the same when I asked if she was ready for yummy food, and then proceeded to eat a pound of Grandma B’s amaaaazing pizza (or “Grandma Bizza” as I’ve just coined it).
Yesterday, her occupational therapist, Wilma, said they had the best session yet. Normally, Esther hates sitting cross-legged and leaning forward, and will shake and resist the position. Yesterday, she sat like that ON HER OWN for 20 MINUTES. Wilma was laughing and saying this was her Christmas present. Seriously, the Queen has HATED sitting like that and yesterday was just like, “Yeah, what of it?” Actually, she was smiling and laughing because she knew she was amazing us.
And she’s sitting up longer and straighter. She has been sitting for maybe a minute before laying on her back, but now consistently sits straighter and more “solidly”.
She’s also sharing more stories. We just don’t know the words she’s using, but she’s saying so many more sounds that clearly mean something to her. Last night when she made some of these sounds I told her, “This is it, isn’t it? You’re showing us more of yourself and are going to keep amazing us.” She smiled and laughed and I’m convinced knows that things are shifting inside of her so that she can finally break free in some ways.
That’s not to say that she’s going to be healed from Rett Syndrome or that anything is going to magically “correct itself”. I just know that great things are coming. That great things are HERE.
I wrote Esther a book for Christmas, full of her favorite things. It’s about a queen who loves the color green, silly names, elephants, music, traveling…and who also has Rett Syndrome. I love that there are so many great kid’s books about disability but wanted to make one that isn’t solely focused on the disability itself. I also wanted to make it fun and silly, which so many of these books forget to include.
Summary: The Green Queen goes on a creative, colorful journey to find a best friend for Sir Baron Worthingtoots, the grumpiest boy in all of Rainbowsbourgh! While the Green Queen can’t talk, walk, or use her hands well, that doesn’t stop her from a great adventure.
The illustrations are done by my daughter’s friends. Any profit I make from this will go to Rett Syndrome research.
lf you do buy a copy, please leave a review and share the link to try to help raise awareness of Rett Syndrome. It’s a short, but sweet story and has some information in the back about RS.