No Clear Point

There’s no clear, tidy message here. Just sharing that the Queen is feeling better after being sick for a couple weeks. While still tired a lot, she’s definitely ready to play and learn!

Her brother was grumpy that I was walking with her in the backyard, saying that it was taking too long and he just wanted me to play with him. I explained that Esther has been sick and hasn’t moved much for a couple weeks so it was good to get her walking. I was sad and a little grumpy myself, since it’s always hard when anyone is sick, especially the Queen.

I felt bad when I set her down to sit it the grass so I could play with Isaac. I always feel bad that she can’t demand her own attention and just run wherever she wants. So it’s somewhat comforting when I catch glimpses like these, of her cherishing her spot in the grass.

A few hours later, Esther clearly said “I love you” to me before bed. I yelled to everyone else what she had said. Isaac came running, SO excited. She wasn’t able to say it again, but Isaac knew she was trying.

Again, there’s no clear point here. The Queen is feeling better and is able to radiate us with some of her looks and even words.

Happy 5th Birthday!

Happy FIFTH birthday to the Queen!

I’m so glad that as you grow, we can know more of who you are. It’s hard, it sucks that you can’t tell us more of your heart, but I DO know that:

You are loved beyond all measure. You are strength and courage and kindness and beauty. Thank you for being YOU.

  • you understand what people say
  • you love your friends and family
  • you like the color green
  • you love peanut butter cups
  • you know your shapes and colors and the main characters in books
  • you love books!
  • you like pretending to be “sassy characters”
  • you love your smart castle (school)
  • you love music and people singing to you
  • you get excited about upcoming trips and Christmas and your birthday!
  • you hate being tired
  • you hate being hungry
  • car drives make you sleepy
  • you’re a good mommy to your dollies
  • you can wave!
  • you love your bed after being away from home for a long time
  • you work so hard, every day, and nothing keeps your smiles or giggles down for long!

These are just a few small things we know about you. We see you, we hear you, we know you, and we love you.

The Queen’s Hands

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!

An Unscripted Education

We all have to learn about the Queen to be able to meet her needs and understand her sweet spirit.

Even though her brother, sister, dad and I are with her every day, we continue to learn and ask questions. Many are hard questions.

I swear the following conversation wasn’t scripted or prompted in any way. I thought it was so sweet how Isaac was helping Esther use his toy. When I started the video this happened…

The Queen’s Music

Over Christmas break the Queen was one active girl! As she learns and grows, she shows us more of her personality.

Here, she is playing music with Grandma B and having a great time. While she adores music, Queen Esther is limited in how she can express her own music.

Her hands don’t always do what she wants them to do but the Queen is getting better at using individual fingers.

Queen Esther’s Improv Show!

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.

Here is the second half of the show:

God bless good comedy!

Great Things Can Happen

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.

Sitting so straight with sister, Lucy.