Tag Archives: Regression Rett syndrome

Then and now

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A dear friend recently forwarded the first picture of Lily. This must have been her very first hospital stay when she was 2… It was such a scary time. Lily had recently started losing her speech and motor function (what did that feel like for her?). On top of that, her dad was suing me for custody, I had a demanding job, and the kitchen floor in our apartment literally caved in. My stomach still hurts just thinking about that time in our lives.

Photo 2 was taken yesterday—my 15-year-old on her way to a Coachella-like music festival at school. Lily no longer speaks with words, but wow, she is an amazing communicator, whether using her TobiiDynavox or her body language. Her motor function is still significantly compromised, but she is fierce, funny, loving, and so very cool. Her dad is now MIA, while I am (for all intents and purposes) a stay-at-home mom living in the coziest house with an amazing husband and stepdad.


Life is not easy. Almost every day includes a medical scare, and over a decade of worry has taken its toll on my body and mind. But damn, life is just beautiful. I have an incredible, tenacious teenager, a loving husband and a community of friends—many of whom are on a similar journey—who have supported us on this path. Maybe I should stop worrying so much about the future and remember that life has a way of working out.

Rett Syndrome and a pandemic don’t mix together well

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I know that everyone can say that the last 12+ months have been a roller coaster. For us parents of kids with complex medical conditions, we were already on a roller coaster so life just got crazier and more intense.

That’s why you’ve not heard from me in a while.

Yesterday is a good example of the roller coaster of our lives. It started out with a semi-urgent scheduled appointment with Lily’s Rett specialist. And ended with a jam session (courtesy of Stephen) dance party/giggle fest. In between, we went to the botanical gardens to decompress from the hospital visit which has become somewhat of a family tradition.

So let me backtrack. There’s a lot that’s been going on with Lily. Some of it good. Some of it not so good.

The good: she’s gained 10 pounds, grew a few inches and is progressing well at school (even in a fully virtual environment).

The not so good: during her growth spurt, her feet didn’t grow right which has been impacting her ability to walk, she’s having zone-outs that are looking more and more like seizures and she’s become very temperamental.

Hence the appointment with the Rett specialist.

A lot came out of that appointment that I’m still trying to wrap my head around. Lots of recommendations were made. And with the help of Stephen and the doctor, we’ve prioritized the to-do list. Here are the headlines:

1. We will need to admit Lily for a 3-5+ day EEG to see if she’s having seizures.

2. Lily will be getting Botox treatments for her feet. The AFO’s (i.e., leg braces) which we got about a month ago to help with her gait and foot deformities aren’t doing enough. Adding Botox will hopefully assist in the mending process.

I’m overwhelmed. I’m heartbroken. But at the same time, I couldn’t be prouder of this person who is turning into a beautiful young lady, inside and out.

Struggling

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I am not going to sugarcoat what’s been going on. Lily is having an extremely difficult time doing things she used to do effortlessly like sitting up on her elbows, standing, walking, breathing.

I’ve been busy trying to procure additional help at home – whether it’s friends or family stopping by in the evenings or hiring a morning aide to come and help us get out the door. We just got approved through Medicaid for a home health aid to be with us 24/7 but there are still numerous steps to actually get that support into place. It still may be a matter of months until this service kicks in.

We are navigating through a new, terrifying TEMPORARY time. Through it all, this kid amazes me with her determination, grace and beauty. She is my hero.

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