Getting stronger

Six years ago… she needed to be harnessed onto the treadmill to be able to walk. She was having dozens of seizure-like episodes daily. She lost her appetite/ability to eat. Everything deteriorated. I couldn’t dare articulate this back then, but I wasn’t sure she’d survive. I wasn’t sure I’d survive.


The recovery was slow. She weighed 40 pounds for almost 4 years. I didn’t know if she’d grow again.


Now we are in a place where she keeps growing out of her clothes. It’s always the last thing I think of – that she’s grown. I was blaming the clothes dryer for a while but then remembered that kids grow. Kids should grow.


Earlier this week in physical therapy, Lily did 10 minutes on the treadmill at speed 3. A far cry from where she was six years ago.

There is so much people take for granted but I marvel at every pound gained. Every new skill attained.


This is Rett Syndrome.

5 thoughts on “Getting stronger

  1. Six years ago! I had no idea poor Lily was in such a state. Thanks to your hard work and Lily’s she’s thriving! You can see her determination and pride. God bless this beautiful child. You should be proud.

  2. Happy Birthday Lili!!! So happy to see your post! You both have been on my mind this week!! Lili looks wonderful and happy!!! Hugs and Kisses….

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