It’s amazing how much about Rett Syndrome I can forget when Maggie’s in a giggly mood. Her laugh is literal music to my ears and it washes away all of the stress and pain of Rett Syndrome. Knowing that she’s Continue Reading
Diagnosis Anniversary
The anniversary of Maggie’s diagnosis was three weeks ago. I had been reading about other families and how that day is indelibly marked in their minds. Going through the day I didn’t think of it in the same way, in that Continue Reading
Happy New Year
We spent the last week in Texas with Maggie where she, once again, was showered with love and affection from her cousins and Texas family. Always nice to be in such a welcoming environment. We were scheduled to be in Continue Reading
Happy Holidays
In honor of the holidays, I thought I would share Maggie’s holiday program from school. I blurred out the other kids, because people get weird about that. This was a real treat for all of us. We didn’t even know Continue Reading
Art projects
Every time I pick up Maggie from school I inspect her art folder. She has extremely limited use of her hands and she can’t draw or paint at this point. We’re working on it, but she can’t. So, every time Continue Reading
Bike Riding
Maggie can’t pedal a bike – but Jenny’s mission has been to get her to experience bike riding one way or another. There was a scooter she never quite got into. We tried a tricycle that worked for a little Continue Reading
Finding things to be thankful for…
As the holidays roll around I realize it’s almost been a year since we got the diagnosis. We’ve gone through a lot of emotion this year and hardship and change, but still, it’s easy to find things to be thankful Continue Reading
Maggie’s First Seizure
I posted this picture a few weeks ago on Facebook – what felt like a lazy Sunday. This was at 9am. She fell asleep right after this for about two and a half hours. Somewhere in the middle of that nap I Continue Reading
Beauty Marks
Sorry to be overposting this week, but a lot is going on. Our good friends Kate and Joey from Mr. Kate, a lifestyle brand, are just uber creative and smart and savvy and good looking. And they’re launching a new Continue Reading
