Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that. 5 is an important year for a lot of reasons. In my family Continue Reading
Maggie is 5
I have so many emotions about Maggie turning 5 today. Excited, sad, amazed, proud, scared and blessed to name a few The years seem to be moving by so quickly and yet also in slow motion. I want the years Continue Reading
The Hope for Hannah and Gaby Gala Auction Site
I’ve spent the last two months, more or less, full time working as the Auction chair for this event. It is the largest fundraiser in the world for Rett Syndrome research and we are very proud to be such a Continue Reading
#Team Magnolia
Rett Syndrome is not an individual sport. It’s a group sport. While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for Continue Reading
I wrote a poem for Rett Syndrome Awareness…
When I look at her I don’t see her arms flapping. I see a little girl trying to fly. When I look at her I don’t see a girl struggling to breathe I see a girl who takes my breath Continue Reading
Symptoms of Rett Syndrome | Share for Awareness
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Continue Reading
Allergies
Rett is an ever changing mystery – and it’s one we’re constantly trying to solve. Any little thing could be a clue to helping her with some of her symptoms. We obsess over it – just trying to do everything Continue Reading
The Chair
She’s been doing so well for so long that I was starting to feel like we had a handle on it and that we weren’t going to need to adapt her life around Rett Syndrome. I was starting to feel Continue Reading
CBS News
After I posted the video of Maggie talking on her Tobii, a reporter from CBS Local News reached out. She was fascinated by the technology, and after we shared our story, she was relieved, as are we, that we could Continue Reading
The End of Summer
Labor day has always signified the end of Summer for me. Though Maggie started school two weeks ago, it’s still Summer to me until Labor day. Looking back on it, I think we did a good job this summer – Continue Reading
