They thought they would teach their daughter about the world Instead they have to teach the world about their daughter
A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures. It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body Continue Reading
IEPs are dumb. That’s the school district process whereby people who have never met Maggie spend 30 minutes with her and evaluate all of the things she can and cannot do and make recommendations about how she’s going to get Continue Reading
The auction I put together ended up raising over $30,000 and the event it was a part of raised over $700k – 96% of that goes directly to fund research. That’s a spectacular number and I’m so honored to be Continue Reading
Traveling is always harder than it needs to be, with more thought than should be required needing to go in to what to bring, how she’ll be comfortable, what will entertain her on the plane, how will we keep her Continue Reading
A clinical trial for Rett Syndrome called us over the weekend to let us know that a spot had opened up for Maggie. She’d be the 30th girl of 30 girls in the trial. Our emotions are all over the place. Continue Reading
We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months. What are we going to do? How will we contribute to Rett Awareness Month? I had grandiose plans, but am Continue Reading
I’ve been trying to get a fundraiser of my own going since we found out about Maggie. The idea started out as a rather large scale collaboration between my old company, Jash, some old friends at Social Media Week, and Continue Reading
Finding a game that Maggie is willing to play has been impossible. I don’t even mean board games – that’s not even something that’s worth trying. Her attention would never hold and her hands wouldn’t let her manipulate any spinner Continue Reading
We traveled to New York for the Labor Day weekend to see my parents and Maggie’s cousins, uncles and aunts for a weekend at my parents house, all under one roof. We did the same thing a few summers ago, and Continue Reading
There has been a lot of stress and anxiousness preparing for Maggie’s first day of school. Ours not hers. We kept telling Maggie that she was going to be going to school and it was going to be fun. She didn’t really care, but how could Continue Reading
