I know it’s going to seem like I’m trying to catch lightning in a bottle again. And, I am. And yes, we’re aiming high, here. But, anything worth having is worth asking for. For Maggie, everything is worth fighting for. Continue Reading
Bubble Burst
Everything that Maggie wants to do is hard for her. It takes an immense amount of concentration and practice in order for her to accomplish even the most mundane of tasks. She didn’t spontaneously start jumping on a trampoline. I Continue Reading
Coping with anxiety in crowds
We try to do typical things with Maggie whenever we can. It’s important to give her the same kinds of experiences that typical kids would have. She deserves no less. That said, we are always nervous about putting her into Continue Reading
#TakeThatRett
https://youtu.be/atAEaJ0FH3w I see #takethatrett as a rallying cry every now and again. When someone’s daughter takes a few steps, when they say a few words, when they climb a few stairs. It’s wonderful to see girls pushing through the hardship Continue Reading
The next steps
We looked into all of the medical interventions there were to help understand why suddenly her balance went away and her hyperventilation became uncontrollable. We couldn’t find anything. But, my optimism forces me to believe there’s always a solution. So Continue Reading
Looking for answers
https://youtu.be/c2DOAFYv-J4 Thank you to everyone who has reached out or left a comment or sent a note. We appreciate hearing the words of encouragement. These last few weeks have been difficult watching Maggie struggle as she has. But we’re fighters Continue Reading
Is it starting to go?
They tell me that Rett Syndrome is progressive. They tell me it’s inconsistent. They tell me it might get worse, but it might not. She might have seizures, she might not. She might need a wheelchair she might not. The Continue Reading
Maggie’s Response to the Chan Zuckerberg Institue
Thanks so much to the Huffington Post for sharing our story. http://www.huffingtonpost.com/entry/dad-fights-for-cure-for-his-daughters-disorder-in-emotional-video_us_573b5ac5e4b0646cbeeb08cc? Maggie and I made a video to thank Mark Zuckerberg for responding. We will try to keep dialogue open with the Chan Zuckerberg Institute, but now we will Continue Reading
An open letter to Mark Zuckerberg and the Chan Zuckerberg Initiative
Dear Mark and Priscilla, It feels odd to be writing to you in this way. Then again, I can’t imagine a better forum to connect with you then the one you dreamed up in your room when you were in Continue Reading
How to teach reading
As I sit here on the eve of her IEP meeting, combing through notes, preparing to fight, I’m reminded about what the fight is about. Maggie is smart. She understands everything. But the school system tests using motor skills and Continue Reading
