Hi! Its been awhile. Life has been a rollercoaster. This past year we have had the exciting news that two different gene therapy trials have started. YAY! Magnolia is loving middle school. YAY YAY! Gray loves STEM, legos and minecraft. Continue Reading
Words we have been waiting for….
US THEN 2016 , The words we have been waiting for… FDA approves Trofinetide for treatment of RETT SYNDROME! This is big news! This isn’t a Continue Reading
I am happy Magnolia thinks I’m annoying
A week ago, we forgot Magnolia’s eye gaze technology computer at home when we went to visit the grandparents for a night. Unfortunately, we remembered on the drive to their house which is 1.5 hours away. Special needs parenting fail Continue Reading
Surfer girl
A week of surf camp was not enough. What an unexpectedly amazing week we had in Long Beach, NY. Magnolia has always loved surfing, we have been getting adapted surf lessons since she was 6 years old. She is now Continue Reading
Its just a phase….
When Magnolia was 2. doctors would tell me, “It’s just a phase.” No matter what I would bring up to them. Of course with her, it wasn’t just a phase, it was Rett Syndrome. Actually for her it was a Continue Reading
In sickness and in health….preferably health
I am trying to relax, it isn’t easy. On days that I feel good, I often do too much. Last week when I woke up, I felt great. So I did three loads of laundry, went for a walk, did Continue Reading
Rett Syndrome, Cancer and coffee… a memoir
It just happened. I woke up, got dressed to go for a run and there it was. A large lump on my neck. I wondered…I had bloodwork done the day before, is this a reaction to that? What is it? Continue Reading
The gift of conversation
A hard 5 minute conversation for you, could be a gift of a lifetime of actual conversations for my child. As we start the new school year, at a new school, with new friends that is all I can think Continue Reading
Featured in Parents.com
Every year one of my resolutions is to write more. I make a list of favorite online magazines, tell myself I’m going to submit an essay or article to them. This year was no different. Except this year, I would Continue Reading
