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
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
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
This past week I kept thinking, “I’m missing something. Is there something else we could be doing for her breathing? Or for her hands? Or for anything else?” To tell the truth I hadn’t been keeping up with where things Continue Reading
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
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
If you have been following us for awhile, you know that we focus on three main goals. Awareness for Rett Syndrome, fundraising for Rett Syndrome organizations, and living life as best we can. When Covid hit, our focus shifted. Those Continue Reading
Work in the entertainment industry had all but completely halted and the particular segment of the business I was in was going to be slow to return. Zoom school was not working for either kid. In person school was going to feel too risky. So, with no education plans, no employment plans, and no social plans, we did the only thing that felt safe at the time. We bought an RV.