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
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.
Trying to disassociate from our own lives in order to craft a story as a filmmaker was difficult. Explaining how it feels to get a Rett Syndrome diagnosis, explain what Rett Syndrome is and the enormity of living with it, that was hard. Reliving life with Magnolia, I’ll cherish every moment of it.
Through the month of December the documentary is available to rent at www.magnoliashopedoc.com.
As originally seen on Today.com – The film is available today at https://watch.showandtell.film/watch/magnoliashope Rett Syndrome: Don’t Google It. “Your daughter, Magnolia has Rett Syndrome.” The developmental pediatrician leaned in apologetically and added, “don’t Google it.” As the air left the Continue Reading
Today is Magnolia’s birthday. 10 years old! She is in so many ways everything I would hope my 10 year old would become. She is wise, and smart, and defiant, and demanding. She is strong and sweet and funny. She Continue Reading
I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like. Not being able to use your hands, for example, does not seem as horribly disabling as it is. Continue Reading
“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.” – William Arthur Ward We’re excited for a time when we can all get through this and we can get back to normal. Continue Reading
I have mixed emotions when I travel away from Jenny, Maggie and Gray. On one hand, things are hard at home and it’s a struggle to stay on top of everything when both of us are home, making me feeling Continue Reading
Maggie is a full time job. Technically she’s a full time job for 3 people. And even then, it’s a lot. This weekend, Jenny took Grayden out of town for his spring break. I can only assume they’ve been busy Continue Reading
Every year that passes is a reminder of how far we’ve come and how far we are yet to go. The one thing that 2018 was about for us was focusing on living instead of hoping. We are still optimistic Continue Reading