They thought they would teach their daughter about the world Instead they have to teach the world about their daughter
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
A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of Continue Reading
We have all known life is uncertain, but 2020 has really handed us uncertainty on a silver platter. If anything Covid has given the world a glimpse into our lives. The entire world is contemplating medical uncertainty, a range of Continue Reading
Everyday I try to focus on the positive. I thought I would share some of my positivity with you. Here’s 10 moments during this pandemic that have made me realize, life isn’t so bad. (scroll down for blog) Top 10 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
Life was finally moving in a smooth direction. In late February, thanks to new dosing of medications, her seizures were back to being under control, her breathing issues went from a constant struggle to a regular but not constant problem Continue Reading
We have a special treat. Sara Polon reached out to us a few years ago and has been consistently supporting us by raising awareness for Rett Syndrome, fundraising through her business, Soupergirl; and sending us soup to lift our spirits Continue Reading
