When the pandemic hit, our lives, like everyone’s was forever changed. it was scary. It was unnerving. It was unsettling. It still is. Though we had thought about what life would be like during a natural disaster a lot ( Jenny wrote this article about what that experience might be like for Kveller in 2017), we weren’t prepared for the reality of it all. As things continued to spiral out of control in Los Angeles and our lives grew ever smaller, we knew we had to follow our own advice. Sitting on the sidelines has never been our style, and waiting has never been an option. We don’t sit and wait for a treatment for Rett Syndrome, we do everything we can to make those happen. Surviving a global pandemic while still fulfilling our mission of sharing our story and doing everything we can to educate people about Rett Syndrome was not going to be easy, but it was going to be necessary. We could put our lives on hold for a year or more. But as Maggie turned 10 and her childhood was already dramatically different due to Rett Syndrome, one more year seemed like complacency.
We watched our friends pod up with apprehension. We needed a pod, but because of Maggie’s particular Rett Syndrome symptoms, we knew it was too risky. We’ve written about our particular anguish about these things as well. We knew that the longer we stayed in Los Angeles, the harder it would be to rationalize our extraordinary risk aversion. We knew the longer our friends participated in socially distant outdoor activities, the harder it would be for us to avoid them as well. 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.
Social distance was going to be much easier outside of the city and with our walls closing in, we set off on an adventure. In the end of our documentary we pledged to Maggie that we would go on adventures so she would have stories to tell. And, if you haven’t gotten to see that, you can buy a DVD here. But the other thing we wanted to do was continue to create stories about Rett Syndrome, so, while we were exploring the world, we brought our cameras and are putting out a weekly series called Moving Forward. The first episode is out today at youtube.com/magnoliashope. And the trailer is here. I hope you’ll watch and come on the adventure with us. It was certainly chicken soup for our quarantined souls and even as we can finally see a light at the end of this tunnel, I hope it will be for yours as well.
Thank you, as always, for your support, kind words, and well wishes.