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 (we’ll take what we can get), and she gained 8 pounds, allowing us to stave off a feeding tube surgery for a little bit longer.
Then in February we were a part of 3 amazing Rett Syndrome events. Mission San Antonio was hosted by our family and friends, and raised almost $100k. Austin Reverse Rett which we co-chair and is hosted by the Rothschild family was an incredible success. AJ actually delivered the key note there (we’ll share his specch here shortly). And the Disney Princess Run in Florida with Girl Power 2 Cure was an amazing experience for all of us (we have a video from this adventure as well, but felt weird sharing in the midst of the Coronapocalypse). February was exhausting but fun. AJ and Mags did end up in the ER one day but it was to deal what was thankfully a shortlived, temporary but dramatic uptick in seizures . It was an emotionally exhausting month. Fundraising for Rett and balancing Rett symptoms.
Since we were traveling so much in February, we were watching what was happening with the Corona virus. We had multiple discussions whether we should be traveling or not and while we did start taking precautions, much like mostly everyone at the time, the risk to travel seemed low. I brought multiple packages of clorox wipes and to wipe our airplane seats, trays etc. and we were being vigilant about washing. I like being prepared and when you have a kid with a complex medical disorder being prepared is necessary. I actually wrote about a similar hypothetical in 2017 (https://www.kveller.com/my-daughter-is-disabled-could-we-survive-a-natural-disaster/) and I can’t believe this is real life now. But at least, I had thought about what preparation might look like.
While traveling, fundraising and dealing with seizures, we also knew it was Shelly’s last month with us. Shelly has been Magnolia’s aide for 7 years. Her leaving was hard on everyone. We all cried. We couldn’t dwell, because we needed to find a new aide, it’s a necessity for Maggie to attend school and for us to attend life. So on top of traveling, fundraising, running, seizures and grieving Shelly leaving, we searched. By the end of February we had a new aide. She trained with Shelly and started school at the beginning of March. She was with us for 2 weeks. By the end of her 2nd week, the coronavirus hit the US, California was quarantined and all of our lives were changed forever. Since March 5th, it’s been the four of us and our 15 week old puppy in our house and that’s it.
It is not easy to be in quarantine with a preschool boy, another kid with medical needs that always needs assistance and a new puppy.
The funny thing is, it isn’t easy but it has been more fun than hard. Gray and Magnolia are actually playing and communicating so much more with each other because we aren’t just running around. Magnolia is using her computer more. We’ve been able to really focus on our family and working together. Sure, we worry about medicines, groceries and all of our health, not to mention the future of the world, but we work well as a family.
The uncertainty of what’s next is the hardest part. As a kid with respiratory issues, Maggie would be in the high risk category. Will we ever feel 100% comfortable with Maggie returning to a school without a widespread successful vaccine? Will we be ok sending Gray back to school or returning to the same kind of work without dreading the possibility of picking it up and bringing it home?
For right now we are managing well. We are happy. We are healthy. Life is smooth in the apocalypse. And, I was prepared, more or less. I think the most surprising part about the apocalypse is how much laundry there is. That’s one thing I wasn’t prepared for.