This Family's Lives Were Turned Upside Down by a Rare Disease Diagnosis, So They Decided to Hit the Road During the Pandemic

There we were, standing at the foot of a mountain—a mountain we weren't planning on climbing. Life had taken a turn and we didn't know what to do, but we knew we had to climb. We didn't have a choice. I'm not talking about my daughter's diagnosis of Rett Syndrome, a rare neurological disorder. That would certainly be considered a mountain of obstacles that we would face as parents, as partners, as a family. I'm talking about a literal mountain; the one I stood at in the Badlands with my daughter, staring up toward its summit. She just watched her younger brother and dad climb, now she wanted a turn.

It was another moment we used my family's mantra: adapt and go.

In 2013, my daughter Magnolia was diagnosed with Rett Syndrome, which only affects about 350,000 people around the world. She had just turned 3 years old. Our lives were turned upside down. Our social settings went from dinner parties and play dates to therapy sessions and online socializing in Facebook groups. It's a rare disease—doctors can't tell you to prepare for something they don't understand, and the treatments simply don't exist.

The feeling of isolation was intense. Very few people can relate to your stories about your daughter losing her ability to speak, losing her hand function, and gaining a plethora of other debilitating symptoms. While our friends were sharing about developmental milestones, we were trying to make sense of the idea that she was unlikely to hit many of hers. That didn't mean we needed to give up. It meant we needed to adapt. Adapt and go, became our motto. I'm not saying that it has been easy, but it has been worth it.

When the pandemic hit, life turned upside down again. After 3-and-a-half years of hospital emergency rooms and uncontrollable seizures, we had finally figured out the right medicine combination for her and we stressed about running out.

But at the same time, we felt like we were coping mentally better than many around us and I attribute that to that fact that we'd been through a life altering event already. I started seeing a correlation of how we coped with Rett Syndrome and how other parents were coping with COVID. All of a sudden, for everyone, everything was different. Isolation was the standard. There is grief for a forever changed life. There is uncertainty about the future. These are all emotions I have already lived through.

Rett Syndrome has made Magnolia's breathing a serious struggle. She alternates constantly from involuntary breath holding, hyperventilating, and gasping for air. So, as we learned more about COVID-19 and its impact on people with pulmonary issues, we made the decision, that for the sake of Magnolia's health, neither of our kids would be in a traditional school all year.

Even in typical school, Magnolia requires a one-on-one aide. Since school couldn't provide any in-home services, that role fell on my husband. Because her brother was in preschool and just wanted to tell poop jokes to his friends, the role of disciplinarian fell on me. Two kids. Two adults. Two that needed full attention to school, and two adults that needed to work from home. The math was clear—Zoom school wasn't for us. We knew we had to adapt and go.

We decided to sell our house, buy an RV, and adventure across the country. It seems extreme, but social distance was going to be much easier if there weren't any people around. Education was going to be much more fulfilling if we could see and touch the things we were teaching them about.

Teletherapy also opened up a whole new door for us. My daughter's full schedule of physical therapy, occupational therapy, and speech therapy could be done anywhere. Since she was walking less and moving more infrequently during quarantine, she was beginning to have trouble walking. She needed space. We all needed an adventure.

With an RV, we could make sure we were self-sufficient—we had enough food for almost three weeks, our own bathroom and shower, and freedom to go anywhere we pleased. We stopped at farms along the way to stock up on supplies, and important national monuments to feed our kids' brains.

Nothing about our life has been normal for awhile. We've been away from home for over six months, and we're not sure if we can make it back to that same life. Maybe that's OK, though. We've been creating lasting memories, road schooling, and making the most out of a crazy pandemic. We traveled across country keeping ourselves healthy and boosting our mental health. It's one of the best decisions we have ever made. And now, our son thinks that we are explorers. I consider it a parenting win.

So there we were, in South Dakota at the Badlands, standing at the base of a mountain with a little girl with infinite willpower, her body unable to do what she wants it to do, but her mind ready to try. We weren't sure how to get up to the top. Magnolia struggles with balance and motor planning because of the disorder. The ground was loose, and my back was already hurting.

We try our best to make sure that Magnolia gets to have all of the same experiences her brother does, even if it means significant extra effort for us. But sometimes, it's simply not possible. As I learned after my daughter was first diagnosed, all we can do is adapt and go. One step at a time. So, I helped her little legs move from one unsteady step to the next.

As much as the steepness of the slope worried me, it did not deter her. We slipped a little, fell down a few times, and I helped her as she pushed herself up the mountain. We sat at the top of the Badlands, a little bruised, a little scraped up, infinitely happy. We were exactly where we needed to be. Forever changed.

If you want to read about our family's story from the beginning, visit Magnolia's Hope. You can come on the adventure with us on YouTube. For more information about Rett Syndrome, go to the Rett Syndrome Research Trust.