Remember the lemons we picked at our campground in Tucson? Right away we cut a few up and ate them… fresh, juicy, and sour! A few days later, we squeezed about half of them and used the juice to make lemonade. Fresh squeezed lemonade enjoyed on a hot day in Arizona… delicious! And a perfect analogy for what led us on this adventure.
Four years ago, when Cake was just a dream growing in my belly, Kitt and I started talking about roadschooling. Yay Yay was only four years old at that time, and although we had always intended on homeschooling, we were not yet official homeschoolers and really had no idea what homeschooling would look like for our family. When he brought up the idea of traveling around the country in an RV, I thought he was joking. Kitt and I had gone on one camping trip together pre-kids. I wouldn’t say that he overwhelmingly enjoyed that experience, so the fact that he brought up this idea that involved camping on more of a long-term basis and with three kids shocked me. In that moment, I also fell even more in love with him. Heck yea, I wanted to hit the road with our kids and see all of the beauty that our country holds! Thus began his
interest obsession with looking into RVs, which quickly became focused on converted buses and then he found what he wanted… an Eagle bus! Once Cake was born, my interest in every single bus he found for sale on the internet, quickly waned. I eventually told him to only show me ones he might be seriously considering. I remember at one point suggesting that maybe we should try out camping in an RV once or twice before buying a bus. “You know, make sure this is something you actually enjoy doing?” But that is just not how Kitt works. It’s right in his owner’s manual. “Will become interested in something and pursue it with intense interest until he has learned everything about it. Will then acquire and master said interest.” And that is how we came to be the proud new owners of a 1977 Eagle bus. Over the next couple of years, we did some weekend camping trips mixed in with a lot of bus renovation work with the ultimate goal of spending a year on the road when our littlest was at least six years old.
Life has a way of shaking things up and changing our plans. This past year or so has been filled with big challenges (big, juicy lemons!) It was a very difficult time for our family. One that very few people, even some of our closest friends and family, fully understood. And those lemons played a big part in us hitting the road.
In December 2013 our life changed overnight. Very cliche, I know, but that is actually what happened. One day we were cutting down our Christmas tree, the next day our then three year old son was admitted to the hospital and diagnosed with type 1 diabetes. Type 1 diabetes is an autoimmune disorder where a person’s body attacks it’s own beta cells in the pancreas. People with t1d stop producing insulin and therefore require blood sugar monitoring and injected insulin for the rest of their lives. Management is very complex because there are so many factors that influence blood sugar and insulin needs are constantly changing. In the beginning, it was so hard… every single minute of the day and night. The stress level was astronomical.
When Dooder was diagnosed, I thought our dream of traveling the country was no longer an option. The thought and planning that went into an afternoon at the park was overwhelming, so the idea of moving onto the bus and moving around every few days seemed impossible. Where would we store supplies? How would we get supplies to us? What if there was an emergency? How would we get his check ups at the endocrinology office? Should we really take on another big change?
Throughout our first year with diabetes, we learned a lot! We became better at carb counting and estimating. We learned how different foods effect his blood sugar. We figured out how best to treat his high and low blood sugars. We learned the many non-food factors that effect his blood sugar. Kitt and I learned how to divide up some of the diabetes duties and to notice when one of us needed a break. Dooder showed us how to be brave.
One of the biggest game changers in his care was when he started on an insulin pump and a CGM (continuous glucose monitor). This has allowed him to live a much more normal life and has allowed us to keep him healthier. He has the Omnipod tubeless pump and the Dexcom CGM. The Dex has not only helped us take better care of him, but has greatly reduced our anxiety. There is a certain comfort that comes from being able to, at a glance, see what is happening in his body and from having something that will alarm if he is high or low. The technology is not perfect, but it is a huge improvement. I can’t imagine taking a trip around the country with my t1 son without the Dex and pod.
It’s important to Kitt and I that diabetes doesn’t define him and that good care is just a normal part of his life and routine like brushing his teeth or playing outside. We wish for him to take each day as a gift and live it full on. A year and a half into it, diabetes is still hard, every single day. But we have done our best to make it just another aspect of our life. Normalizing the abnormal is how life goes on and remains limitless in opportunities. We are thankful for people who are living very full and amazing lives with type 1 diabetes. They have inspired us, and I hope that we can inspire others! Life with diabetes takes a lot of work, but it does not have to mean all work and no play. It can be filled with adventure, joy, health and fulfillment. I want his life to be full and wonderful. I want him to dream big and know nothing can stand in his way.
Diabetes was just one part of our family’s struggles this past year. In the fall, Kitt was laid off. I felt like I should be upset or worried, but I wasn’t. I was relieved when his position was eliminated and hopeful that something much better was in store for him. I think it was a little harder of an adjustment for him, being the sole financial provider for our family. I assured him that we would be fine, and we would figure out our next step together. Ultimately, it was a gift of time together that our family desperately needed.
There were a number of other less dramatic challenges this past year, including but not limited to a broken arm, stitches, sleep deprivation, and bus drama. This was a trip we had hoped to take in three or four years, but what this past year has taught us, is that tomorrow is not promised. You can make all the plans you want, but life may not play along. Sometimes you just have to let go and open up to where life is leading you. So many things had happened that by the time Kitt lost his job, we just had to laugh. It was time to embrace what the universe was throwing at us. It was time for making lemonade!
So we did it… three years earlier than we had planned, we loaded up the bus with the essentials, most importantly our family, and hit the road. We left with very few plans, lots of diabetes supplies, and no idea when we would return. We have incredibly supportive family and the world’s best neighbors who have not only made a trip like this possible, but have cheered us on and encouraged this crazy adventure. Dooder has a fantastic Nurse Practioner who has been supportive and has helped us long distance to take good care of him. We have full and grateful hearts for these people, for this opportunity, and for lemonade… delicious, refreshing lemonade!