This is the story of a family who dreamed of travelling the world but hadn’t made it a priority until life suddenly threw a couple curveballs, priorities and intentions changed.
Turning Point #1
March 13, 2011. My mom had been battling cancer for about 18 months but seemed to be doing better. While we were on a trip to Florida, she suddenly got sick. I didn’t even know she was in the hospital at the time. We had talked to her the day before she went into the hospital because in 2011, GPS on our phones didn’t really exist. She referred to herself as “mom mom” instead of Tom Tom (which was a GPS service you would use). We had checked out of our hotel in Orlando early because well….. I hadn’t booked the best hotel. One thing you’ll learn about me is I have a lot of what NOT to do. But that story can come at a different point. So we had driven over to St. Augustine and she was helping us find a hotel. The next day, we called her to help us on our way to Homosassa Springs, FL. That’s when she had to let us know she was in the hospital and not by her computer as usual. She hadn’t told me because she didn’t want me to worry while on vacation.
At that time, we didn’t think too much of it until one thing lead to another but we got a phone call early two days later, she was in the ICU. We debated and debated about what to do. Do we go ahead and leave to try to make it back to Kansas City? Do we stay? We ended up staying. We wouldn’t have made it back in time and really didn’t know at that point what was going to happen. Ultimately, I got the final call that she wasn’t going to make it, standing in line for the Everest roller coaster at Animal Kingdom. This was a day where it really hit us how short life really can be. She had just turned 60. Over time we began to discuss how there were places and things we wanted to do in our life and made it more of a priority to experience those adventures.
Turning Point #2
August, 2015. Our daughter, Emma, had been born on Christmas of 2013. She was healthy with a few motor and speech delays but there weren’t any other indicators (that we saw at the time) that anything else was necessarily wrong. We’d been able to take her to Disney (even though I claimed I’d never take a baby to Disney!). We had been able to go on a trip with my sister and her husband to Quebec while Emma has left with my dad and stepmom with what they dubbed as Emmagedden. We had another trip planned for September to Vancouver and Victoria Island but then on August 18, 2015 Emma had her first (that we actually saw) seizure. It was a very scary and unsure time. After a few days in the hospital with MRI’s and other scans done the doctor’s couldn’t really answer why she was having seizures.
Our life drastically changed at this point. We cancelled our trip to Canada. Seizures can be a scary thing, especially because Emma was having 20-30 seizures a day. Our focus was on her and trying to get her the best care we could. Having a newly diagnosed child with epilepsy before she turned two, was a lot for us to take in. We went through three different kinds of medicine, almost did surgery until we finally decided to try CBD oil. It took time, a lot of strength and a lot of prayers but we eventually were able to get her to a place where she was seizure free. Her seizures, also caused us to think a lot about the future. We don’t know what Emma’s future holds for her. But we do know we want to provide the best life we can for her. Which, for us, includes seeing and experiencing as much as she can.
With those goals for her life, come challenges. Her special diet and certain developmental delays that she experiences. This is where I’ll go through all the food challenges, mobility challenges and others challenges that we have encountered to 1. tell you what not to do because as we all know, we learn the most from our mistakes. But from these mistakes, they have helped us not make those same mistakes on other trips. They’ve even given us a good laugh at “I can’t believe I did that”. I also hope to encourage those who might think it’s too much to travel with special needs. Is it hard? Yes. Can it be frustrating? Definitely! But is it rewarding watching Emma learn about the world around her? 100%