We were about to board the Disney Wonder for a cruise to Alaska with my three-year-old medically fragile daughter and I was filled to the brim with emotion – terror and delight, trepidation and gratitude, and a little bit of wonder at the possibility that I might actually pull this off. If I did, I could officially call myself a badass. If I didn’t … well, I didn’t want to go there.
The specialists who treated my daughter at the local children’s hospital were not in favor of this trip. They made that very clear – even going so far as to tell me to my face that I was risking her life. But something inside of me was pulling with such force that I could not ignore it. I had a deep knowing that we were supposed to take this trip, even if it felt impossibly scary.
My daughter Kennedy had been diagnosed with a neuromuscular disease at 9 months old called Spinal Muscular Atrophy. It’s considered to be the childhood version of ALS, and at that time, it was the number 1 genetic killer of children under the age of 2. In 2017, an effective treatment came on the market, followed by two more in later years, and today, the disease is no longer a death sentence. But in 2011, we didn’t know if our daughter would see her second birthday. Statistically, she had only a10% chance of that happening.
We hadn’t been on a vacation since her diagnosis. She was in and out of the hospital with respiratory illnesses, in the pediatric intensive care unit for weeks at a time. She had a feeding tube, required a bipap machine for respiratory support and regular respiratory treatments to keep her lungs clear, and she couldn’t move. She required seven machines every day just to stay alive. But she was alert, engaged, and that girl LOVED Disney.
My family needed that vacation in a way I can’t even describe. Our lives had been consumed by everything required to keep our daughter alive. Though we were doing the best that we knew how at the time, I’m not even sure you could call it living. But here we were, ignoring the doctors’ advice, about to board a Disney cruise ship.
That decision changed everything. Although I spent much of that trip in sheer panic over whether I had made the right decision and was going to expose my daughter to something that would kill her, something magical unfolded before my eyes. I met a version of my daughter on that trip who I had never met before. She was full of joy, alive with wonder, and loving every minute of it. She was hanging with the Disney princesses, going on excursions in the ports, and making us follow Disney characters around the ship when they’d pop into a common area. She visited Alsakan Husky puppies and touched glacial ice.
I had a breakthrough on that vacation, which I can only describe as Divinely-gifted: “Why am I working this hard to keep her alive if I’m not actually going to let her live?”
We didn’t know how much time we would get with Kennedy, but in that moment, I made a commitment to myself and my daughter that I would let her really live. While we were still onboard, we booked another cruise to the Caribbean, for two months later. And we were off to a life of adventure, family, and fun, which we embody to this day.
We have never looked back. As of the date of this writing, we’ve been on 9 cruises, 2 train trips across the country, more than a dozen flights, multiple road trips to national parks, trips to Walt Disney World, and two trips to Hawaii. She’s been to 6 countries and somewhere around 15 states.
There is room for more life even in the hard. And, it’s meant to be claimed.
