Lucas Camilo

The rig at sunset outside of Glacier National Park

Lucas wrote 13 blog posts over 12 days of travel and did an admirable job of highlighting some of the great (as well as obscure) moments of our trip through Canada and Montana. We were especially impressed at how willing he was to write, even after hours sitting up in his wheelchair as we rolled through mountains and across prairies. That being said, I still feel the need to add in a few of my own reflections about the journey, if only for ourselves to read years from now to help recall how remarkable it was.

Indeed, every time Krista or I write something on the blog about a trip we take with Lucas (and now Ida) we always seem to preface it with a disclaimer about how hard it is for our family to travel in the first place, and then end with a proclamation of triumph for having pulled it off. This time will be no different. The truth is, everyone with young kids probably knows how it feels to come up with a plan for e a family outing – even if its just to the movie theater or grocery store – run into some stiff roadblocks along the way, but then pull it off and pat yourself on the back for your accomplishment.

Our plan for this particular trip started last summer when we got the idea of renting a wheelchair accessible RV. We had come to the realization that the days of flying on a plane with Lucas were over — the method we used a few times from 2012-2014 was no longer practical given his growth — and so that perhaps the only way to take a trip further than a few hours from our home would be in a vehicle that doubled as a home. Yet when we started researching it, we found that there was no where to rent a wheelchair accessible RV in Washington state, nor anywhere else in the U.S. But there was a place in Vancouver, BC, just a few hours north. Unfortunately their RV’s were booked for the summer of 2015 but we pledged to make a reservation for the following summer. Somewhere along the way one of Lucas’s nurses brought us an article from Smithsonian magazine about a small town in Central Canada called Drumheller that was known as “the dinosaur capital of the world.” Our destination was set.

We also knew we wanted to visit friends and mountains in Montana, so back in March I created a google doc of a potential itinerary and started researching and booking RV parks along the way. Still, there was a fair share of hand-ringing leading up to our departure, mostly because of the challenge and uncertainty of traveling with a kid in a wheelchair and on a ventilator. Oh, and of course we wouldn’t want to forget the welfare and needs of our the often overlooked second child, Ida! Traveling with two kids, one of them an 18-month old, would be tough enough even without Lucas’s disability.

It didn’t take long for some of our fears to be realized. As anyone who’s ever taken a road trip knows, you can’t count on everything going perfectly every day. In fact, you often have to think on your feet and make changes to the plan because of unforeseen circumstances. An so it was with our trip. After spending the first night in Vancouver we were all ready to pick up the RV  early in the morning and hit the road — we had planned a 6 hour drive for that day so as to get right into the mountains. But then we heard from the rental company that there was a problem with the lift and we wouldn’t be able to pick up until noon. Then we had to do an orientation on the intricacies of RV operation (neither of us had ever been in one before), which meant we didn’t hit the road until around 2:30 pm. The upshot was that Lucas was immediately enamored with the RV. During the initial tour he kept saying how amazing it was that we were going to be in a “house on wheels.” I don’t think he had fully realized what we were getting into until we actually showed up at the lot.

After a few hours of hard driving we realized there was no way we were going to make it to our destination, the KOA in Revelstoke, BC. So we found an alternative RV campground on the map and crossed our fingers that it would have spots available. We pulled in with two tired, hungry kids, and luckily found a spot pretty quick. But then we learned that there were no hookups! Well, no worries, we’ll just fire up the RV’s internal generator which will in turn power all of Lucas’s machines. But there was a problem there too — “quiet hours” ran from 8 pm to 8 am meaning no generators during that time. We stretched it to 9 pm and used the time to charge up all the batteries, but there was still one major issue: vent humidification. Without power there would be no heater through the night to warm the water that keeps Lucas’s airway moist. This did no bode well…

But let’s take a step back. You seen, we’ve gotten so used to helping Lucas move through the world that we sometimes actually take it for granted. As this story begins to illustrate, its really not so easy though. With his weight now around 50 pounds and his height off the charts for a kid his age (yeah, he’s a beanpole), not to mention his floppy limbs, lifting Lucas into and out of his wheelchair — something that we have to do multiple times a day — has gotten a lot harder. And then there’s the suctioning of his trach, something that has to be done regularly or we risk having a blockage that will stop him from breathing (this is more challenging on the road since he spends so much time off of the humidified air of his heater-attached home vent). But perhaps the most difficult thing of all is the ventilator itself. You can’t overstate the limitations of having a human child tethered by his throat to a 6 foot plastic tube for the entirety of his life. Sure, we can detach the vent tubing when moving him — for about 30 seconds! But mostly he has to always be attached to the vent, which depends on battery or electric power, which when you’re on the road means always having a plan for keeping the external battery charged.

These are just a few of the things we have to think about. The amount of extra equipment we have to lug along (much of it for safety purposes, in case some wire or tube or plastic thingamajig breaks) is kind of mind-boggling, and for this trip is was complicated by the fact that we picked up the RV in Vancouver. By borrowing our neighbors roof rack to be able to load up our own wheelchair accessible van up to the max, spent about 24 hours packing, and crossed our fingers that we hadn’t forgotten anything essential.

Believe it or not, we actually did remember all the important things we needed for Lucas. But we still ran into trouble along the way, like that first night camping where there was no humidification for Lucas’s vent. We made it through – he and I both slept horribly, as I woke up every 45 minutes to put saline drops down his tube, and he could never get comfortable without his usual set up. At 6 am we threw in the towel, packed up the RV, drove a quarter mile outside of the campground and parked next to a beautiful lake right as a summer rainstorm pulled in. We fired up the generator and plugged in all of Lucas’s devices, allowing him to go back to sleep for a few hours. We made a cup of coffee, and sat looking out at big raindrops piercing the lake as cows wandered by the RV. Krista and I clinked our coffee cups and smiled at each other… what a way to start the trip.

Before wrapping up this post I want to give one more piece of background about why this adventure was especially triumphant for me. You see, 20 years ago I bought a 1974 Volkswagon bus (on a whim) and ended up driving it with a friend to the southern tip of Mexico and back. That orange bus, which we named Franzi, stuck with me through college, and 10 years ago Krista and I took it for a glorious road trip through the Olympic National Park. I dreamed that once we had kids we would take extended vacations in Franzi, camping in beautiful places all across the West, and beyond.

When Lucas was born and diagnosed with a severe muscle disease, that dream slipped away. And yet I held on to a thread of it by not letting go of Franzi, which is still parked in a lonely garage at my family’s property on Whidbey Island. The week before we left for our RV adventure we were up at Whidbey and it suddenly occurred to me that the RV vacation was the realization of the camping road trip I’d always wanted to do with my family, and that if it were successful, perhaps I could finally let go of the old Franzi dream.

Stay tuned for part 2 in which we describe through adult eyes more of what happened on the Dino Family World Tour of 2016…