Lucas Camilo

Reading back over my first post about our RV journey I realized that, inexplicably,  I almost got through the whole thing without writing the word “dinosaur.” Which is funny because, as Lucas’s blog posts and the pictures made clear, this trip was all about dinosaurs, and all about Lucas. Fortunately, our distant destinations of Drumheller and Dinosaur Provincial Park were in a beautiful part of the world that Krista and I were also excited to visit. Still, we were driving nearly 1000 miles to get to the badlands of central Alberta and so a lot was riding on one big question: would Lucas actually be into it?

After our rough first night, things quickly started looking up. Our next stop was Banff, in the heart of the Canadian Rockies — still a ways from dinosaur country, but one of the places that Krista and I were most excited to explore. We could already tell that Lucas was into the RVing thing and excited to get out and explore, wherever we landed. This was a relief, especially since Lucas can sometimes be a homebody, reluctant to get out of his normal routine. In fact, the weekend before we left for the trip he was in a grumpy mood, content to lay around the house doing apps on his iPad more than anything else… and it had us worried. Indeed, in the two weeks since we’ve gotten back from our trip we’ve also had some of those same rough times, with Lucas grasping for fun things to do during the final days of summer, and rejecting most of our ideas for adventures outside the house.

But on the road in the RV Lucas was in non-stop good spirits, and open to just about anything we suggested. Meanwhile, we started getting in the travel groove; there may have been check-list of things to do a mile long each time we arrived or departed from a campground, but it kept getting easier and by the end we were working together like a well-oiled machine. The highlight of our time in Banff (aside from the spectacularly located, gigantic RV park on the side of Tunnel Mountain) was the hike we took along the Bow River outside of town. I even got to jump in the frigid, mountain water as we picnicked by the edge of the river.

But the next day is when the dinosaur fun began. Krista and I were a bit sad to say goodbye to the Rockies and drop down into the dry prairies of Alberta, not to mention hit the only traffic jam we encountered on the whole trip driving through Calgary. But in the the sweltering afternoon heat we arrived in Drumheller, and we all knew exactly where we needed to go first: the famous 26-meter, 86-foot tall T-rex that stood in the middle of town. Seeing Lucas’s face when we lowered the wheelchair lift onto the ground below “Dino” made the many hours of driving we had already endured totally worth it. He said “woahhh” and made his best “surprised face” ever. We spent an hour checking out the humongous fiberglass dinosaur (4 1/2 times the size of an actual T-rex) from all angles, and let a restless Ida crawl and splash around in the nearby wading pool. I think the moment of arriving at this ridiculous tourist attraction was, for me, when I really felt the satisfaction and relief of knowing that this trip was going to be totally unforgettable.

Another thing that was making the trip smooth and fun was the fact we were in Canada. Pretty quickly we noticed that there’s a reason for the Canadians-are-nice-people stereotype. Specifically around disability, we often encountered a feeling of acceptance, inclusion and even generosity – but not in a patronizing way – towards people with disabilities that seemed different than in the U.S. For example, we pulled into one campground that we hadn’t reserved a spot for and when the ranger showed up she looked at Lucas and said “where are you from?” I said Seattle and she said “I’ll just pretend that you said British Columbia. We have a policy that BC residents with disabilities camp for free in state parks. Enjoy being Canadian for a night!” And off she rolled. At the Royal Tyrell museum in Drumheller Lucas participated in a special kids activity hour. I mentioned that he was in a wheelchair when I signed him up but didn’t make a big deal about it. As it turned out, they created some special things for Lucas to do knowing that some of the regular activities involved mucking around on the floor in a way that a kid in a wheelchair wouldn’t be able to. Sadly, this hardly ever happens in other places we visit.

Best of all was the wheelchair accessible bus that took us to actual paleontological dig sites in Dinosaur Provincial Park, our next stop after Drumheller.  We put in a request a week in advance in order to have the accessible bus; the wheelchair lift was a little rickety, and it was a hot, bug-filled trip into the badlands… but the two hours we spent with our awesome tour guide Tom was one of the biggest highlights of the whole trip.

Lucas especially loved Tom the tour guide, and he still talks about him glowingly when doing his photo slide-show for friends. Tom epitomized the Canadian attitude around disability that we saw on display at various times — making sure that Lucas and our family were included in everything but without making a big deal about it. At each stop he would have people gather outside the bus and “enjoy the view” while he operated the lift to get Lucas down, as if it were a regular part of the tour. And of course, Tom also knew a lot about fossils and dinosaurs, so he was naturally a hero to Lucas.

It wasn’t until we made our first stop after crossing the border back into the U.S. that we really appreciated the accessibility of our fossil journey in Dino Provincial Park. After a beautiful night camping outside of Glacier National Park in Montana we rolled up to the gate ready to check out the Rocky Mountains on the other side of the border, and maybe even take an accessible hike into the woods. Instead, we were told by the ranger that our RV was slightly too large to enter the park, and that none of the tourist buses or vans were wheelchair accessible. It was a big disappointment, and though we don’t want to romanticize our experience in Canada, we keep coming back to what happened on the other side of the border, and wondering what it is that sometimes prevents institutions and people in the U.S. from trying harder as it relates to disability.

At any rate, the upshot of not getting into Glacier was that we ended up taking a detour and staying in the front range town of Choteau. And as it happened, 12 miles down the road in the town of Bynum was another dinosaur museum (sometimes you get lucky and all roads lead to dinosaurs…)  The Two Medicine Dinosaur Center was quite a contrast to the Royal Tyrell museum, which receives an approximate 7000 visitors a day. During the two hours that we hung out in Bynum we were the only visitors to the museum, meaning exclusive access to the one staff person there. Lucas was wowed by meeting Siesmo the Seismosaurus (which he later blogged about) and it really was in fact pretty cool — a 136 foot long sauropod that, unlike the fiberglass T-rex in Drummheller, was built and modeled after an actual fossil discovery.

Our final dinosaur destination would come 2 days later in Bozeman, and it was fitting that it landed on Lucas’s 7th birthday. We spent the better part of a day wandering around the Museum of the Rockies, a vast display of amazing fossils and prehistoric relics that I had been hyping up to Lucas ever since I peaked my head in a few years back. When we got there Ida was still finishing up a nap so Lucas and I laid for a while under “Big Mike”, the T-rex fossil that towers outside the museum. It was that time in the trip when we were all starting to hit the wall, exhausted at having been on the road for nearly 10 days. And yet laying there staring up at the jaws of a Tyrannosaur I realized I was totally excited to jump into another dinosaur exhibition, while at the same time already feeling wistful at the idea that it would be over all too soon.

Now a few weeks later, on the eve of Lucas starting second grade, we’re all a little nervous about what another year of school might entail for a kid with so many physical challenges (actually Lucas isn’t nervous – when asked the other day what he thought school was going to be like this year he said matter-of-factly, “Awesome. All caps. Exclamation point.”) At any rate, whatever difficulties we encounter this year, we can always take refuge in dinosaurs… and the small triumphs of life, like the determination and love that got us through this epic family journey.

School starts next week! here’s what Lucas has to say about it:

the 2nd grade .

i am reeeeeeeeeeeeeeeeeeaaaaaaaaaaaaaly excited about learning so many difrent things than in 1st grade .
i am reeeeeeeeeeeeeaaaaaaaaaaly excited about learning about time
you know like i did in 1st grade .
i rememember it with my special troodon brain .
cause they are the smartest dinosaurs
you know as the dinosaur train condocter says .

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…

We made it! After about 2300 miles on the road– through two large Canadian provinces and three US states– we arrived back in Seattle yesterday afternoon. Lucas was excited to have Nonna, Papa, Ashley, Brandon, and his cousins Ellody, Tya and Madden waiting for us when we rolled up, with balloons and another birthday celebration!

being 7 at home .
i got 2 dinosaur bloons .
1 t-rex .
2 triceratops .
turns out he is a poet & i didint even know it.
mabye the t-rex 2 .
all i have to do is ask him .

Family is there to greet weary travelers

Lucas wrote this as we were preparing to leave our last RV park on the last morning of our Dinosaur Family World Tour. Also included are some pictures of us looking triumphant, and frazzled…

blog about an imaginarey blog .
the last blog of our trip .
maybe just maybe we will go on another RV trip someday .
i was like if i dont blog my pepole would be realy mad .
we sleept here at potholes lake .
will we go on another RV trip ?
i put together my imaginary blog in bed .
i am sad that we are leaving montana .

Arriving at the last RV camp at Potholes Lake

early morning walk on the river

The blogger at work

The last rest stop

Lucas hasn’t had much time to blog lately — we’ve been on the road as well as seeing lots of friends in Bozeman and now Missoula. We also picked up a new traveller which Lucas writes about in his latest post:

penny penoplosaurus.
the new member of our dinosaur family world tour .
aka aunt megan
pretty cool ankylosaur shirt if you ask me .
GREAT TO !!!
we went 2 mizoula
we went on a little hike all of us ankylosaurs all together .

Lucas and Penny lounging by the Clark Fork river in Missoula.

being 7 .

i LOVE IT !
i love the birthdday pie that elisobith made for me .
at the museum we met the t-rex big mike wich is a pretty funny name if you ask me .
a planeteryum the most unbelevable thing i had ever seen .
a planatereum is a thing where the a lights go out & they show you the
solar sestem.

(The whole crew with Big Mike outside of the Museum of the Rockies in Bozeman, the final dinosaur destination on our world tour)

Today is Lucas’s 7th birthday. We’ll spend much of the day at the fabulous Museum of the Rockies– another dinosaur adventure!

Lucas has been reading his blog comments and so we’d love for friends and family to post birthday greetings here.