Lucas Camilo

An upshot of more mobility: putting together your own outfit

On September 9^th, Ida officially let go of the couches/chairs/tables/doorjams/walls/hands she had been using to help herself navigate the world, and she started walking. She’s walking!

We all have so many feelings about her walking. It is so awesome to see both our kids learning, grappling with and then mastering any new task. Ida is far from “mastery” of walking yet, and she has the scars and bruises to prove how hard she’s working. But it is so exciting to see her do something she’s been working hard on. And she is absolutely pleased with her ability to now get around our house and get into things so much more easily.   And Lucas has gotten into celebrating this achievement, too. Burke and I had been trying not to make too big a deal out of the walking, but Lucas picks up on everything. A couple days after she had started walking, she was making her way across the living room toward Lucas. Clearly the two of us weren’t making a big enough deal of it, because Lucas cheered and called us over. “She’s walking! I saw her walking!” he exclaimed.

But just as you can probably imagine how joyous it is for us that she’s walking, you can also imagine how complicated that celebration feels in our family. Burke and I definitely celebrate Lucas’s awesome achievements – right now mastering hard math skills, learning to navigate a new keyboard and more apps, becoming so much more precise in his communication about his needs. His achievements truly are mindboggling. There’s no reason to compare any two kids, but obviously Lucas and Ida are on their own paths. I hope that we’ve made that clear to Lucas by now. I hope that his celebrating Ida without expressing much envy comes from a place of self-confidence we’ve helped him build.

Amazingly, up until his seventh birthday, Lucas has never spoken about wanting, wishing, or even wondering about doing things that he can’t do. But then one day on our road trip he suddenly told me that he wished he could chase the cat around like Ida. I stopped myself from giving our usual framework (“you can chase the cat, it’s just different because we’re pushing you in your wheelchair,”) and instead I told him I wished he could, too. I asked if there was anything else Ida did that he wished he could do. He said, “I wish I could crawl.” It broke my heart, not just for the simplicity of the wish, but also with pride. Even though he’s now grown up enough to put words to the fact that he can’t do things that most other kids can, he still moves through the world so joyously.

Walking means being able to keep up with friends more easily! This is Ida and Hazel.

But then, Ida was born with her own challenges, and we’ve lived with holding open the possibility that walking might not be the way she gets around the world. Although the difference is subtle to most people, Burke and I can still watch Ida waddling around with kids her age and see how much harder she has to work to get up off the ground and then to keep herself up. We can see the wobbliness in her joints and feel the extra softness to her chunky legs. So a piece of our excitement at her walking is related to her extra hard work, too.

Nonetheless, I feel a little bit clandestine about my joy at Ida’s walking. A couple days ago we had a time to walk around Columbia City on a bright, crisp fall morning. Ida and I were wandering around exploring this place where she has never walked before. She held loosely onto my finger as she walked 20 steps one way, then stopped to touch a potted plant. Then she pulled lightly and we walked over to the other side of the sidewalk to look at some glasses in a display window. I usually feel pressed to get somewhere, get something done, or get food in Ida before its naptime. But at that moment I was so present with the joy at being there with my walking kid, barely holding her hand as she guided me in exploring the range of her own physical possibilities. And I got to see exactly what things caught her attention – the shape of a long leaf, her reflection in the mirror, one person walking by but then not the next. It felt so incredibly good, like all the colors were brighter. I felt self-conscious, like I was getting more than my fair share of joy at that moment and that we were showing off by walking and wandering down the sidewalk together.

So we haven’t posted announcements or facebook videos or treated this new phase of Ida’s mobility like a pinnacle achievement. But we have been thrilled.

Meanwhile, Lucas just took a major new step of his own. Whenever we’re out at a playground kids come up and ask some variation of “whys-he-in-a-wheelchair? whats-that-thing-in-his-neck? Why-does-he-have-that-thing-and-that-thing?” Lucas never wants to answer himself, but usually after a staring kid finally asks a question, Lucas will say “I KNEW she was going to ask that!” But then just two days ago we were out at the park on the Sway Fun, the piece of playground equipment I think of as ours because we worked to get it there, and a group of older kids from Lucas’s school came over. They said “Hi Lucas!” And then they started asking me all the questions. I turned to Lucas and asked if he wanted to answer “why is he in a wheelchair?” He said sure. “I’m in a wheelchair because I can’t walk, and so it’s how I get around.” And then he added, “I’m going to make a slide show to tell people about my machines and equipment.” So matter of fact. So sure of himself.   September 25, 2016. My heart burst with pride again.

Lucas started second grade last week! It’s going well so far, and more to come on that.

For now we wanted to make sure that his blog fans know that Lucas is famous(er). An amazing multimedia show opened this last week that features the work of our artist friend Ellery (E.T.) Russian.

Lucas wrote this about going to the opening:

it felt good coming 2 c the movie .
i, i mean we, loved it
grrrrrrrrrrrrrrrrrrrrr8 movie .
i maybye just maybye i will again b come famous

The piece is not exactly a movie as Lucas likes to call it, but it does feature drawings based on photos taken of Lucas at our house, as well as audio of him talking about dinosaurs and being his usual goofy self. The stories of five other people with disabilities are intermingled with the clips of Lucas. It’s called “Casting Shadows; A video comic installation by E.T. Russian” and is playing at the Jack Straw gallery in the university district.

As you can imagine, Lucas likes being “famous.”  He lit up when he heard his voice and saw his picture projected on the wall.  And as his parents, it feels sweet to see our kid portrayed by an artist who has done such a good job of showing that people with disabilities are full, multi-dimensional people beyond and including their disabilities.  So their art balances this full-person portrayal with also being explicit about showing disability — you can see Lucas’s vent tubing and wheel chair, you can hear his unique speech.  And of course you can see that there are lots of other important things to know about him (read: dinosaurs), too.

The show is up for the next two months — Lucas says we should invite all our friends.  So if you’re in Seattle, check it out!

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.