Lucas Camilo

Lucas’s 3rd grade school year is coming to a close… which means coming up with lots of summer adventures that will get us out of the house. This is both a blessing and a curse for our family. On one hand, when we come up with brilliant ideas for accessible destinations — like visiting the Point Defiance Zoo and Aquarium in Tacoma a couple weeks ago — and Lucas goes along with it, we can have a glorious time, and forget for a moment all the challenges of having a kid in a wheelchair attached to a ventilator. But then there are those times when the ideas aren’t so brilliant, or it doesn’t matter anyway because Lucas isn’t having it. This is one of our big summer challenges.

We’ve written before about how Lucas can sometimes be a grumpy homebody, refusing to leave the house or do much of anything other than engage with his iPad. We even have a name for this mood: “curmudgeon Lucas.” You can often tell first thing in the morning if we’ve woken up with “fun Lucas” or “curmudgeon Lucas”, and if its the latter you know its going to be a long day. And I get it — being totally dependent on your parents and caregivers for everything you need and every activity you engage in (except for the iPad) would get really old. Amazingly, Lucas never expresses explicit frustration or resentment about his disability. In fact, when we ask him if something is hard — like recently when we were at a park and kids kept coming up, staring, and saying repeatedly, “what’s wrong with him?” — he always defers, saying its no big deal. He even dutifully responds to one kid after another, “I have myotubular myopathy or MTM. I need to vent to help me breathe and talk.”

So maybe “curmudgeon Lucas” is his way of expressing frustration with having to deal with so much bullshit that the rest of us don’t have to deal with. Still, it can be rather exasperating to be on the other end of it, especially when its a beautiful spring day outside and all I want to do is take a 20 minute walk to the park. And the whole time I’m getting him ready he just says “I don’t want to go to the park, I don’t want to do anything!”… but we make it anyway, and then the whole time we’re there he says “I want to go home now, I just want to go hooommmme.”

The upshot is that when “fun Lucas” shows up (or “curmudgeon Lucas” magically transforms into “fun Lucas”) it can be truly wonderful. Such was the case a few weeks ago for the trip to the beautiful Zoo/Aquarium at Point Defiance, about 40 minutes from our home. A few days before Lucas had been watching his favorite nature series (Planet Earth, narrated by David Attenborough) and there was an episode that featured gibbons. Lucas’s face lit up watching these monkey-like creatures swing around on the vines, especially when they let out their warning cry, which he started imitating around the clock (“mmuuwuhhhaaa!”) Then we found out that there were gibbons at Point Defiance, and our Sunday plans were solidified. We ended up spending 4 hours there and Lucas didn’t complain or ask to go home once. At the end of the day he said with a smirk, “this is one of the few adventures that I do like!”

Another such case involved a trip this last weekend to Inspiration Playground in Bellevue, a remarkable accessible park that we had been to a few times before. Lucas complained about going the whole morning, but once we were there he didn’t want to leave. There’s a trampoline that you can basically drive a wheelchair right onto (with a slight lift) and as he bounced up and down Lucas exclaimed, “I… want… to… do… this… FOREVER!” (See pictures below.) Eventually other kids needed a chance so we explored other accessible features of the playground, while Ida got soaked in the fountain and found other fun things to do.

The next morning we were up early (as usual) and the wind was blowing so we headed up to Jefferson Park on Beacon Hill with a couple of kites. Once again Lucas was ecstatic as we watched the Sea Turtle and Poison Dart Frog Kites ride the wind. Though as you can see from the pictures, I’m a sucker for kites and was clearly happier than both of our kids.

There’s a lot more to say in another blog post about Lucas and Ida’s blossoming relationship, but one more story for now. Yesterday after school Lucas was tired and having trouble figuring out what to do. Ida grabbed the aforementioned iPad and brought it over to him. “How ’bout a little iPad Lucas?” she said, proud that she was undermining our efforts to avoid the default activity. “Thanks Ida,” he said, “but I’ve already had enough screen time today.” You gotta love this kid.