Lucas Camilo

It’s been an up and down holiday season for the Stans-Hanson family.  We’ve had some highlights, like the Christmas day walk in the park and the visit by Krista’s family (Burke’s parents arrives tomorrow).  But we’ve also had some big challenges and hard moments.

Burke was gone in mid-December visiting family in Seattle and then doing video at an immigrant rights conference in Montgomery.  In addition to a good time with family he had a few different job interviews while he was in Seattle.  One possibility with a great organization got us particularly excited, even thinking that our move to the Northwest could be imminent if it worked out; alas, it was not to be as they offered the job to someone else.  There are a couple faint possibilities still out there but this setback has us thinking that we’ll have to push back our timeline once again.  Burke is finding that it’s not easy to get the kind of job he wants in Seattle so we’re also getting creative about other possibilities.

We’ve had some beautiful and unseasonably warm days in DC recently, but in general we have felt the weight of winter days that have grown cold and short, with darkness descending all too early.  Indeed, sometimes living in a relatively small basement apartment can start to feel isolating, especially in the depths of winter, and especially given the challenge of Lucas’s health issues.  Over the past year venturing out of the house has gotten easier for us – we’ve become more adept at packing up Lucas and all his accessories, and Lucas is stronger – but on 35 degree days there’s not a lot of allure to go out walking.  With a typically developing kid it would be easy for one of us to jump in the car and zip to a museum, or a cafe, or the library… anywhere, really, to get a change of scenery.  But of course with Lucas such trip involves a lot of planning and preparation, especially because he still needs both of us (or one of us and a nurse) for any major journey out of the house.   Packing up Lucas and his wheelchair, ventilator, suction machine, and emergency bag for a trip, then checking that all the supplies are stocked in the various bags has all become second-nature for us.   But it’s still complicated and time-consuming and all that stuff limits your options of where to go and how long to stay.  So if one of us is working then the other one most likely is staying put in the house with Lucas, hanging out in the same 24 square feet of our living room each day, working hard to make it a fun and engaging place for Lucas.

So despite a few good walks and a party at our friends’ Max and Jess’s place on Sunday, the holidays have done a lot to remind us of our limits.  Flying to the other coast to spend Christmas with our extended families simply isn’t an option, nor is a vacation in a warm place (unless we decide to take a long train ride to Florida).  And now that Lucas’s favorite nurse Florence has taken a new job at a hospital, our options for occasional escapes closer to home are even further limited.  (We’re actually still in denial about Florence leaving so we’re not going to say anything more about that for now.)  Ultimately the winter darkness, combined with the cramped spaces of our apartment, can make the rest of the world feel painfully out of reach.

We don’t mean to complain, and in fact we feel immensely lucky every day to have Lucas with us, and awed by all that he does.  We tend to be pretty positive people (as you can tell by the tone of most of our blog posts) and so we’re also doing a lot of things to make the holidays fun for us and Lucas.  Like making our own refrigerator magnets.  And singing the “birdie song” with Lucas ten times a day while dancing around the living room.  And sitting down to talk about all the amazing organizations that we donated money to over the last week.

Lucas was also made famous on the radio recently… or at least on a podcast :)  Burke helps with a website called The Fight Back and a few weeks ago his friend Pete interviewed Lucas’s favorite radical children’s songwriter, David Rovics. Check out the full post here, and listen to the section preceded by a Lucas-inspired question below:

[audio: https://lucascamilo.com/audio/David+Rovics+short.mp3]