Lucas Camilo

Yesterday we spent nearly three hours at the “Occupy DC” protest encampment in downtown Washington DC.  When Lucas first visited Occupy DC, which has been stationed at McPherson Square on K St. since early October, it was still relatively small and very unorganized.  In the last few weeks it has grown to the point that 3/4 of the square is filled with tents, including an information headquarters, food tent, and medical station (using a giant yellow tarp that we donated!)  But what is most exciting, at least yesterday, was the generally festive and hopeful mood of the space – even as complicated and challenging discussions around class, race, tactics, etc are taking place all around.

Lucas was little overwhelmed when we first rolled in.  He didn’t cry but instead slipped into his spaced-out-mode, which is sometime how he reacts to new situations with a lot of people.  People who haven’t met him before assume that he’s tired or non-communicative, and we sometimes overcompensate by encouraging him to respond in sign language.  Yesterday, however, we let him absorb the scene in his own way, and were happy to be approached by our friend Catherine and her daughter Ranvita, as well as another mom and daughter who welcomed us to the space and started a conversation about making Occupy DC more kid and family friendly.  Krista had the idea of doing a “Occupy Halloween” gathering next weekend – complete with trick-or-treating at the tents – which got everyone really excited.  So stay tuned for that!

friends with kids at Occupy DC (Lucas is holding down the Caucus in the background)

We briefly checked out a drum circle, but Lucas was ready to lay down in the grass and commence the “Wheels on the Bus” caucus so we found a nice spot in the sun between a couple of ongoing teach-ins.  More friends with kids arrived, including Rami, Crystal, Hallah and Nadeem, as well as Sha and Matt who were taking care of Rosemary.  Lucas was in a much better mood as the gang sang “Wheels on the Bus” repeatedly, and shared page-turning duties on his current favorite book.  Meanwhile, Burke jumped in and out of a dynamic discussion about how the struggle for immigrant rights relates to the Occupy movement (part of a teach-in organized by DC CISPES).  And more and more friends dropped in on the kids caucus, some of whom had never had the pleasure of meeting Lucas.

For us, it was great to be part of political action in a way that felt truly safe and inclusive for Lucas.  We had previously lamented that Lucas’s disability and medically fragile condition make it hard for us to participate in protests as a family (and if you didn’t know, we love a good protest!)  But as it turns out, Occupy DC is the perfect action for us to join… heck, with a gas generator  now up and running we could even bring our own tent down and spend the night, with proper hook-ups for Lucas’s equipment.  Ok, maybe we’ll hold off on that, but we sure are looking forward to “Occupy Halloween.”

It was beautiful in the Washington DC area this weekend, so we decided to take Lucas out to the fall festival at the dairy farm that delivers our milk and yogurt each week.  It was a bit of a last-minute decision, so we had no idea how wheelchair accessible the event would be, but we crossed our fingers and drove with our friends Max and Jess out into the beautiful rolling hills of Maryland to say hi to the cows.

The event was big and there were plenty of activities that we didn’t join in on, but it was fun to show Lucas some real farm animals.  Despite his major enthusiasm for cows in books and cows in songs, for some reason the live cows didn’t excite him much. (He was unimpressed even before the calf tried to eat his stroller.)  But he loved the stall full of baby pigs, and he was interested in the ponies.  He requested a “dog” at the face painting station, and he surprised us by actually allowing a stranger to paint his face.  But Lucas’s favorite part of the festival was definitely the live bluegrass music.  The minute we got to the festival he started asking to dance, and he managed to boogey through much of the few hours we were there.

Despite logistical challenges of maneuvering Lucas around a farm, there were many sweet moments.  Max and Jess took care of us — getting food and chairs and anything else we needed — so we could take care of Lucas. (thanks!)  Maybe because families were caught up in the myriad of farm activities, it felt like people stared at us less than usual. And yet, we remain conspicuous.  People made room for Lucas to get as close to the animals as his chair would allow – which surprisingly is not always our experience.  One of the guys in charge of the pony rides brought one named “Friendly” over to Lucas so he could see her up close.  There was a moment later when we were trying to negotiate getting Lucas’s chair up into the barn and our four hands weren’t quite enough to do it smoothly, and suddenly another set of arms appeared and helped us lift Lucas’s chair exactly where we needed it.

And at the end of the day, one of the older folks who had been watching the band and watching us walked over to us.  Whenever someone comes over, we get ready for questions and prepare to tell them about Lucas and our equipment.  Which is fine — if we can help demystify childhood disability and medical equipment for people, that seems important enough to answer people’s questions as best we can.  But this man just warmly shook our hands and told us he could see how good we are good to Lucas.  And that was all.

It’s been busy around here again, with Burke gone most of last week to Seattle, and Krista and Lucas holding down the fort.  And by holding down the fort, we mean lots of finger painting, dancing, walks during beautiful, sunny afternoons, hanging out with friends, and coming to dominate the “Old MacDonald” i-pad app.  Nurses Florence and Victor were around a lot and helped, allowing Krista to keep teaching yoga and stay on top of classes (she aced her first anatomy and physiology exam — go ahead, ask her about the kidneys and adrenals.)

Burke had a great trip to Seattle, which he’ll report on later.  He got back late Saturday night, and his parents hitched a ride on the same flight, so Lucas will get showered with Nonna and Papa attention for the next few days.  We all went out to the Occupy DC protest today, and Lucas quickly and repeatedly gave the “all done” sign.  We assume that he was “all done” with corporate greed and extreme inequality, not that he thought the protesters should go home.

Until we have time for more of an update, we figured we share a couple pictures of Lucas’s latest cuteness.  He’s decided that since he loves dancing so much, the stuffed animal puppets must want to get in on the action too.  So when we pick him up to dance, he immediately asks for the pig.  Then the dog.  Then the cow.  So we hold Lucas, and he holds the small barnyard as we dance around the room.  It’s precious.

(PS – Happy Birthday Aunt Megan!)

Have we mentioned that Lucas is still growing?  He’s soooo tall – off the charts, shocking people when we tell them he’s only two.  We have a bed in the back room that Lucas uses the four nights a week when he has an overnight nurse with him.  He’s been pushing the limits on this mini-crib for months now, with his toes sticking out the slats even when he’s lying diagonally.  But we haven’t wanted to buy a whole new bed for him, especially as we’re getting ready to move.  So on Thursday he spent the last night in the old crib (photo at right); the next morning we got a piece of plywood, screwed it down on top of the crib,  threw a two-inch piece of foam on top of it and… voila!  New bed.  It probably looks terrifying to anyone who knows how wiggly most two-years old are, but given his limited movement we can assure you that Lucas won’t roll out of bed any time soon.

We’re proud of our ingenuity, and Lucas seems comfortable on his new/updated bed.  It’s good to be able to build Lucas-friendly accessories ourselves, though we look forward to settling into a place where we can really accommodate things to be accessible and comfortable for him.  And at the rate he’s growing, it feels like the clock is ticking.  He’s about to grow out of his car seat (and ultimately, out of our small car), so next up may be a new vehicle.   However, we’re not sure how far plywood, a drill, foam padding and duct tape will get us when it comes to renovating the old Honda Accord…