Lucas Camilo

Like many young kids with disabilities, Lucas has been getting some kind of weekly therapy (in his case speech, physical, and occupational) through the federal “Early Intervention” program since we brought him home from the hospital 2 1/2 years ago.  The program is for kids 0-3 years old, so as suddenly as it all started, the many weekly therapy appointments disappeared the week of Lucas’s birthday.  He’s not done with therapists — they’ll restart in the fall through the school district and other programs — but this change has freed up a lot of mornings and afternoons for us over the last two weeks, and we’ve filled them enthusiastically with many fun summer adventures.

Sadly, the Seattle public libraries were closed for a furlough week due to budget cuts.  But some folks filled part of the void by setting up the “People’s Library,” (an idea that emerged from the Occupy movement), so we decided to take Lucas.  He got really excited when we found some good books, including a book about spiders and another called We Love Dirt.  Now when we read one he says “You got this at the People’s Library!”  A reporter from the Seattle Post Intelligencer happened to be there that day, and Lucas and Krista made his online story.

We took Lucas back to the Seattle aquarium last weekend where he happily revisited some of his favorite sea creatures: the jellyfish, the clownfish, and the seals.  We also made two trips to the zoo.  One was to visit the penguins (of course) and to indulge his newest animal fascination: bugs.  He was particularly interested in the cockroaches (in part because he likes saying “cucaracha”) and he looked far and wide for a dung beetle (“escarabajo pelotero” in Spanish – he’s still working on that one.)

Last Wednesday night we took Lucas back for the Roseanne Cash “Zootunes” concert.  We went with new friends, and Lucas was mostly excited about seeing Azi, the nine-year-old girl who came with us and brought Lucas one of her old Biscuit books.  (Biscuit is a little dog in a series of beginning reader books that Lucas enjoys.)  He paid some attention to the opening band, but their jazz/lounge sound didn’t get Lucas clapping like a good Pete Seeger or Casper Babypants tune would.   He was happier when Roseanne Cash got going, and we took turns picking him up and dancing around.  He looked so happy rocking out as the late summer sun set, and others seemed to notice too.   We got lots of stares from people scattered around us on the grass, though it was unclear if they were sneak-staring because they were shocked/dismayed at all our machinery, or if they were just smitten with Lucas.  Either way, it felt so wonderful to be able to take Lucas to Zootunes and hang out with new friends that the stares really didn’t matter.

Around 8:00, as the sky darkened and the impressive full moon came up, we declared it bedtime and started loading Lucas up to go.  But then the band started playing their most rocking tune of the night, and Lucas got a second wind.  He lit up and clapped to the rhythm as we rolled off the lawn.

We’ve also been back to Seward Park a few times recently, with Lucas continuing to bravely dip his toes in the water.  We even slipped in deep enough that water got in his vent circuit  and caused a temporary malfunction– oops.  Don’t tell the respiratory therapist!

And then on Sunday we got to see Erica, the nurse at Washington Hospital Center who was on duty in the NICU the day Lucas was born.  She and her husband were visiting Seattle, and we met up with them in Lincoln Park, a big foresty area right on the Puget Sound, and laid a blanket out on the rocky beach.  It was great to see Erica again – she and Amy will always be near and dear to our hearts because they cared for Lucas and believed in him from the very first hours of his life. Lucas seemed to know it was time to show off just how far he’s come since then, so he immediately busted out a singing medley of Itsy-Bitsy-ABCs-Mister-Rabbit-La-Granja.  Erica was such an appreciative audience, he might have kept going forever.  Except there were crabs and shells and dogs walking on the beach, so he stopped to admire the wildlife.

Later that afternoon we decided that a good holiday weekend excursion would be berry picking.  So off we went to the only blueberry patch around still open for the season, which happened to be only about 15 minutes away in Bellevue.  We grabbed a couple buckets, rolled Lucas out into the middle of the blueberry patch, and took turns digging deep into the bushes for the last of the blueberries.  Lucas found a nice place to lie down in the middle of it all and got really into the idea of “jumping blueberries,” which involved a dozen berries in a Tupperware container flipping all around (a video of the absolute enjoyment this led to is coming soon.)  Later, Lucas allowed us to stuff blueberries into his mesh baggy – usually reserved for banana – and he spent much of the evening chewing on them as he recounted the day.

And finally, on Labor Day we decided it was time to get Lucas out to a good old fashioned political rally.  (And we’d been looking for a reason to take Lucas on the Seattle Light Rail.)  Predictably, he freaked out at first when we got on the “train,” but after about five minutes of looking horrified and crying huge, fear-filled tears, he settled in and was OK with the train (though talking to Gramma on the phone later he reported that he liked it.)  He had a similar reaction to downtown pedestrian/car/bus/street musician noise, and he begged to go home (his cries to leave are “Van!  New house!  Van!  New House!”)  But then we found an outdoor table at the back of the immigrant rights rally, so he got a chance to lie down and read.  As soon as we pulled out the Dirt book, he settled in and acted like he could stay all day.  Back in early summer, one of our games was to ask Lucas “who’s a little revolutionary?” when we put on his red-star hat.  He’d answer “Lucas is a little revolutionary!” (which sounds something like “Wucas is a wittle wevowutionary!”)  Given that he ignored the rally and refused to even say “si se puede” we gave him a good talking to about his revolutionary priorities on the way home.