Lucas Camilo

(Burke writing) Krista is off on a 80-mile bike ride today!  Lucas and I were there this morning to cheer on her and about 20 other people as they hit the road.  The ride is the annual “Solidarity Cyclers”, a fundraiser for the Seattle chapter of the Committee in Solidarity with the People of El Salvador (CISPES).  You can still sponsor Krista (or me for that matter as I’ll be joining for day 2) by giving through Paypal at the bottom of the registration page.  Note: Krista will have to explain about the eagle in the picture once she returns.

Lucas is napping now so I thought I’d take a few minutes to reflect on some of our recent adventures.  We’re off to a Mariners game later today so I’m going to let him take a long nap…

As Lucas has embarked on summer vacation we’ve had to be a little more creative about how we spend the days – its amazing how 3 1/2 hours a day, four days a week of school suddenly seems like a lot of time when you take it away.  Lucas still has nurses most weekdays so that helps both of us get our work done, and having someone around to take Lucas out if the other one of us is busy or out of town is also really nice (Krista just spent 4 days in Portland for a wedding and time with friends, for example, and I was grateful to have support from a nurse a few of the days).

Among the things we’ve done lately are trips to the lake (when the weather allows it), the zoo, the library for some Spanish-language readings, a birthday party, and a brilliant two-day excursion to a cabin in the woods near the town of Leavenworth.  The latter was a particular highlight for Lucas as he was able to cavort with dozens of hummingbirds, 3 dogs, 2 horses, 2 donkeys… and we even saw a bear!  Our friends Eli, Lili and Pax were amazing hosts and indeed it’s trips like this that make us very happy to be back in the Pacific Northwest.

The other day Krista and I were talking about how fortunate we feel to be getting out and doing so much with Lucas… and having fun while we’re at it.  Part of it is that we just want Lucas to be able to enjoy his life as it is now – his fascination with animals, books, flowers, fruit in the grocery store, or whatever his latest passion may be.  This is by no means a given.  For one thing, he’s been extraordinarily healthy while many of his medically fragile peers often struggle with frequent illnesses and hospitalizations.  And indeed every time we venture out there’s a certain level of risk involved.  Just yesterday driving home from the zoo we had to pull over and do an emergency trach change on the side of the road since Lucas was having trouble breathing.

There’s definitely some choice and determination that goes into in doing all these outings.  We could, for example, be focusing a lot more on learning to drive his power chair – something that remains a big challenge – or practicing communication with his Dynovox speech device.  But come on, its summer!  Lucas deserves to be out mucking it up with the best of them, even if his style, and methods, and the precautions we have to take, might be a little different.

Meanwhile, Lucas has had a number of appointments with specialists lately – all of which have gone fine – and at some point we’ll do an update on such matters… not to mention his power chair progress and other things he’s working on in therapy.  Speaking of chairs, below is a picture of Lucas enjoying a serene day at the lake in his new push chair, which has been an awesome boost to his mobility and stamina.  And some other recent shots as well…

Today was a big day — Lucas’s last day of preschool, complete with a graduation ceremony, even for the kids like Lucas who are young enough to repeat preschool again next year.  When getting this far is so challenging, you get extra parties!

Lucas was pretty cool about the whole thing, telling people that it was his last day of school, but likely not fully comprehending what that means.  He loves school — sometimes asks to go on the weekends — and he’ll probably miss the amazing team of people who have loved and supported and taught and stretched him this year.  As we prepared thank-you cards and goodbyes for many people at Lowell school, it was clear just what a large and loving team he has, including his two nurses (you’ll see Marquitta, who works on Tuesdays and Thursdays, in the pictures), his three teachers, physical therapist, occupational therapist, speech therapist, and two wonderful bus drivers. His afternoon bus driver Anitra even came by at the end of the ceremony to bring him a “congratulations!” balloon.

Today also marks the four year anniversary of what we called our “shotgun commitment ceremony celebration” back in 2009.  We spent the day surrounded by family and amazing community of friends.  A highlight of the party was a surprise theater piece enacting the “political history of the shotgun wedding,” which was mostly an excuse for our friends to be hilarious, for Krista’s sister to dress up as a pregnant bride (Krista was five months pregnant herself at the time), and to celebrate our values.  Although our community at the time didn’t include many people who identified as disabled, it is pretty clear from the pictures of that skit that Lucas was about to be born into an incredibly welcoming family and community.  We send so much love out to all of you who were there four years ago.  And thanks and equal amounts of love to all of you who have joined our lives since Lucas was born… just two short months after this photo was taken.

In the photo are Sha Grogan-Brown, Mary Grogan, Mackenzie Baris, James Ploeser, the two of us, Carlos Jimenez, Becky Wasserman, maybe Alan Bushnell holding the self-determination sign, and Janelle Treibitz (the brilliance behind the skit, hidden behind us.)

It’s hard to believe we used to update this blog daily.  We miss the more constant blog contact with so many people, but it also feels nice to have so many other things going on in our lives that we don’t rush to write down every one of Lucas’s latest trials, cutenesses, or successes.  (Top cuteness of late: When he heard our  friend Yori play the bagpipes, he loved it.   And he asked “what kind of animal is that?”)

Lucas has been doing really well lately, and we’ve managed to continue to keep his life full of adventures big and small.  Over Memorial Day weekend we went up to Burke’s parents’ house on Whidbey Island and got to spend a couple beautiful afternoons on the beach.  Lucas threw rocks in the water and even put his toes in the frigid Puget Sound.  On Saturday his cousins came, and he flew a kite with Tya and Ellody while Krista and Madden took a horseback riding lesson together.  (See pic below of Krista relishing the incredibly nostalgic ride.  Krista grew up with horses.)

Lucas has had an ongoing slight cold, enough that he had to stay home from school for a couple days in late May.  Both days he seemed healthy when he woke up (every morning Lucas gets all his vitals measured by his nurses at the start of his shift), but when we put him up in his chair to get ready to get on the school bus, suddenly his eyes went dull and he looked like he was ready for a nap at 8:30 am.  The fact that he missed a couple days of school mostly highlighted for us just how healthy he has been — it is common for all children in preschool to get sick, and kids with trachs and vents (direct paths for germs into the lungs) tend to get more severe respiratory illness.  So once again, we’ve felt lucky about how healthy Lucas has been.

And finally, Lucas is going to wrap up his school year next week!  It’s hard not to use cliches to write about how fast this year has flown by.  Maybe even more amazingly, Lucas has his last-day-of-school celebration on June 13, on the four-year-anniversary of our celebration – with many of you – of our relationship, commitment, and coming baby!  That beautiful day on the farm in Virginia feels like another lifetime ago.  Or maybe just a few days ago.

Despite having this blog and his own iPad, Lucas is a bit old fashioned when it comes to communication.  It turns out he loves getting snail mail.  (It started with a card from his wonderful physical therapist at school, then another from a speech therapist.)  So if you want to congratulate him on his first year of school, send him a card to 2943 36th Ave S, Seattle, WA 98144.

Here are some pictures from Memorial Day weekend: