Lucas Camilo

We’ve moved into our new place enough to pause and celebrate Christmas (as Lucas says, “the Christmas season”) in as many small ways as we can to make Lucas happy.  And we’re lucky that Lucas is still pretty easy to please this time of year: we’ve been singing Jingle Bells, checking out Christmas lights, and hanging out with family.  And the dinosaurs.  We’re feeling pretty lucky that finding a few dinosaurs in Gramma’s Christmas village was way more important to Lucas than Santa or presents.  We’d like to take credit for raising a non-materialist child, but it seems possible that this is just who Lucas is.  We’ll see what this second child’s Santa-list looks like at 5 years old and get back to you.

We spent the early part of the week with Nonna and Papa and Lucas’s cousins in Seattle.  Lucas recently got into Fancy Nancy books, and Lucas’s cousins are something of fancy-experts, so they brought him some accoutrements (“that’s fancy for ‘accessories'”).  On Tuesday we drove down to Portland to hang out with Gramma, Aunt Megan, and more Hanson family.

We are so grateful to celebrate another year with this amazing, quirky kid.  Happy holidays!!

We use this blog for a lot of things: health status updates, reflections on parenting, bragging about Lucas, sharing what we’re learning about disability… But sometimes we just need to write down everything that’s happened so it doesn’t get lost.  So the themes of this post are (a) look how much we can do, and (b) look how much we can do despite, and sometimes because of, disability!

August is the month to visit us in Seattle.  Our dear, dear friend Sha Grogan-Brown (aka Tio Sha) came to town mid-August, just in time for a hair cut.  Lucas doesn’t usually share his silliest side with anyone except close family, but for Sha he made an exception.  It started the first night Sha was here, when we got out the scissors.  Lucas was a pretty good sport about the haircut, but since Sha had a large wheelchair headrest to contend with, the haircut took a little while.  So Sha started talking up the cutting sounds — “snippy snip” and “trimmy trim.”  Lucas happens to love silly words, and he lit up.  Pretty soon he was embellishing.  “Snippy snip snip snip… trimmy trim trim!”  When he takes any silly word game up a notch he beams with pride.  But each time Sha met him with more silliness, and Lucas would crack up with his huge silent belly laugh.  The snippy snips turned into a whole language that lasted throughout Sha’s visit.

Sha timed his trip to be here for Lucas’s birthday, and it was awesome to have him here as uncle/friend/party-helper since this was our first attempt at a real kids birthday party.  We rented the very accessible and spacious community center near our house and invited kids from school, from music class, from the neighborhood, from our anti-racist parents group, and from our wider circle of disability families, as well as our family.  We were nervous about the party — Lucas often doesn’t love a crowd, plus many of the people coming wouldn’t know anyone else at the party.  But it was a magical success.

The two key ingredients were bunnies and Ben, our musician friend.  Someone in Seattle came up with the brilliant plan of renting out her bunnies for kids birthday parties, and they were as magic as it sounds.  For a while the party consisted of the mayhem you would expect of a 5-year-old’s birthday party: children running (or wheeling) around everywhere with balloons, markers, and smeared cream cheese.  And then the bunny lady arrived.  She said nothing, just pulled out a blanket and opened up her large tub of bunnies.  Suddenly all the attention shifted to her corner of the room.  Kids quietly sat down on the blanket, and she handed them swaddled bunnies with carrots and cilantro.   I had talked to her beforehand to be sure it wasn’t a requirement that kids sit on the floor, and she was ready to hand bunnies off to the kids who stayed in wheelchairs.  It was mesmerizing.

Lucas loved it.  He held 3 week old baby bunnies, lop bunnies, and a mystery bunny named Señor Wobbly who traveled in a basket because he seemed to have low muscle tone, too.  Lucas’s friend Chris convinced the bunny lady that his lap was safe, so she set the bunny down and he peeled out in his powerchair to deliver a bunny to another kid on the other side of the room.

Near the end of the party our friend Ben generously agreed to play a few songs.  He had learned “Here Comes the Sun” that week (Lucas’s favorite Beattles song), and Lucas sang right along.  He also played some Bob Marley and Violent Femmes songs that were new to Lucas, but he loved those too.  In fact, in the days after the party, Lucas talked more about Ben’s music than even the bunnies (this is a kid who 95% of the time shows more interest in animals than humans.)

And two hours after it started, it was over.  And family and friends helped us undo the mess, and Lucas went home to revel in the excitement.  We both felt so glad to have so many people we’ve gotten to know in the last 2 years come out to celebrate Lucas.  And so relieved that Lucas liked it, too.

More photos from the party are below, along with a video of Lucas and his buddy Chris in their wheelchairs, holding hands and watching the music:

Yesterday Lucas lost his first tooth! Krista was helping him brush in the morning and all of a sudden it wasn’t there any more.  It took a while to find it in the back of his mouth, but once we did, tales of the tooth fairy commenced.

As it happens, we’re up at Whidbey Island staying the week with Burke’s parents, and Lucas’s three cousins are also here. They were very excited to be part of this historic event, and helped build the suspense around the famous tooth fairy. Then Auntie Ash made a special-Lucas-tooth-pillow, which we put the tooth in before falling asleep last night. This morning Lucas found in its place a bobble-head turtle and he’s been talking about it ever since.

We’re off for another island adventure today – and speaking of fairies, we’ll be taking another ferry across to the Olympic peninsula to spend the day in Port Townsend. Summer rules.

Yesterday was Lucas’s last day of preschool, and it was the culmination of a pretty spectacular school term.  This spring Lucas has made big strides in his own unique way.  He’s been able to read big words and count and sort shapes and colors forever.  But over the past couple months he’s gained physical stamina so that he can participate more fully in the full school day, shouting out answers in circle time and singing along with his classmates with more volume.   Of course we don’t get to see all that, but we have our eyes (his nurses) who report back to us each day about his remarkable energy at school, even on the days he hasn’t slept much.  And what we get to see is a kid bubbling with excitement as he gets off the school bus.  He’s sometimes so excited to tell us about his day that he’s trying tell us three things at once all as the lift is still lowering him down off the bus.

And after a year of rough starts and set-backs with his power-chair driving (he works on learning to drive 2-3 times a week at school with his physical therapist, Joan), these past few months he has been making major progress.  Krista was able to go a few times to watch, and Lucas showed off the skills he’s been mastering – driving through doorways, following directions, and most importantly stopping.  Of course it’s still at a tortoise pace, and he still enjoys crashing his “tank” into the wall a little too much,  but other than that he’s mastered driving.  He even knows his right and left and will navigate based on directions.  Lucas beamed with pride when Krista told him that he did his best driving ever.  Of course he still hasn’t sorted out his pronouns, so he replied with an enthusiastic “you did your best driving EVER!,” talking about himself.

A few weeks ago we got the news that Lucas did get a spot at Orca, the public K-8 school near our home that we picked out as our top choice for Lucas.  We’re really excited to have Lucas going to a school in the neighborhood, and we’re excited about the staff we’ve met so far.  It feels like the right decision, but it made graduation day from Lowell extra sad.  The staff at Lowell, where Lucas could have stayed for elementary school, loves Lucas so much.  He spends almost as much time with his therapy team – Joan, Kim, Terri, and Elspeth – as he does with his teacher, and all them have gotten to know and appreciate Lucas so much, and they have gone out of their way to help him.

Lucas, never one for nostalgia or transition anxiety, happily told everyone that he was graduating from preschool, that he would be a kindergartner next year, and that he’d be going to Orca.  No big deal.

The graduation ceremony was beautiful in the way any group of 3-5 year olds trying to act in a coordinated way is amazing.  A teacher played pomp and circumstance on the cello as the kids walked, waddled, and wheeled in to the cafeteria.  They sat on the stage and sang three songs, and a few of them couldn’t help but get up and spin around, or do a couple belly flops, or cry.  Lucas apparently belted the songs out in the rehearsal, but with a cafeteria full of parents and grandparents watching through their smart phones, Lucas got stage fright and barely mumbled his way through the songs.   And when his teacher presented him with his certificate, he cried.

Every day before Lucas leaves the house for school he picks an animal to take, and he clutches it most of the day.  Yesterday was no exception, so he was holding his zebra. After a hug did little to console him, his nurse showed him how his zebra was nibbling on his ear, and things got better.  And then Lucas got a present (“you want to open it!!!”) from his physical therapists, and he was thrilled to see it was a Dr. Seuss book.  And pretty soon he was back to making jokes.  One of his favorites lately is to turn anything into a dinosaur name (“librarianasaurus,” or “silly-a-saurus.”)  So yesterday he beamed as he called himself the “Graduasaurus”.

For the first time since we moved here, we woke up to a layer of snow on the ground this morning!  Krista taught an early morning yoga class and got home in time for a still pretty early morning snow walk.  We’re happy to report Lucas’s chair handles an inch and a half of snow well.

Lucas is obsessed with air quotes these days.  He doesn’t understand what they mean, exactly, but he hears the emphasis — maybe even understands the intonation of a question, or sarcasm, or something.  He loves it.  He uses them to make any point, to make a joke, or just to liven up an already celebratory morning.  He heard Burke comment that the snow was nice but not exactly a blizzard, and he lit up.  So we walked around with Lucas exclaiming “It’s not exactly a ‘BLIZZARD’!”  He even insisted that we take off his mittens so he could properly do air quotes while saying “blizzard.”  Of course, it wasn’t until we got home that he asked what “blizzard” means.

We wish you a wonderful winter solstice tomorrow!

Today marks one-year since Lucas was rushed to the hospital and had to be resuscitated.  Last November 17th was a very scary day to say the least. (you can read a series of posts we wrote about the incident here.)

We are regularly filled with gratitude for all the people who surround us and help us raise Lucas.  Family and so many friends.  The online support of other families with disability.  Three preschool teachers, two bus drivers, and one music teacher.  Three dedicated home-care nurses.  Two amazing orthopedists.  Three occupational therapists, two speech therapists, and a physical therapist who does the work of seven. (And a partridge in a pear tree…)  But today we feel so deeply indebted to the firefighters and medics who responded to that 911 call on the afternoon of November 17, 2012.

So this morning we decided to take a trip to our our neighborhood fire station.  We had the amazing luck of finding that three of the four men on duty this morning were the same guys who came and helped Lucas a year ago.  Together with medics they cleared Lucas’s airway and restored circulation of oxygen, performed CPR, stabilized him enough to get him into an ambulance, and then kept his heart going when it threatened to stop on the way to the hospital.

It’s a bit beyond words to try to thank the people who helped save your child’s life.  But they definitely understood why we were there, and they seemed genuinely excited to meet Lucas again under such different circumstances.  Although Lucas had little patience with us talking about why we were going to the fire station, once we got there he was more outgoing than he usually is with strangers.  When we got out cameras, he even showed off some of his goofy “kangaroo smiles” for the firefighters.  But never one for heaps of emotions or chit-chat, he was done with the visit after about 20 minutes.  When we said goodbye and tried to find the words to say thank you, they said that our visit was the highlight of their day.  And that Lucas is invited back any time.

Despite a bit of a cold, Lucas was very excited to go to school yesterday in costume!

Lucas had fun showing off his costume to his teachers, and during physical therapy he did some extra dinosaur spins in his power wheelchair.  He came home and got rested up before heading out for a trip around the block to trick-or-treat with the neighbors.  Since Lucas doesn’t eat candy, the whole “trick-or-treat” part of Halloween was new.  But we figured we’d give it a go, since the social interaction part of the knocking on doors could be fun for him.  We did just a couple dress rehearsals, then started with our next door neighbor.  Dave opened the door, and we all paused.  We gave the “what-do-you-say” prompt, and Lucas said, “I love you Dave!”

He eventually got the ritual down.  A box of Lemon Heads  were his favorite (“it looks like a yellow rectangle!”), since if you shake the box they double as an instrument.

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.)