Lucas Camilo

Last weekend Lucas made his first trip to Oregon!  On Friday morning we packed Lucas and all our travel gear into the car and made the three and a half hour drive to Beaverton, where Krista’s mom lives.  Given all the outings we’ve reported on lately, this may seem like no big deal, but it’s still a really long drive for Lucas as he gets tired sitting up for extended periods of time.  But he did great, and we arrived at without a hitch.

Besides wanting Lucas to get to see Gramma’s house and the great state of Oregon, the main reason we went was so that Lucas could meet his extended family and our friends in Oregon.  So on Saturday afternoon Susan hosted a backyard party with fifty or so invited guests – mostly the Hanson family and old friends.

(A background note: Three years ago at this time, when Krista was still pregnant, we planned a backyard party at Susan’s house to celebrate our relationship and coming baby, a sort of post-commitment-ceremony west coast reception.  Susan made all the decorations, ordered the cake, bought the beer…  But then Krista went into labor on the plane ride to Seattle and we never made it to Portland, and then Lucas was born and the rest is history.)

So we were excited to finally be making it together – now with Lucas – to Oregon.  But we were also a little nervous about the whole thing since Lucas often (understandably) clams up in high-pressure social situations, preferring to stick his nose in a book to trying to interact with a stream of new people.  We even went so far as to warn people that even though they’d been waiting nearly three years to meet Lucas, he might not act very excited to meet them.

But then he proved us wrong.  All of Krista’s aunts, uncles, cousins, and old family friends, college friends, solidarity friends, and more came out to hang out and celebrate meeting Lucas.  And Lucas greeted just about everyone with a  “nice to meet you!” – having recently learned the phrase – and he soaked up the attention.  He seemed to really enjoy getting gifts (as a kid who likes the familiar, he hasn’t cared about presents much in the past), and he especially loved gifts that involved stickers, the alphabet or Nemo.  He loved meeting his two-year-old second-cousin Mara, so much so that he seemed unfazed as she took away his new stuffed Nemo over and over again.  He was happy about all the people who knew about his love of books, and he happily read stories with with anyone who sat down next to him.  Lucas even agreed to go outside and sit in Burke’s lap for a while on the deck (usually he would insist fairly quickly on returning to the couch to read books).

Of course we want Lucas to be able to be fully himself, even if that means he is sometimes an anti-social bookworm.  But it was really wonderful for us to see him so happy and social as we introduced him to so many new people.  At the end of the night as we tucked him into bed, Krista told him what a great job he did at the party.  Lucas responded with, “The people said, ‘nice to meet you!'”  And we told him: yes, he has many people who love him… and yes, they are happy to meet him!

Today we went to the Seattle City Council to testify in favor of the Caring Across Generations resolution which we mentioned in our last post as part of a broader campaign to push for better wages and benefits for the growing industry of direct-care workers, while also seeking to strengthen support and programs for people with disabilities and the elderly.

Lucas took an early nap and since his nurse was out sick for the day we decided to bring him downtown for the hearing.  The three of us joined over a hundred people from various organizations who were there to wave flags and hold up thousands of postcards signed in favor of the resolution.  Lucas was in great spirits too – he got his own sticker and repeated over and over throughout the testimony “vote yes!”  He also brought along his Elmo sticker book in case they ran out of Vote Yes stickers.

Here’s what we said to the council:

We’re here today to talk about caregiving and our son Lucas.  He was born in 2009 with a rare neuromuscular disease called myotubular myopathy which causes him to have extremely low muscle tone.  He has a tracheostomy, uses a ventilator to help him breath, and receives all of his nutrition through a g-tube.  He’s also an amazing, funny and loving kid, but his medically fragile condition makes his life – and by extension our lives – very complicated.

Caregivers have played an important role in our lives over the last 2 ½ years.  Because of his complex needs and the risk of respiratory failure Lucas needs one of us or a vent-certified nurse to be with him at all times.  It’s hard to imagine not having home nursing and yet its been a struggle to get coverage for it– either through private insurance or support from the state – as well as other services that Lucas relies on.  Meanwhile, in our experience we have seen that the amazing nurses that help care for Lucas do not always receive health care benefits themselves, or a wage that properly values the work that they do.

We hope to someday live in a world where kids like Lucas get the services they need while at the same time the dedicated individuals who do the day-to-day caregiving for people with disabilities are valued and properly compensated.  The Caring Across Generations resolution is one step in the right direction, and we will continue to be part of the campaign for state and federal legislation that both ensures resources for long-term care and brings dignity to caregivers.  Thank you.

Congratulations to Washington CAN!, Caring Across Generations, SEIU, our friend Susie (the lead organizer on the campaign), and everyone else involved!

Lucas shares flower spells with Nonna and Papa

Lucas has been getting lots of quality time with his extended family lately – stop-ins from his cousins and Aunt Ashley, a visit from Portland by Gramma Susan and Charles, and multiple reading/fetch sessions with Nonna, Papa and Bruno (the annoying dog who travels everywhere with Burke’s parents).  Lucas really enjoys having his family around, as everyone brings something different to the table.  Aunt Ashley teaches him sayings like “hang loose!” and “cool, dude!” which he repeats with relish; Madden, Tya and Ellody are a whirlwind of energy that Lucas (mostly) enjoys observing; Gramma Susan is a tireless reader who also introduced him to a great set of flashcards; Bruno plays fetch (for a few minutes at least – he doesn’t have much endurance); Nonna knows all the names of the flowers we find in the neighborhood and can quiz Lucas on them; Papa also reads lots of books and is a darn good speller (something Lucas very much admires).

Hanging with Gramma and Charles by Lake Washington

The recent Susan and Charles trip was highlighted by the aforementioned flashcards which Lucas preceded to devour.  For a 2-year old Lucas has a remarkable appetite for words and spelling.  Whenever he meets someone these days he quickly tells them the first letter in their name; he also prides himself on knowing more than a dozen penguin, shark and hummingbird species (respectively), and he’s well on his way to identifying all the flowers in our neighborhood.  What seems to drive all that is a love of words, something especially remarkable in a kid who doesn’t have the strength in his facial muscles to fully form most words.  At any rate, it was no surprise that Lucas was so excited by the flashcards.  Within 24 hours he had memorized all 44 cards, able to spell and identify each word.  Gramma Susan would hang him a card, quiz him and then upon getting the correct spelling he’d slam it down and exclaim “anuh-der one!”

Finger painting with Madden!

Krista was gone on a 80 mile bike ride this weekend (more on that later) so Burke’s family came over for Father’s Day brunch.  As often happens when other young kids are running around, Lucas at first buried himself in a book to avoid the commotion.  But eventually he sat up in his chair and got into finger painting with his cousins.  The whole gang went to the park together and Lucas enjoyed watching the frisbee get tossed around on the beautiful, sunny date.

With Friends at the Caring Across Generations resolution City Council hearing

This last week featured a number of other exciting events.  On Tuesday, while Lucas was home napping with his nurse, we went down to the Seattle City Council to support a resolution around caregiving that was drafted by the national Caring Across Generations campaign.  The campaign – which we originally joined back in DC – has a well-conceived strategy of bringing together caregivers with those requiring long-term care.  It demands better wages and benefits for the growing industry of direct-care workers, while also seeking to strengthen support and programs for people with disabilities and the elderly.  Burke was set to testify but the time ran out; we plan to return in another week for the full Council hearing in which one of us will testify.

Then on Thursday we took Lucas to his first play, a production of the Hungry Caterpillar (and other Eric Carle works) at the Seattle Children’s Theater.  At first Lucas was totally put-off by the scene at the theater and we only avoided a total meltdown because we happened to bring a book that he could bury himself in.  Once the lights dimmed and the colorful puppets came out Lucas settled down, and from the comfort of Burke’s lap he watch the entire play through.  He even predicted certain parts of the play that he knew from the book, shouting out “2 pears!” or “4 strawberries” before the fruit appeared on stage for the hungry caterpillar to eat.

Finally, Krista hit the road early Saturday morning for a 2-day, many-mile bike ride.  The annual Solidarity Cylers ride (the traditional of which we helped start back in DC) was a fundraiser in support of the local Seattle chapter of CISPES (it’s not too late to donate!)  The riders cruised across Bainbridge Island and stayed at a historic camp for anti-nuclear activists called Ground Zero.  The ride was wonderfully successful – bringing together people with all different levels of experience with cycling (this ride included a nine year old on a one-speed Huffy) to enjoy the outdoors and the great company of other activists, all while raising money for a great cause.

And for an encore this evening we made our way out to a party at the 41 Legs Urban Farm which our friends have started here in Seattle just a couple miles from us.  On their small urban plot they have a greenhouse, many raised beds, flowers, rabbits, ducks, chickens, and pigs.  Lucas loved checking out the flowers and all the animals, but he was especially smitten with the dozen or so ducks and Babette, the pig.  And on our way home, Lucas remembered the date and (with little prompting from Mommy) told Burke that he loves him very much, and “Happy Special Daddy Day!”, and that he’s his “favorite Daddy!”, and the “Best Daddy in the World!”

We did a second test drive yesterday in the “Special Lucas Car.”  He didn’t exactly tear up the streets but it was exciting once again to see him exploring the functions of the power wheelchair, albeit extremely cautiously.  He’s a cautious guy, after all, and we remain proud (not to mention surprised) that he’s been so willing to jump into it on his first couple practice drives.  The next step is to find a big open space where he won’t have to dodge moving cars…

Here’s some more recent videos of Lucas being Lucas.  First, his patented “beard rub”:

Lucas singing the ABCs all by himself:

Meanwhile, during our drive up to Burke’s parents place on Whidbey a few weeks back Lucas developed a strong affinity for Elvis.  “Hound Dog” is his favorite:

Also on Whidbey, Lucas enjoyed some guitar music at the Greenbank Farm.  With help from Daddy he shows up another patented move, the “Camel dance”…

Big news: Lucas drove himself around our house yesterday!  It was a strange moment – at once monumental and anti-climactic.

Perhaps we should give a little background.  For families of kids who don’t walk, the first time your kid drives around in a power wheelchair is the semi-equivalent to your child’s “first steps.”  It’s something that marks the beginning of a radically different orientation to the world: the ability to go and check things out, to choose where and when and how fast you get there.  Like “first steps,” it’s something you know is coming, that other families (or in our case, therapists) talk it up for months before the occasion.

But, unlike the magical “first steps” that just happen, the first drive is an extremely planned and facilitated undertaking – usually under the supervision of multiple therapists and professionals, often in an institution that acts as wheelchair vendor.  For us it’s been a years-long process that included moving into a wheelchair accessible home, researching the market to understand what chairs might work for Lucas, finding the professionals that can help us fit Lucas to a chair, working with our insurance company to ensure that it will be covered, looking for a wheelchair accessible van, etc, etc.

Three weeks ago we had our first try when a vendor brought a power chair to the house for Lucas to try.  Like many things he encounters for the first time, Lucas absolutely hated it.  He did fine sitting in the chair when it was turned off, but the minute we tried to move it he threw a fit.  We sighed and imagined we were in for a summer of slowly, slowly acclimating Lucas to power chairs so that maybe by August or September he’d be willing to try driving.

The vendor called last week to say he’d found a loaner chair for us.  We planned a time when we both could be here to learn how to use it so that, when Lucas was ready, we’d be able to help him try.   Kevin came with a scrappy looking chair — a kid-sized seat literally strapped to a giant adult-sized base.  It looks funny and awkward, but we figured we’d put Lucas in it just long enough to measure where to put the controls so he’d be able to reach them.

We’ve found that calling something the “Special Lucas —” makes it more appealing (the hammock outside our house is the “Special Lucas Swing,” the newest stationary seating devise is the “Special Lucas Chair”, etc.) so we told him he was going to sit up in the “Special Lucas Car.”  He was not immediately sold, but he repeated slowly, “special… Lucas… car.”

And, miracle of miracles, when he got up in the chair this time, Lucas liked it.  He smiled and recited his favorite book while Kevin adjusted the joystick.  Then – surprise again! – he touched the joystick (at this point the power was still off).  When all the adjustments were made, we figured we’d push our luck.  We turned the chair on and let Lucas touch the controls again.  The chair gave a small lurch, and Lucas was unfazed.  He hit it again, and another small lurch.  And then he said “hummingbird!”

So we helped him drive into the kitchen to look out at the hummingbird feeder.  Then we suggested going outside (since it took just 20 seconds of indoor driving to put the first dent in the wall), and we all went through the door, over the ramp, and ended up playing stop-and-go on the sidewalk.  Lucas did great — he was pretty clumsy, but so were we trying to figure out how to steer with a hyper-sensitive control system.

There we were on a beautiful afternoon, standing in front of Lucas calling “come to Daddy!”  He tried, slowly motoring forward and diagonally and then around in a tight circle.  And before we could revel in the glory of it all, Lucas said he was done.  We helped him drive back inside, took him out of the chair, and turned it over to Kevin for a few minor adjustments.  And then it was time for dinner, and Lucas urgently needed to get back to his current favorite book.