Lucas Camilo

We’ve taken a while to write about our adventures in Seattle but we’re happy to report that things are going smoothly thus far.  In particular, it’s awesome to see Lucas taking the move so well.  Of course we know he’s a pretty easy-going kid, but he’s also very opinionated.  And he has a history of not liking a lot of things the first time he sees them.  So the fact that he’s taking this all in stride – a new house, new bed, new nurses, new doctors, new almost-everything – allows us to focus a lot of energy on many other aspects of the transition.

One of the “new” pieces of being in Seattle is making new friends.  Over the weekend we went to see the family of a four year old who was also born with myotubular myopathy.  Burke had met the family over the summer, but it was the first time visiting their home in Burien (south of Seattle) for Lucas and Krista.  Lucas was grumpy at first, somewhat unimpressed by Chris’s LTV 950 (the same ventilator as he uses) and other, similar equipment.  We watched in awe as Chris sped his power chair around the uneven terrain in the back yard, but for a while Lucas just asked to go home.  But then Chris got down on the ground with Lucas and showed him his toy school bus.  And Lucas lit up.  Chris was really great – willing to share his toys as well as his swing, and he signed Lucas’s name and even reached out to hold Lucas’s hand a few times.  It was incredibly sweet to see Lucas connect with another kid who’s experiencing life in a similar way, and really great to get to know Chris’s parents.

The other huge adventure in Lucas’s life was a visit to the Woodland Park Zoo to see the “real, live penguins!” for the first time (that’s what he chanted on our way to and from the zoo.)  We made the journey on Sunday morning along with his cousins, Aunt Ashley, Nonna and Papa.  Needless to say it was very, very exciting for Lucas.  He was so happy didn’t quite know what to do with himself other than say “penguin!” and “again!”, hoping that they would swim back by his perch near the water tank.  Check out some video of the magical encounter at the bottom of the post.

Penguins have helped ease the transition, but we can’t give them all the credit.  As we prepared for the move we wondered how Lucas would handle being in a totally different place after getting accustomed to his routine in Washington DC.  We had a feeling that being around family would help, but also knew that he would miss some of the people he was closest to in DC.

Mostly he’s adjusted well to his new surroundings, and seems to be enjoying some of the perks, for example calling for “fire” first thing in the morning on consecutive days last week (we had a number of early appointments so we told him he’d have to wait.)  But on Saturday morning the time was right so we indulged.  After the quick morning med routine, we brought him out into the living room and Burke built a roaring fire.  As Lucas laid back on the couch, perfectly angled so that he could see the fire and most of the rest of the room, he pointed out and proudly said “new house.” Indeed, though Lucas doesn’t yet have the vocabulary to really discuss the pros and cons of this new living arrangement, he’s given other sign of enjoying the new digs. We regularly sing the “Lucas song” in which he gets to insert a thing he loves for each verse.  Normally he just goes through every animal he knows, followed by each species of penguin. (The song can go on forever.)  But yesterday when we asked for another thing — Krista said, “what else do you love?” — Lucas said, “New House!”  And for the next verse, “Fire!”  And then back to “penguin,” “waddle,” etc.

Of course we really miss our wonderful community in DC too.  Fortunately some of you all are coming here soon!  We wish you all could be just a short walk or bike-ride away, popping in regularly to read penguin books or play with the animal cards.  But since the physical space no longer permits such visits, it continues to mean a lot to feel accompanied through this transition.  The move has been relatively smooth, but it’s nonetheless been exhausting at times.  So thank you for keeping us in your thoughts and for the many messages of support and welcome.

Lucas is enjoying his new home in Seattle (and we’re pretty happy with it too!)  It’s got a great layout for a kid in a wheelchair: you can roll right in the front door, the kitchen, dining room and living room are all connected, and the bedrooms are both on the first floor.  It’s also got a nice little back porch which Lucas rolled out on during his first tour of the house.  We just learned that one of the previous owners of the house used a wheelchair which makes sense – the ramp-bridge that goes right up to the front door is just too perfect for Lucas’s needs.   Supposedly there also used to be a ramp that went all the way around to the back yard.  Alas, that was removed by the current owner so we’ll have to carry Lucas down for visits to the garden.

Unfortunately, it’s rained almost the entire time since we arrived on Tuesday night… welcome to the Pacific Northwest!  The upshot is that it’s been fun to stay inside and try out our new fireplace.  Lucas was enthralled with fire the first time it was introduced to him last December but this time around he wasn’t able to pull himself away from the penguins.  But we were happy to hear the crackling and feel the warmth – it brought nostalgia of growing up in this part of the world.  Thanks to Burke’s parents for stocking us with some logs on arrival (not to mention soy milk and other provisions!)

Another one of the good things about our new place is that there’s a sweet runway right through the middle that Lucas can cruise down in his chair.  Yesterday we pushed aside the couch to open up the path for Lucas and Daddy to do repeat laps around the house, popping a few wheelies along the way.  The adventure brought big smiles to Lucas’s face and was another step in getting him excited about his new home.

Back in DC we never actually took Lucas grocery shopping.  The closest store in our old neighborhood – the infamous Best World – was always packed full of people and stuff so there wasn’t really room to maneuver a chair.  So yesterday marked our first ever team grocery shopping trip.  Lucas enjoying racing up and down the aisles and made sure that we picked up some bananas to chew on.

Finally, here’s a video from our first neighborhood walk during the only two hour period all week that it hasn’t rained:

(For those of you who still use the old fashioned USPS for keeping in touch, our new address is 2943 36th Ave S, Seattle, WA 98144.)

Last night at around 9:30 pm Pacific time the three of us set foot in our new house in Seattle for the first time.  The journey wasn’t easy but nor was was it as hard as we thought it would be.  And Lucas was amazing!  He was a champ every step of the way, tolerating the stress of airport in DC, napping during takeoff, chilling out for most of the first few hours of the flight, and then becoming really animated for the last hour or so before we landed.  Nonna and Papa greeted us at the airport on the other end and helped gather our stuff for the trip back to our new house.

We’ll write more at some point about all that went into packing and tying up loose ends in DC over the last week… it was indeed a challenge.  But the hardest part was just saying goodbye.

For now, we just want to thank our many great friends in DC for their wonderful support, and special props go to Sha who took us to the airport, spent 3 hours with us at the gate after we breezed through security, and then accompanied us right onto the plane.

And here’s Lucas’s photo journey.  You’ll notice that his penguins, Roy and Silo, appear in most of the pictures – he clutched them close to his chest for just about the whole trip…

We are so close to being ready to move, and at times just that fact feels triumphant.  We’ve finally got almost all the gear we need for Lucas to travel — vents, suction machines, back up batteries, and more.  We have special permission to fly with Lucas and that equipment from the FAA, Alaska Airlines, our doctors and our vent company.  We have medical equipment, therapists, nursing, and doctors appointments lined up for when we arrive in Seattle.   We’ve already become close to some the great nurses and case managers at our new nursing agency and doctor’s office in Seattle as they help guide us through the trenches in a major battle with our insurance company.  Our moving pod arrived yesterday and our boxes are mostly packed.  We’ve found someone to drive our car across the country (thank you Tom!). And Lucas has learned to say “new house in Seattle,” even though he has no idea what it means.

Every time we ask Lucas if he wants to fly on a plane or live in that new house, he says a defiant “no.”  We assume that’s because he says “no” emphatically to lots of things these days, but maybe not.  Lucas is an incredibly observant kid, and even if he can’t imagine what “new house” or “Seattle” mean, maybe he actually does have a sense of the heaviness of this transition, the sadness in our friends’ and nurses’ and therapists’ voices when they talk about the move.  Or maybe not.  Every time this week that he’s seen someone for the last time, his “bye-byyyyye” has been heartbreakingly non-nonchalant.  And really, why would a two and a half year old understand the difference between goodbye-til-next-week and goodbye-indefinitely?

Lucas says: "Thanks Gramma for coming to town to hang out with me while Mommy and Daddy pack!"

Honestly, we’re not that different than Lucas.  We can picture “new house” and “Seattle,” but that doesn’t mean that it’s registered emotionally for us that we’re about to leave this place and the people that we love so much.  Our amazing friends Alexis and Sha are organizing a goodbye party for us this afternoon, and maybe then it will begin to really sink in.  Maybe proof of the fact that we’re in slight denial is that we haven’t been able to write the follow-up to the last blog post — the “tribute” to our amazing friends and community here in DC.  We may have to wait until we’re on the plane to begin to articulate that love.

Please continue to hold us in your thoughts for these next few days as we go through this major logistical/emotional/psychological/spiritual transition.  If you’re far away, we can use your thoughts and cheering.  If you’re in DC, please come by.  In the spirit of not being afraid to ask for help there are still some moving tasks few things we could use a hand with tomorrow and Monday.   And if you’re free today, please come by our neighbor’s house (1825 Irving) any time this afternoon to help us say goodbye.