Lucas Camilo

Lucas reviews his year (or perhaps that’s a recipe for cookies…)

It’s probably true that when your kid is young, ever year that goes by seems like a monumental one.  And that may be especially true for a child with special needs like Lucas.  But as 2012 comes to a close, it appears likely to be remembered as the most monumental of Lucas’s early life (excepting, perhaps 2009, the year he was born).  A list of “firsts” demonstrates this best:

• In March, Lucas made his first ever airplane trip when we moved across the country from Washington DC to Seattle.  If you recall our months of blog posts leading up to the big day you’ll remember how challenging it was to prepare for the flight itself, not to mention everything else that entailed to move a child with a trach and ventilator across the country.  And yet, “we made it!” (as Lucas would say).  It wasn’t nearly as hard as we expected, either… though that could be because everything about “the move” seems kind of like a blur at this point.
  The flip side of the move was that Lucas had to say his first real goodbyes to people who had come to mean a lot to us.  So many wonderful friends in Washington DC made up our community during Lucas’s first years of life.  Fortunately, lots of east coast friends have already visited since the move.  Still, some of the people Lucas got to know best in DC – like his nurses Florence and Victor  – were really hard to say goodbye to.

• Our first order of business after getting settled into our new house was going to the zoo to see Real Live Penguins!  Lucas had been penguin-obsessed for months and part of the way we sold moving to Seattle was by explaining that he would get to visit penguins up close and personal.  It ended up being just as thrilling as everyone had expected.

• Once we made it to the Northwest Lucas also set about getting to know all of his extended family.  Instead of only getting to seeing Burke’s family a handful of times a year, being in Seattle has meant lots of fun times with Nonna, Papa, Aunt Ashley, Uncle Brandon, Madden, Tya, and Ellody.  Then this summer we took our first big trip to Oregon to meet Krista’s cousins, aunts, uncles, and other friends, which Lucas really enjoyed.   And though we’re a state away from Gramma and Aunt Megan, we’ve also gotten to see a lot of both of them, as well.

• In June, Lucas participated in his first public testimony before the Seattle City Council.  Ok, it was actually his parents that testified, but Lucas sat bravely by our side, and later chanted “vote yes!” as we waited for the council to pass a resolution in support of caregivers.  Getting to be part of the Caring Across Generations resolution campaign was one exciting way that we – as a family – got active politically in Seattle.  We also attended meetings and events hosted by the Disability Justice Collective and a newly formed anti-racist parents group.

• In July, we bought a used wheelchair van.  And we started to go to Lake Washington with Lucas… a lot.  These things are connected in that 2012 was the year Lucas became a lot more mobile.  The van meant we no longer had to load Lucas from his wheelchair into a car seat, strap him in, fold up the chair and put it in the trunk… then repeat in reverse upon arrival to our destination.  Around the same time, Lucas became much more open-minded about venturing out and having adventures (as long as the right Casper Babypants song is playing on the van stereo).  There were times in DC where we felt trapped and isolated with Lucas.  The summer of 2012 that really changed, culminating in Lucas’s decision to submerge his lower body into the lake in August.
  All that being said, there were setbacks too.  We celebrated Lucas’s first drive in a powerchair in early June but as the year ends he still does not enjoy the benefits of even semi-independent mobility.  Learning to drive has proved to be difficult for Lucas, especially in terms of finding the right equipment and set up to make it work.  We’ll keep trying in 2013.

• Perhaps his most significant achievement: in September, Lucas started pre-school!  Three and a half months in and it’s not such a big deal to put him on the bus four days a week and wave goodbye as he and his nurse make the trip to Lowell.  It wasn’t that long ago that we wondered if Lucas would ever be able to go school, and imagined that it would be a terrifying/frustrating/agonizing ordeal if it did indeed come to pass.  Instead, he loves it, and we feel extremely fortunate to have found a school that works so well for Lucas… but we also know – based on stories from countless other special needs parents – that tougher times are ahead.

•  In November Lucas made his first trip to the emergency room since he was 5 months old.  That alone is a rather remarkable record for a kid with such acute respiratory issues, but the real miracle was that he only stayed there for less than 5 days.  We don’t need to retell the story of Lucas’s blocked airway, the paramedics, the CPR… how close, in fact, he came to dying.  It’s something no child should ever have to go through, nor any parents for that matter.  But after some lethargic, worrisome days (or weeks?) Lucas is now 100% back to his old self, and we continue to feel relieved and grateful about Lucas’s quick recovery.
  Indeed, the experience of nearly losing Lucas makes just about everything else seem like small beans.  Last night Lucas refused to sleep and kept us both up for hours… I (Burke) found myself lying next to him at 3 AM as he demanded that we read “Chickens Aren’t the Only Ones”, or sing songs, or that I put his head on the “other side” for the 20th time of the night.  And yet I wasn’t annoyed or frustrated.  In fact, it was kinda funny.

As the year comes to an end, our hearts are full in so many ways.  Lucas, and the universe,  continue to introduce us to so many new and unexpected experiences, sometimes even unwanted ones.  And yet somehow we keep finding the people, support, wisdom, and maybe even grace that we need to find our way along as a family.  Thank you all for being part of this great adventure.  And may your new year be filled with compassion, love, and community.

Lucas continues to be high on holiday cheer these days, perpetually in a good mood.  (Even at 3 am, which he recently insisted was a perfect time to read Panda Bear, Panda Bear.)

Susie brought over a just-for-Lucas Hanukkah celebration this past weekend, and Lucas ate it up.  He loves his Christmas lights, but REAL candles on a menorah were even more entrancing.  We all sat on the living room floor with Lucas for the Hanukkah ritual.  Susie lit all the candles, then sang a prayer in Hebrew.  Lucas paid close attention, watching and listening more quietly than usual.  There was a pause when the prayer ended.  And then, as if he’d been waiting for us to get out the menorah for the past nine days, Lucas busted out singing “This Little Light of Mine.”

The next day we were back to admiring our Christmas tree and reading Lucas’ favorite Christmas literature — Dora’s Christmas Adventure.  The book, of course, features Santa Claus.  So despite not owning a television and not going to malls, Lucas has started talking about Santa.  And we can’t help it, we talk about him a little bit, too.  When we heard our friend got a private Santa meeting through the Make-a-Wish foundation, we even spent an afternoon thinking maybe we should try to find Santa somewhere for Lucas to meet.  But we have a strict anti-mall policy this time of year, so it’s been looking unlikely.

On Wednesday we had a follow-up nephrology appointment to do another ultrasound and see what’s happening with the mystery stuff in Lucas’s kidneys.  We rolled out of the house before 7 am in the dark and slushy snow to get to the hospital for an early appointment.  We started off in the radiology lab and when the machinery rolled up Lucas looked a little nervous.  The radiology tech explained to him that she had a camera, was putting some warm jelly on it, and then was going to take pictures of his tummy.  Lucas perked up when he heard “camera,” and said “1, 2, 3… smile!” as if posing for a picture.  He then adapted the game, and did “tummy smiles” for the next 20 minutes as she took images of his kidneys and bladder from the front, sides, and back.  Over and over again, he declared, “1-2-3… TUMMY SMILE!,” and his whole body would twitch a little as he tried to do whatever he imagined a tummy smile to be.  The tech thought the whole thing was amazing, and by the end Lucas had declared his love for her (he’s discovered that he can melt hearts by declaring a big “I LOVE YOU!” to perfect strangers.)

An hour later we met with the nephrologist.  She showed us the images, and we tried to decipher what they meant.  It seems the spots in his kidneys – first identified in the hospital back in November – have decreased, but not significantly.  The good news is that it’s doubtful they’re seeing kidney stones.  The weird news is that they think it’s still leftover debris from the trauma, though they don’t usually see anything like this in other patients who go through similar events.  But the doctor is hopeful that it will resolve itself.  So Lucas came home with orders to keep super hydrated, but nothing more drastic.

Today was Lucas’s final day of school before the winter break, though it feels like he just started last week.  Lucas was excited to take presents to his teachers and bus drivers (he often declares his love for Victor and Anitra, his two drivers).  When Krista arrived to pick him up, he was holding a pin wheel and beaming.  Santa had come to school!  Apparently when first asked, Lucas proclaimed there was absolutely NO way he would go see Santa.  But then other kids dared approach… and, they got presents.  So Lucas got his nerve up and bravely approached Santa with nurse Reiko.  When we asked later what he said to Santa, he grinned and said, “I love you, Santa!”

In turns out our neighborhood is big on the holiday spirit – nearly every house on our side of the block has some sort of colorful outdoor lights display.  For the last week and a half Lucas has asked that we go outside to “watch the Christmas lights,” and if we linger too long on one display then he’ll implore us to “keep walking.”  As long as it’s not raining we’ll wander up and down the street checking out the lights and asking him “aren’t those light pretty?”  And he’ll answer with a devious smile, “ugly!”  Krista got some outdoor lights from her mom and now we also have a big display outside our house, though Lucas thinks it’s ugly too…

Last weekend we finally went and picked up our  Christmas tree with Lucas.  The organization El Centro de la Raza has their annual holiday tree sale fundraiser not far from where we live and we spent some time looking around in order to find “the perfect tree.”  It’s the first time we’ve had a tree larger than 3 1/2 feet since Lucas was born (our basement apartment in DC couldn’t handle much more.)  It looks pretty nice in the corner of our house.

On Monday we fired up the colorful lights and hung ornaments on the tree.  Lucas loved it all.  It’s funny how certain holiday traditions that we did with our families growing up continue, even if we told ourselves at one point in our life that we’d never get into the same hokey stuff that our parents did.  As our friend Tom wrote about his son Benny, “it is easy to get cynical about Christmas, but watching his excitement has made it a fun holiday for me again.” 

One holiday tradition we’ve also incorporated into our lives – though not yet with Lucas – is sitting down each year to write checks to some of the many amazing organizations that are working to make the world a better place.  This year, in addition to our usual social justice/anti-war/international solidarity/immigrant rights/local grassroots groups, we also incorporated a number of groups focused on disability justice, disability rights, and research on myotubular myopathy, the disease that Lucas has.  If anyone is curious, we’re happy to share a list of some of the groups we support.

Lucas had some more ups and downs last week, but thankfully mostly leading toward full recovery. So on Monday Lucas went back to school for the first time in two weeks!  Burke was in DC for 5 days, which was challenging at times but also filled with some fun new games.  Lucas got a new headrest on his wheelchair, which allows him to actually look forward and not stare at the sky/ceiling when he’s out and about.  He seemed very happy with the change, so much so that he broke with routine (and he loves routine) and asked to be wheeled around the house when we got home from our walk.  In fact, he said “run around!”  It was so relieving to see him happy and comfortable, so of course I more than willingly ran and pushed, then pulled on the brakes fast in the kitchen.  And Lucas laughed and gave me kisses and said “run around, again!”  We then added a spin move, which Alice caught on video:

We could not be here, and certainly not feeling as semi-whole as we do, without so much accompaniment, love, support, help, and more love.  The incident that landed Lucas in the hospital was pretty intense so we needed all the support we could get, during and in the aftermath.  Keeping in mind our post on gratitude a few weeks back, here is an incomplete list of the people we want to thank.

Thank you, thank you, thank you to Erin and all the paramedics with Medic One, the Seattle firefighters on Engines 13 and 30, and anyone else who crowded around Lucas in our living room that Saturday afternoon and helped keep his heart beating.  We are grateful beyond the scope of language.

Thank you to our families.   We were both initially out of cell phone range, so thanks to our moms for their diligent work to find us quickly and keep us updated.  We know that being witness to Lucas’s suffering was very traumatic for them, and yet they found ways to be helpful in the days that followed.

Thank you to everyone who visited us in the hospital.  Showing up, especially in the first couple days when there was nothing to say that would make it any better, was probably incredibly hard.  Thank you, thank you.  Our families were there with us immediately.  And then Eli, who drove Burke to the hospital from the mountains, and Heidi, Isham, Olivia, Evan, Aaron, Aimee, Adam, Tyler, and Whitney, who showed up with food and shampoo and hugs.  And then Susie, Emi and Azi, Perla, Alex, Margo & family, others…

Thank you to everyone who called, wrote, texted, commented on the blog or facebook, prayed, etc.  We felt the love.

Thank you to the nurses.  We had amazing nurses at Children’s who were gentle and kind to Lucas and the two of us.  They did the things good nurses should: stacked the routine checks and meds in the night so they’d only disturb Lucas (and us) a couple times in the night; asked us how we did things for Lucas at home, then actually did what we said; and helped us get answers or doctors quickly when we had concerns.  They even noted in their charts that Lucas likes a washcloth in his hand to fall asleep.  One time we were out of the room when he fell asleep, and we came back to find wash clothes in both his hands.

Thank you to the doctors, especially our main attending doctor, Amanda Streigel.  She not only went out of her way to keep us informed, but also brought Lucas a penguin book the day he started to wake up.  She also divulged when she didn’t think the answers we were getting were the right ones, which is always incredibly useful information.  And thanks to Whitney, an ER doctor and friend who performed CPR when Lucas arrived at the hospital. (“Thanks” doesn’t seem like enough for any of the people who kept Lucas alive that afternoon… but there it is.)  And our friend Joel who also works at Children’s and who stopped by and checked with us during the days following the incident.

Thanks to Lucas’s cousins Madden, Tya, and Ella for the get-well art that hung on his hospital walls.  And for the dance party at our house the morning after we got home from the hospital.  Lucas was so happy to see them, and they made our house feel especially festive after four days in the hospital.  And extra thanks to Ashley for coming by so many times.

Thanks to Gramma Susan and Megan for cooking a lot of the Thanksgiving dinner.

Thanks to Kevin and the CCC staff for major food deliveries right after the Thanksgiving leftovers were gone.

Thanks to all the other MTM families, and families with kiddos with disabilities, who reached out to us.

And over the past week, as the acuity of it all has passed, it’s been wonderful to keep getting visits, many still involving food.  Especially soup.  And since Burke has had to be in Washington DC for the past five days for work, those visits have felt especially relieving. Thanks Stef & Mackenzie, Dan & Dana.  And thanks to Auntie Alice for driving up from Portland.

Lucas meets medic Erin on Thanksgiving, five days after they met for the first time.