Lucas Camilo

We made it on the road in the RV and below is what Lucas had to say about it in his few minutes of blogging this morning. As you can see he’s already assigning aliases from the show Splash and Bubbles to all our friends who we encounter along the way:

yestrday we started our roadtrip!
i miss reef town already .
we drove for 4 or 5 hours wich is about the same
lenth drive as today.
we went to deni & mories aka anti alice & andrews
house .

It wasn’t easy driving to Vancouver to pick up the RV, then back to Seattle to load up gear and family, then hitting the road in the midst of Friday afternoon traffic only to arrive in Portland at 8:30 pm. But our friends Alice and Andrew were waiting with good food and margaritas which made it all worth it. More soon…

The dino family RV is back! But this time the destination (and nicknames) don’t have anything to do with dinosaurs. Allow Lucas to explain:

i am leaving reef town in less than a week

we are going to the redwoods.

in an Rv the same one as last summer

we are going to see our friends daniella, & gabe & rafi

& layla.

i am excited about the realy big trees

i bet ripple will miss his 499 or shoughd i say 498

beacause 66 is lost & gone.

Hmmm… that probably didn’t make that much sense after all. You see, last year when we traveled to Canada and Montana in a wheelchair-accessible RV Lucas was still completely obsessed with dinosaurs. So we all gave ourselves dinosaur names and made dinosaur road trip shirts. 10 months later he’s moved on from his obsession with Dinosaur Train the TV show and has a new favorite: another PBS kids show called Splash and Bubbles. So now we’re all characters from that show — Splash (Lucas), Bubbles (Ida), Dunk (Krista) and Ripple (Burke) — and Lucas is pretty militant about us only calling each other these names. In fact he’s been insisting that everyone at school call him Splash too. All these characters live in a section of the ocean called Reef Town and sing somewhat annoying songs like “Reeftown Rangers” and “Rhythm of the Reef.” My character Ripple is a sea horse who has 499 brothers, one of whom (#66) is always missing. I hope that helps you decipher Lucas’s blog post!

Anyway, we’re heading out on Friday and will make it as far south as Leggett, California, in the heart of the redwoods. Some friends from the Bay Area are coming up to meet us and hang out, which should be a blast. And Lucas will be blogging (just like last summer) so look out for some updates over the weekend and all next week!

If you’re a long-time reader of Lucas’s blog you’ll remember than way back when Lucas was a baby — struggling with frequent, complicated health issues — he had already developed a deep appreciation of music. You could see it in his eyes when a song he loved came on; there were certain ones (I’m thinking Elizabeth’s Mitchell’s “Three Little Birds” and They Might be Giants “Pictures of Pandas Painting Penguins”) that we had to play over and over again at Lucas’s request. Then there was the Caspar Babypants period around 3 years old when all we could play in the van was Seattle’s local punk-rocker turned kids musician, especially his version of Pete Seeger’s “Mister Rabbit.”

For a kid with very limited ability to move his body and get around, listening to music is one of those things that is perfectly suited to his way of being… he just needs to demand enough times that we turn on his favorite album and then he can just kick back and enjoy it. (In fact, now his iPad is set up so that he can choose all of his own songs and albums which takes things to another level.)

It’s especially wonderful is that he’s passed on this love of music to his sister, and Ida will sometimes sit on the couch by Lucas singing along to one of his favorite songs… because she, like the rest of us, has heard it so many times. She also loves the old classics, as evidenced by this recent performance by the lake that I caught on video:

Lucas’s current favorite medium for music are his self-crafted playlists, which he constructs around a specific theme and calls “greatest hits.” The first (of course!) was Lucas’s Dinosaur Greatest Hits, released in late 2015 to critical acclaim. Next up was Bugs Greatest Hits released in 2016, followed by the Ocean Greatest Hits (parts 1 and 2) released in early 2017. Lately his been on a role, having released Lucas’s Space Greatest Hits, Little Critters Greatest Hits, Big Critters Greatest Hits, Birds Greatest Hits and Vehicle Greatest Hits — all in the last 2 months! The album cover for the space album is included for your pleasure, and all of these are available as CDs (if you still own a CD player) complete with track listings. They are expansive, masterful compilations of children’s songs, if I do say so myself.

Lucas not only loves to listen to music but increasingly enjoys singing. We’ve been part of the Columbia City family choir since 2014 but when we first joined Lucas didn’t sing along very often (here’s a previous blog post about Lucas and music that talks about our early days in the choir). Now he often pipes up and shouts out his favorite songs, and not just at choir. He has the uncanny ability to memorize song lyrics after just a few listens, and can often be heard singing to himself while resting on the couch after a long day at school, or in bed at 6 am while waiting for his parents to wake up. On those occasions I’ll come into his room, half awake, and he’ll say “Daddy! I was just thinking about the Little Critters Album and how the monkey section should come after the frog section but before the racoon section!” “Sounds good, buddy,” I say as I snuggle next to Lucas in a fruitless attempt to get him to go back to sleep. “It’s your album. But can we wait until the sun comes up to work on it?”

One of Lucas’s recent discoveries (thanks to the Seattle Public Library) are the Sandra Boynton albums that come from some of her famous books, in particular “Philadelphia Chickens” and the country album “Frog Trouble.” The other day Lucas and I decided to record ourselves singing some of the songs and here are a few clips, including Ida’s favorite song “Snuggle Puppy.”

Some of you have heard about Lucas’s famous video writing/making/performing debut – here it is! The rapidly-going-viral “What To Do and What Not To Do.

We are so proud of Lucas and Mira for creating these videos (with support from the speech and occupational therapy team at school.) This past week Lucas and Mira presented this to their classmates, and then led their friends in role plays to practice the friendship/communication skills. Mira’s mom and I were in the back of the classroom watching so proudly. After watching the videos, their classmates came up and – with all the earnestness, nervousness and goofiness of seven and eight year-olds – they reenacted the scenes. It was fantastic.

And honestly, it was so incredibly exciting for me to see his school therapy team so beautifully and creatively broadening the understanding of “speech therapy” to include coaching for all of Lucas’s friends. He can work and work and work at communication – and he does try hard – but as long as his friends and peers don’t get support in learning how to communicate with Lucas, he’s going to be left frustrated. Burke and I have been sure that the broadening of the “therapy” to include typical peers would be beneficial to everyone, but we weren’t sure exactly how it would look. So it meant a lot to us to see Mira (with the support of her parents) enthusiastically dive into the project. She and Lucas both looked so proud at the front of their classroom when they presented.

And, if you didn’t see it the first time, watch the videos again to see how happy Lucas is. His nurse had been telling me about how much Lucas enjoyed acting. If you can’t see it in his face, watch his hands — they do an almost involuntary flapping that happens when he’s really, really happy.

We’ve been flying kites a lot lately. Lucas loves it, and we’ll built up quite a collection of cool kites which were especially on display at our recent spring break trip to Long Beach, Wa. (We never got around to blogging about that adventure, but you can check out some pictures — which include a lot of kite flying and a visit to the kite museum– below.)

Then last weekend we were up at Whidbey Island and there was a big wind so we pulled out our favorite new kite, the poison dart frog. I’ll let Lucas take it from there:

the story of flying the poison dart frog kite by whidbey island on the
greenbank farm.
we saw 2 horses named diomand and moonlight just FYI .
anyhoo
nooooooooooooooooooooow this is the story:
me & my daddy were flying the poison dart frog kite.
sudenly, the string BURST from our hand ,
skited acros the field ,
then it bumed into a car,
then it skiped acros the pond
finaly its string got stuck in a tree & then it got stuck on the
powerlines .

That’s right, despite the fact that we were set up a couple hundred yards from the nearest powerlines the escaped kite eventually flew far enough that the string got wrapped up in the lines right across from my parents house. We didn’t want anyone to get electrocuted so Lucas stood guard, watching the kite still flying high about the powerlines, and I called the power company to come deal with the situation. Eventually we left and presumably the dart frog was rescued but then confiscated by the power company. Here’s some video of the scene:

It hasn’t stopped us though… more kite flying adventures soon to come!

There is something so acute about life with Lucas – I want to hold on to each sweet moment, knowing life could get harder. And yet, so many amazing and hilarious and dull and tiring and then deeply awesome moments have to slip by without documentation because life keeps moving before we get a chance to sit down and write. Like spring break. It was amazing – we went to Long Beach and flew kites and saw sea lions and once again created an accessible adventure for our family. In fact, these days I am constantly convinced that this moment of parenting Lucas is the best yet. (You may already know this about me, but I am prone to hyperbole. I am also sometimes convinced that parent-caregiving is sapping the life-blood out of me and that I will never get enough sleep to hold a regular conversation. More on that another day.)

One of the most moving things about this moment in our Lucas’s life is that he has become so expressively caring about Burke and Ida and me. When I come home from my yoga class, he asks, genuinely, “How was your yoga class Mommy?” On the nights that Burke or I go to a class or meeting that keeps us out past his bedtime, he asks us about it in the morning. I’m pretty sure he doesn’t actually care about our answer, but that he is asking to demonstrate that he’s paying attention and caring about us as more and more “equals” in the family. It melts my heart every time.

A few days ago Lucas didn’t have a nurse on a school day, so I was with him all day long. I went to school with him in the morning, then brought him home midday so I could take care of him and Ida in the afternoon. I tried to make a little more “learning” happen at home, so I gave him a writing assignment. Creativity isn’t his strength – he likes research and the telling of facts – so I gave him the assignment of writing a list of five things he liked about our spring break. I set him up at his computer and went to the kitchen to clean up from lunch. Lucas proceeded to type in hundreds of nonsense characters (ie: 11111111111//////???11111111111/////, ten time over.) Then he hits the “read” function, and it takes his computer forever to read through it all. I got frustrated with him – this is his classic delay tactic when he doesn’t want to write. I erased it all. Went to the kitchen and he started to write a list. “1. I liked….” Then I saw him erase it and proceed to the nonsense-character-stall tactic again. I went over, turned off the volume and sat next to him and helped him think of three things to write on the list. I walked away, and he repeated his resistance tactics.

I got mad, and we ended up in a power struggle. I rarely get mad Lucas, and I hate to admit that there was something that felt good about the whole situation. I am the adult here! I can set boundaries and force my kid to practice things that are hard-but-good for him! But the truth is it’s not actually how I want to relate to Lucas. Even if it is my job to sometimes push him, I don’t want to do it from a place of power-over and frustration.

We made it through, and we found something of a compromise – Lucas doing the bare, bare minimum to meet my requirements; me enforcing the time limit I had set for his computer time. As soon as he finished writing, I told him it was time to shut his computer down since he had used all his computer time messing around on the writing exercise. He generally only writes on his computer because we tell him he has to before he can play his games, so this level of harshness from me took him by surprise. I could see him get sad, and it broke my heart. I probably would have caved and let him play if we hadn’t had a real-life timelines – I had to get him down and changed and fed at that moment if I was also going to have time to feed and change Ida and get all of us out the door in time for family choir. I could see his chin start to tremble as he tried not to cry. I felt terrible as I disconnected his vent so I could pick him up out of his wheelchair and lie him down on the couch.

In these transitions, when he is briefly disconnected from a ventilator, Lucas doesn’t have the air to speak. We’ve developed a few thumbs up and clicking signals he can make to communicate in these moments – sometimes we tease him about something, then tell him to give one click for yes and two clicks for no. This time, as I picked up a near-to-tears kid and held him in my arms for a second before I set him back down on the couch, he blew me a kiss.

And in an instant, as if he had hit a reset button, he shifted everything. I set him down and connected him to his ventilator. And I gave him a hug. I was so floored and humbled and yet not at all surprised that in a power struggle, my stubborn, determined Lucas was also the more patient and zen of the two of us. He softened and forgave me first.

I worry all the time about how disability plays into all of this. Power struggles are all the more complicated for us, since I am not only the adult, but also the physically able one, the one on whom his life depends moment to moment. Part of me worries that he has to forgive me quicker than a kid who could wrestle the tablet out of my hand and run away. I’m not just his mom in this situation, but also his arms and legs and caregiver. I hope one day he can read this and reflect back and tell me what he thinks of my parenting.  (And I hope I’ll be open enough to listen.)

I am pretty confident that we’re doing a good job holding all this. He knows Burke’s and my love is unconditional, and that certainly our life-maintaining caregiving is absolutely unconditional. I am pretty sure that even though these power dynamics are real and unavoidable, Lucas is confident that he can be fully himself with us. There are times when he is not all sugar and sweetness (his stern “Get out Mommy!” comes to mind – usually when he’s excited to have Burke read him his bedtime story and I joke that I’m going to take over). Anyway, when he blew me that goofy and forgiving kiss, I felt so deeply lucky to be able to know Lucas so intimately. He is truly exceptional.

And he really did immediately shift his mood. I helped him get a book to read on the couch while I did his care and got Ida ready. The three of us somehow made it out the door and got to family choir on time. And Lucas was not just feeling OK by then, he was in a spectacular and goofy mood. He talked more in choir than ever before, joking with the choir director and making up new song lyrics with her. He was so proud of our new lyrics (“This train don’t carry no fuzzy bow-wows”) that he insisted that she tell the band that we had heard play the song about our new verses. He told some fart jokes, talked about dinosaur fossils, and when we sang Lucas belted out – Lucas style – his favorite songs.

As Congress prepares to vote on the horrible Republican bill to “repeal and replace” the Affordable Care Act it seems like a good time to tell Lucas’s story again in the context of health care reform. You see, back in 2009 when Lucas was in the  NICU after being born two months early, we took a crash course in the failures of the American health care system right as Congress was debating what would become known as Obamacare. It was kind of surreal – we were living in Washington DC, the Tea Party was on the rise and rallying against what they called “socialism” (if only!), Democrats were watering down what was an already insufficient health care reform bill… and Lucas’s future as a medically fragile baby without a diagnosis was very much in flux. But there was one thing we knew for sure at that point: our family was going to be all-too dependent on doctors, hospitals and the insurance industry going forward, and the system we were already immersed in desperately needed to be improved.

We had a lot of time on our hands to ponder and write about what was going on — back then we used to publish multiple blog posts every week, sometimes every day. One of them that I recently re-read was called Hating the health insurance industry in which we explained in exhaustive detail the hoops we were having to jump through to get Lucas the care he needed, concluding with this paragraph:

And of course we’ll work not just to benefit Lucas, but also advocate for a health care system in this country that takes care of everyone’s needs. And we’ll dream of the day when we can take “Resistencia” T-shirts to all of Lucas’s doctors and they’ll get excited about the idea of hitting the streets to expand a vibrant, holistic, high-quality public health care system. And we’ll dream of Lucas out there will his fist raised too.

We’ve done our best to keep our commitment to the struggle for healthcare for all, and in the seven and a half years since we wrote those lines he’s been in the streets with us at dozens of demonstrations, including a rally in downtown Seattle on a cold day this past January alongside thousands of people demanding that the ACA be preserved.

In March, 2010 when Obamacare finally became law, we wrote about the ways in which it was immediately going to benefit Lucas and our family (even as we lamented how the bill should have gone further.) In particular, we celebrated the provisions which eliminated lifetime insurance caps and made it illegal for insurance companies to deny coverage to children with pre-existing conditions. We also recognized that the expansion of Medicaid was likely to benefit many poor families and people with disabilities, in particular families of kids with disabilities who didn’t have the same level of financial security that we were fortunate to have.

In the years to follow, millions of people got health care coverage that literally saved lives and made it possible to live with less hardship and constant worry about getting sick. And now they want to take all of that away– not only bring the country back to where we were before Obamacare, but makes things markedly worse.

In 2012 we were asked to be part of a story about the anniversary of the ACA, and Lucas was subsequently featured twice in the Seattle Times, including in a front page picture and story. In a way, Lucas became a poster-child for the successes of Obamacare, and we’ve tried to tell his story in ways that would illuminate the cruelty of Republican attempts to do away with the progress that has been made. Recently the Trump White House asked for Obamacare failure stories and instead thousands of people posted their stories of how it had benefited them, including this one that I submitted:

My son Lucas is quite possibly alive today because of Obamacare. He was born with a severe neuromuscular disease in 2009 right around the time that the ACA was being debated. When it went into law, provisions that prevented insurance companies from excluding people with pre-existing conditions and prevented lifetime caps allowed us to have health insurance so that my son’s complex needs could be cared for. Like tens of millions of other Americans, we are grateful for Obamacare, and if you take it away you should know that you are threatening the lives of kids like Lucas. Don’t do it!

Now, they are preparing the vote on the repeal and replace bill in the House and so far grassroots pressure has prevented Speaker Paul Ryan and the Trump administration from bringing their bill to the floor. It may happen tomorrow, but even if it does pass the House there will still be an even bigger hurdle to clear in the Senate. The fight will likely last into the summer, and we hope all of you out there will send letters, make calls, post stories, show up at rallies, and continue to advocate for improvements to — not a dismantling of — our health care system.

Five years ago we packed up our incredibly complex lives, said goodbye to so many amazing people, and moved to Seattle.  It is hard to believe – its been so fast and so long, all at once.  We wrote a short post the next day about the trip – its mostly fun to look back and see what Lucas looked like five years ago.  And to remember how important Roy and Silo (the daddy penguins he carried everywhere) were to him back then!

Burke and I got to read some of our writing about parenting at a Rad Families book release event this weekend, along with some amazing parents/writers.  They inspired me to want to keep at this!  So here is my reflection today – a letter to myself.

Things You Could Not Have Known Five Years Ago

1 – Lucas will love headphones, and They Might Be Giants “ABCs” album on repeat will get you half way across the country.

2- You will all survive the flight.  Literally.  Lucas will not die of altitude or a plugged airway or a vent stopping because you forgot a back-up battery.

3 – You are not crazy for hyperventilating on the way to the airport.  Of course this is terrifying – keeping your baby alive AND saying goodbye to the people who have held you through hell and back, through joy and celebration and loving your unbelievable child.

4 – The people in charge will let you and all your gear and special liquid food and power cords and resuscitation bags through security and onto the plane.  Breathe.

5 – You will be able to hold your big, floppy baby/toddler/boy in your arms and smile down on him in flight.  There will come a time a couple years later, when he gets too big for this.  You will coax him into being held a little bit longer.  But then a time will come when you wonder when the last time was that you held your kid in your lap.  Were you fully present that time to soak it up?  Were you distracted by your endless churning of mental to-do lists?  Add “savor this moment” to your to-do list today.

6 – He will grow so big that the twin bed he gets when you move to the new city eventually becomes too small for snuggling.  But you will get a bigger bed that is perfect.  There will come an age when he all he wants is to be left alone with his i-pad all day, but come bedtime he’ll still whisper to you, “I want to snuggle.”

7 – You will never regret this decision to get on this plane, even on the days your heart longs for your dearest people who are now so far away.

8 – It will be painfully hard and isolating at first, moving to a new city with a child on a ventilator.  This will never go away completely, but it will fade further and further into the background as you are welcomed into new communities in the new town.

9 – You will have a baby in this new city and Lucas will go through an overnight metamorphosis, from an utterly (and appropriately) self-absorbed five year old to a sweet, generous big brother.

10 – In this new home you will add “gratitudes” to your bedtime routine.  As you and Burke tuck him into bed each night, he will start you off with his “I am grateful for…”  Regularly he will finish his sentence with a heartfelt “you guys.”