Lucas Camilo

With Krista’s due date just around the corner, Lucas seems to be getting more and more intrigued and excited about the idea of being a big brother.  Granted, we’ve done a lot to cultivate that interest so that he’s not totally taken by surprise when the household suddenly has a new member.

A few weeks ago we took Lucas to a birth class for siblings with the great Penny Simkin.  In fact, Lucas’s birth owes a lot to Penny, whose birth class for adults we also attended over the last two months.  Because Krista went into labor very early with Lucas – and had to go on bedrest just to make it to 32 weeks – Penny’s book “The Birth Partner” taught us most of what we knew about labor and birth the first time around.  So it felt like coming full circle to take her birth class and then have Lucas learn directly from her about the birth process.

The highlight for Lucas was getting to practice holding a real baby.  In fact, it was a gigantic 3 month old baby that another parent brought into the class and which we helped ease into Lucas’s lap as he sat in his wheelchair.  Lucas noticed that when he held the baby she stopped crying.  It may have had to do with the mother consoling the baby right before Lucas held her, or maybe he’s just good.  Either way it seems to have given him confidence that he’ll be good at this big brother thing.

And Lucas isn’t just interested in the baby — he’s shown more interest recently in pregnancy and birth.  Now every time Krista groans when she stands up or complains about being tired, Lucas points out that its probably because she’s pregnant.  And then he follows that with “being pregnant is hard work.”  Even if he’s just parroting us, he says it with a sincerity that actually feels like he understands some of our current limitations.  We’ve even explained to him that Krista can’t pick him up right now because of the pregnancy, and he seems fine with that.  (note from Krista: It probably helps that Daddy remains his favorite parent!)

All this positive association with pregnancy and birth from Lucas is also wonderful given how hard – and sometimes scary – it is to imagine what it will look like to parent Lucas and a newborn.  Or Lucas and a toddler.  But since that’s something we’ll just have to figure out when we get there (tomorrow or next week or four weeks from now), for now we’re thoroughly enjoying ourselves as a family – two proud parents and one absolutely hilarious, goofy, and growing-up kid… who we happened to catch on camera in a moment of candor:

http://youtu.be/vLIcvOCODQk

We owe a bigger update on Lucas’s life here, and that’s coming soon.  But for now we thought we’d just share highlights from yesterday’s march and rally against police brutality in Seattle.

We’ve both been feeling a lot of grief and anger about the incredible violence and injustice suffered by Michael Brown, Eric Garner, and hundreds of thousands of black people in this country.  The two of us were able to go out to a powerful march the day after the Ferguson decision, and it felt good to be out with other Seattlites briefly shutting down business-as-usual and demanding racial justice.  Yesterday the conditions were right — a family-friendly march near our home, with clear skies — to take Lucas with us.  During the preliminary rally he was a little nervous, but once we got up high where he could look out and get a sense of the action, he got excited.  When he saw the march start (and it looked to him a bit like a parade), he decided that despite the noise and slight chaos, we should join in.  We only made it 10 or 12 blocks, but Lucas was grinning and chanting along, and the fact that he got to roll alongside a marching Harriet (a little dog friend he had previously met) made it all the better.  Listening to the chants, he eventually asked what “black lives matter” means, as well as “What is police?”  So we tried our best to begin a Lucas-level conversation about race and justice, but of course we got about five seconds of his attention.  We’d love to hear from other parents how you’re talking to your kids.  In the mean time, here are some shots and video from the march:

The wheelchair ramp is complete on the new house so we took Lucas over to check it out this afternoon.  He was excited to do a full tour of the house and name each of the rooms.   For each of the bedrooms Lucas asked “whose rooms is that one going to be?” and fortunately we had brought sticky letters to make a “LUCAS” sign on his bedroom door.  He was excited about that, but even more excited about the next stop.  We spelled it out… “B – A – B – Y”.

Oh, perhaps we forget to mention to our blog followers that Krista is pregnant? That’s right, and just entering her third trimester in fact!  Indeed, adding a member to the family is the primary reason why our search for a house became urgent over the last few months.  And so we’re feeling extra fortunate to have a warm home to soon share with a little one.  The baby in question has the best room in the house, too – see it below in the picture of Krista opening the shades, to Lucas’s delight.

Lucas seems rather excited about the family development, and if you ask him directly he’ll announce, “I’m going to be a big brother!”  For the most part though, he’s content with continuing his deep exploration into dinosaurs, occasionally wondering aloud if “Pterodactyl” would be a good name, or if, perhaps, the baby might be a “long-neck.”  It’s hard for any 5 year old to truly grasp what its going to mean to have a little sibling, so for now Lucas will go about his business, happy to have our undivided attention.  By mid-February, however, things should begin to change…

[Note: if you signed up to receive updates when we post to Lucas’s blog you may have noticed that last time it sent out like 6 different emails.  Sorry about that!  It’s fixed now :) ]

Fall is in full swing and lots it’s going on in our world that we haven’t had time to write about.  We bought a house, for example.  It’s a block away from where we currently live and has a great single floor layout for a kid in a wheelchair (and a basement that we’re hoping to rent to a friend eventually) – so that’s exciting!  Lucas calls it “the house with the birds on the walls” or “the house where we speak with a British accent.”  The former is probably self-explanatory; the latter stems from the fact that our real estate agent is British and Lucas REALLY likes speaking with a British accent these days, so having an authentic Brit to do it with made the house quite memorable.

In other good news, Lucas has continued to do well in kindergarten, going from a half day to when he first returned to 2/3 of a day now.  His leg is all but healed but he still has a removable splint on it, and we’re going to wait until we get the go-ahead from the orthopedic specialist (hopefully next week) to remove the splint entirely before trying a full day at school.  The other challenge is that the school still has not provided Lucas with a one-to-one aide, something which is required under his Individualized Education Program, or IEP.  Lucas is accompanied to school by his nurse but she can’t be on top of his health needs (which includes feeding him through the g-tube, changing, etc) and also work with him on academic matters.  At least there is someone coming into the class occasionally to give her bathroom breaks!  Krista put some pressure on the school last week and finally they are moving ahead on hiring a permanent aide for Lucas.  We’ll report more on his life at school when we have more time; for now, its fair to say that despite some challenges, it’s encouraging to see enjoying it and building up stamina for the longer days.

This weekend Krista is at a yoga training and so Burke and Lucas are getting out for some fun activities. He’s currently taking a long nap (something he doesn’t do as much during the week these days since school takes him right through his old nap time.)  Earlier today we made it to Lucas’s cousin’s soccer game and we’re happy to report they trounced their opponent – maintaining good sportsmanship, of course.   Here are a couple shots from the game:

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:

If Lucas was able to write this blog himself, this is what he would tell you about our past ten days: Lots Of Animals.  Creatures.  Mountain creatures. Sea creatures.  House pets, farm animals, petting zoos.  Animals you see from the ferry, little ones you hold in your hand.  He can list every dog we’ve met by name.  Needless to say, it’s been a full ten days.

Last weekend we took an extended weekend to go back to the Leavenworth mountains with our friends Eli, Lili, Estevan, Elisha, and kids.  We had been talking up the adventure with Lucas for a week, listing each of the people we would see.  And then the day before we left Lucas realized he remembered the place we were going, and he lit up.  He suddenly added Shirley, Kaya, and Brooksy (the resident dogs) to the list, and he was thrilled.

It turned out to be the most beautiful spring weekend in the mountains, and we even got to lie outside on the deck and soak in the sun.  While the other families were off hiking, we called Shirley over and she and Lucas had an hour-long love fest.  Shirley is a very, very sweet golden retriever, who wants endless attention.  Whenever Lucas (or Krista) stopped petting her, she would gently put her paw on Lucas’s chest to ask for more.  Lucas would light up and say “Shirley gave you paw!”

Lucas also carried his “container” around all weekend looking for bugs — ants, beetles, anything that he could watch crawl around a very small space with a magnifying glass on top.  And then there were three miniature donkeys that Lucas got to feed.  Another thrill.

We went on to the town of Leavenworth and stayed two more nights on our own, soaking in the sun and mountains and rivers.  The highlight for the two of us was finding accessible hiking walking trails along the Wenatchee River.  Lucas’s highlight was definitely the petting zoo.  He got to feed a llama, a goat, and a pig named Penelope Pickles.  And he loved the turkey’s sound.  We also got to lie out in the grass at the foot of the mountains and watch the birds feel spring.  Lucas is good at bird identification, and in an hour or so we saw flickers, hawks, finches, sparrows, and robins.

We came home for a couple days of school, then headed back out to Whidbey Island with Burke’s family for another weekend adventure.  Lucas was lucky to have his cousins there to help catch and motivate him to play with the tiny crabs in the tidal pools.  We also lay on the beach and watched bald eagles, great blue herons, and sea gulls.  (Have we mentioned the sun has been out?)

And then, almost to test whether or not seeing animals could ever get old for Lucas, we we visited Elisha’s family’s small farm on Whidbey.  Here we weren’t even constrained by fences.  Elisha’s mom led Lucas and his cousins in to the pasture, where they were promptly rushed by a dozen or more friendly farm animals.  The pictures speak for themselves.

And then, as if the animal kingdom was rewarding us for our love, the captain of our home-bound ferry announced an orca sighting to the south.  We rushed over and got to see a small pod of orca fins gliding up and back down into the water.  It is possible that Krista was even more excited than Lucas.

This is of course an incomplete picture of the vacation – the two of us enjoyed the people we were with even more than the animals.  We felt lucky in so many ways.  And we also came home worn out from some sleep deprived nights and from all the work it takes to get Lucas out.  But we’ll write more about that later.  For now, we thought we’d stick with Lucas’s highlights.  Which in list form makes for a pretty impressive vacation:

Shirley, Brooksy, Kaya;

miniature donkeys;

llama, goats, miniature cows, pig, peacock, duck, turkey, chicken rooster, and donkeys;

gold finches, house finches, hawks, robins, sparrows;

crabs, eels, starfish;

bald eagles, great blue herons, red winged blackbirds, Canadian geese;

Bruno (Nonna’s dog) and Zoe (Nonna’s cat);

more miniature donkeys!;

goats, sheep, miniature horses, bunnies, chickens, geese; sea gulls;

and orca whales.

This vacation update is late in coming because we just had an amazing visit from friends here in Seattle, essentially extending our vacation.  More on that visit (and Seattle snow!) soon.  But here’s a bit more on LA…

It’s hard to know how to describe anything in our lives with Lucas – sometimes language doesn’t totally fit our experience.  So both of these statements about our Los Angeles trip are true: the rest of our time in LA felt like a perfect, wonderful, “real” family vacation.  And, our trip was hard.  We were really tired by the end, and because of our limited mobility couldn’t do everything we would have liked.  But maybe that part – feeling tired and limited – is just part of what “family vacation” is all about?

The exhausting part had to do with the fact that Lucas isn’t sleeping well.  The morning we departed for LA Lucas was up and ready to go before 4 am, and of course we were along for the ride.  Other nights during the trip he’d wake up many times in the night, needing attention each time.  During the euphoria of travel (and exposure to sunshine!) the lack of sleep didn’t  effect us too much, but by the end at least one of us (the Momma dinosaur) was exhausted.  Besides sleep deprivation, there’s also a lot of effort, time, and energy that goes into setting Lucas’s gear up in a new place, moving pieces around to approximate our home set-up with ventilator, humidifier, pulse-oximeter and other critical pieces of machinery, meds, etc.

But all of that was to be expected, so the more exciting part is that we had a wonderful time.  Not just despite all of the challenges, but maybe also because of them.  The hard parts can make the many sweet moments feel so hugely triumphant.  We often savor small things — making it to a new museum, simply getting our kid down the beach to see the waves — with such joy, and with a present-moment gratitude we wouldn’t have had without disability.   So the joy of everything that vacation means felt luxurious: exploring a new place, tasting and touching and feeling new environments, relaxing into having more time to be with each other, catching up with friends.  A few highlights of the second half of our trip included:

– Watching the Superbowl and having a leisurely dinner with friends/ hosts Walker and Devon.  Lucas spent most of the 3+ hours of the game snuggling with Mies the chihuahua, but each time Burke yelled excitedly at the game Lucas would demand to know “What did the Hawks do?”  He learned new football vocabulary including the words “safety,” “interception,” and “Bronco Busters.”

– A trip to the giant LA Natural History Museum.  To our surprise, Lucas was initially extremely intimidated by the T-Rex and Triceratops fossils in the foyer.  It seems that books didn’t prepare him for the life-sized dinosaurs.  He insisted on going home, so we switched gears and checked out more fuzzy mammal-focused exhibits for a while.  Then we found the back door entry into the dinosaur exhibit, promised the that stegosaurus was friendly, and he agreed to go in.  A volunteer approached him and offered him some fossilized dinosaur poop to touch.  It could have gone either way, but he decided to be brave and go for it.  And once he touched the poop, there was no turning back.  We spent another hour checking out huge fossils.

– A visit with Franny and Ilana, good friends from DC who came out to Venice to hang out since we couldn’t make it to their place on the other side of the city.  Although Lucas hasn’t seen them in a long time — and probably can’t remember them from 2 years back — he treated them both like old friends, catching them up on his LA adventures.

– A trip to the Santa Monica pier and time to fly the kite (“just like the Cat in the Hat”), followed by a wind so strong that Lucas asked to go inside a restaurant.  Which obligated us to get a drink and watch the sunset over the ocean.

– On our last morning, we ventured to a public beach a few miles north where we had heard there were special beach wheelchairs for the borrowing.  We had to drive for a while to find the lifeguard station, but thanks to an amazing online accessible-beaches-of-southern-california guide, we had we had what we needed.  Eventually we found a lifeguard who lent us a wheelchair designed to move through sand.  If you’ve never imagined pushing a regular wheelchair through dry sand, try imagining riding a bicycle on a California beach.  Impossible.  But with gigantic tires, dry sand is navagable.  And the adventure was awesome!  It was a bit like the time we took Lucas sledding — he was having a good time, but it’s possible that the triumph of getting him there felt even more thrilling to the two of us.  He definitely enjoyed it too, especially the sandpiper spotting (hence the song at the end of the video).

We ended the trip in general awe of the generosity of friends and the MTM community.  We left the bungalow (where Lucas was ready to move permanently) and drove our wonderfully accessible van to the airport, where we parked it a few hundred feet from our check-in gate.  We hid the key and left it for Nancy and Donald to come pick up.  We couldn’t have dreamed up more perfect logistics, or a better vacation.

We’re in L.A.!  Venice Beach, to be specific.  And after the first three days of vacation, we’re feeling extremely lucky.  And relaxed (mixed with a pretty splash or two of exhaustion).  But the rewards of being somewhere new, a little bit warm, and with old friends makes it so, so worth it.

We flew out of Seattle on Friday morning after weeks of organizing all the logistics involved in traveling, plus traveling with vent.  And it all paid off.  We made it with relatively few glitches and arrived and the bungalow that our friends Walker and Devon had made available – Devon rents the place on AirB&B and its just one block from the beach!  The highlight of our first few hours (for Lucas at least) was hanging out with Lotus Flower and Mies, two chihuahuas who were very gentle and funny with Lucas.

Later that evening we had a wonderful dinner with Nancy and Donald who are part of the myotubular myopathy community.  They live in Huntington Beach and are letting us borrow their wheelchair accessible van for the week which is extremely generous.

On Monday we met up with our friends Ken and Patri and their kids Mateo and Sofia.  We knew Ken and Patri before we all had kids and lived in Brooklyn back in the mid-2000s.  Its been a long time since we’ve hung out so it was great to catch up.  Our destination was the La Brea Tar Pits and the Page museum where Lucas was able to see saber tooth tigers and woolly mammoths… he’s pretty sure he saw the fossils of an Indricotherium too, so don’t tell him that it was actually an ice age camel!  The giant puppet saber tooth was a little too much for Lucas and we had some tears… but the rest of the visit was fun.

In the afternoon we took our second big walk on boardwalk of Venice Beach.  Lucas was loving all the funky characters, and our friend Ilana was along for the journey and showed him the skate park where some amazing skateboarders were tearing it up.  We would have stayed out longer but a winder storm blew in and the sand got overwhelming.  Luckily, there was enough time to hit the infamous “muscle beach” and scope out the old-school roller skate dancers before heading back home.

Today we’re getting ready for the Superbowl and Lucas promises to say “Go Hawks!” many times.  We’re also watching the presidential elections in El Salvador closely and hoping for a big victory for the leftist FMLN party!

(Pictures enlarge if you click on any one of them, then you can scroll through them in larger format.)