Lucas Camilo

In case you haven’t heard, Lucas has a new favorite animal: the shark.  Which isn’t to say that all other animals have gone out of favor.  He still leads off every singing of Old MacDonald with a request for ducks, and our walks around the neighborhood involve constant vigilance for dog sightings… oh, and we did we mention that we currently entertain about 60 requests a day for the “birdie song”?

But when it comes down to it, Lucas’s primary obsession these days is with sharks.  It all started with a silly book called “Going to the Sea Park” which slowly made it’s way onto Lucas’s top 10 list, and then suddenly became the only book that we could reliably read to him at any hour of the day without ever getting the dismissive “all done” (he can be kinda picky out his books.)  The pages of what we now call the Shark Book have become so worn that we might need to get a new copy at some point, and the page in the middle of the book where the “little critters” arrive to see the shark tank is especially loved.  Lucas often holds the book open himself while pointing with glee at the sharks; sometimes he counts them but more often he repeatedly wacks himself on the forehead with a sideways open hand, emphatically employing the ASL sign for “shark”.  More than once in the past few months one of us has had to call the other to frantically inquire about the location of the shark book, and during the conversation Lucas can be heard in the background repeating incessantly “aark book, aark book, AAARK BOOK!”

Last week we decided it was finally time to show Lucas a real shark.  Krista had recently queued up a few youtube videos of sharks with Lucas and confirmed that it was in fact the sharks and not just the ridiculous book that he was obsessed with.  So we packed up for a trip to the renowned Baltimore aquarium, which we had heard was more than a few steps up from DC’s aquarium (that’s not saying much – the latter is a nothing more than a handful of oversized fish tanks in the dark basement of the Treasury Building.)

Indeed, Lucas perhaps reserves most of his love for sharks, but in general he’s pretty passionate about things swimming around in water.  In the vast aquarium in Baltimore he got to check out many colorful fishies, as well as turtles (another animal that easily makes the Lucas top-10) and jellyfish.  The aquarium is super-accessible, with special handicap elevators to the various exhibits and indoor sky bridges between the buildings.  We flipped Lucas’s chair around so that he could get really close to the tanks, and sometimes held up his head to help him focus in and follow a fast-moving sea animal.

Not surprisingly, the biggest thrill of all was getting up close and personal with the sharks.  Well not too close, but there is an amazing giant tank with a spiral staircase INSIDE of it that allows you to watch sharks swimming all around.  Each time one would come by Lucas would wack himself on the forehead and mouth the word “shark”.  There must have been a dozen different sharks of varying species, and we learned that one type of shark has a 2000 pound liver! (needless to say that guy wasn’t on hand).  In the end we were pretty happy with ourselves for pulling off the trip to Baltimore, and it was especially gratifying to see how enthralled Lucas was by it all.

As could be expected, the trip to the aquarium only whetted Lucas’s appetite for sharks.  The Shark Book remains as popular as ever, and it’s hard to explain to Lucas that we can’t go see the sharks in person every day.  Krista’s mom recently purchased a new shark toy and when she showed it to Lucas via skype the he tried to reach through the screen to grab it.  Ah, the wonders of a 2 year old!

Oh yeah, and did we mention that it was a nice Thanksgiving break?  Dinner at our good friends’ Sha and Matt’s place up the street, a trip to the Randolph’s house on the Shenandoah River, and lots of walks in the park as the beautiful, 60 degree fall days continue.  It’s going to be hard to leave Washington DC…

On November 18, two years ago, we brought Lucas home  from the NICU.  It was a day filled with so many complicated emotions.  We were simultaneously joyous about bringing Lucas home from the NICU, while also hiding our sadness at “graduating” from the NICU without knowing why Lucas couldn’t breathe or move like other kids (Lucas didn’t have a diagnosis until 3 months later).

There was the amazing anticipation of getting home and finally just being the three of us, which we reveled in for about 10 minutes before the new, bossy professionals in our lives busted into our house and started telling us what to do (one condescending nurse supervisor in particular).

And then the moments that only seem funny two years later.  At one point the nurse supervisor told the respiratory therapist not to show us how to turn off the incessant beeping on Lucas’s pulseox monitor.  For a moment our guts sank as we imagined our home sounding like an ER for the rest of our lives.  And then our friend the respiratory therapist proceeded with his orientation to our home equipment, including showing us exactly how to turn the beeping volume up and down or completely off.  And then they all left, and we were happy.  And then the machine started beeping because Lucas’s oxygen level was dropping, and we were terrified.  And then we suctioned and used the resuscitation bag ourselves, proudly, for the first time without medical professionals standing next to us.  And we were happy to be home alone.  And then an overnight nurse showed up and we were both relieved and sad at the loss of privacy – perhaps for many years to come.

Two years later that all feels SOOOO long ago.  Nurse supervisors no longer have any power to scare us — we know that we can get any information we need, or doctors orders for the things we know are best for Lucas.  And Lucas’s health is so much better.  The regular adrenaline-rush episodes of blaring alarms and Lucas’s graying lips are extremely rare these days.  And we’ve gotten to know Lucas’s nurses so well that we are mostly just grateful for their loving care.

And finally, maybe most significantly, Lucas can now tell us what he wants and needs and doesn’t want.  And he revels in the power and does it ALL the time.  There are still moments when he’s so mad/upset that we’re left guessing (are you mad that I’m slow at retrieving you the turtle toy, or are you having trouble breathing?)  But usually our days are filled with conversation about animals, bird songs, bananas….  For example, overheard yesterday:

Lucas: BahnEEna, nahnEEna, nahnEEna (and banana sign)

Krista: We don’t have any banana, honey.  Do you want to chew on a piece of apple?

Lucas: (getting louder) BahnEEna, nahnEEna, bahnEEna

Krista: I’m sorry, we don’t have any banana.  You ate it all earlier this morning.  Do you want an apple or a pear?

Lucas: BahnEEna, nahnEEna, bahnEEna, nahhhhhneeeeeeeeennnnaa (frantic banana sign)

Krista: Lucas, I’m sorry. There’s no more banana.  I’ll get you an apple.

Lucas pauses.  And then, recalling that we keep overripe bananas in the freezer, slowly makes the signs for “cold” and “banana.”

And Lucas says: old BahnEEna, old nahnEEna, old nahnEEna….

(note: the “c” sound is still a tough one for Lucas, and he can only do “b” when he works really hard)

Two years after bringing home our medically fragile child from the hospital, we crack up at our little genius.  What other barely two year old is outsmarting his parents AND putting together multiple words in English and ASL, both of which are physically challenging for him?  Needless to say, Lucas gets all the bananas he wants.

It’s been a while since our last post, in part because we’ve been keeping busy.  Burke was gone for 5 days at a retreat outside of Baltimore and came back to a bunch of work to catch up on, while Krista has been teaching lots of yoga and attending her anatomy and physiology class at UDC.

We’re still planning our move to the NW but have acknowledged that it’s not going to happen until the new year.  However, if the pace of our move reflected all the help we’re getting, we’d have jumped from coast to coast in a flash.  So many people have helped orient us to the social justice non-profit world of possible jobs, introduced us to friends and colleagues, and helped us map the possible medical and school services for Lucas.  We sent out an email to friends in Seattle describing the kind of housing we’re looking for, and we now have about 100 eyes looking for a wheel chair accessible house for us, with offers from Burke’s parents and Ashley to go check out homes for us.  As always, we’re extremely grateful for all the support.  With all that help we’re still optimistic about getting everything in place that will allow us to move.  Since we’re still in DC, we’re keeping ourselves immersed in our work and community as long as we can, while still moving forward with our westward preparations.

Lucas has continued to enjoy fall walks – naming the different leave colors along the way – and his usual favorite indoor games, along with some new ones.  His latest obsession is the “bird song” (there are actually a few different folks songs about birds that he enjoys), and whenever music or the radio comes on he’ll insist on a “new song” and that it be the “bird song”.  When we grudgingly make the switch he smiles with glee and wags his hand in the “more/I’m loving this!” sign.  Here’s a taste:

[audio:https://lucascamilo.com/wp-content/uploads/2011/11/05-Three-Little-Birds.mp3|titles=05 Three Little Birds]

We also recently got a “stander” for Lucas, something that was custom-fitted for him some months ago and finally arrived after being approved by our insurance.  It allows Lucas to hang out in the standing position and put some weight on his legs, something he otherwise isn’t able to do.  With the help of his therapists he’s getting better and better at it, and seems to enjoy being upright and checking out the world from a position other than sitting.  He’s able to draw, read books, or play with his iPad while in the stander, and it also gives him the opportunity to work on moving his head around more.

You’re probably looking at that picture and saying “wow, Lucas is a big kid!”  And you’re right… for a guy who’s not even 2 1/2 years old his height is truly remarkable.  He still weighs less than 30 pounds but at over 3 feet (36 1/2 inches to be exact) he’s off-the-chart tall.  And as Burke wrote a year ago in the essay that ended up being published in Rad Dad, Lucas’s fast growth is a bit scary when we think about what it means for the future.

And since we hope the near future includes a move across the country, we can’t help but be a little nervous about what it will mean to move this super tall string bean of a son out of our house and over to the other coast.  It’s already hard just getting him in and out of our car for a short drive, so the idea of a plane (or train!) feels extremely daunting.  Fortunately Lucas was born into a family that is not afraid of a challenge, so we’ll figure out a way to make it work.  We’ve thought of lying Lucas out in an overhead bin, for example.  And of course we’re open to other ideas.

It’s been a full week and a half since we last wrote on the blog. Lucas has been out a lot lately, to a local library for a Halloween event, back to Occupy DC (Halloween festivities again) and then last night to a CISPES speaking event at St. Stephen’s. Over the past few weeks there have been many beautiful, crisp, fall days and Lucas has being outside, swinging on his homemade tree swing, sitting in the back yard, talking walks around the neighborhood, or hopping in the car for longer journeys.

Sunday’s “Occupy Halloween” gathering at the McPherson Square encampment was a lot of fun for all of us.  A bunch of families with kids showed up – on a sunny, 50 degree afternoon, the day after DC’s first snow of the year! – and we sat out on tarps decorating mini-pumpkins, reading books, and chatting with friends. Despite the fact that Lucas couldn’t participate in some of the activities, the gathering felt inclusive, and indeed Lucas wasn’t the only kid with special needs: our friends Dan and Jaime came with their daughter Claire who also uses a wheelchair, and one of the organizers of the event has a non-verbal daughter with autism. Lucas especially enjoyed reading books with Nadeem, the son of Rami and Crystal who was excited to hang out with him. Burke had to leave early so Sha accompanied Krista and Lucas back to the house after a couple of hours in the park.

The kids’ party at the Petworth Library last Friday was a little more difficult. As promised, the space was accessible for a child in a wheelchair but getting around wasn’t easy, especially with so many little kids running everywhere. Lucas got all done up in his piggy costume which was pretty cute, and there were other farm animals as well. Still, for whatever reason Lucas just didn’t seem that happy to be there. He got upset and cried a few times, and was generally spaced out most of the time, even as some kids came up and tried to engage with him. It was hard to see, and made harder when the time came to trick-or-treat on the two upper levels of the library. We took the elevator up from the basement – after a long wait – only to find that the rest of the kids had already finished on that floor and moved to the next. That portion of the event was clearly set up for kids who run up and down stairs and ultimately we skipped the next level of trick-or-treating and waited a long time again to finally return in the elevator to the gathering below.

There’s a lot we could speculate about why Lucas didn’t seem to be enjoying the library. The thick, heavy piggy costume made it hard for him to move his arms and sign, and that in turn limited his participation. And the general atmosphere of kids running around everywhere was probably overwhelming. Was Lucas sad not to be more a part of it? It’s hard to say… perhaps he was just tired, but the event made us think about some of the challenges that we’ll continue to face when we bring Lucas to children’s activities set up primarily for typically developing kids.