Lucas Camilo

After months of talking about it and preparing, we’ve finally set a date for our move to Seattle.  We’re relieved but also somewhat anxious about all that needs to be done… and sad at the prospect of saying goodbye to so many good friends in DC, not to mention nurses, doctors, therapists, and others who have supported Lucas during his first years of life.

It all started last week when Burke got the news that the Center for Community Change would hire him onto staff for 6 months starting February 1.  Burke has worked for CCC since April of 2010 in various capacities and on various different campaigns but always on contract as a consultant.  With the job search in Seattle proving difficult the prospect of him staying on at CCC in a “field” position – meaning he’s able to work from wherever he can connect to a computer – emerged, and we decided to go for it.  It’s a great opportunity to continue working on an important organizing campaign related to protecting Social Security, Medicare and Medicaid.  And though he’s still working out the details, we can rest assured that the health care benefits will be even better than we’ve had in recent years, thereby allowing us to move and continue with all the services that Lucas needs.

In the meantime we’ve also signed a lease on a rental house in the Mt. Baker neighborhood of Seattle.  It’s a nice place that is very wheelchair accessible and should work well for Lucas’s situation.  There are no steps to the front entrance – a rarity in a hilly city like Seattle – and the kitchen, dining room, living room and two bedrooms are all located on the first floor, another key aspect that we had sought.  Like the job with CCC it’s just a temporary arrangement – a year lease that could be extended – but it will allow us to get to know the city, start to build community, and then examine our work and living options once we’re well settled in.

There are many loose ends to tie up in Washington DC, from final appointments with Lucas’s many doctors and specialists, to events and projects that we’ve both committed ourselves to through the month of February.  And of course, there is much to prepare in Seattle before we arrive, so we won’t actually be hitting the road as a family until close to mid-March.  But the preparations have begun in earnest, and we’re excited to let everyone know.  Any advice people have about moving – especially with a child, and bonus points for having moved with a special needs child (double bonus for ventilator users) – would be much appreciated.

First off, happy Martin Luther King Jr. Day!  Here’s a video of some of his lesser known quotes, which seem just as poignant today.

As for Lucas, things have been good lately around our house.  However, he had a couple of not-so-good nights of sleep last weekend which led to him act really grumpy.  We often marvel at Lucas’s very positive demeanor, especially given all that he went through as a baby (he had more shots, surgeries, doctors visits, time in the hospital, etc before the age of 1 then most kids have in their entire childhood).  He hasn’t had to deal with major health issues more recently but he is still extremely limited by his muscle disease.  So the fact that he’s so good natured – rarely crying or getting fussy – has been relieving to say the least.

Last weekend it looked like that was all about to change.  Lucas is usually picky about which books he wants to read but for a few days straight he refused – with a defiant “no!” – just about every title we offered.  The animal cards memory game was also repeatedly shaken off, and a skype chat with the grandparents offered little respite.  He cried throughout much of his physical therapy appointment and refused to go up in his stander at all.  The only thing he wanted to do was watch penguin videos on the iPad, which he let us know by chanting over and over “ha-hee-der, ha-hee-der!” (Lucas-speak for computer) while moving his hands in the accompanying sign.  There are some educational apps that Lucas now uses on the iPad but he refused to play those, and we refused to let him watch the same silly penguin video on repeat.  It was a stand-off.

Then he got a good sleep on Sunday night and suddenly things were back to normal on Monday.  We breathed a sigh of relief that perhaps the terrible twos had been averted once again… but the tiring weekend also got us thinking.

Nona engages in another round of "animal cards"

In a way, Lucas has a right to be an impatient toddler.  Like most 2-year olds he has an inquisitive mind, wanting to explore all the fascinating things the world has to offer.  And yet, the world that Lucas physically has access to consists of a 12-inch radius semi-circle around his head when he’s lying down, and is even more limited when he’s sitting up.  He can’t move his body or even roll over, and is therefore almost completely dependent on us to fulfill his whims and desires.  Given that muscle disease also limits his ability to communicate – even as his progress in using sign language and verbalization has been remarkable – those around him don’t always know what he’s after.  Whereas you can set a typically developing kid loose in a playground or in room full of toys and they’ll entertain themselves for hours, with Lucas just about every game or activity imaginable requires a helping hand.  If he’s coloring he needs us to hand him the markers.  If he’s reading he needs us to get and then hold the book.  If he’s done with the book and ready for animal cards, he needs us to reposition his body and set up the cards.  The fact that Lucas is smart and seems to crave challenges and stimulation is wonderful but it also means his needs can be constant.  For his parents and other caregivers it’s tough work.

In some ways this new dynamic is exciting – it’s much better, and certainly more rewarding, than the hyper-vigilance we had around medical issues when Lucas was a baby.   Indeed, for a kid with less possibilities for entertainment and fun, Lucas manages to go along with and even suggest new ways to play and engage with the same set of books and toys each day.  He basically invented the aforementioned animal cards memory game, for example, after getting bored with just holding up cards and doing the sign for each animal.  There are certainly times when we wish he were a little more open-minded when it comes to trying new games, and a little less demanding when it comes to playing the same one for the 15th time in a row.  But such is parenting a 2-year old – his disability doesn’t really effect that dynamic, just the terrain on which it plays out.

Ultimately the terrible twos may still come, and we’ll figure out a way to deal with it (including asking friends and family for wisdom.)  Last weekend made us feel lucky about Lucas’s usually easy-going personality even as he faces the challenges of living with severe muscle disease.  We also know that more difficult times are ahead, whether as part of so-called terrible twos or some other stage of development. And as his needs continue to change we’ll keep doing our best to be thoughtful and patient parents in order to help him take on those challenges.

Krista turns 35 today!  We went for a nice morning walk to celebrate the occasion and have plans to get dinner with a few friends tonight.  Lucas still associates birthdays with his big #2 and therefore is convinced that Krista must also be in the same age range (when told she’s older than two he holds up three fingers and says “thweee!”)

Burke’s parents left late last week after a successful holiday visit.  They got to see Lucas in his prime and to join him gleefully reading books and playing memory games with his animal cards.  They also were around to witness his latest shift in favorite animals… from sharks to penguins!  An excellent new book called “And Tango Makes Three” helped facilitate the shift, along with a ridiculous video called “Antarctica Anthem” (watch at your own risk… the tune gets in your head.)

Part of the reason that Lucas loves the penguin book is that he’s also very into eggs these days, especially the idea that they turn into babies.  He still hasn’t figured out how it works – he insisted the other day during Krista’s telling of a story that a shark mommy and daddy managed to have an egg that cracked open to reveal a baby penguin – but he’s fascinated by it all nonetheless.

Here’s Lucas reading the penguin book for the tenth time in a row with papa:

For New Years Eve our generous neighbors (two houses down) let us borrow their living room and make a fire.  We also made a fabulous dinner and invited three friends to join us and Burke’s parents for a New Year’s feast.  But if you ask Lucas it was the fire that was the real highlight.  He’d never seen one before and as soon as it starting roaring and we taught him how to say “fire” the joy commenced.  For a good 45 minutes he pointed at the fireplace and said “fii-yer, fii-yer!” over and over again, occasionally adding “hottt, orrr-ange fii-yer!”

The rest of the night was pretty good as well and Lucas eventually got to settle into Nona’s arms in front of the fire and listen to stories before starting to fall asleep.  In the end he decided he wasn’t tired enough and managed to stay up nearly until midnight.  Alas, we all fell asleep before January 1 had commenced, but it was nice evening nonetheless.

We want to thank everyone who made 2011 such a special year for Lucas.  It’s hard to know where to begin a list of highlights but certainly Lucas’s progress with communication would be close to the top.   A year ago he was just starting to waive goodbye or lift his arm up to do a high-five; he had no really verbal communication other than saying “nananana” over and over.  As we write this, Lucas is demanding to play the memory game with animal cards, then naming each color of marker he wants to draw with, then narrating as takes the caps “on” and “off” and “on” and “off” again.  A year ago we couldn’t have imagined him having the strength, coordination, or dexterity to even put a cap on a marker, much less tell us about the action as he did it.

In 2011 we were extremely fortunate to be able to spend time with friends near and far.  We took our first family road trip, traveling to Brooklyn and then Boston with Lucas to introduce him to many friends, old and new.  And at the end of the summer we took our first “vacation” with friends, spending two wonderful days and nights in a cozy cabin in the woods.  And in 2011 the two of us were also able to travel on separate trips to visit family and friends and stay engaged in national organizing work, and we remain grateful to nurses Florence and Victor for making those individual trips possible (meaning the parent who stayed home got some respite from 24/7 Lucas care).

If Lucas made this list, 2011 would be the year of loves and fascinations.  Ducks.  The phone.  And then the computer.  Cute puppy videos on youtube.  The color yellow.  Sharks.  Lights.  Eggs.  Animal cards.  Chewing on “hot” bananas.

Some of our highlights in 2011 include things that didn’t happen.  We didn’t move to the northwest, and the upshot was that we’ve been able to stay longer with the friends and work we love in DC, not to mention all the people that make up Lucas’s support team.  Lucas was not hospitalized once in 2011 — in fact, it’s been almost two years — which is a really big deal for a kid who is technically labelled “medically fragile.”  The families of many kids with MTM who are spending time in the hospital this winter are in our hearts, and we feel extremely blessed to be in our home with a relatively healthy kid whose biggest complaint is that we don’t play the birdy song often enough.

If there’s one thing Lucas has taught us in 2011, it is that the future will unfold in unforeseen and beautiful ways.  We wish you a 2012 filled with justice, community, love, contentment, and the magical joy of joining children in play and discovery.