Lucas Camilo

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.