Lucas Camilo

Happy holidays!

It’s been a good 372 years since the last time a full lunar eclipse coincided with the solstice so we decided it was probably an auspicious moment worth celebrating.  Monday night we dragged ourselves out of bed at 3 am and went outside for a few minutes of viewing the huge, reddish-brown full moon.  Everyone’s probably already seen a million pictures, but if not, here’s a cool time-lapse video.  It was pretty astounding.

Then on Tuesday night a few of our friends came over for a solstice dinner.  We’re not usually such committed pagans, but it seemed like an important year to be with friends on the darkest night of the year.   Lucas sat in his chair on the floor and played.  He seemed to enjoy the small party around him, as the rest of us ate barley soup and hung out.  We also shared a little about the “darkness” in our lives – both the parts we find useful and the ones we’d like to let go of – and we ended the night with a small fire in the back yard.  Thanks to Max, Jess, Ilana, and Buddy for sharing in on our mini-ritual!

Meanwhile, Lucas has been surrounded by lots of friends lately.  Last week Sha came by and was able to hold Lucas for the first time since his surgery a month ago.  And Lucas enjoyed a long snuggle-turned-nap with Heyward right before she left for Colorado.  Heyward has spent a lot of time with Lucas this fall and he’ll definitely miss her while she’s gone!  And then Krista’s good friend Alice was in town visiting from Michigan last weekend.  Alice is in the thick of writing a brilliant dissertation about workers centers, immigrant rights and social justice movements, which made it all the more amazing that she could drop it all to come cook food and sing nanananana with us for a few days.

Speaking of the nananana song, Lucas is making major strides in his communication.  He’s learned to recognize a handful of words, going beyond waiving when someone says hi or bye.  Over the weekend he started bringing his thumb and pointer finger together in the gesture made at the start of the Itsy Bitsy Spider song.  Now whenever we say “itsy bitsy” he immediately makes the hand sign, and we go crazy laughing and applauding and then sing him the song.

The hand signs are exciting since it means Lucas is moving towards learning basic sign language even before he can speak.  But he’s certainly not afraid to speak his mind either.  His voice is getting louder and louder, and he was especially inspired in his bath the other day.

We’re looking forward to Krista’s mom and sister arriving tomorrow night and then Burke’s parents coming in early next week – it will be wonderful to share the holidays with all of them.

The other day Krista saw a little boy running around the coffee shop and it occurred to her that he was about the same height as Lucas.  She asked his mom how old he was and the answer was 2.

There are two things that were immediately striking about this: first, that a kid Lucas’s size is running around (quite a contrast to Lucas who has never stood, or even sat up on his own for that matter); and second, that Lucas is a tall dude for his age!  Lucas now weighs over 25 pounds and is 33 1/2 inches tall.  That’s almost 3 feet tall, and he’s only 16 months old!

The question “what’s Lucas up to these days?” is always a tough one to respond to in a brief sentence, but these days we’ve got a pretty good stock answer: “he’s, uh, growing.”  Sometimes we wake up on the morning and go to give Lucas a morning kiss in his crib and it seems as if he’s added another half inch during the night.  In fact, he’s nearly grown out of his second crib in the back room – there are only a few inches of space left before both his feet and the top of his head will be touching the respective ends.

All of this seems well and good – every parent loves to see their child grow, right? – except that as we previously mentioned, Lucas can’t sit up or move his body much as all.  While his fine moter skills are developing remarkably, his ability to twist his torso, to shift body positions or roll over, is pretty much non-existent.  His muscle tone is so low that he needs braces and props to hold him in any position other than lying flat on his back or tummy.

Under these circumstances, Lucas’s rate of growth isn’t all that exciting; rather, it’s downright scary, at least when we imagine ourselves years down the line.  The taller Lucas gets the more chance he’ll have of developing scoliosis later in life; the longer his torso gets, the quicker he grows out of his special braces and chair, meaning that he needs new ones.  Mostly though, it’s his weight gain that gets us thinking about the challenges of the future.

Already, picking Lucas up is a complicated ordeal, and at this point Victor and Florence (Lucas’s nurses) are the only people other than us who really feel confident doing it.  For example, when you put a single hand under his waist and lift, his butt goes up but the rest of his body stays on the ground.  His arms fall back behind him, his legs droop, and if you don’t have the other hand firmly behind his neck then you’re in big trouble.  All of this is compounded by the vent tubing connected to his trach and the pulse-ox monitor probe running from his toe, which add an extra layer to an already challenging maneuver.

And yet, lifting Lucas is not only necessary but often a total joy: when Lucas is in a good mood there’s nothing he enjoys more than  getting swung around the room,  or having his head flipped head back into “upsidedown Lucas” position, or laying on someone’s chest for a good snuggle session.  It wasn’t long ago that we could easily pick Lucas up and do all this stuff, and we can still pull it off, but 25 pounds of a very floppy body is different than 15 pounds.  And it’s hard to imagine 35 pounds.  Or 50.

The reality is that Lucas will may ever be able to walk, and he probably won’t be able to sit up straight on his own anytime in the near future.  Playing with him in the ways we now do will get more challenging as he grows.  Moving him from place to place is also going to get a lot harder.  Burke has recently committed to stretching his back more and starting to strengthen his abdominal muscles in order to better carry Lucas.  He jokes that he’s going to have to get a personal trainer soon in order to get all of his Lucas-lifting muscles in better shape.  And the thing is, it’s not really a joke.

There’s not much we can do about Lucas growing.  He’s not at all chubby right now and we’re certainly not going to starve him.  In general, being tall is a characteristic of people with Myotubular Myopathy, one of those freaky things about this disease that seems to doubly punish kids like Lucas: not only is this genetic mutation going to dramatically inhibit the development of your muscles, but it’s going to make your body really long as well so that moving around is that much more difficult.

We don’t mean to complain about this, nor to we want anyone to feel sorry for Lucas.  This is just a reality that we’re coming to terms with and which is important to share as we enter into subsequent stages of Lucas’s development.  There are so many amazing things that he’s doing these days that we (usually) can’t help but focus on the positive.  But every pound he gains and every ½ inch he adds to his height gets us a little close to that day when it won’t be so easy to pick Lucas up and dance around the room… and that’s scary.  Because dancing around makes Lucas happy.  And so does bouncing on daddy’s knee as he cruises in the make-believe choo-choo train.  We love Lucas so much that seeing him happy at these moments is the greatest thing in the world.  So we’ll cherish each minute, and look forward, sometimes anxiously, to new adventures that he can take part in even as he grows bigger…

Last night was the CISPES 30th anniversary party here in Washington DC and since we were both participating in the festivities – and didn’t have a nurse – we decided to bring Lucas along.  Of course, he’s not quite ready to cavort with 100 people in an auditorium with blasting music, so we planted Lucas on the couch in the CISPES office, upstairs from the party but close enough to watch it all go down from the balcony, soak in the bumping music of the dance party, and for us take turns hanging out with the crowd down below.  Lucas also got a stream of visitors, and a number of friends met him for the first time.

CISPES will always have a special place in our hearts: not only did we meet through a CISPES delegation in 2004, but the two of us were on CISPES staff for over 10 years (combined) and have put in countless volunteer hours.  Most importantly, many of our best and dearest friends in the world have come through our work with CISPES… so needless to say, we couldn’t miss this event.  Burke’s job for the last few months has been constructing and managing a website that charts the 30-year history of CISPES (check it out at www.cispes30years.org) while also digitizing a lot of classic old propaganda videos from the 80s and 90s.  He kicked off the event with a video compilation of some of the most striking moments in the history of CISPES and El Salvador… from the roots of the civil war, to the 1988 shutdown of the Pentagon by CISPES activists, to more recent delegations and protests.  Krista was one of the 6 speakers chosen to tell their stories of how they got involved in CISPES, and though she had to condense her speech because of time running out, she was honored to be able to take the stage.  Here’s a a couple audio clips from last night that feature Burke as well as our wonderful compañeras Alexis, Rosa, and Sonia (not to mention some great tunes from the featured band Anexo Social.)

[audio: http://thefightback.org/audio/CISPES+at+30+2010-12-11+part2.mp3] [audio: http://thefightback.org/audio/CISPES+at+30+2010-12-11+part1.mp3]

(thanks to Pete at theFightBack.org for doing the interviews)

Lucas seemed to enjoy his 7 hour stint at the party – acting shy at times but also occasionally smiling while singing the na-na song –  and it certainly felt great for us to be there all together.  We ended up staying until after 1:00 am, and though Lucas looked tired, he stayed awake a good 20 minutes after we got home and tucked him into bed – meaning that it was nearly 2 am but the time he fell asleep!  Quite an adventure indeed… oh, and last we heard the dance-a-thon was still going at 3 am!

The past week was great for Lucas and for us, and we’re finally getting a chance to sit down and write about it.  The highlights were an extremely informative (and long!) visit to Children’s on Thursday, as well as the “My Baby Rides the Short Bus” book event/community gathering featuring parents of kids with special needs that we helped organize this past Saturday.  In between Lucas came down with a cold (and got over it quickly); our friends Jesse and Alessandra visited us from New York (and announced they’re expecting a baby!!); we escaped and went out on Friday night together for a fun Cabaret fundraiser for DC Jobs with Justice (complete with hand-dancing lessons); and finally, we decorated our first Christmas tree with Lucas.

Our long day at Children’s last Thursday is worth recounting because it featured one of the best visits with a team of medical professionals that we’ve ever had.  After an appointment with the complex care doctor — who helps tie all of Lucas’s specialists together and keeps on top of his overall health plan — we went downstairs to the MDA clinic.  It took a while to get Lucas settled in and record the requisite vital signs (he’s now about 33 1/2 inches long!) and by the time the team of doctors and therapists arrived Lucas was napping in his stroller/chair.  We started talking with them and soon Lucas woke up, and fortunately he was in a good mood and ready to perform.  The physical medicine doctor and researcher had never met Lucas before but presumably had read lots of reports about him.  They were genuinely impressed at how well he is doing, and in particular, extremely positive about his cognitive development and potential for interaction and communication.  The doctor said almost immediately “get him an i-pad!” and later handed us a prescription.  It’s mind-blowing to imagine that these hip computer things might help our baby tell us what he wants and feels, but since we’ve heard success stories from other parents, we’re willing to try.

The doctor and physical therapist had lots of other great ideas.  Maybe most significantly, they helped adjust Lucas’s stroller/chair.  Since we got the chair back in July we’ve struggled with it.  His big head makes him slump him down and either get spaced out or appear uncomfortable.  These doctors, though, looked at the angle of his hips and called in a technician who loosened a few screws and opened the angle of the seat slightly.  We put Lucas back in the chair and he actually smiled!  Suddenly he had more stability in his torso, meaning more room for his lungs, meaning more oxygen and more energy.  All five of us stood and ooohed and aaahed at how great he looked, and at the miracle of a more space in his torso bringing so much alertness to his face.  (Note to any slouching readers: this applies not just to Lucas, but to you, too!  It is good for all of us to sit up straight, and not take that space for our lungs for granted.)

The great ideas and positive reinforcement around Lucas’s growth and development went on for over and hour.  We then eventually we met the new neurologist who’ll be working with Lucas, a young doctor who showed interest and willingness in do research around Lucas’s disease.  By the time it was all over we had been at Children’s for six hours without lunch and we were all ready get home.  But unlike past visits when Lucas spent the day at the hospital getting poked, prodded, measured, and interrogated without getting much in return, this time we went away excited, with dozens of new ideas.

Two days later, we hosted the “Baby Rides the Short Bus” event.  About 45 people — many of whom were our wonderful friends! — turned out on a cold Saturday evening to listen to five parents tell their stories of raising kids with disabilities.  Krista welcomed everyone and introduced all the parents who would share.  Jen Silverman, co-editor of the book, came from New York and opened the stories section of the event by reading from the book.  Then Tricia, a mom of 2 and blogger from Baltimore read from her blog.  Then Jane, a mother of five from DC and activist with Empower DC, told about her son, Andre, who sat next to her.  Then Burke read from our blog (and got the whole crowd teary-eyed), and then Doreen, mother of two and director of the local affiliate of Family Voices, talked about her family and about the challenges of discrimination in schools in Washington DC.  We then opened the floor and more parents of kids with special needs shared their stories about ignorance, discrimination, fighting for their kids, and the joys of raising unique families. We ended with a potluck dinner and time for people to meet and share information.

It was definitely humbling for us to share the stage with parents who have so much more experience than us, and relieving to be in a space where we could talk about how hard it can be to people who know what we’re going through and, as much as anyone can, what may lie ahead for us.  We were also really happy to learn about new resources — including Jane and Doreen, the two other local parents on the panel.

One of the amazing moments near the conclusion of the event was when one parent asked the crowd how many people were parents of kids with special needs (a few) and how many were friends of parents who have kids with special needs (a lot).  She said, “Wow.  I don’t have any friends left who are parents of ‘typical’ kids.”  She said that most of them can’t handle her family, and they get embarrassed or impatient when her kids act “strangely” in public.  So the success of the event wasn’t just making connections with other families who are facing similar challenges as we are.   Ultimately we all want our kids and families to be loved and embraced by everyone, so it was powerful to have so many friends and strangers there to listen to our stories.