Lucas Camilo

We’re writing with a major sense of accomplishment today having just returned from our first big family road trip — to Brooklyn, then Boston, then back to Washington DC.  We had a great time, and Lucas was especially a champ.   Most of the trip went better than we could have hoped for, though it was not without its rough spots.  For example, Krista has sworn off EVER driving into New York City again.  Ever.

much needed rest near our rented hybrid SUV

There were so many remarkable things about the trip.  First of all, Lucas has never sat up for more than a couple hours at a time before… and our drive from DC to Brooklyn took more than seven!  Though we took a couple short breaks along the way, this was still asking a lot of Lucas’s body.  He was exhausted by the time we arrived, and we were worried that he might be pooped for the next few days.  But as soon as we got him out of the car and into a bed, he perked up and was in good spirits.   And the same thing happened with our drive from NYC to Boston (which took five hours) and the return trip to DC (which we split up into two parts).  He read books, played with his singing turtle, read more books and requested that we sing songs.  As the trips wore on he got impatient and then physically drained, but that’s to be expected of anyone who spends so much time in a car.  So though it was tiring, it was exciting to discover that Lucas can travel far from home.

A major highlight of the Brooklyn trip was reconnecting with so many friends, some who had never met Lucas or hadn’t seen him in a long time.  Saturday was a beautiful summer day, and we spent 10 hours sitting out on Kevin and Liz’s porch as friends stopped through to hang out.  A special moment was Lucas’s meeting with our friends Manuel and Lisa and their two kids, Emelie and Antonio.  They brought Lucas a few of their favorite books and the two of them were patient and gentle as they read through the books with him.  It was incredibly sweet to see Lucas hanging out with kids we love so much, especially since he’s been nervous in the past.  We saw so many other friends throughout the day – Jacoby and Lezlie, Marsha and Ruby, Jesse and Alessandra (who were 9 months + 2 days pregnant!), Elspeth and Katrina, Phil, Tom and Chris – and we want to say thanks to all of you for making your way out to visit us!

(Lucas wouldn’t let us write about Brooklyn without mentioning the fact that we stayed at the “cat house.”  Kevin and Liz have four cats, and the minute we got into the house, Lucas spotted a cat and started frantically making the sign for “cat”.  He was very proud of himself, pointing and making the sign every time he saw one.  He also loved their ceiling fan, pointing it out and signing “fan” almost as much as “cat.”)

In Boston we spent more time connecting with new/old friends, and Lucas continued to do well.  We stayed with Jocelyn and Jason and their two kids, Arabella (2) and Jackson (4), who had been getting ready for Lucas’s arrival by practicing calm voices and gathering up duck books.  Their strategy worked – Lucas seemed very happy hanging out with them, and again it was great for us to seem him interacting with kids.  They even took us to a playground near their house where Lucas got to swing (with some help) on a playground swing.  He was tired from all the travel that morning but also totally fascinated watching Arabella swing right next to him.

Jason, Jocelyn, Jackson and Arabella were amazing hosts and we really appreciated having the kids spend time together and being able to have other friends drop by their house (like Christy and Oz, who stuck around for some quality book time with Lucas). It was also great to talk parenting and politics with Jocelyn and Jason after the kids went to bed.  Burke and Jocelyn met while living in El Salvador back in 2002 (though they haven’t seen each other since), and because Krista also lived their for more than a year we had many mutual friends to catch up on, stories to tell, and Salvadoran politics to dissect late into the night.

Our trek to Boston was partly vacation, but we also chose to go there in particular because we wanted to meet the researches who are studying myotubular myopathy.  So on Monday afternoon we went to the lab at Boston Children’s Hospital and met with its director, Dr. Alan Beggs.   Dr. Beggs and Elizabeth, a genetic counselor who works with him, made us feel very welcome, and they were clearly happy to meet Lucas.  We’ll write later about what we learned there – nothing astounding, but more details than we had known before.

Before heading back to DC we got to meet two families of kids with disabilities.   On Tuesday morning we met Will, a 10 year old with MTM, his mom Erin and their nurse Sue at the Boston Science Museum.  Will knew Lucas likes duck books so he brought Lucas “Make Way for Ducklings” (a Boston classic).  Will’s a huge Red Sox fan, and he used his computer to tell us about his recent adventures meeting some of the Sox’s players.  It was great to meet Will and Erin and begin to learn from their many more years of experience.  The night before we got to meet Jim and Cora, parents to a 3½ year old named Leo (who we didn’t get to meet this time around).  Leo has some similar and some different special needs as Lucas, and it feels like we have a lot in common with his parents just by nature of being young families navigating disability.  Dinner with Jim and Cora felt like meeting old friends – relieving to meet other people who know what we’re going through even before we start telling them about it.

Thanks to everyone who helped make the trip possible!  Here are a few more pictures:

Kevin reads a book while hangin’ in the cat house

Lezlie, Jacoby and Lucas get crazy with finger pupets