Lucas Camilo

September has been the month of many outings for Lucas.  Our Labor Day weekend trip to the woods proved that we could pack well enough to make it through an entire weekend.  The momentum of that successful journey convinced Lucas (and us) to accept his first ever invitation to visit another home.

The invitation came from the Gomes family.  Burke got to know Yves, his aunt Dominica, uncle Henry, and cousin Harold through the immigrant stories project he’s working on, and we wrote about Yves and Harold a while back.  Yves has been the center of much deserved media attention since he won a stay on his deportation a couple months ago, but we were especially excited to get to hang out with Harold.  Harold has muscular dystrophy; a few years ago he got a tracheostomy and he now uses the same vent as Lucas.  But unlike Lucas, Harold is our age.

Although Krista and Lucas were meeting the Gomes for the first time, the dinner felt like a gathering of old friends.  We jumped right into talking about vent settings, suction techniques, and the adventures of home nursing.  We talked with Dominica about the family learning home trach care.  Harold told us the story of getting his trach, we told about everything we’ve learned about Lucas’s disease, needs, and abilities over the past year.  Although this may not sound like the stuff of intimate dinner conversation, it was.  And, among other things, we also got to hear more of the Gomes family’s immigration story as well as talk basketball, Yves and Burke’s shared passion.  Many, many thanks to the Gomes for a wonderful evening!

We talk about getting used to packing up for a Lucas journey, but the reality is that the list of supplies is so incredibly long that there’s often something we forget.  For our trip to the Gomes, we forgot to switch Lucas’s cloth diaper to a disposable one before we left the house, and we forgot the baby wipes, which we ended up desperately needing.. leading to an awkward situation in the middle of dinner :)  Last week we went to the doctor’s office and forgot Lucas’s food, feeding tube and the tray for his new stroller that carries his ventilator and suction machine.  We came up with creative solutions in each case, but there are so many other things that we absolutely can’t forget.  Suction machine and catheters.  Resuscitation bag. Extra trachs. Batteries charged on all the machines and/or back up power sources.  Fortunately, two of the machines we can’t forget – the vent and monitor – are always attached to Lucas, so forgetting them would be like forgetting our heads.  Which on some days seems possible.

Nonetheless, we still made it out to MORE adventures this past weekend.  It was Sha’s birthday this week so Lucas insisted that we roll up the street to his Sunday afternoon party.  Lucas had a good time, and he got to sit at the table and watch a card game, play with a balloon, and then lie back in the yard and watch the afternoon turn to evening.   On Saturday Lucas’s uncle Isham celebrated his birthday at the River House, and Victor agreed to come hang out with Lucas while the two of us went out for the evening.  It was yet another first – the first time both of us left the District of Columbia with Lucas at home.

On Tuesday Lucas’s Nonna and Papa arrived in DC to hang out while Krista goes to Oregon for an extended weekend.   On Wednesday morning all five of us went for a walk with Lucas strapped into his newly re-fitted fancy stroller, and later that day Krista hopped a plane for the west coast.

Though the increasing ease of car and stroller journeys with Lucas is exciting, it’s still hard for us to not be able to take longer trips.  Burke traveled to Seattle in August and now it’s Krista’s turn to go to Portland.  In both cases it’s bittersweet: nice to be able to go back to where we grew up and visit our families (for the first time in over a year); but sad to not be able to take Lucas, and difficult to have to take turns and not be able to all travel together.  For now, Lucas’s condition is still too fragile for air travel but that will change in the future.  And in the meantime we’ll keep rolling to the park and driving to the woods, at least as long as the beautiful fall weather allows us…