Lucas Camilo

Lucas had a good weekend, highlighted by his first trip to the Unitarian church up the street.  Krista has been going to All Souls for years but officially became a member today.  We’ve gotten to know a bunch of people the social justice-oriented congregation, especially through a class she took there called “the Soulful Path,” so it was fun to introduce them to Lucas.  A number of them  brought us food and helped out around the time of Lucas’s birth, something we’ll always remember and appreciate.

In another cool connection, the pastor Rob Hardies lived in the same town in Guatemala — a post-war repatriation that was still experiencing trauma — as Krista back in the 1990s.  He’s a great guy, and was prepared for our vacuum-cleaner sounding suction machine to kick on in the middle of the sermon should Lucas need it.  As it happened, Lucas was kinda freaked out by the huge crowd, or the clapping, or the loud organ (or all of the above) and so we had to take him out into the hall early on, do laps and sing songs.  It turns out he’s a lot more into “Old McDonald” than the holy spirit (for what it’s worth, there’s not much mention of the latter at All Souls anyway, as people “walk diverse spiritual paths”).

Lucas calmed down later and we were able to hang out for coffee and donuts after the service.  A couple who was visiting from California came up to us and introduced themselves as parents of a young woman with disabilities, and they talked about how supportive their Unitarian congregation had been to them and their daughter.  We talked to them for a while and it was a really nice connection to make.

Back at home, we caught Lucas perusing one of his favorite anti-imperialist magazines – WIN, the quarterly publication of the War Resisters League – and he proceeded to engage in a game of “where’s Lucas”.  Halfway through we switched to video mode and recorded a pretty funny clip of Lucas.  Enjoy!

Have we mentioned that Lucas LOVES DUCKS? He says (signs) duck when he first wakes up in the morning, when he’s happiest throughout the day, and then later when he’s grumpy, and then again as he’s falling asleep at night. It’s tough to say what he loves more right now – ducks or books – since he usually signs the two together. Meaning, “get me a duck book.” He’ll even throw in a “please” and a “thank you” if he doesn’t see you moving quickly enough to get him a duck book.

Lucas’s fascination with ducks has been growing over the past few months. First he learned the sign and loved quacking his fingers together. Then he learned to identify ducks in his books, and pretty soon he was rapidly flipping past all the other animals until he got to the duck page of any animal book. When he lands on the page with downy, yellow ducks, he points, smiles, and quacks his hands proudly. He’s now able to “read” himself more pages in the animal books (signing cow, butterfly, sheep, cat, and mouse too), but he still pauses longest on the duck page.

So it occurred to us recently that he might like real ducks. Over Memorial Day weekend we went with our friend Alexis out to the Kenilworth Aquatic Gardens – a preserved wetland area with old lily and lotus gardens along the Anacostia River. It was great for Lucas because there was over a mile of accessible boardwalk that wound through the wetlands, but the closest we found to ducks were a family of geese. The growing goslings looked a lot like ducks to us, but either the sun was in Lucas’s eyes or he just wasn’t buying it.

So this weekend, with Nonna and Papa in town visiting, we decided it was time to see some real live ducks. On Saturday morning we packed Lucas up early  — it’s been humid and in the 90s for the last week — and beat the crowds to the bird exhibit at the zoo.  (For some strange reason the ducks are not a featured animal at the National Zoo and thus we had missed them the couple other times we’ve wandered around.)

This would be a great story if Lucas had gone crazy when we finally saw ducks. But in fact, his reaction to the ducks pretty much matched their reaction to us. About a dozen ducks floated peacefully around three small ponds in the shade. A couple stood on rocks on cleaned their feathers. A mommy duck led a pack of tiny babies through the pond. Lucas looked intently, and with our encouragement of ducks! ducks! ducks! and quack! quack! quack!, he eventually said “duck.” Unclear if it was because he was happy about the ducks in front of him — maybe totally awe struck — or just to get us to stop quacking at him.

We later found ducks hanging out with the flamingos, and they were fun to watch. But soon Lucas gave us the “go” sign, and he actually looked happiest when we were cruising around, stopping and going every 10 steps on his command. So the jury’s out on real ducks. But, of course, as soon as we got home he was ready for a duck book.

And Nonna and Papa have come up big for Lucas in the books category, too.  Since they arrived on Thursday he’s had them reading him books for hours on end. And he’s also gotten some good  sessions in the swing as well as endless singing of “Old MacDonald,” with Lucas requesting “duck” for every verse. (Thanks Nonna and Papa!)

Despite his questionable fashion sense (see previous post), Lucas is doing well these days.  He’s added “cat” and “hug” to his vocabulary, and we’re working on “dinosaur” so he can start requesting more books by name.   Unfortunately he’s still reticent to perform for the camera (besides waving his arms in the universal “gimme!” sign), but we’ll catch some more video soon.

Although I’ve been back almost a week, I thought I’d write a bit about my adventures in the northwest. (Krista writing, this time.)  The trip was meant to be a combination of exploration and information seeking for our pending move, along a relaxing visit home.  And somehow with what felt like a dozen meetings scheduled in two cities over the course of 5 days, I managed to make all that happen.  Or, I should say, lots of people helped me make that happen.

Building on the research that Burke did a couple weeks ago, I went to check out another preschool in Seattle and met with a special ed service coordinator in Portland.  Both meetings were somewhat informational, but like Burke’s visit, they were also hard.  I was reminded of how complicated it is to describe Lucas.  Often I found myself really emphasizing Lucas’s disabilities, stressing that he’s going to need A LOT of help.  He can’t move his torso much.  He can’t sit up, roll over without assistance, or lift his elbows if he’s sitting up…  It feels terrible to describe Lucas in a list of negatives, but without doing this, professionals picture a more “typical” special needs child.  In both meetings the professionals tried to be positive, but their “don’t worry, we’ll make it work for Lucas,” felt dismissive.  That’s nice, I thought, but what about the fact that all the three year olds are in the sandbox right now throwing handfuls of sand at each other?  Lucas’s chair could not get in the sandbox, and he certainly can’t have sand near his neck.  I feel like we deserve more specific answers than “we’ll make it work,” but without having Lucas along side me to show off, I wasn’t sure what more to ask.

Of course I’m glad that the predominant philosophy in education now is to “mainstream” kids rather than isolate or hide away children with disabilities.  But we also know that in a classroom Lucas is going to need nursing assistance, as well as creative teachers and aids who can help him and his peers into situations where he can express himself, learn, and play with other kids.  Maybe it’s an unrealistic question to ask if those people will be there when we need them.  But I wanted to know.  Will there be an administration that really values difference, and models which embrace children of all abilities?  And will there be wheel-chair accessible classrooms?  And music rooms?  And playgrounds?

We may be starting along this path of questioning a little bit early, but it feels like we should ask these questions before we choose the school district where we’ll live for the next decade or two.  Ultimately, it seems that we’re going to have to trust that wherever we end up we’ll dig until we find the people who care about quality education for all children.

I also met with a pediatrician who we will likely choose for Lucas if we move to Seattle.  She’s been in practice for a long time, and she’s worked with many medically fragile children.  In contrast to the meetings with schools, she had a very clear idea of things she could help us with – home nursing, therapies, specialists, medical supply companies, etc.  She even offered to help connect us with other parents of medically fragile kids, and she said she’s planning on reading My Baby Rides the Short Bus.  (For our moms who are keeping the Portland vs. Seattle tally, that’s one point for Seattle. :)

One of the highlights of my trip was meeting Shannon, mom to a 9-year old with MTM.  Their first years with MTM were very different than ours – their son was 2 when he was diagnosed with MTM and 3 ½ when he got his trach.  But there are many things that felt very familiar and reassuring about meeting someone else who’s walked our path.   Maybe most significantly, in light of some of our questions about schools, was hearing that Javad is thriving in his second grade classroom, and that his “typically developing” peers love and include him.  It was also great to hear about some of the logistics of how they’ve structured their lives – the layout of their house, their nursing schedule, transportation options, power chairs and communication devises, etc.

Another major highlight of the trip was seeing some of the many people I love in the northwest.  My mom and sister and I got out for a short but beautiful hike in the Columbia River Gorge.  I got to see my friend Jennie who I’ve know forever, and who is now radiant and pregnant.  And Alice, who somehow managed to act sane and hang out with me just days before turning in her dissertation.  I was in Seattle for just 24 hours, but in that time I was lucky enough to get to visit with a few old friends as well as Ashley, Brandon, and our nieces.  Madden, Ella, and Tya stayed up late to see me, and we read bedtime stories together.  It was great to see them, and especially exciting to imagine cousin sleep-over’s that might one day have the girls reading Lucas his bedtime stories.

And it’s good to be back – I missed these guys!  Here’s Lucas working on the sign for “go.”

(Burke writing) I made it out to Seattle on Wednesday for a brief trip, the goal of which is to do some reconnaissance for our potential move to the Northwest, as well as hang out with my family, who I haven’t seen all together since last summer.  Though we’re still a ways away from starting to pack up and leave DC, we are beginning a process (as we talked about last month) that will move us in that direction.  The first step is to figure out if Seattle and Portland – our two options – have everything Lucas needs for a good transition to occur.

In the last few days I’ve visited with doctors, preschools, and parents to learn about what Seattle has available.  It’s been an enlightening trip so far, and without making any conclusions or going too deep into details (because I don’t have much time to write), I did want to share a few things that I’ve learned.

First, even at places that are set up for kids with special needs like the Boyer Children’s Clinic and the EEU (both of which I had the opportunity to visit with my mom), there aren’t a lot of kids that look like Lucas.  Actually, there weren’t any kids with vents and/or trachs in the classrooms we observed.  I guess that’s logical since the most common disabilities that kids have don’t involve severe muscle weakness in the way that MTM does.  But it was still discouraging: on one hand, visiting classrooms, seeing 2 year-olds with disabilities participating, and talking with teachers made the possibility of Lucas someday being part of such a classroom real; on the other hand, the absence of medically fragile kids in those spaces made it difficult to actually envision.

Which made the experience yesterday of meeting another family with a child who has Myotubular Myopathy all the more amazing.  I connected with the McLaurin family through Facebook (many MTM parents are part of Facebook support groups) and they invited me to stop by their house north of Seattle yesterday afternoon.  It was wonderful to meet 3 1/2 year -old Trent and see how well he is doing: using sign language, holding himself up, taking part in the world around him.  His special needs are very similar to Lucas – trach, vent, and feeding tube being the most visible examples – but there are also things about Trent that are distinct (“every boy is different”, said his mom, who has had the opportunity to meet a number of other MTM families).  From the experience I know that Lucas is going to be excited to meet Trent and other little boys with MTM someday, and I know Krista will be excited to meet his parents.  Perhaps the best part of the visit was getting to talk to them and hear how similar we are in our outlooks about MTM, navigating the world of disability, and being strong advocates for our kids.

Finally, I miss Lucas!  It’s such an exciting stage that he’s going through right now, developing his ability to communicate through sign language, that it’s hard to be away for even 5 days.  I can’t wait to get back on Sunday and see Lucas and Krista and hear about their adventures in the warm spring of Washington DC (quite a contrast to Seattle, where clouds, rain, and highs in the 50s have greeted me – Krista’s not going to be happy about that part of the potential move report…)

Yesterday we decided to take Lucas down to the White House for his first ever political demonstration (note: this is a long post – scroll to the end if you just want to see pictures).  In the past, we’ve lamented that Lucas’s disability and medically fragile state has prevented us from being present as a family at marches and rallies, which is sad because getting out to a good protest is something we love to do.  But since Lucas has gotten stronger and we’ve become more confident in traveling around with him, the time seemed right to break through the protest-barrier.

They were two other reasons that this seemed like a perfect first march for Lucas.  First, the weather was great – warm but not too warm, with clouds in the sky but no chance of rain (Lucas can’t handle the bright sun and doesn’t much care for his sunglasses either).  Second, some of our friends have been working for the last week to build festive, giant puppets to parade through the streets of downtown DC.  This was not going to be your typical somber anti-war protest but rather a celebration of “disarm-ageddon”, complete with creative “art-tillery”, puppetistas, a festive marching band, and plenty more colorful props.

We assumed that bringing Lucas along for the entire march (from Dupont Circle to Lafayette  Park) would be a bit much so we parked within a couple blocks of the White House and then walked back towards the approaching crowd.  Once we saw them coming we perched ourselves on a street corner and got Lucas ready to raise a revolutionary fist.  Everyone was overjoyed to see him – some friends on stilts approached, dressed up as the “four horses of the Apocalypse” (see photos) and waived, while another friend with a horn came over and honked in front of us.  Lucas seemed calm (if a little overwhelmed by it all), so after the bulk of the march passed by we decided to jump in and join some more friends who were pulling up the rear.

And that’s when he lost it.  Maybe the noise of the band and the chants became too much, but all of a sudden Lucas got an extremely angry look on his face, and then he just stopped breathing.  He was connected to his pulse-oximeter but it was too loud to hear the alarm, and besides we can usually tell that he’s losing color well in advance of the machine starting to beep.  With his lips started turning blue we quickly got over to the side of the street, pulled out his resuscitation bag, and gave Lucas some manual breaths as the march had moved ahead.  In the midst of it all a nice person in an SUV drove up and asked if he should call an ambulance; we laughed nervously and said that everything was under control.

And indeed it was.  One could perhaps accuse us of being irresponsible parents for bringing a ventilator-dependent child to a raucous protest, but we swear that weren’t putting Lucas in any serious danger.  Sure, he was pretty angry with us at the time, but when we laugh with him about this story some day in the future we hope he’ll recognize that we just wanted him to have a diversity of experiences, and that inevitably a “first-time” like this can be a little jarring.  And though the sight of us using a resuscitation bag on the street corner was probably alarming to a lot of people (much more so than the passing of a urine sample – see our previous blog post), it’s a routine that we’re now quite adept at.  In matter of seconds the color was back in Lucas’s face, and a few minutes later we were ready to roll.

Since he seemed to have calmed down we tried once more to merge into the back of the slow-moving march but once we got close to the noise Lucas again got angry and stopped breathing.  So we motioned to our friends that we’d take an alternative route back to the White House and left the hundreds of festive protesters behind.

Ultimately we found a spot in Lafayette Park about 50 feet from where people were streaming in and sat back to cheer them on.  We got to say hi to Christie and Oz, frequent blog followers who live in Boston and who have therefore never met Lucas, as well as hang out and take pictures with Franny (who accompanied us when we split off).  We tried to explain to Lucas why we were protesting the government on this particular occasion – it involved cutting off funding for the “School of the Americas” plus other US-sponsored military ventures in Latin America – but he didn’t seem to interested.  In the end, we lowered his chair down and just let him chill amongst the blooming tulips; that was about as content as we saw Lucas all afternoon.  Until we got home and he was as happy as can be…

Spring seems to be slowly arriving in Washington DC, with beautiful, sunny days still interspersed with cold temps and the occasional wind-storm or freezing rain.  We’re excited about getting out outside for some walks with Lucas, hopefully as soon as this weekend when Burke’s parents are in town for a visit. The transition that spring represents also has us thinking about larger transitions down the line: the likelihood of leaving DC in the not-so-distant future and moving back to the Pacific Northwest.

For a couple years now we’ve talked about the possibility of moving to either Seattle or Portland, despite our friends’ great lobbying efforts to keep us here.  Both of us grew up in the Northwest, our families live there now, and the mountains, rivers, and Pacific Ocean are in our blood.  In the long run we imagine ourselves living in the great states of Washington and Oregon, and as we think about finding a more stable living arrangement – since the mid-90s, neither of us has lived in the same house or apartment for more than 2 ½ years– it’s logical to make the move sooner rather than later.

And yet there is a lot that we love about Washington DC that’s going to be hard to leave.  We’ve managed to build a wonderful community of friends and fellow rabble-rousers, and leaving DC would mean leaving that community behind, not to mention some of our favorite organizations in the world.  We moved to DC in the fall of 2007 and yet it feels like we’ve been here a lot longer.  In a city with a reputation as a transient hub (at least amongst it’s more affluent, white residents), we’ve manage to encounter a much deeper sense of community than we ever imagined when we first arrived.  It’s because of such great friends and community that it’s hard to even talk about the possibility of moving.

The other challenge, of course, will be moving with Lucas.  We’ve developed quite a network of doctors, specialists, therapists, and nurses who are part of Lucas’s team, and re-establishing that network somewhere else will take time.  For now at least, Lucas needs to be in a good-sized city that has adequate resources and support for people with disabilities.  We’re confident that both Seattle and Portland will do the trick, but it’s nevertheless daunting to imagine the process of building a whole new medical and therapy team.

So as we start to think about moving, there’s a lot that we need to investigate and have in place.  Having sufficient health care insurance in place is essential, and part of the reason we can’t just move next month is that we need to ensure we’re on a family plan that can move with us (at least temporarily) as we transition of from DC to the west coast.  Then there’s secondary insurance and the eligibility requirements and waivers necessary to get Lucas on a Medicaid-funded program locally that will cover things like nursing and equipment that may not be covered under our primary insurance.  We’ve started to reach out to parents of special needs kids in the Northwest to investigate these things, and are planning trips to Seattle and Portland in the coming months to set up meetings and continue these discussions.

And then there’s schools.  Lucas is only 18 months old but we’re already starting to imagine what it’s going to be like for him to go to school.  What are the public schools like in each place in terms of their accessibility to and integration of children with disabilities (especially medically fragile kids like Lucas)?  Are there other schools specifically for children with special needs that are worth considering?  What kind of parent and support networks exist?  (And will there be books about disappearing ladybugs, Lucas asks?)  These are all questions we’ll be looking to answer in the coming months.

We know some of our blog readers live in the Northwest, while others live in different parts of the country but have a lot of experience thinking about these challenges.  We’d appreciate any thoughts, input, contacts, and connections you may have that will help us along our way.  We’re excited but also a little intimidated about this process, and would appreciate all the help we can get.

Despite the threat of yet another storm on Friday, we went ahead and took Lucas out to Berkeley Springs, West Virginia for the weekend.  The small cabin we rented outside of town met all our needs — we could drive right up, it was surrounded by trees, and it had lots of electricity.   It also had a flat screen TV and DVD player – not exactly roughing it in the woods, but we figure the challenge of packing for Lucas-travel automatically qualifies us for roughing it.  We managed to watch a few of movies, read some books, play around the house, and even try “sledding” with Lucas.

The weekend was not without its challenges (let’s just say there won’t be any more winter road trips this year), but it was ultimately good to have a change of pace.  Here are a few photo highlights, starting with Lucas’s introduction to the snowball.

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…