Lucas Camilo

We’ve mentioned a couple of times the book “My Baby Rides the Short Bus,” an anthology written by parents of kids with disabilities.  It’s been such a helpful and moving book to us that we’re organizing an event with one of the book’s editors, Jen Silverman.  So if you’re in or anywhere near Washington DC, please save the date!  December 4, 5-7 pm.

We’re excited about the opportunity the event will give us to hopefully gather lots of people who care about kids and disability and rights and justice.  Empower DC’s Child Care for All campaign is co-sponsoring the event, and a number of parents in that group have been organizing together for years to push the city for more public resources for special needs families.  Jen and possibly one other author from the book will read and share their experiences.  And who knows — we may even share something about what Lucas has taught us so far.

As if the blog weren’t material enough to choose from, there’s now even more written about Lucas.  Krista has been taking an online writing class for the past month, producing more stories and reflections about our lives as a family.  Here’s one of the short pieces Krista wrote — part of a longer sequence of snapshot stories from life in the hospital last year.

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October, 2009

There are three picnic benches and a small gazebo that sit mostly abandoned behind Children’s Hospital.  They are dwarfed and out of place sitting near the ambulance emergency entrance to the hospital and out of any hospital visitors’ or workers’ path into our out of the building.  Those tables became a resting and grounding place for Burke and I – a place I now remember with strange nostalgia when I think back on those three longest months of my life.

I remember sitting at the picnic table, calling friends.  I needed the grounding that would come from talking to people outside the hospital, friends who knew me and believed in me and who would love me no matter what came out of my mouth, even if nothing came out of my mouth.  Once, when Lucas was two months old, I called Alice and told her “I think I’m a better person already.”  She smiled on the other end of the phone and assured me that I was.  And that this moment of seeing something positive about my baby’s illness was not about denial, or just an illusion, but something real that I could also hold onto.

I told Alice that day about looking at the disabled children we saw in the hallways – the ones with extra tubes, with big wheels chairs, with braces and canes and walkers, with drool and drooping jaws and loud voices.  Burke and I saw these kids in the radiology waiting room we walked through every day on our way to the cafeteria and knew, without saying so, that we both wondered if Lucas would look like them one day.  And I was ashamed to realize that every time before now that I’d seen kids with obvious disabilities, especially cognitive disabilities, I distanced myself – quickly and without even stopping to notice – and assumed that it would never be me.

But now, as I walked past these kids and their awkwardness and their families, I not only knew that could be me one day, but I realized that despite all our hopes that Lucas would recover and be a “typical” kid, I would love Lucas no matter how different he looked.  And that, by extension, I loved these unknown kids and their families and wished I could protect them from people who thought like I had.  Like a religious convert who’s suddenly found Jesus, I was filled ideas of evangelism.  What if everybody could feel this?  What if we all could know that all people with all kinds of abilities and disabilities are as perfect and loveable as everyone else?

For better or for worse, those moments of lucidity and exuberance were short lived, and I had no energy for proselytizing.  By the time I got to the cafeteria I was usually distracted by the task of reheating our lunch in the dirty public microwave ovens and the other menial tasks of surviving each day.

The day after our last post about Lucas’s positive health reports and development, Krista and nurse Florence were at the hospital with Lucas for another routine visit. Getting off the elevator someone walked by, looked at Lucas in his chair, and let out a sad “awww.” Then, a moment later in the waiting room a man came up and said, “it must be really hard.” Throughout the long wait Krista and Florence could feel the eyes in the room on them and Lucas, each time they fired up the suction machine to clear the saliva out of his mouth or adjust the vent circuit in a way that led to that familiar, loud beeping.

It’s weird that the same day Lucas was getting compliments on his blog – about how good he looks and the excitement of all the progress he’s made – people at the hospital were going out of their way to remind us of his dramatic limitations.  We still haven’t figured out how to get him comfortable in his new stroller/wheelchair, so he often looks pretty out of it when we’re rolling around.  And just a glance at the tracheostomy, the vent tube, and the monitor wire connected to his toe can be jarring, even at a children’s hospital where difference is often on display.

But what you don’t capture in a 5 second snapshot of Lucas is everything.  We’re lucky – we get to spend lots of time with the little guy and see him at his best: when he’s cracking up because someone is about to raspberry his tummy, when he’s exploring a fascinating new toy and deliberating on how to best get it into his mouth, or when he’s splashing his legs around in his undersized bathtub.  With Lucas, patience is a virtue.  The more time you spend with him and allow him to do his thing, the more remarkable he becomes.

So it wasn’t surprising that it was Florence who immediately piped up when the man in the waiting room expressed his sympathy about Lucas’s condition.  “That’s ok,” she said, “actually, he’s doing great!”  The man eventually sat down and asked more questions about Lucas, spent some time talking with him as well as Krista and Florence, and it ended up being a very positive interaction (he was from El Salvador so he and Krista had a lot to talk about.)

In fact, even though it can be awkward at first, we usually appreciate it when people come up and ask  about Lucas, as opposed to the more common reaction of quickly averting eyes in an attempt to avoid the reality of a child connected to a ventilator.   We don’t hold the latter reaction against anyone – we’ve had it ourselves when confronted with people who have disabilities.  But as this curious man in the waiting room found out,  there are great rewards to having the courage and patience to get to know someone like Lucas.

Of course, a few short videos from the last month probably capture Lucas’s latest exploits as well as anything.  Check out the middle one in particular where he demonstrates his newly developed call-and-response clicking; the other clips, meanwhile, show the ways he’s been using his gradually increasing strength and range of motion to explore what’s around him.

So much has happened in the last few weeks that it’s hard to know where to start.  Nonna and Papa went home; Krista got back from the northwest; Lucas has decided that tubes are definitely his favorite toys; we’ve almost completely transitioned from breast milk to a smoothie diet; we’ve seen lots of specialists for routine visits; the three of us went on more outings together; and Lucas has started to grow chest hair.  OK, just kidding about the last one.  But he’s growing so fast that sometimes it seems like one day he’ll go to sleep a baby and wake up a teenager.

The good news on the health front is that Lucas remains super healthy.  He underwent a test last Friday in which a doctor catheterized him, drained his bladder and then filled it up again with some radioactive liquid.  They then took pictures of his bladder and ureters – the tubes that drain down from kidneys to the bladder – to see if the valves are now working and the fluid would stay in his bladder.  Lucas was piping mad as they pumped his bladder full.  (When he heard about it later, Burke was mad too, and thankful to not have to sit through the procedure since he doesn’t handle those kinds of things very well.)  In the end, it was a success – the liquid stayed where it was supposed to, meaning the valves are working and therefore he doesn’t need to take his daily preventative antibiotic anymore!  One more drug we’re done with.  The following Monday morning he was back in the radiology clinic, this time for some routine CT scans of the ventricles in his brain.  The images show that everything is steady, which is good news again: no need for invasive procedures in his brain.

Meanwhile, other signs of health that don’t show up on ultrasounds or CT scans are just as positive.  Lucas has been wiggling around more than ever, cracking up when we tickle him or even threaten a tickle.  His neck seems to be getting stronger, so he looks around the room or studies toys more purposefully.

Modeling Solidarity Cyclers 2008 T-shirts

Maybe it’s the lentils and Swiss chard, or maybe it’s the new vitamins, or maybe it’s the alignment of the stars, but Lucas just looks more vital and happy to be here than ever.  It’s been great.

This past weekend was CISPES’s fifth solidarity cyclers 3-day ride around Maryland, Virginia, and West Virginia.  The two of us, pre-Lucas, helped start the fundraiser ride and we rode it three seasons in a row (check out this video Burke made from 2008).  Every year the cyclists have stopped to camp one night at the Wheatland Vegetable Farm in rural Virginia.  So on Sunday the three of us drove out to the farm to deliver beer and share dinner with the sweaty cyclists.  Every year the ride has taken place during magnificent late-summer-turning-to-fall weather, and this weekend was no exception.  It was a beautiful evening, and despite the prolific population of stink bugs that wouldn’t leave him alone, Lucas seemed to have a good time.  A highlight of the evening was seeing Chip and Susan, the owners of the farm and the visionaries who helped establish farmers markets in the DC area in the late 70s.  Lucas got to hang out in Susan’s arms as she told him about his last trip to the farm, when Krista was 5 months pregnant and growing fast.  Indeed, Wheatland is also the place where friends and family gathered last spring for our commitment ceremony and since Lucas was born in a hurry 2 short months later, we haven’t been back since.

Whether it’s hanging out on the farm, in the backyard, on rolling around on the floor in the living room, chances are these days that when you come across Lucas he’ll be clutching the same thin, translucent object in his hands: the suction tube.  This 5-foot piece of rubber, extending from the growling suction machine to the soft-tipped oral suction catheter, has become Lucas’s very favorite toy and security blanket.  If we hand Lucas the tube when he’s hanging out on his exercise ball it always puts a smile on his face and an extra bounce in his step.  To test out Lucas’s remarkable new reaching skills – he can now bring both arms straight off the ground and hold them vertically extended in front of him – you just need to dangle that suction tube above his head.  We’ve even come to think that sometimes Lucas cringes and pretends that he needs to be suctioned just to trick us into pulling out the tube, at which point he clutches it and holds on for dear life.  He also has an uncanny ability to sense the presence of the tube, whether behind his head or under a pillow, and he almost always figure out how to use his limited movements to grasp it.  And once he’s got a grip, good luck loosening his hands from that tube!

Burke’s parents spent nearly a week in Washington DC and got in a lot of quality Lucas time while Krista was away.  For his part Lucas had a great time, from singing the Na-Na-Na song, to taking strolls around the neighborhood, to sitting outside as Nonna gardened, to playing with eye glasses, watches, suction tubes … just about anything other than actual toys.

The trip to the farmers market over the weekend was a particular highlight, as was taking naps in both grandparents’ arms.  Burke got to take some time off from work so that the family could hang out together.  Nonna also taught Lucas the wonders of prunes, which can help both big people as well as a little dude who just started taking in all sorts of new foods.

Krista missed Lucas a lot but every time she called Burke assured her that Lucas missed her too but that the proverbial fort was being held down.  We often put on the speaker phone and let Lucas chew on it and smile as his mommy talked away..