Lucas Camilo

(Burke writing) We’ve been trying for a while to post something about all the cool things Lucas has been up to the last month… and by extension, all the cool things we’ve been able to do with him lately.  That particular post is in draft mode as we’ve been too busy to finish.  But in the meantime I feel like talking about something else that’s been on my mind related to Lucas.

You see, despite all of his amazing feats and progress, it’s still really hard to communicate with Lucas these days.  And sometimes when friends visit who have read all of our positive, uplifting blog posts — but haven’t met Lucas or seen him for a long time — we want so bad for there to be a good interaction, and they want it too… but, well, Lucas is a bit ambivalent about the whole thing.  And that can be hard.

We’ve talked before about his unique way of communicating: he rarely responds to direct questions unless repeated multiple times; he won’t talk about feelings or emotions; he seems uninterested or unaware of the “why” questions that most kids his age ask repeatedly; and more often than not he’d just assume get to reading a book or doing a puzzle.  All of this makes it very difficult to have an actual conversation with Lucas, beyond a few back and forths that often feel pre-rehearsed.

Sometimes we forget about all of this because Lucas is so smart and so funny… and overcoming so many obstacles to even communicate at all!  And, his ability to communicate really has improved a lot of late.  But still there are times its frustrating because we know that he has so much potential to interact and yet for some reason chooses not to.  A few times over the last few weeks this has come through when we’re with friends who really want to get to know Lucas.   They ask him questions and do their best to make a connection based on what they know about him.  At best, any conversation has to be facilitated by the two of us; more difficult is when even our facilitation doesn’t break through the apparent communication barrier.  In those cases, we acquiesce, letting Lucas turn to the “other side!” as he demands (with his head pointed away from the action and toward the backrest of the couch) so that he can read a book, do a puzzle, or play with the iPad “by yourself!”  (He still prefers using the second person “you” when referring to himself which also makes for tough communication.)

It recalls up for me some really poignant, though hard, conversations that I had recently in a special needs dads support group.  Granted, the kinds of disabilities our kids face are all over the board, and yet at the same time there are some intense commonalities of experience.  A number of dads with older kids talked about how at a certain point it became apparent that their special needs kids (in contrast to their typically developing kids) weren’t getting invited to many play dates, or birthday parties, or activities that involved bringing families with young kids together.   And that was hard.  Krista and I feel very fortunate that we have a family and community here in Seattle that love Lucas and seek to include him.  But the fact of the matter is, he’s hard to include.  Often that’s because of his wheelchair, and trach, and vent, and suctioning, and all the gear we have to lug along to even get to a gathering.  But it also has to do with his communication and the challenge, and sometimes awkwardness, of including him.

Part of our emotions around this go back to the recent passing of one of Lucas’s MTM buddies, Matteo.  As we shared in our last post, his parents have been so amazingly open in writing about their son’s death, and displayed such intense love for him, that every time we read something on Facebook it brings a flood of emotions.  His dad’s eulogy, posted yesterday, hit me hard… not just because I could imagine myself having to write something similar about Lucas sometime in the future.  But also because it struck me how much Matteo was like Lucas… quirky in his communication, very difficult at times to read and understand, and yet deep down, an amazingly vibrant human being.  Perhaps the tragedy is that too few people get to really know the likes of Matteo and Lucas.  In that sense, Krista and I, as well as Donald and Nancy (Matteo’s parents), are extremely fortunate.  We spend so much time with the beautiful enigma that is our child that we get to truly know all that he encompasses.   And still, its hard to know that others aren’t quite so fortunate…

On Friday morning we read a single line from a parent of another little boy with MTM – “We held Matteo until his heart stopped beating at 4:30 am.”

Everyone in the MTM community had been following along for a week after Matteo suffered a devastating seizure and cardiac arrest that left him in a coma.  It’s impossible to describe the feelings of heartbreak we felt during this time… not to mention total admiration for the family as they struggled through the final days of their son’s life.

Since Lucas was born a number of boys with myotubular myopathy have passed away but Matteo is the first who we actually got to know.  We met him at the MTM family conference in Minnesota this summer and he stood out as a bright presence – slightly older than Lucas and doing so well in school, and in the world, that he gave everyone hope.  We also marveled at how amazing and dedicated his parents were, having driven from southern California with Matteo in order to be at the conference.  Donald, Matteo’s dad, gave us a tour of their van and proudly showed off various ingenious adaptations (as Burke took notes).  His mom Nancy joined a small group of parents that we helped organize for a two-hour session of personal sharing about the challenges of raising kids with MTM, and she was extremely thoughtful and caring in her words.  We talked about setting a meeting place somewhere in Northern California where we could get together and have a mini-west coast MTM conference some time in the future.

Matteo’s seizure was sudden and his death totally devastating for everyone.  And yet this is the reality of loving a child with a severe neuromuscular disease like MTM.  What was perhaps most powerful and heartbreaking about Donald and Nancy’s updates during the last week of Matteo’s life is that we could imagine ourselves there, in that hospital room, in that situation.  They described doing things we have done — washing the gluey gunk off after an EEG test, singing your son’s favorite song to him while he sleeps, and hoping and praying with all your soul that things will get better.  Donald and Nancy have been incredibly open, inviting the MTM community in to witness their painful journey these past days.  Other families who have lost children have in turn responded with sympathy, telling about their first days home after losing their children.  The rest of us know we could be in their shoes, and we send so much love, because that’s all that we can really do.   But we also hope that when we need it, we find a way to embody the courage, poise, love, and humanity that Donald and Nancy have shown in the last week.  Just one example of their big-heartedness in the midst of tragedy is that they worked out complicated logistics so that at least four other children benefited from Matteo’s donated organs.

Death puts everything quickly into new perspective, like a rapid zooming-back of the camera so that you can see what was always there, barely out of view: that we are mortal, and that our lives are fleeting.  We’re trying not to give Lucas too many more squeezes (he’d be annoyed that we were interrupting his precious reading and spelling time), but we are feeling extra aware of how precious our time with him really is.