Lucas Camilo

The other day Krista saw a little boy running around the coffee shop and it occurred to her that he was about the same height as Lucas.  She asked his mom how old he was and the answer was 2.

There are two things that were immediately striking about this: first, that a kid Lucas’s size is running around (quite a contrast to Lucas who has never stood, or even sat up on his own for that matter); and second, that Lucas is a tall dude for his age!  Lucas now weighs over 25 pounds and is 33 1/2 inches tall.  That’s almost 3 feet tall, and he’s only 16 months old!

The question “what’s Lucas up to these days?” is always a tough one to respond to in a brief sentence, but these days we’ve got a pretty good stock answer: “he’s, uh, growing.”  Sometimes we wake up on the morning and go to give Lucas a morning kiss in his crib and it seems as if he’s added another half inch during the night.  In fact, he’s nearly grown out of his second crib in the back room – there are only a few inches of space left before both his feet and the top of his head will be touching the respective ends.

All of this seems well and good – every parent loves to see their child grow, right? – except that as we previously mentioned, Lucas can’t sit up or move his body much as all.  While his fine moter skills are developing remarkably, his ability to twist his torso, to shift body positions or roll over, is pretty much non-existent.  His muscle tone is so low that he needs braces and props to hold him in any position other than lying flat on his back or tummy.

Under these circumstances, Lucas’s rate of growth isn’t all that exciting; rather, it’s downright scary, at least when we imagine ourselves years down the line.  The taller Lucas gets the more chance he’ll have of developing scoliosis later in life; the longer his torso gets, the quicker he grows out of his special braces and chair, meaning that he needs new ones.  Mostly though, it’s his weight gain that gets us thinking about the challenges of the future.

Already, picking Lucas up is a complicated ordeal, and at this point Victor and Florence (Lucas’s nurses) are the only people other than us who really feel confident doing it.  For example, when you put a single hand under his waist and lift, his butt goes up but the rest of his body stays on the ground.  His arms fall back behind him, his legs droop, and if you don’t have the other hand firmly behind his neck then you’re in big trouble.  All of this is compounded by the vent tubing connected to his trach and the pulse-ox monitor probe running from his toe, which add an extra layer to an already challenging maneuver.

And yet, lifting Lucas is not only necessary but often a total joy: when Lucas is in a good mood there’s nothing he enjoys more than  getting swung around the room,  or having his head flipped head back into “upsidedown Lucas” position, or laying on someone’s chest for a good snuggle session.  It wasn’t long ago that we could easily pick Lucas up and do all this stuff, and we can still pull it off, but 25 pounds of a very floppy body is different than 15 pounds.  And it’s hard to imagine 35 pounds.  Or 50.

The reality is that Lucas will may ever be able to walk, and he probably won’t be able to sit up straight on his own anytime in the near future.  Playing with him in the ways we now do will get more challenging as he grows.  Moving him from place to place is also going to get a lot harder.  Burke has recently committed to stretching his back more and starting to strengthen his abdominal muscles in order to better carry Lucas.  He jokes that he’s going to have to get a personal trainer soon in order to get all of his Lucas-lifting muscles in better shape.  And the thing is, it’s not really a joke.

There’s not much we can do about Lucas growing.  He’s not at all chubby right now and we’re certainly not going to starve him.  In general, being tall is a characteristic of people with Myotubular Myopathy, one of those freaky things about this disease that seems to doubly punish kids like Lucas: not only is this genetic mutation going to dramatically inhibit the development of your muscles, but it’s going to make your body really long as well so that moving around is that much more difficult.

We don’t mean to complain about this, nor to we want anyone to feel sorry for Lucas.  This is just a reality that we’re coming to terms with and which is important to share as we enter into subsequent stages of Lucas’s development.  There are so many amazing things that he’s doing these days that we (usually) can’t help but focus on the positive.  But every pound he gains and every ½ inch he adds to his height gets us a little close to that day when it won’t be so easy to pick Lucas up and dance around the room… and that’s scary.  Because dancing around makes Lucas happy.  And so does bouncing on daddy’s knee as he cruises in the make-believe choo-choo train.  We love Lucas so much that seeing him happy at these moments is the greatest thing in the world.  So we’ll cherish each minute, and look forward, sometimes anxiously, to new adventures that he can take part in even as he grows bigger…