Lucas Camilo

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.