Lucas Camilo

Lucas has had quite an active social life lately, making frequent trips from our home despite the brisk fall temperatures.  And he’s unfazed by the many steps we have to go through to get him packed up… nor do the controversial new TSA regulations seem to bother him!  Ok, so we haven’t been through an airport yet with Lucas, but in the last few weeks we traveled upstairs for a great thanksgiving dinner with our neighbors, took multiple trips to our friend Sha’s house up the street, and made our way to a potluck dinner next door.   We’ve also had more visitors lately – close friends and family as well as people meeting Lucas for the first time.

It’s fun and exciting for us, but at times Lucas seems less enthusiastic about it.  In fact, he can become really shy when meeting new people.  It’s not an easily recognizable shyness; anxiety about strangers causes most kids to cry or run for their parents, but Lucas’s reaction is to appear totally spaced out.  People often end up saying, “Poor guy! He looks like he’s ready for a nap.”  One look at his pulse-ox monitor proves that to be false, and it’s especially frustrating because we’ve probably recently talked up Lucas’s new-found expressiveness, or his ability to vocalize over the vent, or his expanded arm movements.   (We should add that Lucas much prefers laying down to sitting up, so the fact that we often try to sit him up to meet people probably adds to his awkwardness about social situations.)  “He’s just not in the mood,” we say.  “But you should see him when he is.”

Two weeks ago we were excited to meet in person a family who we had previously connected with over the Internet.  Their daughter is about Lucas’s age and also has a tracheostomy.  There are dozens of quite unrelated reasons babies get trachs — Lucas has it because of muscle weakness, others because of lung problems, others because of brain or nervous system problems.  So it was a little bit startling for us to meet a little girl who has a plastic tube in her neck similar to Lucas’s and yet see that her family’s challenges are very different from our own.  Matt and Amy arrived with Brianna in their arms, not in a heavy stroller and unattached to a vent or monitor.  She crawled around our apartment, noticing interesting toys, grabbing them easily and shaking, studying, and tasting.  She could even pull herself up to a standing position.

The meeting and other recent interactions highlighted for us the extra uniqueness of our already unique situation.  Besides the trach and vent (Lucas’s most obvious and visible differences) he also remains very floppy.  He still can’t roll from his back to his side, or lift his legs off the ground, or hold his head up in the middle when he’s lying on his back.  He has very little head or torso control at all.    It’s scary to wonder if he’ll ever be sit up comfortably, without braces, for an extended period of time.  And sometimes this combination of his shyness around others and his extreme low muscle tone make for an awkward situation out in public.  All the more reason that we are appreciative of the amazing compassion, patience, and understanding many of those around us show for Lucas in his special situation.

Lucas has been waking up in a good mood lately, singing and laughing from the moment his eyes open.  The things that are so difficult vanish momentarily when Lucas grins with delight and waves his suction tube in the air.  We are grateful for it all — the bliss, the challenges, and the people who are loving us and walking with us on this journey.

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The writing class Krista has been taking ends this week.  We appreciate everyone who reads our writings on this blog, the thoughts sometimes still in formation when we post them.  Here’s a poem Krista wrote, another work in progress.

Cradling My Precious Son

I sit, holding you in my
lumpy lap.  You tell me,
scrunched face, head pushing back,
you are tired.

Everything
is uncomfortable

I plead, silently, for you to
find a place on my lap
that is acceptable.
I lift your heavy head, droopy arms,
sagging midriff,
and tilt your weight from
my left arm to my whole chest.

You lean in,
tell me – without sound –
you want your thumb.
I slip my hand
around your body,
under your soft elbow.
And in one fluid movement,
as if our bodies were one again,
I help you bring
your hand to your face.

As if that movement were one
we both had always planned on –
me helping you lift your hands.

Thumb in mouth,
eyelids immediately heavy,
you say thank you
as you submit to sleep.

And I feel the surge of the
deepest pleasure of motherhood,
oxcytocin and love and spirit and God
all filling my body at once.
All cradling my precious son.