Lucas Camilo

We’re settling into a more routines with Lucas, something that was hard to imagine when we first brought him home from the hospital in November.  Back then we didn’t know what it would be like to have lots of machines around our home as part of Lucas’s entourage, or what the pressures of being totally responsible for a medically fragile child would entail, or how we’d handle having nurses around part of the time to help out.  New parents never really know what they’re getting into, but having a baby like Lucas takes that “we had no idea how much it would change our lives!” cliché to a new level.

And yet, despite all of Lucas’s continued challenges and the unique nature of our home (parts of which must look like a mini-ICU to newcomers) we keep settling into routines — from the weekly changing Lucas’s tracheostomy tube  to home suction machine maintenance.  And as those things become routine they feel less daunting and more like the normal stuff of being a family.  As Megan put it, after spending enough time around Lucas you start to think all babies come attached to machines.  Indeed, of the many great things Lucas has brought to us, one is the reminder that there is no single “right” way of being a family.

A rather amusing pattern that has emerged is Lucas’s penchant for being a night owl.  When there’s a night nurse – usually Victor, who’s become a favorite of Lucas’s and vice-versa – we shift the little guy from his big crib in the main living room area to a smaller crib in the back room.  This usually happens around 11 pm and allows us to sleep though those nights despite potential alarms, not to mention the growl of the suction machine.  Now, 11 pm is probably considered a rather late bed-time for a 8-month old baby, but that’s just the way Lucas likes it.  In fact, lately when we make the shift he’s often more awake and wiggly than ever, smiling, staring up at his mobile, and sucking his thumb.  We can’t help but hang out and play with him in these moments when he’s at his best; the problem, however, is that as it gets toward midnight we start to get rather tired ourselves.  So lately Lucas has been outlasting us, occasionally playing with Victor until 1 am while we sleep.

Of course, on these days he often sleeps in later and requires a couple naps during the day.  But for now Lucas seems happy with the routine, and if it works for all three of us, why change it?   What’s funny is the way it surprises people when they ask about Lucas’s bedtime – we sometimes get incredulous looks which makes us feel a bit sheepish, as if we’re irresponsible parents for letting him stay up until midnight.  But it’s just one part of his unique, non-traditional baby routine that we’re getting used to.