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Creature of Habit

Right before bed, after teeth are brushed and books are read, Simeon likes to hold his snow globe. All day it sits, ignored and forgotten, on the bookshelf beside his crib. He never seems to care about it until the moment I’m ready to lay him down, then he’s a writhing ball of frantic begging, desperately lurching towards that little glass orb– a last ditch effort to avoid bedtime.

I don’t remember when I started giving in but I know that for the past few weeks Sim doesn’t even have to ask. Before it’s time to say goodnight, I walk over and lift the globe from its perch. I turn the knob on the base and the music chimes. I flip it upside down then right side up and we watch the tiny statues go round– cat, fiddle, dish, spoon.  Sim does a little shimmy.

But the music grows sluggish and the snow settles. Sim squeezes the globe tight, leaving pudgy fingerprints on the glass and a slight thawing in my heart.  Then, even though he doesn’t want to, we put the snow globe back on the shelf. Because it’s bedtime. Every night.

Simeon is a creature of habit.

But things might be about to change around here.  Truthfully, they’re changing already.  I mentioned recently that Simeon has slept through the night with his trach capped. That means an entire night of breathing through his nose and mouth during sleep– a feat we wouldn’t even have dreamed of a few months ago. He kept his oxygen up. He didn’t work too hard, or retract, or wheeze. He was peaceful.

That was about three weeks ago. I didn’t say anything for fear of jinxing us but I’m saying it now: Sim has slept with his cap on during nap time and through the night everyday since then.  It’s a huge step.

We have a sleep study scheduled for next Thursday that should give us evidence of how well he’s maintaining this new routine.  Sim has had studies done before but now the stakes feel higher. If Sim can pass this test, the next step is a scope of his airway, and if his airway looks good (which it always does) then… no more trach.

And that’s big. And wonderful. And terrifying.

I am a creature of habit, too. 

I’ve never had a baby without a trach.  I’ve never been a mommy without the weight of a trusty suction machine slung over my shoulders.  So even if this habit is medical and high-maintenance and life-altering, I’m just plain used to it– changing will be hard.

For me, losing Simeon’s trach will be as much a struggle as it is a relief.  Oddly enough, that’s about how I felt when we got this thing in the first place. Doing what’s right for my child, watching him strengthen and grow in independence, feels good. But it also feels scary.

Scary like first steps or first wheels. Scary like putting your snow globe back on the shelf when it’s time to say goodnight. Scary like so many moments in life that dazzle as much as overwhelm.

And who knows– maybe he’s not quite ready yet. But maybe he is. We should know something in the next few weeks. I’ll keep you posted on next Thursday’s study and fill you in on what we learn. Until then, prayers and good thoughts would be the bee’s knees.