Last week, I wrote about survival mode, the auto-pilot that kicks on when life serves up trauma.
Survival mode, it turns out, can be a kind of ignorant bliss. Worrying about nothing outside of the bubble of basic needs and functions is a form of escape, just like returning to a sense of normalcy — work, or settling into an old or new routine — can be.
But in the world of the NICU, the rugs are double-sided. In one fell swoop, the rug can be pulled out from under you, plunging you into despair, only to flip back over and support your weight again.
We’re learning that what we think of as a setback can actually be a good thing. For example, on Sunday, Jax had to be reintubated. Incredibly, he made it two weeks on assisted breathing before needing his ventilator again.
But as parents, we perceived this change to mean that Jax was declining — that he needed only a little help to breathe before, and now he can’t breathe at all for himself.
Have you ever seen “Alice in Wonderland” or read “Alice’s Adventures in Wonderland”? Remember the part where Alice ponders, “What if I should fall right through the center of the earth, and come out the other side, where people walk upside down?”
NICU is a wonderland where the smallest person you’ve ever seen can not only survive, but thrive and grow, where not breathing on one’s own doesn’t indicate declining health, but an opportunity to rest a while, reserve strength for gaining weight and developing other systems.
That’s what one of Jax’s doctors said when he sat down to talk to us Sunday night, when I couldn’t stop crying at the sight of the ventilator. As he talked, I realized how calmly Jax seemed to be sleeping, how regular his breathing was. He looked more relaxed, even in his tiny face, which wasn’t scrunched up. Because he didn’t have the nasal tubes taped down, we could see his cute button nose. When I reached in to rest my palm on his head, he opened his eyes — oh yes, that’s right, his eyes finally popped open for the first time last week! — to look up at me.
I swear, those blue-for-now eyes told me not to worry. I swear they did.
I am so thankful for those doctors and nurses, for their compassion and skill. We couldn’t leave Jax’s side if we didn’t trust them completely, but what they do for our mental and emotional well-being, when they sit and talk to us frankly about Jax’s progress, is equally invaluable.
We’re learning a whole new vocabulary. A “new normal.” Down is up; wrong is right. Since going back on the ventilator, Jax has gained two ounces and had his IV removed.
The doctors can’t breathe for us, but they can breathe for Jax, until he learns to breathe for himself.
And even an earthy pair, used to having their feet planted firmly on the ground, can learn to walk upside down.