I’ve been lulled into a false sense of routine in the last couple of days. Each morning we’ve heard the blessed ‘uneventful’ status, both boys showing relatively minor progress but progress nonetheless. The doctors are doing their best but don’t seem to have many answers, and it’s too early for prognosis. We’re all in somewhat of a holding pattern. They adjust treatment and monitor responses and wait, as though the boys may sit up and tell us something.
Today the neonatologist came to see us for our first conference of sorts. She tells us that Ben is, more or less, facing the same challenges as any other 28-week baby—he’s small, but not necessarily compromised by the delivery or the TTTS. But Liam, sweet Liam. She runs down a list of problems, very kind and forthright and considerate. But a list it is. She starts with his brain, then his heart, his lungs, his kidneys, his liver, his stomach, beginning all sentences with the following:
“Liam’s injury at birth has caused his <major organ> to be <major problem>. It’s not working as it should, and could worsen in the coming days or weeks…”
By the time she’s reached his kidneys I can feel myself in involuntary system shutdown again. She is looking at me earnestly as they all do, talking to me, trying to explain everything. Stay with it, stay with it. My brain will not cooperate. My eyes wobble against my will. I see stars, unable to focus on the very important face in front of me. I want to be connected to all the hard work they’re doing in the trenches for my sons. I want to know everything. But when the news continues beyond a few sentences, I lose the strength to hear it.
“I can see you’re tired, we’re just about done here and then we can leave you to sleep,” they say. I apologize and they leave me. I cry and sleep and wake up and cry again. My arms ache with phantom babies. I’m supposed to be able to hold them, and rock them, and offer them milk and help them forget about the big, bad, scary world, wrap them in softness. But I can’t. I can’t do it for them or for myself.
We got a call the other day from the chaplain. She wanted to come by the hospital to offer her support. As I said Of course and Lovely, thank you so much… I hesitated, just for a moment. Would she press us to baptize the boys, just-in-case, like some people already have? Would she want to talk about Jesus? Would she implore us to trust in God?
The thought of it made me feel a bit nervy.
We’ve got people praying for us, entire churches directing their congregational goodwill towards Liam and Ben on Sunday mornings. The chaplain left a shawl knitted by her church’s auxiliary ladies, a stretch of soft, pink fluff made with a prayer in every stitch for those in need. And many of you have commented with prayers and poems, invoking the big three on our behalf.
I adore old churches—the papery mustiness of hymn books, the polished wood buffed to silky roundness like current-softened river rocks. But there's no benevolent force or magic-wand-wielder. To ask a higher power to intervene is to presume that s/he would say yes to some and no to others. Or that s/he would do nothing if not asked. What about people who don’t get a happy ending despite eloquence or devotion?
My life has never gone wrong. I’ve never even been stung by a bee, I remember telling the doctor as he put the mask over my face. He smiled, even as I saw his eyes well up at what he knew was such a grave day for our babies. So I’ve never had reason to speculate at why bad things happen—chaos theory, karmic punishment, some deity's master plan. The way I feel about it now gives me space to not be angry, to not feel abandoned.
Any gods of mine are argyle-sweater-wearing tinkerers. Once sparks are sparked they stand back, secondary to the ebb and flow of the natural world. Sometimes things happen that are a surprise, causes and effects that seem to make no sense.
The gods do what they can to put us into the path of people who can help, to stand beside them and plant ideas and collaborate, observe. In the NICU they've got his sleeves rolled up just like everyone else. They don't mind the tubes and the machines as much as I do. They make themselves tiny and climb in through the portholes when the nurses aren’t looking, nuggling in behind Ben’s mask strap and underneath Liam’s head tape to coax calm and whispery sleep into their ears.
We all need all the spirit we can get, by any name.