Liam and Ben

Liam Stewart and Benjamin Peter were born on Saturday, May 5 after an acute case of twin-to-twin transfusion syndrome and a possible placental abruption. We are in hospital and will be living here with the boys in the NICU for a few months. They are with us, but barely.

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God says, "Oh, shit..."

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. Why do bad things happen—chaos theory, karmic punishment, God’s master plan?

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solace, for now

So far, time passes quietly. Both boys are on various degrees of drugs and ventilators and life support, and each day the doctors test their limits a bit more, coax major organs and body functions towards regeneration and independence. Tiny steps forward and backwards.

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mama greed

Love makes me greedy. I want the world to be as vivid and as accessible for them as it is for us, unhindered by disability. Is that too much to wish for, and to want it so badly? To wish for them to overflow with ordinary life, with school crushes and soccer practice and stinky socks?

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relativity

They just took Liam into the OR for heart surgery. The doctors say there's a five to ten percent chance of a threat to his life. 'His blood vessels are like wet kleenex,' she said. 'We have to be careful.' Never has five to ten percent been so significant.

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recovery

In the realm of preemies, it was routine—but the first intervention beyond IVs, medication, and stat-watching. He was wheeled away from us to a place where they'd breach his skin. It got the better of me, the thought of it.

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deep in the huddle

Many of you have shared stories of twin-life and NICU-life and survival and loss and faith. Others have simply sent one line: I’m sorry for you. This all just sucks. It's full of good-salts, like miso soup on a hangover. I can’t thank you enough.

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into the mystic

I could accept if Liam doesn't make it. 'Accept' as in rationalize. I would be forever gutted, but I could distill meaning from it. The only other outcome I can accept is that he will defy everyone, completely unscathed. What if he lands somewhere in the vast gulf in between? This is most likely, by a long shot.

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fortunate voodoo

It's a milestone: Liam is off the ventilator. He may have hiccups, backsteps. But it is such sweetness to see his face unobscured by complication. He gurgled at me, pulled faces in the nervy twitchiness of preemie sleep. Today, magic from both boys had me smiling all the way home.

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bushwhacking

The pessimist in me grumbles he’s blowing a little sunshine our way to soften the ‘brain damage everywhere’ news. He’s cutting us a break, seeing no point in deflating us with an unmendable truth. But the doctor is genuinely puzzled, I'm sure of it.

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clarification

Everyone tells me how important it is to think positively. Then, daring to, I am clearly a deluded fool. We're being managed by the doctors, I think, because they just want to finish this shift and go home. I wish we could just go home.

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view from the cage

We are torn between despair and optimism. No matter what you say—whether it's I'm sorry for you or Hang in there—we drink it up gratefully. I just wish we could choose one camp and stick to it. To feel this way, both drawn to faith and abandoned by it, is to feel completely rudderless.

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the john b. sails

One month down. Two months to go, as the optimist flies. I am on auto-pilot, a blur of NICU rounds and charts and highway driving and fluorescent lights and boob-sucking robots that tractor-beam me from one end of the hallway to the other, wheeshing FEED-ME-SEYMOUR!

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envy for the mundane

Evan makes fart noises with a squeezy toy in the bath. "Dat's RUDE!" he giggles. But everything normal is trumped by everything else. Now. at 12:33 AM, a neurosurgeon is putting in a shunt to relieve pressure on Liam’s brain from hydrocephalus.

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