in the absence of a poker face

It’s been a train wreck of a day. The wreck didn't happen to me, though. I am the wreck. I happen to others. I burst out crying when it’s most inconvenient for whomever I’m with. I’m calm when it makes no sense to be calm, and I’m a mess when it makes no sense to be a mess. But please, world. Give me the space for that to be okay.

Just know that I’m not like this all the time. I change the diaper of my two-pound son. I screw it up and get poop on the bed, which is a pain in the ass for the nurses, but I’m in there, sleeves rolled up, trying. I’m told that this soon, most parents are too afraid. I may cry all the way home but I when I am with them, I am there.

I’m so raw. I feel judged and vulnerable and claustrophobic and illogical. I’ve moved from shellshock and denial to anger, resentment towards every other person walking the streets who, compared to the complete shit luck of our lives right now, must certainly have it easy.

I’m proud of myself. I’m embarrassed of myself. I’m fiercely protective of how I’m facing this, but ashamed of it too. I am drowning in guilt, so much guilt I can’t see straight. That I couldn’t keep them safe. That I’m distracted from Evan. That I resented them for being two. That we’re burdening our families. That last thing I want right now is for anyone to have to worry about the boys and me.

I want a pill.

I want everyone who says I need a pill to fuck right off.

I want to be one of Oprah-saints who says she loves her children just as they are and really means it. I want to love my children no matter what. But now, having learned that it’s not a matter of if Liam has brain damage but a matter of how that assured damage will manifest itself, I’m pissed. I’m just plain pissed. I want him to ski at Sugarloaf with us, and get black and blue from sailing, and have girlfriends. I want him to be 'normal', selfish for both me and him.

Then I loathe myself for putting conditions on my son when he's giving this everything he's got.

I grieve all the normal he’s lost. In time I’ll be able to see what he has more than what he doesn’t have. But right now, my boots are stuck in loss-mud and I haven’t got up the nerve to pull out my sock foot and step forward, leaving the boot behind.

He has a grade four bleed on his brain, the worst. So what does that mean? we asked today—something of a pointless question since the answer gives us no course of action.

The doctor says: from the location, it will be motor skills that are affected, not mental capacity. It may be like some form of cerebral palsy, anything from barely perceptible clumsiness to a wheelchair. We have no way of knowing. I’ll tell you though, this kid’s got a purpose. 98 of 100 babies would have died, and he didn’t. He could be studied, a case. He shouldn’t be here. But he is. He’s proving us wrong every day, and on every count so far—from his heart to his kidneys and liver, they’ve all healed. He has been injured, there’s no doubt about that. But he’s meant to be here.

I am proud, and furious, and grateful, and crushed. Let me be all those things. Without a little of everything, I’m going to explode.