I feel I’ve written all I can write about Ben. Here, here, here… And a few other pieces on my hard drive that are so disjointed and repetitive that even I don’t quite know what the hell I was getting at. The truth is, there’s only so many words that can be written about a life that spanned 31 days. And there are roughly zero words that fully or properly express the grief of watching your child die.
And yet here we are. Another year gone by. Five years, and another Mother’s Day nigh. And I feel I should write… something.
We keep Ben’s things in a box in our closet. Some of the clothes he wore, onesies and socks, the hospital-issue stocking hat, the decorative name tag that adorned his incubation crib, along with some papers and other affects. There’s a smaller box in the closet in Nora’s room where we keep all the cards we received after he died. Some time this weekend, I will pull both boxes out and rummage through them. I’ll get the computer and open the folder of pictures from the NICU and scroll through them as I stare vacantly at the screen.
One of the pictures in particular haunts me. Carolyn’s brother had flown from Boston one weekend to visit his new niece and nephew. He and I are outside of Ben’s crib, staring through the encasement at him. I’m smiling. I know that not even 12 hours after that picture was taken, Ben died. But in the picture, I’m innocent of all that. It’s like looking at a picture of someone else. The person in that picture isn’t the least bit worried. No, he’s proud of how well his son and daughter are progressing. Oh, sure, he thinks. Ben’s had a couple setbacks along the way, but he’s doing great! He and Nora will be home in another month or so, and it’ll be all lollipops and sunshine ever after.
The person in that picture is grateful for his predicament. Sure, being in the NICU isn’t ideal, he thinks, but some of the kids in there have real problems. Mary Grace, in the next crib over, has a heart defect; she’s going to need an operation — probably more than one. Little John over in the corner has been here since January. He had to have intestinal surgery after contracting NEC*. Ben doesn’t have any of that; he was just born a little early. As soon as he puts on a little more weight, he’ll be fine.
I want to yell at the person in that picture. Tell him to do something. Get a doctor. Something’s not right, you idiot! But there’s never any answer. Like some doomed extra in a horror movie when the whole audience knows not to open that door. I know the person in that picture is going to walk out of the hospital in maybe five or ten minutes, go to a restaurant with his in-laws, go home, and go to bed. And when the phone rings at 1:50 the next morning, his life will never be the same.
A few weeks after Ben died, little Mary Grace followed him. She was a fighter. After what was at least her second operation, the doctors told her family there wasn’t much else they could do. Her family gathered from several hundred miles around, in anticipation of the news. But she persisted. She lasted two or three days longer than anyone expected. I cheered her for every extra breath she took, because each one felt like a fuck you to the very idea that parents should have to watch their children die.
A few weeks after Nora came home from the hospital, little John followed in her footsteps. Carolyn still keeps in touch with his parents on facebook. When I last saw him, he was a big, boisterous four-year old. He made me smile.