After 5

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.

(*Necrotizing Enterocolitis)

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.

Competitive Writing

Carolyn emailed a link to me a few days ago. It was a call for entries into a writers’ competition. She likes to encourage this little habit of mine. She’s a good wife.

This particular call for entries is being held in conjunction with an upcoming film, called “Return to Zero”. I hadn’t heard of it, so I read on:

“Return to Zero, the movie, is is based on the true story of the filmmaker, Sean Hanish and his wife, Kiley. The movie starts when the couple is preparing for the arrival of their first child. Just weeks before their due date they are devastated to discover that their baby son has died in the womb and will be stillborn.”

Uh-oh. I’ve been down this road before. I read further:

“…we are inviting you to submit your story for consideration Three Minus One. Perhaps your story, like the one featured in RETURN TO ZERO, is not only a tale of loss, grief, and despair, but one of surviving, healing, and learning to love again as well—all the while never forgetting. Whatever it is, we welcome your submission.”

Sigh.

I pick at this wound every April and May. Do I really need to scratch it here in late August? Apparently, I do. My entry into the contest is below.

If you’re reading this now, you’ve probably already read one or all of my previous essays about Ben. That being the case, you may recognize some bits and pieces that I’ve written in the past. I pretty brazenly plagiarized myself…

***

“Remembering Ben”

The best and worst moments of my life involve Ben.

April 9, 2009. 12 weeks ahead of schedule, Ben made me a father. His sister Nora followed five minutes later. The in-the-moment joy I felt when I first laid eyes on him is something that can be appreciated only by those who have experienced it for themselves.

It was a joy that lasted less than 31 days.

While I kissed my wife, and blubbered through my tears to tell her how beautiful they were, Ben and Nora were quickly whisked away from the OR to the NICU. For hours, the only news we received of them came in the numerical form of APGAR scores. With each number given, the question “is that good or bad?” immediately followed. More often than not, the answer was yes, that was good, and we would breathe a sigh of relief.

Over the following weeks in the NICU, Ben progressed in fits and starts. A minor infection here, an age-related milestone not successfully reached there. Surfactant and C-PAP were terms that entered our household lexicon. His sister, Nora, a model NICU student if there ever was one, made bigger strides from the start. But even so, no one saw any reason to believe Ben would not be coming home in a reasonable time. Not the doctors and nurses. Not Carolyn and me. No one. Ben’s progress was slower, but he was progressing.

Progressing, until my wife’s cell phone rang at 1:50 one Sunday morning. Mother’s Day, as fate would have it. “Your son Ben is having trouble,” the nurse on the other end told me. “You and mom should come be with him.”

20 minutes and several traffic violations later, we entered the NICU, greeted by the sight of a half dozen or so doctors and nurses surrounding Ben’s incubator, and by the wail of Ben’s monitors, sounding their alarm. We stepped closer, though not too close, anxiously watching the team of doctors and nurses perform CPR. Everybody doing their thing, in time. There was no sense of worry or panic. Just the look of determination everywhere. This was what these professionals were trained to do: save a child’s life. And they were going to do it.

Every so often, they would pause the resuscitation. Ben’s numbers — his heart rate, blood-oxygen level, respiratory rate — would stabilize a moment, two moments, then crash. And the team went back to work again. This cycle happened again. Twice. Three times. I lost count.

Other nurses and attendants brought chairs for us to sit in. We called to Ben. Cheered him. Told him how proud we were. Told him everything would be okay, even as it became apparent that everything wouldn’t.

The attending physician, with whom we had grown close, sat in a chair next to us. She told us what everyone on the team was doing. Told us that everyone was doing exactly what they were supposed to do. Told us they weren’t sure why Ben wasn’t responding. With my eyes fixated on Ben, I didn’t really hear what she was saying, until her last sentence.

“…and I think that it’s time for you to hold your son.”

So we did. We held him for hours. We held him close to Nora’s incubator, so she could say goodbye. We held him to the window to watch the first hints of light in the eastern sky. We held him as our priest, who answered his phone at 3:00 in the morning to come to the hospital, baptized him.

More than four years have passed since that morning. Grief therapy. Attacks of anger and anguish – and, yes, irrational joy – show up without warning, and just as quickly depart. In that time, we’ve come to accept that we are different parents than we would otherwise be. Come to accept that what is normal behavior in our family would not be normal in another one, be it a four-year old girl having a favorite song that she sings just for Ben, or a 42-year old man breaking down in tears for no apparent reason in the shoe section at Target.  Prayers are said every night, and every night the first one Nora asks God to bless is a boy she knows only from pictures and stories Mom and Dad tell.

The ensuing four years brought with them two miscarriages and, against all odds, logic, and family and medical history, another set of twins. From the moment we saw the two of them in our first ultrasound, Josh and Lia, our younger children, brought with them challenges I didn’t know I would be able to face. More visits to grief therapy followed. Anger at the unfairness of it all, at the realization that the very best case scenario we faced would involve explaining to Nora why her twin was in Heaven when her younger siblings had a twin on Earth. We are fortunate to have lived that scenario. And while Nora often tells us she wishes Ben were here with us, she has also shown to be a kind and loving older sister.

Josh, meanwhile, has grown to be quite a little bruiser in 21 months. When I pick him up from daycare, I crouch down to the floor and he comes running toward me at his top speed and crashes into me without slowing. He usually carries enough momentum to knock me off balance. As I wrap him in my arms, I will say “how’s my boy?” and a voice in my head sternly reminds me, “you have two boys, you know.” And I feel guilty for enjoying that moment so much. I try not to compare the two, but Josh’s every mannerism — his laugh, the sparkle in his eyes — makes me wonder how similar, or different, Ben would have been.

I watch Josh and Lia play with (or against) each other, and I feel Nora’s loss more than my own. My wife and I lost a son, and as great a tragedy as that is, Nora lost a best friend, which strikes me as even worse.

Nora lost a rival. She lost a confidant and protector. She lost a conspirator and an antagonist.  She lost a big brother, which is something no child should lose.

Through everything, I wrestle with the thought that, had Ben survived, we would very likely have given up on having children after the two miscarriages. Maybe after one. I know in my heart I would trade anything to have Ben here with us, but I know equally well that I would not trade Josh or Lia for anything. I often find myself staring at Ben’s picture on the wall, and searching for an answer, a way out of this dilemma, but there is none to be had. So I simply pray that Ben, wherever he may be, knows how much he is loved and how sorely he is missed.

Four years

I don’t often get to pick up any of my kids at the end of the day.

Carolyn and I have worked out our schedule: she works early, from 7 to 3, and I do the more traditional 8:30 to 5. I drop the kids off in the morning; she picks them up in the afternoon. It’s pretty unremarkable.

Since Josh and Lia began going to daycare in February, I have picked them up in the afternoon exactly twice. Both times, Josh has greeted my arrival with his biggest smile, abandoned whatever activity he was in the midst of, and come running full-bore into me. He does not slow down those last three feet to lessen the impact. He meets me at top speed, with a full-body tackle/hug and laughter. It’s intoxicating.

April and Vilma, the teachers in Josh and Lia’s room, find his response to my arrival endlessly charming. “Awwww, there’s Daddy’s boy,” they say.

Carolyn and I are largely in agreement that Josh is, in fact, something of a Momma’s boy. But in that moment, or others like it, he feels like Daddy’s.

Josh

Today is the culmination of a week in which I spent much time thinking about my other boy.

Ben is never too far from my thoughts. But every year, the approach to May 10th, the approach to Mother’s Day, keeps him even more in the forefront. When Josh ran up to greet me at school Tuesday, I wrapped him up in my arms and said “how’s my boy?” and a voice in my head sternly reminded me, “you have two boys, you know.” And I felt guilty for enjoying that moment so much.

When Josh and Lia are playing so well together, or when Nora is telling us how much she loves Lia, I feel loss. Loss for Nora not having her twin. Loss for Josh not having his big brother.

When a quiet moment consumes either Carolyn or me without warning, I get angry. Angry at a situation that neither of us will ever have any control over, at a situation that both of us will have to confront for the rest of our lives.

It’s been four years since that morning, when Carolyn’s cell phone woke us up at 1:50 in the morning. Four years since I ran a few red lights on my way to the hospital. Four years since Dr. Paget-Brown sat next to us and told us to hold our son. 3:00 in the morning on Mother’s Day.

Ben

So much happens in four years. Olympics, Presidential Elections, leap years. But in four years, the only thing that has changed about May 10 is the day of the week it falls on. In two years, it will fall on a Sunday again and coincide with Mother’s Day. I have no idea whether that will make the pain of the anniversary more acute, or if it will be easier to simply pack it all into one day instead of an entire week. It will also fall on a Sunday in 2020, 2026, 2037, 2043, 2048, and 2054. I don’t anticipate still being around when it falls on a Sunday in 2065, but who knows?

Four years. 1,461 days that I’ve gotten to wonder what he’d be like today. 1,461 times I’ve gone to bed and said a quick prayer for my boy. 1,461 nights since the last time I sat in NICU Pod B and read him a story, 1,461 nights since I leaned in close to his isolette and sang in a soft whisper for him.

I will frequently sing the same song to Josh at his bedtime. Nora has a song of her own, Lia has one too. But Josh shares a song with Ben. At first, I thought Josh should have his own song too. But now I prefer it this way. It’s something Ben gave to Josh. Or maybe it’s something he gave to me, and I’m just sharing it with Josh. From one boy to another.