The Red-Spotted Admiral

"Red Spotted Purple" by Saxophlute at English Wikipedia. Licensed under CC BY-SA 3.0 via Wikimedia Commons

“Red Spotted Purple” by Saxophlute at English Wikipedia. Licensed under CC BY-SA 3.0 via Wikimedia Commons

When one sees a Red-Spotted Admiral butterfly (Limenitis arthemis Astyanax) up close, it is not the red spots that draw attention. It is rather the blue, a brilliant royal. So deep, it gives the butterfly its other common name: the Red-Spotted Purple. At least, that’s what I noticed.

Six years ago, I hadn’t noticed Limenitis arthemis Astyanax at all. Then one landed on my arm.

I was sitting in my back yard at the time. It was a warm, mid-spring day. I was still acclimating to the new house we’d moved into about three weeks prior. I was still acclimating to the new city we’d moved to about 20 weeks prior. I was acclimating to the idea of being a father, my wife having given birth to twins about five weeks prior. But mostly, I was still acclimating to reality of living my life without my son, who had unexpectedly died about three days prior.

I was alone, and I was feeling sorry for myself. My wife, as would become standard for her, was at the hospital, keeping watch over our daughter, who would spend another six weeks in the NICU before coming home. This was her response to grief: she would wake up in the morning and go to the hospital for morning rounds. She would sit by our daughter’s incubation crib for 16 or more hours, occasionally holding her, nursing her, or changing her. But mostly just watching her breathe.

My response was quite different. Apart from a few visits a day, I would avoid the NICU. In much the same manner as a person would avoid a street where he had been in an accident, or a neighborhood where he had been mugged. The mere act of walking through the doors turned my stomach. My desire to see and hold my daughter was in a constant battle with my desire to avoid the place where I watched my son die, and my desire for avoidance frequently won the battle. I would later learn this avoidance was my mechanism for coping with post-traumatic stress.

And so I sat there, not by my daughter’s crib. But in the back yard, staring at nothing. And a butterfly, a Red-Spotted Admiral, Limenitis arthemis Astyanax, lit upon my left arm. It crawled forward a bit and settled in a spot for five, perhaps 10 seconds, moving its wings slowly up and down. And then it flew off.

I don’t much believe in signs from above, or beyond. I believe God, who or whatever he is, created humans with free will. We can choose to believe or not believe, just as we can choose to be kind and decent to each other or to not. Whatever our choices, they need not rely on signs from him. And so, no, I don’t believe this butterfly was sent by God, or inhabited by the spirit of my son to let me know that things would be okay. It was just a butterfly. And yet…

And yet.

I guess we all emerge from our cocoons eventually.

I notice Limenitis arthemis Astyanax now. I notice it, and wonder how I never noticed such a beautiful creature before. I notice it, and I think of a time when I felt as low as I’ve ever felt in my life, and an insect lifted my spirits. I notice it, and I remember the power of tiny, almost insignificant things to enter our lives and impact them in a significant way.

K

I remember a red windbreaker, emblazoned with little baseball patches that bore the names of the 24 (yes, 24) teams in Major League Baseball. I remember a tag about the size of an index card attached with a safety pin, on which was written my name, my classroom number, and the name of my teacher. I remember posing for pictures. And I remember getting on the bus and sitting near the front (nowhere near my fourth-grade brother).

That’s it. Whatever else happened that first day of kindergarten is lost. The other 179 days of that first school year are sort of all mashed together in a single file cabinet in my brain. The truth is, I didn’t get what was so special about the day.

Nora starts kindergarten tomorrow. She’s anxious about it. A little afraid. The fear and anxiety no doubt increased by the fact that we are in a new town. Back in Charlottesville, the first day of kindergarten would just be her fourth year at Montessori. She would know all her classmates already. She would know her teachers. Her brother and sister would be downstairs in the preschool room.

Here in Springfield, she knows one classmate, whom she met only Thursday. She sort of knows her teachers, from three weeks at summer camp in July. But she’s not yet familiar with them. Not yet wholly comfortable. She is attending Montessori for kindergarten here, just as she would have there — part of an effort on her parents part to ease her transition to her new home. But everything else has changed.

I have no doubt she will do well. Not just do well. She will do great. She will make her parents proud. She will make friends. She will have fun in the process. But that is still in the future. Today, now, she remains anxious and a little afraid. She asks me, “Will I have to do numbers in kindergarten? Will I have to write?” I find these fears moderately amusing, because she can do numbers. She can  write. I reassure her that, no, she doesn’t have to do these things. She gets to learn how to do them. No one will make her do anything; they will teach her.

Of course, it can’t be ignored that we are sending but one child to kindergarten tomorrow, and not two. For a long time, I have dreaded the emotions tomorrow would bring, fearing that I would once again be grieving for Ben. But while that reality hasn’t escaped my mind, it hasn’t overwhelmed it either. This week, this milestone, is not about me or my emotions. It is about Nora and hers.

And so here we are. Her outfit for tomorrow has been selected. Her special bedtime story has been read. Hugs and kisses have been issued, and prayers said. My little girl, who entered this world so fragile that it terrified me to hold her, who was so tiny that her fingers could not wrap completely around my pinkie when she gripped it, my 28-week preemie who spent the first 78 days of her life in the NICU, enters kindergarten tomorrow.

I know she’s ready. I just hope I am.

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.