Three Minus One: Stories of Parents' Love and Loss (33 page)

I’m taken back to my room to face the worst night of my life. My husband holds me as I cry, surrounded by the sound of healthy babies being born, endless crying that goes on throughout the night. I rattle off a list of demands to my husband that make no sense—we’re moving, I’m never going back to work, I don’t want to see any of our friends and family again. He doesn’t bother trying to reason with me; he lets me believe that if I can leave everything I’ve ever known, I can leave my baby behind as well.

The next day we hold our son and listen to test results confirm that although there is no known reason at this time, our son can’t and won’t ever breathe on his own. We now face the decision of when to remove life support. We wait until our mothers arrive from out of town to spend a few minutes with our son, then we prepare to say good-bye. Thirty hours after entering this world, at 2 a.m. the morning of September 12, he is placed in my arms for the last time. When the breathing tube is removed he wakes up, looking into my eyes, asking me why he can’t breathe. I don’t have an answer. I try to comfort him and make a memory of this moment—I know it isn’t going to last long and within seconds, his eyes close. His heart beats longer than expected and then he’s gone and taken from us, forever.

We arrived at the hospital only two days earlier with our son; now we are leaving without him. So little time has passed in the world yet our lives have been changed forever. We drive home in the middle of the night, the car seat empty. It has been in the car for weeks but now feels so much more present.

I stay in a state of shock for weeks, my body slowly letting me
come to terms with the death of my baby. Because Bennett’s body looked so perfect, I have panic attacks that I killed him—he was healthy and I just hadn’t given him enough time. I stare at pictures of us I don’t remember taking, trying to piece time together. I make my husband tell me over and over again what he remembers. My husband asks the NICU doctor to walk me through all the tests again when he realizes he is getting nowhere with me.

My strongest emotion is guilt. I can’t overcome it. I must have done something wrong. He was in my body. He was my responsibility. I keep a running list—I exercised too hard, I swam in the lake, I traveled too much. I am aware of the absurdity of these thoughts. I would never allow another woman to think she had caused the death of her baby, but I can’t control them.

I start to measure a successful day by if I’m able to get out of bed, take a shower, cook a meal. I try to pull the car into the garage, but I don’t know the gas from the brake so I just cry and leave it there. I stare at the microwave not knowing how long to cook the food before giving up and walking away. I make it through the doors of the grocery store and turn to leave. My anxiety makes it hard to leave the house, as everything is overwhelming—the cars, the noises, the bright lights. I want to wear a sign that says “my baby died” so everyone knows what I am feeling. I question if I will ever again be a functioning member of society.

Being a first-time mother, I also have no idea that the love for your child, whether he lives or dies, continues to get stronger over time. I long for my son with an intensity I have never felt before. My arms physically ache to hold him, a sensation that makes me feel crazy. My love for him grows every day and with that comes more pain. The reality of everything we had lost becomes more and more real to me. I am grieving for so many things at the same time it’s overwhelming. I grieve my loss, Bennett’s loss, my husband’s loss, and possibly the loss of future children. I spend weeks doing nothing but grieving, letting my emotions come and go like waves, experiencing and surviving each one.

Then one day without thinking about it, I turn on the TV. I not only shower but I dry my hair. I buy a little pumpkin and place it next to Bennett’s urn. I go back to work. I feel myself starting to return to a world I no longer recognize but must live in.

A moment doesn’t go by when I don’t think of our son, of our loss, but I learn to live with this sadness. It helps us to talk about Bennett, so we go back to the same conversations we had before he was born, wondering what our son would be like. Despite our grief we are grateful for the moments we had with him, that we know he looked like my husband and that he was able to see us, hear us, and feel our touch.

Two months after Bennett’s death, the autopsy report shows that he died from a genetic disease of which my husband and I are both carriers. It is the leading genetic cause of death in infants. There is no cure. It is estimated that one in forty people are carriers. A disease we had never heard of is now all we know.

Jaimie Porter

“I
knew it.” I grinned at Tom after we found out we were having a boy at my twenty-week ultrasound. Upon leaving my obstetrician’s office with the news, I joyfully began planning for my son’s arrival. One month before his due date, we were ready. His nursery was decorated, his clothes were washed and put away, and his tiny diapers were piled high on the changing table. We just needed our baby.

On January 30, our moms and my sister-in-law huddled around Tom and me at my thirty-six-week ultrasound appointment. Overwhelming excitement filled the room as the image of our baby appeared—his hands, his feet, his profile. I thought I was going to burst. With our baby’s picture in our hands, Tom and I then moved into another room to talk to Dr. Sullivan. Simply routine.

His face told us otherwise. “There is a problem with the baby,” he stated matter-of-factly as he sat down on a stool. “Your son has fluid around his brain.” In our baby’s case, the condition, hydrocephalus, was most likely “not conducive to life.” I’ll never forget those words. Tom and I stared at each other in utter disbelief. As we sobbed, the doctor asked if we wanted our family to come in.

“There’s a problem with the baby,” I managed to say as they came through the door.

Dazed and numb, we left the office out a side door. Once home, we had to make the tearful phone calls to the rest of our family. With each retelling, I thought, “This can’t be true. This can’t be happening to us.” For hours I scoured the Internet to find out whatever I could
about hydrocephalus. Devastated, thoughts of long-term care and unending complications haunted me as I tried to sleep.

The next day I had a Level 2 ultrasound, and the news just got worse. Our baby definitely had fluid around his brain in addition to other abnormalities. Even more afraid for our son, we were then sent to Cincinnati Children’s Hospital Fetal Care Center for an MRI and several other tests. Exhausted, we went home and waited for the results. And waited. And waited. A full week later, the longest week of our lives, we sat in a conference room surrounded by doctors and our family. The neurologist spoke first. His words were terrifying. Our baby did not have hydrocephalus; in fact, he had very little brain tissue. If he lived past birth, he would have no brain activity. He would be deaf and blind and would eat and breathe through a tube. This treasured baby, whose heart was beating below mine, was not going to survive. How would I survive? I found myself wishing and praying for the original diagnosis of hydrocephalus. Even though he would endure hardships, we would still have our beloved baby to hold. A selfish thought.

We had so many questions, some of which were answered when we met our genetic counselor. She explained that our baby’s case had been shown to doctors all over Cincinnati. Although each was familiar with our son’s problems, none had seen them all occur in one baby. The doctors were doubtful that the cause was genetic, which somewhat eased our concerns about a future pregnancy, but they could not rule it out. Together we decided we did not want an autopsy performed, since the results may not be conclusive.

During this time I didn’t want to leave the house. Everywhere I went, well-meaning people would see me, very pregnant, and would start asking questions. Is this your first child? When are you due? Are you having a boy or a girl? I was not ready to tell our story; I just wanted to hide at home.

Two weeks before my due date, instead of being in heaven, I was in pure hell. Instead of choosing the clothes my child would wear for his trip home from the hospital, I was choosing the clothes he would wear for his funeral. We had decided on cremation for our son but
not until after a viewing and memorial service. Our baby deserved to be celebrated.

We went to the hospital at 6 p.m. on February 25, one day before my due date. We weren’t sure if our son would be alive when he was born, and if he were, how long he would be with us. Fortunately, we had a compassionate nurse, who held my hand and shared the loss of her own child. As painful as the situation was, it was comforting to have someone by our side who knew exactly what we were going through. I will never forget her.

My labor progressed normally, and with friends and family waiting for him, our son, Brayden William, was born on February 26, 2008, at 5:57 p.m. Through tears and smiles, we all held him close, felt his heart beat, felt his breath on our skin. People filled the room; this was our chance to share our beautiful baby boy with those we loved. At 3:20 a.m., February 27, Brayden William gained his angel wings as his grandmother held him. My mother’s voice softly woke me as she gently placed him in my arms. I thought my life had ended, too, as those we loved held him and said good-bye, but I was thankful for the nine and a half hours we had had with him.

We would never be ready, but at some point we knew we were going to have to let Brayden go. When that moment arrived, I had been promised that I would be putting my son into the arms of one of our nurses rather than a stranger from the funeral home. However, there was a horrible miscommunication. I will never forget the moment when a man dressed in a dark suit walked into my hospital room and introduced himself as funeral home staff. I froze. I simply could not give Brayden to this stranger, knowing I would never hold him again. As I bawled my eyes out, I reluctantly placed him in my dad’s arms. He then turned and tearfully did for us what we were not capable of doing ourselves.

I was released from the hospital that morning. The same nurse who had held my hand made sure that I had not been moved from labor and delivery, so I was not wheeled past all the new mothers with their healthy babies. Because of her, I also took with me Brayden’s footprints
and a lock of his hair. I walked into the house without my child, past his closed door, and into my bedroom. Mercifully, I fell asleep.

The days preceding the funeral were a blur, as was the funeral itself. I do remember being touched by the streams of people who came. I was exhausted, but I was so grateful for their support I hugged everyone in line. I was especially touched when my obstetrician, Dr. Sullivan, walked through the door. He had been there for the beginning of our journey with Brayden and he was there now, at the end. From him and others I took strength that I no longer had. During the service, Tom and I sat gazing at our son, who was wrapped in blanket and laid out in a bassinette, and my eyes filled with tears as “Amazing Grace” softly played. I will see my son every time I hear that hymn.

Afterward, surrounded by our family and friends, I just sat there thinking, “How can we just walk away and leave our baby boy behind? What are we supposed to do now?” It was then that everyone left the room, and Tom and I were alone with our son for the last time. Before we rejoined our friends and family, Tom held my hand and said quietly, “We have been through the worst together. Whatever comes in the future, we will handle it together.”

After the funeral, life went on…for everyone else. I just stared at the walls for weeks. When Brayden’s death certificate arrived before his birth certificate, I crumbled. However, Tom’s words when we were alone with Brayden at the funeral home sustained me on my darkest days, days when I had thoughts of ending my own life. When I forced myself to get out of the house, telling our story to anyone who asked helped us both to heal, and his story touched everyone who heard it. Brayden changed not only our lives, but also the lives of others.

Life did go on. When Brayden died, we closed the door to his room, thinking we would never be able to open it again. But that door, along with our hearts, soon opened to welcome our daughter, Emma, and were never closed again.

Brandon Bodnar

In memory of Ada MaryJo Bodnar, born still on June 30, 2013.

The doctor places you gently in my cradled arms.
I close my eyes and dream of another world, another life.

I take you home and lay you in your crib.
I wrap the blanket around your tiny frame.
I stare at my smile reflecting in your eyes.
You smile back and laugh with innocence.

Your first steps, first words, first thoughts.
You tell me all about your first day of school.
You tell me all about your first childhood crush.
I take it all in, relearning my world through you.

You leave home for college, bound to fix this world.
You call home, joyfully professing to have found love.
You dance gracefully, as I clumsily step on your gown.
You place my grandchild gently in my cradled arms.

I open my eyes, and you are still there.
I hand you to the doctor, and dry my tears.
I held you but for a moment of eternity.
My Daughter, good-bye.

Susan Rukeyser

I
remember how it was. Every month, the blood. Usually met with indifference, occasionally relief. For women, just the way it is. We don’t talk about it much, but blood unites us.

I remember how it was, when I was pregnant. I was older this time, my son already eight and eager for a sibling. (With him, I bloomed with happy pregnancy. I delivered without drugs. I felt invincible. I thought,
I should do this for other women
.
Be a surrogate for those who want babies, but month after month see nothing but blood
.)

I remember how it was, when blood came when it shouldn’t. In week ten, the embryo becomes a fetus. It looks like a comma: big head, a curve of body. Just over an inch long, the size of a kumquat. If it’s wished-for, it’s a baby.