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“It was never truly about a world with or without Kohen. It was about the 62 days I got to be his mom.”

I lost my son, my baby boy.

It was a seemingly normal Thursday. I started my day early, saw my older son and daughter, Keaton and Kerené, off to school, put in a full day at the office, and got in some good bedtime cuddles with the kiddos before heading off to bed myself.

As I crawled into bed next to my husband, it hit me—something wasn’t right. Looking down at my oversized abdomen, I realized the little one inside me was unusually calm. There wasn’t the normal kicking and squirming (I swear that kid did backflips in there). Lying there, I found myself wondering if everything was okay.

Fearful something was wrong, I jumped into action, trying everything I could think of to get my baby boy to move. A warm bath. Talking loudly. Music blaring through headphones stretched across my stomach. An extra-large bowl of Rocky Road. About ten minutes after consuming an ungodly amount of ice cream, I felt him move. YES! Everything was going to be okay.

At 4 a.m., my eyes opened. With Mac sleeping next to me, I laid there in the darkness, moving my hands back and forth over my abdomen, praying for the in-utero gymnastics to begin. Then, I felt my baby’s foot move across the lower right side of my stomach. Wanting more, I laid there waiting.

Five minutes. Nothing. Ten minutes. Nothing. Twenty minutes. My heart sank.

Panicked, I woke my husband and said the words no mother imagines saying: “Something is wrong with our son.”

We went to the hospital and at 12:54 a.m. on January 30, 2009, Kohen was brought into the world by means of an emergency C-section—two months ahead of schedule. He let out one small cry as the doctors rushed him to the next room. My husband leaned over, kissed my forehead, and followed the doctors.

Staring into the artificial hospital lights above me, fear took over. I imagined a world without my little boy.

Tears streamed down my face. I wanted to see him, hold him, kiss him, and make everything better.

Kohen was without a heartbeat for five minutes. It was a full 20 minutes before he took his second breath. Feeling a small amount of relief, Mac rushed to the recovery room to let me know our baby boy was alive.

I’ll never forget the first time I laid eyes on Kohen. I was completely consumed by him. He was so handsome—he had a tiny, perfectly shaped nose, hair that fell into a natural faux hawk (now known in our family as the “Kohen hawk”), and sweet little hands that I longed to touch. With my eyes focused on his right hand, I found myself trying to memorize every line. It was in that moment that it struck me: My baby boy was still and lifeless—he was not as he should be.

As I pulled my eyes away from his hand, it all hit me at once: the morphine drip, ventilator, multiple PICC lines, incessant beeps from the machines, doctors hustling about . . . and a chaplain blurred in my periphery. I had never felt so hopeless.

Kohen’s body was swollen, pounds of fluid trapped under his skin and around his heart, making it impossible for his heart to contract. There was less than a ten percent chance of him making it through the night.

Although I knew Kohen’s fight was not over—the road to recovery would be a long one—I celebrated the idea of taking him home to meet his brother and sister.

Yet he did make it through the night. And on February 6, one week after Kohen’s tragic entrance into the world, we received news that was nothing short of a miracle. Kohen’s heart showed normal function—no signs of distress. In only a few seconds, I abandoned the thought of a world without this beautiful baby boy. Although I knew Kohen’s fight was not over—the road to recovery would be a long one—I celebrated the idea of taking him home to meet his brother and sister.

Room 6 in the NICU became our home away from home, the nurses and doctors our extended family. For 56 days, I woke every morning, saw Keaton and Kerené off to school, and made the trek to St. Luke’s in downtown Boise. From the first moment I was able to hold Kohen, a full two weeks after he was born, I was determined to never put him down. In between the numerous EKGs, echocardiograms, blood tests, respiratory therapy sessions, and neurological exams, I held my son. I became a human incubator—we would cuddle, skin to skin, for hours. My parental badge of honor was the small hand imprinted on my chest.

Mac and I wanted nothing more than to take our baby boy home. Until that day came, we were determined that our son would know that we were there, that we loved him with every ounce of our being. While I held Kohen for hours upon hours, Mac read to us: the entire Chronicles of Narnia series, every Dr. Seuss book available, and our favorite book, Little Boy. We read and we read and we read. Kohen grew stronger.

On March 22, our son took an unexpected turn for the worse. His heart began to fail yet again. It grew larger than his chest cavity could bear. The size of a grapefruit, his heart pressed against his lungs, making it a struggle to breathe. The doctors were baffled. Within hours, we were on a plane to Primary Children’s Hospital in Salt Lake City to prep our son for a heart transplant. We lost our bugaboo to heart failure on April 1.

On April 6, the day after my birthday, we buried our son. The pallbearers, my brothers, carried our sweet Kohen to his final resting place. As they did, I replayed the words from Jeremy Camp’s song “There Will Be a Day” in my head:

But I hold on to this hope and the promise that He brings

That there will be a place with no more suffering

There will be a day with no more tears, no more pain, and no more fears

There will be a day when the burdens of this place will be no more

Kohen lived for 62 days. Every single day was a battle for him. He only knew pain, and I found respite knowing that his pain was no more.

I’m not sure what I expected the following weeks, months, even years to hold. Knowing our story, people looked at Mac and me with sorrow in their eyes. I knew everyone meant well, but I hated it. I had nowhere to run, nowhere to hide—no place I could just “be” without someone reminding me of the hell I had just been through. The medical bills had piled up. I hadn’t worked in months. I lost my son. I lost my house. I lost my desire to live.

For the next few years, guilt followed me, a shadow I could not escape, no matter how hard I tried.

For the next few years, guilt followed me, a shadow I could not escape, no matter how hard I tried. I replayed Kohen’s 62 days in my head, over and over again. I couldn’t escape the dark thoughts, lies really, that clouded my mind.

Lie #1: Kohen was born sick because of me.

The doctors didn’t know what caused Kohen’s in-utero illness. Their best guess was a virus I had caught and passed on to him. If I had just washed my hands more during my pregnancy, Kohen would be here today.

Lie #2: I waited too long.

The night of January 29, I had the feeling that something wasn’t right. Rather than rushing to the emergency room, I tried to prove everything was okay. Would Kohen be here today if I had acted sooner?

Lie #3: I wasn’t there when Kohen needed me the most.

Kohen came home for one night—he got to spend a few minutes in the crib we had prepared for him. My older son, daughter, husband, mom, and dad got to hold Kohen and say their goodbyes. While we waited for Kohen to pass, I felt like the walls were collapsing in on me. I needed an escape. As I handed Kohen to Mac, I left the room to take a hot bath. That’s when my son passed away, at the very moment I left him. What kind of mother leaves her dying child to take a hot bath?

Lie #4: I could have done more to protect Keaton and Kerené.

I can’t even imagine the pain my son and daughter felt. Overnight, life was turned upside down. I was gone more than I was home. When I was home, I was a mess—scared, sad, and completely exhausted. They saw Mom fall apart. If only I had been stronger, able to hold it together better, I could have made it easier on them.

Fast-forward to today. Eight years after we buried our baby boy, Mac and I still think about Kohen daily. We imagine what life would be like if he were here today. I’m not sure the wound in my soul will ever heal completely, but there are truths I’ve come to accept and celebrate about our time with Kohen:

+ I loved Kohen Micah Hetherington completely. I could not have loved him more.

+ Although short, Kohen’s life served a great purpose.

+ Keaton and Kerené have experienced true loss and are stronger for it.

+ Everyone handles loss differently and that’s okay.

+ Nurses and doctors are heroes. I don’t know how they do what they do. Thank you, Nurse Dan, Nurse Marvin, Dr. Zeiba, and Dr. Alexander.

+ People are good and willing to go above and beyond when you need them.

+ My mom is my saving grace. She brought hope when I needed it the most.

+ The Ronald McDonald House is an organization worth supporting.

+ Chocolate-covered cinnamon bears are a thing (Kohen’s nurse at Primary Children’s introduced them to us) and they are delightful.

+ Even a newborn can give his daddy a nipple twister (true story).

+ Hospice care is a godsend.

+ Faux hawks are cool, even on my 41-year-old husband.

+ One day, I will see Kohen again. For now, I will continue to dream about him.

+ The loss of my son was devastating, and the lies I told myself caused years of unbearable pain.

Looking back now, I know that I did the best I could. During Kohen’s short life, I loved him completely—I held nothing back. Fully present in the moments I shared with him, I now have the sweetest of memories. When I close my eyes, I see Kohen’s face. I feel the weight of his body against my chest and the warmth of his breath on my neck. I can even remember the sound of his cry.

How I loved Kohen is how I want to live the rest of my life: fully present. Wherever I am, I want to be all there.

Every day of Kohen’s short life, Mac and I read him the children’s book Little Boy. We must have read it a hundred times. The author, Alison McGhee, gives readers a beautiful reminder to live in the present. It was never truly about a world with or without Kohen. It was about the 62 days I got to be his mom.

“Little Boy,” the book reads, “you remind us how so much depends on days made of now.””

By Jennifer Hetherington

Grief & Loss