Processing the Grief After My Son's NICU Stay

I’m watching my youngest asleep on my chest. He’s 20 months old, but I still love to hold him every chance I get. My eldest is nearly 5 and those years have passed so quickly. I remember holding him, but his first two years were a blur of medical appointments, and those quiet moments of watching him sleep were missed.

No one believes me when I say that feeling, of lost time, is a form of grief. Our society is so quick to label events and experiences, place them in a box with a neatly tied ribbon. We don’t like to dwell or to process. We want to move forward and past those negative or difficult times. But grief doesn’t work that way. We can’t press fast-forward, or define how we want to process the immense feelings building inside.

When my eldest was born, it was an emergency induction, two-day labor and an immediate transfer to another hospital with a top-level NICU. It was horrific. I wasn’t prepared, I didn’t know what was happening, nor why it was happening. The doctors were confused, the nurses tried to comfort me, but there were no answers. I was sleep-deprived and recovering from birthing a reluctant baby who ultimately needed help to arrive.

After he recovered, following four long weeks in the hospital, he came home. It felt surreal to have him finally in our own space. No more beeps from monitors; we could hold him and stare at him all day and all night. We were so grateful. But from the first night, he coughed and spluttered, gasped and choked, and it was clear something was wrong.

Months upon months of appointments finally gave us multiple diagnoses that led to medication, diet changes and surgery — but still, sleep was elusive. Support from family and friends was questionable. No one understood, but how could they if they were not there? They weren’t walking endlessly trying to settle a screaming baby who was in pain.

We battled on for more than two years before things became easier. But with time, other challenges appeared and the chance to process emotions, to allow the experiences to become distant, never arrived. I felt distant, unable to participate in everyday life, consumed by a constant need to protect and help our child. We felt as if we were on another planet.

The grief was overwhelming at times. How did we end up on such a distinct path, away from the regular path of new parents? How could we better support ourselves and gain help from family and friends? What could we do differently? There were no answers to my questions — my husband and I were shadows of ourselves, lost in pure exhaustion.

One day he began to sleep for longer stretches and over time we began to feel more alive. We could see outside our bubble; we could think and feel beyond the borders of our home. We began to see from the outside how our life had been, and the grief grew. We felt angry and sad at what we had experienced. We felt dismissed and invalidated for our experiences. We felt misunderstood.

Then our second child arrived. He was healthy, and never left our arms. Slowly with time, the sharp contrast of the two experiences offered us a chance to reflect, to heal and grow. Although we knew we were lucky to have two healthy boys, we also became more comfortable owning the grief that had enveloped us for so long. We could speak to it more openly; we could share it and tell our story. While no one will ever really understand, it isn’t so important now. Now we know what it’s like to have a healthy child who never leaves your arms. We know our first experience was so different. It is no surprise we were overwhelmed by grief.

Now our eldest is almost 5 years old. Life continues to be challenging for him, but his smile has never been wider. His enthusiasm is infectious and he is kind beyond measure. One day we will tell him his story, but for now we are grateful he is here, and give ourselves self-compassion, patience and love for our journey as parents.