Surviving the Unimaginable

Humble advice for those who lose a child.

Erin with her son Sam.

By Erin Benson

My story often brings these words to the lips of those hearing it. Before losing my son, I likely used these words to describe the death of a child. I was wrong to do so.

In July of 2013, my two-year-old, Sam, was diagnosed with an incurable brain tumor called DIPG. Ten days later, I gave birth to twin daughters with major health complications of their own.

For months, our lives morphed into a medical nightmare: daily sedation, blood transfusions, infections, side effects, DNRs, and feeding tubes.

When my son finished treatment, and my daughters were healthy enough to travel, we set out on a mission to make Sam as happy as possible for whatever time he had left. Doctors estimated that was 9–12 months.

All photos provided by Erin Benson.

When a person says they “can’t imagine” what I’ve been through, I feel both validated and ostracized. Validated because to rise each day carrying the crushing weight of knowing my son would die while still having to perform the vital yet monotonous tasks of parenting three young children — playing, feeding, bathing, changing — took a heroic amount of effort. Ostracized because saying one can’t imagine is the equivalent of saying one won’t imagine. It feels like a verbal push, a nudge to change the subject or move to the part of the story where I find meaning in my firstborn’s short, painful life. And that makes me feel alone.

So how does one manage the unthinkable, the unimaginable, the unsurvivable?

Losing Sam was the hardest thing and grieving him is deeply personal. There are no numbered steps to follow, no discernable paths forward or through the pain, no programs or services that work for everyone. I humbly offer two pieces of advice to anyone managing tremendous loss.

First, make space for all the feelings that accompany grief. We so often conceptualize grief as a deep well of sadness. We think of weeping in the shower, of lying in bed for days, of visits to gravesites armed with bouquets and prayers. My grief was much more complex. It included nuanced and confusing feelings that could potentially launch me into a chaotic spin that lasted for days. Feelings like relief from watching my child suffer and wondering each morning if it would be his final day. That relief was followed by immense shame for experiencing relief, then seething rage at the universe for asking so much of my family, disgust that I failed to protect my firstborn, and a manic desire to escape my life and to run.

The most painful and destructive feeling I experienced after Sam died was self-blame.

I felt certain that I caused his pain and then failed to alleviate it. I had been careless with my birth control before we conceived Sam and careless with my pregnancy after. I ruminated on the occasional glass of wine or bite of sushi I randomly imbibed. I wondered if the birth control pills I kept taking after conception, not knowing I was pregnant, mutated a gene while he was in utero. For many months after Sam died, I felt certain that I caused Sam’s cancer.

Losing Sam forced me to see that grief is not only a deep well of sadness but a shapeshifting fire that burns through the essential parts of us. That process and the emotions it evokes will look different each day and for each person.

When I took the time to recognize, name, and most importantly, not judge the emotions surrounding my grief, I felt the burning subside into something that felt more manageable — a smolder rather than a blaze.

Second, take all the help you can get. The people who supported my family during Sam’s illness and after his death saved me. Their acts of service and love wove themselves into a rope I could use to drag myself from the murky, churning pool of despair. Talk to a spiritual advisor, a mentor, a therapist, a grief counselor, a friend, a parent, anyone who can truly listen without judgment. Tell them what you are struggling with. Tell them what you need and then accept their offers of help. Subdue your pride. Let them make you dinner, do your laundry, watch your other children, give you money, buy you flowers, write you cards, comb your hair, walk your dog, or paint your nails. Let them sit with you on days you can’t be alone. Tell them you need solitude when they invite you to a social function you can’t muster the energy to attend.

Since Sam died, I have also sought help from professionals. I see a therapist each week. She has incorporated several techniques into our sessions, including EMDR (Eye Movement Desensitization and Reprocessing), IFS (Internal Family Systems), and CBT (Cognitive behavioral therapy). Over the years, my doctor has prescribed me Prozac, Lorazepam, Trazodone, and Ambien to help me sleep. I see an acupuncturist, practice yoga and guided meditation when I feel ungrounded, run when I feel stagnant. I have received reiki. I microdose with CBD/THC. I am considering going on a guided healing journey that utilizes psychedelics. I am interested in but too skeptical to seek out a medium.

I have read and listened widely to experts on the subjects of grief, trauma, near-death experiences, loss, PTSD, and mindfulness. I take pieces of any school of thought that makes sense to me or gives me perspective, including Buddhism, Taoism, Catholicism, Toltec wisdom, psychology, and western medicine. I have mashed these bits of wisdom into something resembling a personal philosophy, one that continues to evolve.

Surviving the unimaginable continues to be the most profound and painful thing I have endured. Making space for all the emotions that accompany grief and seeking and accepting help allowed me to survive the unthinkable.

And, when all else fails, I cling to Sam’s final words spoken in the day before his death to a room full of people who loved him.

I knelt before him and asked, “what can I do to make you happy right now, Sam?”

He replied, “I am happy, Mom.”

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