An invitation to the grieving parents club

Grief is not linear; it does not come in stages. There is no beginning and no end – it is like a snake biting its own tail, eternal. It changes the fibers of your soul, your cells, everything in an instant. Who you are today is not who you were back then, when you were unaware of the dangers and tragedies that plague human existence.

Your grief manifests itself in phases, like the moon – waxing, waning, crescent and full. Circular and eternal, without reason or cause. It shines brightly in the night sky, even when obscured by thick clouds. It calls you out of bed in the morning or back in in the afternoon. It is always there: the love and the loss, mixing, merging, merging and merging. It keeps your heart beating even when you wish it would stop.

You might feel anger, fear, despair, anxiety, regret, remorse. You might even feel lightheartedness, relief, joy, guilt. Feel all of these without judgment or shame.

I am you, just a future version. I lost my son on a cold March day in 2022 to Epidermolysis Bullosa (EB), a rare genetic disorder poetically called “the worst disease you’ve never heard of.” His father and I unknowingly passed it on, sealing his fate with cruel genes, death, and pain.

I brought him home with hospice care and watched him waste away. I imagined his body in flames in the crematorium, and for 11 days I couldn’t feed him or give him the physical care he deserved – that we all deserve as human beings – for fear of traumatizing him. Instead of feeding him raspberries, I gave him drops of morphine and blue raspberry-flavored Ativan.

He never grabbed my neck or felt for my chin to figure out who I was to him. He never wrapped his fingers around my index finger or thumb – such an ordinary yet extraordinary, unearthly, magical gesture. A real connection. A small, fragile soul who could love anyone in this world never had the chance to choose me, my mistakes and my fears.

We have been given an impossible destiny. Parenting – whether as a mother, father or caregiver – is often an impossible task. But this is different. It is a paradox: to love and lose in this way. It is unthinkable, and yet here we are. You and I, bound together by an invisible bond.

How did we get here? What did we do to deserve this – to have to experience such torment in this life?

There are no answers, at least not to the questions that are wracking your brain and breaking your heart. You may spend the rest of your life searching for justification. The only thing that is certain now is uncertainty, and staying in that is unbearable.

This is what I know: You were given an impossible task, and I’m sure you handled it as well as you could under the difficult circumstances. The depth of your love for your child is unwavering, impenetrable, undeniable. You made every decision out of love and loyalty and respect and courage and selflessness – even if it doesn’t feel like it. You made the most of every moment.

I wish I wasn’t meeting you under these circumstances. I would never want to invite you into this club, but the bond that we share is strong. This event has changed you in ways that no one in your life will ever understand. It can feel lonely and crazy. It’s OK to feel disconnected from those who have the luxury of not being part of the grieving parent club.

You are on a new path now, wide-eyed and awake. It is frightening, walking untethered on new legs, like a newborn fawn on the shaded forest floor. You search for your home amidst brilliant green moss, moist air, and endless ferns. The smell of new growth, regeneration, and lily of the valley surrounds you. There is beauty here among the fallen trees and sticks—memories sacred to the pines. Glistening streams and cobwebs covered in iridescent dewdrops. You are not alone; life grows everywhere, silent and purposeful. There are patches of shadow and undeniable light. Somewhere in between, you sit on a smooth rock with your little one, the one you love. You hold him close, comforted by a familiar breeze. Forever connected, a part of each other.