An invitation to the bereaved parents club 

Grief isn’t linear; it doesn’t come in stages. There is no beginning or end—it’s like a snake biting its 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 oblivious to the dangers and tragedies that plague human existence. 

Your grief will manifest in phases, like the moon—waxing, waning, crescent and full. Circular and in perpetuity, without cause or reason. It glows bright in the night sky even when hidden by thick clouds. It calls you out of bed in the morning or back in during the afternoon. It’s always there: the love and the loss, commingling, blending, fusing and coalescing. Keeping your heart pumping even when you wish it would stop. 

You might feel anger, fear, despair, anxiety, regret, remorse. You may even feel reckless, relief, joy, guilt. Feel it all 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 down, sealing his fate with cruel genes, death and pain. 

I brought him home with hospice care and watched him fade away. I envisioned his body ablaze in the crematorium, unable to feed him for 11 days or give him the physical comforts he deserved—that we all deserve as human beings—for fear of causing trauma. Instead of spoon feeding him raspberries, I gave him drops of blue raspberry-flavored Morphine and Ativan. 

He never grabbed my neck or searched for my chin, attempting to learn who I was to him. He never wrapped his fingers around my index finger or thumb—a gesture so ordinary yet extraordinary, otherworldly, magical. A true connection. A tiny, fragile soul who could love anyone in this world never got the chance to choose me, my mistakes and my fears. 

We were dealt an impossible hand. Parenthood—whether as a mother, father or caretaker—is often an impossible job. But this is something different. This is paradoxical: to love and to lose in this way. It’s unthinkable, and yet here we are. You and I, bound together with an invisible string. 

How did we get here? What did we do to deserve this—to experience such torture in this lifetime?

There are no answers, at least no answers to the questions that keep your brain on fire and your heart shattered. You may spend the rest of your life searching for justification. The only thing that’s certain now is uncertainty and sitting in that is unbearable.

Here’s what I do know: You were given an impossible job, and I am certain you managed as well as you could have given the grave circumstances. The depth of love for your child is unshakeable, impenetrable, undeniable. You made every decision out of love and loyalty and respect and courage and selflessness—even if it doesn’t feel that way. You made the most out of every moment.

I wish I wasn’t meeting you under these circumstances. I would never want to invite you to this club, but the bond we have, the tie that binds us together, is strong. This event has changed you in ways that no one in your life will ever understand. It can feel lonely and maddening. It’s okay if you feel disconnected to those who have the luxury of not being in the bereaved parents club.

You’re on a new path now, wide-eyed and awake. It’s scary to walk untethered on new legs, like a newborn fawn on the shady forest floor. You search for home amidst vibrant green moss, moist air and endless ferns. The smell of new growth, regeneration and Lily of the Valley surrounds you. There’s beauty here among the fallen trees and sticks—memories the pine trees hold sacred. Glistening streams and spider webs covered in iridescent dew drops. You’re not alone; life grows quietly all around, with purpose. There are pockets of shadow and indisputable light. Somewhere in between, you’re sitting on a smooth rock with your little one, the one you love. Holding them tight, comforted by a familiar cross breeze. Forever connected, a part of one another.