Updated: Oct 30, 2021
Today marks exactly two years since my daughter passed away.
My little girl, Eleni Hope, was born prematurely, almost eleven weeks before her due date. Struggling to breathe because of her undeveloped lungs, she was intubated and rushed into the neonatal intensive care (NICU). It's your home now, we were told, until your daughter is ready to leave the hospital. Unfortunately, she never did.
My wife and I lived far from the hospital and were lucky to get free lodging at Ronald McDonald House. Our room was conveniently located on the premises, the same level as the NICU department. It was comforting to know that you were literally around the corner from your child.
The room was small, with no windows, furnished in a minimalist fashion: the bed, the table, and one tiny storage unit. The common area—a.k.a. family room—was a much bigger space, enough to host several families at a time. There was a big kitchen, a massive fridge, several couches, a mini library, a TV with video games and many toys for children—everything a young family needs to maintain the disjointed routine of the hospital days.
In the middle of the room, stretching from floor to ceiling, there was a glass wall. Glued to that wall were numerous photographs of the many children discharged from the NICU including letters from happy parents. I read the notes, one after another. "Our daughter turned two this year," says one, "She made her first steps. Thank you!" "Our son is five. Thank you so much for all you have done!" writes another.
These letters are success stories. There is a reason why they are here—to boost the hopes of the NICU parents. They are here to encourage those who are waiting for their children to get better. It works. I feel encouraged. I soak in hope, feeling optimistic about the future.
I turn my attention to the bookshelf. A thick, softcover book catches my eye. I pull it off the shelf and begin reading. I browse through the many success stories of the NICU babies, wonder at the transformation of those children who "made it" through the hurdles of prematurity. On each page are the miracle stories, the stories of unbelievable turnarounds and happy endings.
What I can't find in this book are the stories of those parents who lost their children. I hear nothing about those who "didn't make it." But I don't look for them. I am consciously avoiding hearing those kinds of stories. Why? I don't want to be discouraged. I want a happy ending for my child.
The sound of the alarm disturbs the ambient sound of the family room. I drop the thick happy-ending book and rush towards the door. I am running down that long, narrow hallway to another room, my daughter's room. She is having another episode of hypertension. (It's when the blood vessels refuse to open up enough, disrupting the oxygen flow to the brain and other organs like lungs).
In a moment, I forget about the stories on the wall. I forget about the stories in the book. Suddenly, I am in my own story, my daughter's story. And this is when I begin to realize that Eleni's story isn't going to have a happy ending.
Hers isn't a story of success.
It's not book material.
Hers is a different kind of story altogether.
Telling Eleni's story—writing the book Life After Hope—wasn't easy, but it was necessary for several reasons. I didn't just do it in response to my parental instinct to honour my little girl's life; I did it because I wanted to be the voice for those parents whose children happened to be on the other side of the wall. I wanted the world to know that life, however short or tragic, matters.
Each story matters. It's important and it's worth sharing. There are people around who are willing to listen, feel your pain, and offer support. There are thousands of us, hurting, grieving people. We are standing on the other side of the wall with arms open in embrace. We know that life still can be meaningful, even when the ending isn't.
Maybe you lost someone you love, your spouse, your parent. Perhaps you are the parent whose child is currently in the NICU. You find yourself standing in the middle of the room, looking at the wall full of success stories. My only advice to you is this, "Keep looking!" And if you lost your child, I say to you, "Close your eyes and begin hoping!" Remind yourself daily of this one truth:
There is hope on the other side of the wall.
Sound comes from behind the wall;
This is the other side of story.
That painful sigh, that achy grieving—
Your story is alive and breathing.