“My single strand of pearls lay draped over my muslin mannequin that sits on my dresser. I haven’t worn them in almost fourteen years. I love pearls, just not that necklace. I can still feel the smooth singleness of the pearls against my chest and my black wool funeral suit, the one that hung in the closet never wanting to be worn. It represents the unbearable part of my grief from long ago.
Our story began in a hospital room in Pennsylvania in 1983. Weeks after our son was born, I wrote my first note to him. I wrote from my heart, from a place of love I’ve never before known. It was penned as a hello/goodbye letter due to his ominous beginnings.
I believe he came to me to cause me to write and think in a new uncommon way. After all, he was an uncommon boy. I had everything I needed from that point on. My heart, my truth, and a piece of paper and pen by which to share them both. At least that’s what I thought. It would be miles and miles later. With scraps of paper scattered about my life like crumbs on a messy wayward trail that would eventually lead me back to who I was meant to be. Thirty years, to be exact. Thirty years of collecting scraps of my truth before I would sit down to face my fear head-on in the center of my internal universe.
Why is it that truth, our greatest gift, is often scary as hell? Other than the first two and a half years of marriage, my husband and I have never lived the life we planned. Who reading this has? Life has surprised us many times over. There was indeed a different life waiting in the wings – a life-altering game changer. Our first child, Preston, was born with hydrocephalus, which led to various developmental and health conditions. I still remember the night of his birth – after the initial scare, when we were allowed to think everything was okay, that the life we planned was granted to us. His shock of red hair delighted us. Skin the color of milk. His blueness of eyes fought the intensity of red hair. First came silence, then fear. Was the pallor of our son’s skin due to his Irish heritage or the long labor? An unnerving quiet overwhelmed our ears. From the delivery room table, white-knuckled grip in his, I watched Sam’s face transform into a question mark. The tiled labor room walls seemed to push the already muffled sounds down to an inaudible level. We watched helplessly as the nurse administered oxygen. Silence overtook the room like a freight train roaring toward us. ‘Come on,’ Sam whispered, as if willing life into our soundless baby boy. I now understand why it’s called The Miracle of Life. It felt however miracles feel when the world comes alive again. When you burst from the realm that feels thick and unyielding. The elation, as you vow never to ask God for anything again. After what felt like forever in this cautious place where we forgot to breathe, we heard the faint but miraculous cry of our newborn son.
That was our beginning. Our birthing story. Weeks later, after taking lessons on how to bring him home to die, we were told by his primary care nurse, ‘Drive as fast as you can to the NICU hospital an hour away.’ Through the phone, her voice already sounded like grief painted over hope. We made it though, sitting in wooden rocking chairs behind a not so private privacy screen, a metal tray in-between containing a box of Kleenex, and all the NICU sounds of machines sustaining a life. We attempted to rock our baby into heaven. But life in all its intricacies and joys had another plan. Preston lived and we began again. Different and bruised from the tenderness of life. But renewed by its miracles and the power of love and courage.
Four years later, our beautiful daughter Samantha was born. Rocking her to sleep, her silky newborn head snuggled in the crook of my neck like its sole purpose was for just that. I remember thinking, ‘I guess sometimes, just sometimes, life works out the way it’s supposed to.’ In this moment, my hard, secure edges melted away like a popsicle on a hot summer day. When I stilled my heart long enough, I could feel it transforming. And while I didn’t think it possible to alter it anymore, I felt my heart soften the exact moment I first laid eyes on her.
Before Preston and Samantha’s birth, Sam and I were busy evolving into the individual people we were meant to be, helping our couple story to blend with our individual stories. Still unsure of what either meant. Then our very sick baby was born, followed by a healthy baby girl. Together and separately, we began this process all over again, living by certain mandates that would blend our family story together in a new and different way.
We advocated on our son’s behalf and on behalf of kiddos with cerebral palsy and other disabilities. I began working in special education advocacy and inclusion. By now, a wheelchair had become as ordinary as a kitchen chair. Life moved along until it didn’t. Until the day, twenty-three years later, when we lost our son. Sam and I had to busy ourselves with figuring out who and how and what our family of three was meant to be. Once again, we did it individually and together. And with our dear daughter as well. Eventually, we created a new story. But before we did, we had to unravel ourselves completely and wholly. Until we stitched together a new family of three from scratch.
Looking back at the day we lost Preston, I had an ear infection and couldn’t go to the hospital with him and his dad. Due to a pre-existing condition, he required a brief hospitalization. This had become normal to us after forty-eight hospitalizations. I spoke to the guys while they were in the ER. Preston was already feeling better, as treatment had begun. Sam put him on the phone, he sounded great. I told him, ‘I love you’ and he said, ‘I uv ou’ back. I secretly wished he’d be able to come home the following day.
Preston went home… He died unexpectedly, yet peacefully in his sleep five days before Christmas. We had become a chapter in the storybook of life. The one you read and say, ‘I can’t imagine what I’d do if I lost a child.’ We couldn’t either. One of our life compasses was gone. We were adrift in a black abyss. Vacant and damaged, our roof had come crashing down on us.
We crumbled inwardly into tiny little pieces. We hurt beyond any reasonable hurt. An unknowable hurt. We cried until we didn’t think we could cry anymore. We cried some more.
Sometimes things happen for a reason for which reason doesn’t exist. Surviving the loss of a child is to know that your stitches have been undone. That your edges are frayed and ripped. That the fabric of your life is stained with tears, and at some point, you will have to put yourself back together with missing pieces and holes where life used to be. And in that moment, you will know what it feels like to create another human being from scratch.
In the darkest hours of grieving, I learned how hard we had fought for love. We are broken. And whole. We are human and unexplainable, with spirit guides who tiptoe beside us through life. If we’re lucky, we become more aware each time life breaks us open revealing another layer of might. Even though, as a family, we’ve experienced both extremes of the rich plump skin and the hard, brittle bones of life, we continue to be more of who we are meant to be. For we are defined not by our losses, but how much love we carry in our heart.
Grief doesn’t ask permission. Not ever. Though it has taught me the enormity of love. And the capacity within each muscle and bone to expand into another place. Grief is amazing in its ability to heal and hold love. Grief is love. Whether it was love or loss, joy, or tragedy, I learned to identify and celebrate whatever feeling needed to be heard. And in the hearing and releasing, I found my truest self. Preston causing me to write, his life, death – was it all choreographed? It doesn’t matter, it only matters that we lived it to the best of our ability. When asked why I wrote the book, I always tell people; I didn’t write it because he died, I wrote it because he lived. Through the years, time thoughtfully rewound itself, putting a soft cushion between the pain and us, enabling us to live past the dying to a remembrance our hearts could bear.”
This story was submitted to Love What Matters by Karen Draper, author of The Place of Us. You can follow their journey on Instagram and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more touching stories like this:
‘Sweet boy, Mommy and Daddy love you so much.’ His silent 3-pound body was wrapped in a blanket.’: Parents of child loss know they will see son ‘in heaven,’ celebrate living twin’s life while grieving their loss
Spread beauty and strength for others. SHARE this story on Facebook with family and friends.