Saturday morning I stood on a campus I haven't visited since my freshman year of high school with an oversized picture of Evelyn in my hands and told her story to a crowd of student athletes, their coaches, their parents, and a news crew. It was a surreal experience on so many levels. Not least of which included being side by side with other mothers who lost a child to Sudden Cardiac Arrest. Or staring into the faces of young, strapping kids full of life and expectation, all ready to conquer their dreams and reshape the world as Ev once was. Or wondering what the fourteen-year-old Anna who roamed the nearby halls would think to know that nearly three decades later she would come back to tell the story of the daughter she couldn't save. My back hurt, and I was crying into my mask, and public speaking makes me weak in the knees. No part of it was easy. But it was worthwhile. And that is the point of this post.
Telling Evelyn's story is enormously difficult for me for myriad reasons. I have worked incredibly hard over the last three years to learn how to function again, to quell the intrusive thoughts, to focus on the present rather than a past I cannot change and a future I cannot control, to stop punishing myself for a failure I cannot reconcile, to subvert the desire to die, to redirect the rage, to carve a meaningful life for myself again, and to make peace with feelings like forgiveness, gratitude, and a faith I have had to rebuild from the ground up in the face of questions which can never be adequately answered. And I still have a long way to go towards true health, well being, and balance as I shoulder endless grief and attempt to manage overwhelming pain.
A large part of my current success resides in the ability to put Ev's loss, my pain, and all the rest of it on a back burner while I focus my conscious attention on whatever tasks are at hand. Believe me when I say, it's a lifestyle. It's a choice made every day, moment by moment. An active decision to not go down the what if rabbit holes and my fault shame spirals. To silence the voices in my head that want to know, want to scream, want to wail. To accept what is unacceptable, forgive the unforgiveable, and and love what is inconceivable. Over and over and over again. And there has been a steep learning curve to get to this point. To find some kind of space between a dissociation so powerful it's like being preserved in ice and an agony so visceral and consuming you could lose yourself to it forever.
In order to do what I do—to live in the reality of life without Ev and look more or less like everyone else, to move and work and talk like other nonbereaved people, to care for my surviving children and maintain a career and do very basic tasks like feed myself—certain sacrifices have to be made. I rarely look at Evelyn's pictures anymore. I can't remember the last time I watched one of her videos. I haven't visited her room in months. I can't even dust her urn and the things we keep around it all that often. All of which feels like a terrible betrayal on my part. And yet...one that I cannot escape.
Why? Because those things are triggers. They call to a bottomless pain that has the ability to wipe me from the face of this planet at worst, and knock me out of the running for a day or more at best. If I decide one morning that I cannot go another second without seeing her face and I open her photo albums, drinking in every smile, every twinkling eye, every cute pose, then I pay a price for that. In time. In energy. In cognitive function. In emotional stability. I will spend the better part of that day in bed. I will lose work hours I can't reclaim on a deadline. I will cry until my eyes are so swollen I have to take medication to ease the inflammation. I will trot out all the same unanswerable questions and torment myself with all the same purported failures that make living as me a goddamn nightmare. I will invite flashbacks and intrusive thoughts and PTSD dreams to resurface.
Not every grieving parent will experience the tokens of their child's existence this way. Some will find comfort in them. Once, I did too. And I hope that becomes the case for me again. I hope that at some future point, I can do those things and function well at the same time. But until then, this is my present truth. And that makes telling Ev's story heavy with risk. To tell Ev's story is to relive the experience. To remember those nauseating early days that were nearly as traumatic as the loss itself. To see the images no parent should ever have to see of their child's lifeless body—that I have with great effort learned to push aside again and again. To wonder about the holes in my memory. To recall how good it felt just before, when I could parent her physically—touch her, cuddle her, laugh with her. It is to open the wound, the one that will never fully heal, and bleed anew.
So there has to be very good reason to do that. If I am going to open my greatest wound, if I am going to bleed for you, if I am going to risk the flood of memories and feelings and nightmares and symptoms that threaten to capsize me, there has to be a monumental reason for me to do so. And here it is: it helps.
It helps other grieving parents find their way through the wayward dark. It helps other non-grieving parents have a greater appreciation for the children and the time it is so easy to take for granted. It helps me recall the absolutely spectacular individual that Evelyn was. It helps me to track how far I've come in three years, even if relapses are a real and frequent part of grief. And above all, it helps prevent another mother ending up like me. It helps prevent another child ending up like Evelyn.
Children don't belong in morgues. They carry the dreams that remake the world in their image. They carry the future. They carry our progress, our growth, our evolution. When they die, a little piece of that future dies too. No family should experience what we have. No child should experience what Ev did. That's why I tell her story. That's why I take the risk. That's why I feel the pain and why I spend the time and energy it will cost me. And you should too. It doesn't matter if you lost your child to something as senseless and preventable as SCA. All child loss is senseless. How your angel lived, and how they died matters. Your story, their story has the potential to change lives, to circumvent disaster, to heal hearts, to grow the world. That is how you carry them forward, so that their work here can continue. Your child's story is transformative medicine. And I know it's hard to tell. I know how much it hurts. I know the price you'll pay. And I'm telling you to do it anyway. Many, many times. Never stop telling your child's story. Stories are magic. Storytellers are healers. And your child is a hero. Regardless of how they died. When you tell their story, you give their agency back to them. You remind the world that the dead keep speaking long after they are gone.
I love each and every one of you. And I love your amazing children. Your courageous, heartsick, special, fearful, uplifting, devastating children. Whatever they suffered has merit. Whatever they accomplished. Whatever they overcame. Whatever they succumbed to. Never be ashamed of your child. They are teaching us so much. Lessons we desperately need and may never get another way. Tell their story. As many times as you are able. Give us all the gift of who your child was in life and who they are in death. And give them the gift of continuing their work in the world.
*Inspired by Ruqayya Gibson and the Damani Gibson Foundation and all the mothers of SCA, SUDC, and SADS.