In 2015, we spent a week at the beach – a familiar condo we had visited several times. When the summer schedule was being formed, there was no question whether we would go. At issue was how hard it would be after losing Kylie to Ewing Sarcoma six months prior. She is an ever-present mist coating our lives, so almost everything is hard. But not everything holds an opportunity of mingling the hard with fun. This place offers that.
I am an early riser and often used the mornings to write. Any previous summer, Kylie would soon walk out of her room rubbing her eyes and pushing my laptop aside to sit with me. She would ask me what I was writing, and I would usually tell her a story while she mooched my coffee. Sometimes, if she was still tired, she would ditch me to go snuggle with her sleeping mommy. But most of the time, I got some precious alone time with her. I had no way of knowing just how precious it was.
Shortly before she died, Kylie told her mother and me that sitting at the edge of the water digging her toes in the sand with a book was her favorite place. We all love that. In fact, I just finished my third book since we arrived. Every morning, we carry chairs down to the beach and spend the majority of our time reading. It is spectacularly hard not to dwell on the sadness of the empty chair.
We chose her gravesite based on that. As we were being driven around the cemetery in a stupor, we came beside a small pond and we both told the driver to stop. He informed us that this area was more expensive, a fact that normally would cause me to reconsider. In this case, it didn’t matter. We chose to get as close to the water as we could so our baby could dip her toes in the water forever.
At the beach, Kylie screamed out at us constantly. It was as advertised: both hard and fun.
We laughed at the memory of Kylie’s stubbornness. As a fourth child, she felt the pressing need to keep up with her sisters and always insisted on carrying her load. The chair she preferred has backpack straps and the first few years here, that chair would rise over her head and nearly touch the ground. Undaunted, she made the trip every day.
One year we discovered crab hunting. Kylie named our first one Cinderella. We were about to name the second when we made another discovery… crabs don’t like sharing space. So, we named number two Mike Tyson and had a cage match. We sat ringside until Kylie’s big heart could stand the fight no more and she made me release them.
Never one to be left behind, toddler Kylie put on water wings and came as far out in the surf as we did – even when we talked of sharks. We affectionately dubbed her “chum” and wrote a song we would sing as we encouraged her to bob further out in the water. She loved that.
Other memories poured out of us, and sometimes tears. There is no expiration date to sadness. Grief will always have its tentacles close enough to latch onto us. But I found on that trip, for that moment in time, my memories were mostly happy ones of a girl we love and miss.
Even then, I realized that I am forever broken. The heart is said to be an involuntary muscle, yet this year I have had to force mine to beat at times and imagine my life will be spent jumpstarting it when it is clogged with sorrow… until that day when it will no longer turn over.
In 2019, my wife, Robin and I helped to facilitate Common Ground for the first Sunrise Retreat, which ministered to Lighthouse families who have lost their child. It was, at times, raw and difficult. There were tears during our discussions, but there were also bonds formed and hope renewed. It was beautiful to see. Sometimes in grief and trauma, it is just nice to know another human has stood where you are and is still standing. This may sound crass, but the services of many childhood cancer organizations expire when a child does. And the first few years after your child passes is a critical time you need to be supported the most. I was excited that Lighthouse made the decision to create this much-needed retreat, and I’ve been humbled to be a small part of it.
“Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.”
MEET MARK MYERS:
Mark Myers is the Director of Communications for CURE Childhood Cancer. He and his wife, Robin have been married for 30 years and are the parents of four daughters, two cats, and two very needy dogs.
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