During his short life, my son Justin prayed from his whole heart for world peace.

He inspired others to do the same. His legacy can be found at Justin Carr Wants World Peace (JCWWP): www.justincarrwantsworldpeace.org

Grief comes in many forms beyond a loss due to a death. It can arise in the aftermath of a relationship, when a job terminates, when moving, over the death of a pet, or when a change from good health to illness occurs. You cannot compare or compete with anyone else’s grief because everyone handles it in their own unique way. Grief changes what is familiar, as well as one’s hopes and dreams. There is no specific timeline or method for dealing with grief and its circumstances—no matter how much a person wants relief from the weight of sadness. Hearing the news that you have heart disease—a life-altering illness—is shocking. No words can change how you feel. Not knowing there is undiagnosed heart disease lurking inside is worse and this too can make your life unpredictable. This is my story of how a life-altering, life-changing, and life-ending event affected my heart—it put a hole in it that can’t be refilled, like sand on the beach. One day I was a happy wife, proud mother of a 16-year-old son, and a working professional. But before that day ended, my world and life changed in the flash of a second after hearing that my son Justin had died mere minutes after we’d enjoyed a jovial telephone conversation prior to my butterfly swimmer diving into the pool for practice.

“My thoughts flew to Justin, my butterfly, who wanted me to accept his metamorphosis and find new ways to live. “

A n undiagnosed heart condition, idiopathic hypertrophic cardiomyopathy, caused his sudden cardiac arrest/death. His heart was too big…. I became a childless mother, a shell of the woman I used to be, with a heart full of grief. I could not move, I could not cook, I could not return to my job. I am not and never will be the same. After Justin died, I met with two care managers at a coffee shop. Trivial conversation preceded before one of them said, “Susan, your impressive resume reveals a laudable career. Don’t you want to go back to work?” “Have you ever lost a child?” I responded. In unison, they said, “No! We can’t imagine.”

Then I spoke with them about Justin, my selfless Earth angel, Renaissance man, scholar, singer, actor, artist, Junior Olympic butterfly swimmer, underdog supporter. Since the age of 4 he’d repeatedly prayed, “God help us achieve world peace.” He inspired over 100 of his high school classmates to write about him in their college applications as being the “most inspirational” person they’d ever met. 

The men were speechless, but then literally an eavesdropping 'spiritual healer' sitting at a nearby table made a polite interruption when he said, “Sister, I feel your pain. You need to find peace to free yourself. There is no death, only change.” We all were dumbfounded. It was a “heartquake” moment. 

I was no longer equipped to return to my job—one similar to the field Justin aspired to work in one day—but on living life with purpose.

And That purpose was to always remember him, to emerge from the darkness, to find inner peace, to love life, live bravely, faithfully, and cheerfully while instinctively giving mothering guidance to others just as I did for Justin.

This was my idea of how to let me be. The infinite and unimaginable trauma I endured catapulted me to a higher understanding of how I will live my life in the days and years to come. And I can't imagine living this new life as anyone other than Justin’s mom. It’s been a challenging journey from my chrysalis as I move towards finding a new voice, finding new wings. I know it is OK to scream, cry, and shout whenever the need arises.

I need people to walk with me, my sisters, my friends. I don’t need people to tell me: “Justin lived a good life. Be strong. Stay busy. Glad you are good and over the loss, it's been some years now.” I’m grateful to tell my story to all who will listen because the benefit is that its ripple effect helps other people whose hearts are filled with grief. 

Authenticity and empathy are two keys to creating a more compassionate, accepting, and peaceful world.

I’ve shared my personal story about grief with honesty, and I encourage others to share theirs. What can be good about grief? Good grief is how you navigate the toughest and most challenging parts of your life. Good grief is when everyone wants to just listen, or share more, to achieve a better way to live when the worst thing happens.

When your heart is filled with grief, I encourage you to take good care of yourself. Use your voice. And use your heart to create your own legacy, just as Justin did.

I now see myself as a courageous woman who copes with this unimaginable loss on my terms while accepting my current and continual transformation—it can be unpredictable, and that’s OK.