September 23, 2005: 15 years ago today, life changed forever. I thought I was aware, I thought I appreciated the fight, I thought I understood the challenges and realities of cancer, and I thought I was doing everything in my power to be an advocate, ambassador, and change-agent. The reality . . . I knew nothing.
On September 23, 2005, it was my sixth sense of mother’s intuition that knew something was terribly wrong. I would give anything to have been mistaken. Taking Jack to the ER on an afternoon just like this one turned into a nightmare I will in no way ever wake from. I will never forget the moment or the looks on the faces of the two physicians who came into our little ER room and spoke the words, “Jack has a tumor.” My world, my hopes, my dreams, and my promises shattered as my fears became reality, my instincts proved correct, and my work to fund cancer research and new therapies took on a different meaning tied to the life-and-death outcome for my own sweet boy with the golden hair and generous spirit. In an instant, life changed and, with it, I changed. The world I knew and now know will never again look the same.
I was recently asked: “When are you going to stop trying to save Jack?” This bold question left me speechless for a moment because the answer is both short and long, simple and complicated, heartbreaking and heartfelt. The short answer is that it was only in death Jack was lovingly healed and my fight was abruptly halted. My heart broke as his soul soared.
The long answer is that love and legacy never die, they live on. I will never stop trying to save the lives of kids because my limitless, infinite love for Jack must be put to good use. I know I can’t save my child, but I can use what I know to give other children a stronger chance. Perhaps, I will be so bold as to say, if greater support and awareness of the problem had existed before Jack was diagnosed, there may have been better treatments, opportunities, cures, and hope for Jack. I cannot turn my back or a blind eye to the great needs; there is no way for me to stop knowing what I know now.
“Death ends a life, but not our relationship, our love, or our hope.” These honest words were written by David Kessler in Finding Meaning: The Sixth Stage of Grief. Like my sixth sense, the sixth stage of grief is a mystery and can only be found deep within each person alone. There is no timeline, no roadmap, no chart to follow; the only way to see and know where to go is to follow the heart. And though the guiding heart may be broken, never to heal completely or be the same again, the inner light of love burns bright illuminating the way to a new path of meaning, mission, and hope guided by the sixth stage and the sixth sense.
15 years ago, most unwillingly, I began the journey of saving Jack. 15 years later, most willingly, I find meaning in what I know I must do for Jack, for the children I have met, and for the children and families yet to have everything they know change forever. And perhaps most poignant of all, I am aware, I fight, I face the challenges and realities of this changed life and world with the meaning and promise my heart sees for a better future . . . not just for kids or cancer, but for me. I may no longer see the world through rose-colored glasses, but the golden vision and orange joy visible through my new lenses will always find love and hope, this I know.
Finding meaning in who we become, how we live, what we know, and where we choose to guide our knowledge is a brave quest, not a bold question; knowing the difference means finding the light of hope with great heart and brightening the senses of possibility, purpose, and promise.