Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-18 Sheryl Jedlinski
By Sheryl Jedlinski
When we learned that our son, Steve, and his wife, Megan, were expecting their first child in late May, my husband, Tony, and I were ecstatic about becoming grandparents and seeing our son become a father. “Baby J,” as we nicknamed him, would have the awesome responsibility of carrying on the Jedlinski name, and the distinction of being someone’s first child, grandchild, or great grandchild. Even in utero, Baby J was our rising star, long-awaited and loved beyond words. Imagining “all the places he would go and things he would do” (Dr. Suess) brought immeasurable joy to all of us.
Many times during my 17-year journey with Parkinson’s disease, and now cancer as well, it angered me to think that I might not be around to celebrate these family milestones. Slowly but surely, I am learning to live in the present, and accept the fact that no one is guaranteed tomorrow. This became painfully obvious when Baby J’s 20-week ultrasound scans revealed a rare, severe, incurable, congenital heart condition requiring multiple open heart and heart transplant surgeries, beginning shortly after birth.
Steve and Megan could not bear the thought of subjecting Baby J to so much pain, when he had already brought so much happiness to those of us anxiously anticipating his birth. At the same time, they could not bear the thought of letting him go. For days on end, with little sleep, they sought advice from medical specialists and poured over the latest online research. We were helpless in the face of their palpable anguish.
Within a week, Baby J decided his own future. His heart stopped beating and he quietly slipped away, leaving behind dreams of what might have been, and requiring that we find the strength to carry on.
“You never know how strong you are until being strong is the only choice you have.” Bob Marley