Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

You never know how strong you are…


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



6 comments on “You never know how strong you are…

  1. Lynn Croll
    January 24, 2016

    You inspire us all. This was written so beautifully!!

  2. 100wickedwords
    January 24, 2016

    This post is heartbreaking. No baby would have been loved more.

  3. parkinsonsfb
    January 24, 2016

    Such terrible heartache and truth.
    Thank you for being so open and sharing your personal stories via your talent of writing. I enjoy reading your blogs very much!

  4. Angela Robb
    January 24, 2016

    Thank you for being so brave sharing another poignant story. Our hearts go out to you and your family.

  5. Barbara Davis
    January 25, 2016

    One thing we all share, besides PD, is true empathy and this group embraces you with that.

  6. PD Warrior
    January 26, 2016

    Thank you for sharing this. My thoughts and prayers go out to you and your family.

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This entry was posted on January 24, 2016 by in Cancer, Coping Strategies, Family Life.

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