Knowledge is Power

I’ve “met” so many incredible people over the years through the melanoma community. It’s a tight community, one based on support, compassion and education of melanoma. I’ve shed many tears as I’ve walked beside these friends through their journey with cancer.  Most of us share our stories in the hopes that perhaps one person might be touched and will be spared the heartache of a melanoma diagnosis or the loss of a loved one.

This is how I met Kay. 

Kay had been diagnosed with melanoma and we found each other through mutual Facebook groups. On April 15, 2013, Kay lost her son Will to an undiagnosed heart condition. He was only 23. So not only do we share a melanoma tie, we share the heart of a mother who has lost her child.

 As I was scrolling through Facebook this morning, I came across Kay’s latest post. Although my heart breaks at reading her words, I am also angry. I asked her if I could share it on my blog and she graciously agreed. This is how we are. We want to educate people. Read below: 

This is definitely true! My health has never been so poor as it has since losing Will. In just the last 12 months I have been hospitalized in Chicago at a specialty hospital for two weeks, in Plano TX for surgery for a week, and then for more invasive surgery for a week at that same TX hospital, had a stroke in my cardiologists office in memphis in June and was hospitalized, and interspersed between all of that I was diagnosed with POTS, which causes me to faint with no warning, even though I am on meds to attempt to prevent that. Usually I just bust my head on our tile floors, go to the ER for staples and go home. When it happened in July, I broke my wrist when I fainted. They decided that I needed another week’s admission to see what additional I might have, and in particular, check to see if I had anything pertaining to the heart disorder that caused Will’s death (already checked all this out previously at Mayo Hospital in Jacksonville, FK, but wanted to check again.). All that to say that I, along with many others, for sure understand the reality of the physical impact of child loss on the body.- Kay

We don’t realize the full impact of the words “broken heart” until child loss occurs. When we lose a child our heart really does break — there are actual physical changes that take place in our heart indicating permanent changes. A “broken heart” isn’t just an emotional phrase — it’s real, and it does happen to parents, siblings, grandparents of child loss. Our hearts hurt so badly, so deeply, so constantly that they eventually break. Yes, they can heal, but the scars and permanent, and the heart changes are permanent. Child loss changes us forever!!! Oh, how much we love and miss our child!” – Silent Grief, Child Loss Support

I’m wondering how it is we live in a world where grief is not readily accepted. How is it we are expected to keep going on as if the hole in our heart doesn’t exist. I really don’t get it. It makes me angry.

Our lives have changed in ways the naked eye can’t see. Maybe its partly our fault.We dread the look in your eye when we tell you we miss our Will, we miss our Jillian. We know it makes you uncomfortable so we keep quiet. But rest assured, those scars run deep and are constantly in an oozing state. Some go on to live with health issues, some self medicate, some take their lives. Seriously. It’s a pretty big deal.

The Holiday’s are coming up fast. These are extremely difficult times for us. Please don’t try and tell us to enjoy the dazzle. Just give us a hug and tell us you care.

Will

Peace~ Susan

5 thoughts on “Knowledge is Power

  1. So perfectly written, Susan! Thanks for taking the time to put this all into words, especially right here at the holidays. ❤️😥❤️

  2. Beautifully written Susan, my heart breaks for both if you daily. I can’t imgine that pain. I love you both and care about you so much. You both are so amazingly so strong woman. I am so bleesed to know both of you. Love and hugs.

    Love Penny Martin

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