When it is time

Thank you for both your prayers and your patience as I was away. A few of you know this already, but here is what has happened: My 95 year old grandmother fell and hit her head. She has bleeding in the brain and is comatose, and it is bad enough that after talking with my father and my aunt the doctors have removed the life support equipment. Yet she is still with us – working 40 years in a South Carolina cotton mill will harden you up, and she’s always had a stubborn streak. She is not going gently into that good night! Someone is with her, of course, but everyone else is trying to have a normal life – as normal as you can be under these circumstances – until something happens.

When you have a Heart Defect, you come to grips with your own mortality a lot sooner than your friends do. A lot of young people see themselves as “ten feet tall and bulletproof,” but we usually don’t. We’ve seen the inside of too many hospitals and doctor’s offices, and we know better.

I’ve pretty much accepted the fact that when my turn comes, my heart will probably be what kills me. It’s been going a lot longer than anyone ever thought it would, and I have had some close calls over the years. When I finally do shuffle off this mortal coil, I’d like as many Heart Warriors as can make it to come to my funeral. (There might not be many of you there; remember, I live “back in the woods”!)  I’d especially appreciate it if any ACHA members would speak – and don’t talk about me, but rather talk about yourselves, and our shared experiences, and the good things we’re trying to do: The Congenital Heart Futures Act, raising awareness, Lobby Day, running the Bolder Boulder, helping CHDers live longer, fuller lives, and the friendships that are forged whenever we get together. Because I love this group of people and what they stand for. They may not know it, but these people – all who fight the same fight that I do – are my heroes.

One day, my heart will kill me… but I’ve promised myself that it won’t happen today. And tomorrow, I’ll make that same promise. As long as I keep my word, I can live forever!

42 years, 11 months, and 27 days past my expiration date;


4 Responses to “When it is time”

  1. Cindy Says:

    Are you turning 43 soon??? Your column is such an inspiration – thanks for all you do! I never thought of my son’s heart this way…I’m sure he will someday. 95…my thoughts and prayers are with you and your family. It doesn’t matter what the age – it is unexpected and un-welcomed!

  2. katie Says:

    I appreciate where you’re coming from and how real you are. As much as I love a good deathversation, it’s never been my genre. I’d prefer to see you with a pulse. Just an FYI.

    Keep at it.

    I’m sorry about your grandma. I’m wishing good things and a positive outcome, I just am.

  3. Amy Says:

    Steve – thank you. You seem to voice all the same concerns/opinions and facts that we all face and fear. Thank you, thank you, thank you!

    I am also celebrating my birthday on Sunday – 9/6. My shelf life will be extended to 27 years on that day. I’ll be thinking of you and sending good wishes your way, like always!!!


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