Spreading the word

I’ve spent all week sorting through what I want to say about last week’s Congenital Heart Defect (CHD) Symposium in Durham; it has taken me this long to try to come up with words that don’t sound so corny that my readers throw up their hands in exasperation. I’m not sure that I have been successful, but here it is.

I have never been to the hospital at Duke, they they have a very reputable Adult Congenital Heart Defect Clinic and I have always kept them in the back of my mind as an alternate in case I needed a specialized Cardiologist and my team at Emory wasn’t available. Their facilities are very impressive; if you were to pick your hospital based on appearance alone Duke would be a contender. Very clean and wee kept, and modern facilities. I smiled when I got onto the elevator and saw one floor marked as the Jim Valvano Day Hospital. Duke and N.C. State fought some wars on the basketball court; and you know that even though they won most of their contests, the Duke faithful were glad to see Valvano and his team load the bus and drive away. Now they can’t get rid of him.

The sessions were interesting and informative – even the session that I didn’t quite “get” for Funky Heart readers. Perhaps it was late in the day, or perhaps it was that I was looking for any signs of abnormal brain development in myself. I’ve always been a bit forgetful, one of those people who needs to write something down if they expect to remember it. I’ve always been that way, for as long as I can remember – and with a pulse oxygenation level of 80%, I just have to wonder.

But on to the important part: I had a strong feeling that I would be speaking mainly to Heart Parents, and used that group as my target audience as I wrote my presentation. I was correct; the attendees were mainly heart parents, and the oldest child I saw was about 7, I believe. And the parents were all young – my age and almost certainly younger. (There was one older couple, who I assumed to be Grandmother/Grandfather) It struck me that I could very well be the first adult with a heart Defect that these people had ever met – in a way, I represented what they hoped for and dreamed about for their children.

I got emotional several times as I spoke, but had promised myself not to break down completely. Not because Heart Defects can’t be an emotional subject, nor did I think some of the audience would think I was fishing for sympathy. I was supposed to be there speaking as a CHD Survivor, I could stay home and have a good cry! I wanted to use the limited time I had wisely. But I was able to get the audience to laugh, also, and humor is supposed to cure a lot of ills.

We broke for lunch after my session, and many of the parents thanked me profusely for coming. They were glad I had spoken, and I seemed to have encouraged them.

And it encouraged me, too. I felt like I was walking on air, just glad to be there and happy to contribute in some little way. I think that standing up helped me see another side of myself, and it helped me just as much as it helped those parents in attendance.

This is something we Heart Warriors need to be doing a lot more of – encouraging the parents of young Cardiac Kids. This is something I personally need to be doing a lot more of. So I am activity looking for more opportunities to speak.  I’m still here, and although I have my fair share of the little bumps and bruises that life dishes out, I’m enjoying my life. Maybe I can say something that would show you how to help your Cardiac Kid thrive, too.

Have heart, will travel;

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8 Responses to “Spreading the word”

  1. Tina Says:

    Thank you! I wish I could have traveled to the event. I think you are an inspiration to us heart moms. My son is 14 and I feel like awareness has grown so much since his diagnosis. I do appreciate your perspective.

  2. Kara Booth Says:

    You did a wonderful job speaking. Your emotion is what moved us all. There wasn’t a dry eye in the room, not only because of your tears but in great part to what you were saying. My son is 21 months old and doesn’t yet realize that his heart is different..that he is different. It was as if you were speaking for him and giving us, the parents, an idea of what his life outside of the medical stuff will be like. To see you up there speaking so passionately and humorously about your life definitely gave us all hope and a sense of comfort that our children will not only be okay medically but also in normal aspects of life. You have a wonderful perspective on surviving in this world and your insight into what it is like to be a parent to someone like you is profound. I hope you can continue to share your story, perspectives, insight and knowledge because you impact someone new everytime you do. Thank you!

  3. carolyn compton Says:

    I can feel something big is going to happen…..

  4. Madhuri Says:

    Hi Steve,

    After going through your article, i felt very happy and i could see my emotions rise in the positive way. Your words, I felt, are not only for those who are going through the same problem, but the attitude can be taken by any one. Wishing you all the best and thank you so much.


  5. Linda D. Says:

    When I went to my first CHD parent support group meeting a year ago, it was their annual pool party. Among the attendees was a guy in his early 70’s, I think. He had ToF! He didn’t have his corrective surgery until he was 22 and bypass was available. He became an MD and did emergency medicine. He’d had his most recent OHS within the last 5 years or less. Meeting him gave me a lot of hope for my daughter’s future, since she has the same defect. As has Shaun White, the Olympic snowboarder (AKA The Flying Tomato). (Did you know he has ToF & had 2 OHS’s in his first year?)Those two have made me realize that a lot is possible with CHD’s. And your blog also makes me realize, as a heart mom, that more is possible than I originally thought. Thanks, Steve, for what you do to raise awareness.

  6. Deepti Says:

    I feel the same way when I go for my check-ups. I’m usually shunted to the Paediatric wing because the specialists are all there, and my cardiologists classify CHD surgery under paediatric surgery. Up until I was around 15, I was “one of the kids”. Over the past 6 or 7 years, however, I’ve been noticing that other patients’ parents mistake my mother (who has always escorted me to the hospital) to be the one going in for the check-up! Then we have to laugh and explain that it’s me, and that I was born with a defect just like their babies. The other parents then look at me with such wide eyed amazement and hope that I suddenly am made to realise what a huge responsibility I carry with me, being the oldest CHD survivor in the room.

    It truly is a burden, but a special one at that. If I can be a symbol of hope to some poor mother who’s just been blind-sided with the truth of her child’s defect, then I am happy. 🙂

  7. Eileen Pritchard Says:

    My daughter Daisy has a CHD, and there is already a positive family history, my aunt and uncle on maternal side both died in childhood from CHD’s.My 19 year old daughter has also now been diagnosed just last week.I have 3 other children, 11,17,21 that have yet to be checked.I am struggling to get referals for them but wont give up.

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