12/4/2013 12:10 PM
By Kim Edgren
About eight years ago, my friend Joan and I were both going through some medical challenges. We started to joke with our spouses that we were the “sun” because for that time it seemed like everything revolved around us.
Today, Joan and I joke that we wish we could be the sun every now and again, just without the medical drama. Having any health issue, especially those that are life-threatening, can make it feel as if everything revolves around the current crisis. And with chronic conditions such as CHD, sometime it does feel like we are like the sun—the only one in the sky.
Last month I had the honor of attending ACHA’s Ambassador Training in Austin, TX. Heart to Heart (H2H) is a great program providing support to many in our community and it is made up of a team of ACHA folks and volunteers.
For two days I was surrounded by this group of wonderful people. The majority of these folks are like me—people with full lives who also have a CHD. We had some wonderful guidance on our roles as ambassadors, gained insight and understanding of ACHA’s important mission and initiatives, and learned some fascinating information on many different areas of CHD and how we can support our peers. The ACHA staff in attendance are truly remarkable individuals whose dedication and passion was the driving force for the weekend.
But in the spirit of the H2H program, what was most inspiring were the Ambassadors themselves—so much perseverance, yes, but so much... normal. It was grounding to be one of many, not the only “girl with the heart thing.” We were all affected somehow by CHD, but living our normal, ordinary lives. Here we all were, taking a break from our lives and coming together, not just as survivors or loved ones, but as individuals who bring the experience of our individual lives to work hard for our community. Because of and in spite of that one common thread, we also brought so much more that makes us who we are.
Some days it is nice to be the sun (especially when it gets us a dinner at our favorite restaurant—right, Joan?). But, boy, was it nice to be one of many stars, if just for two days.
Kim Edgren was born in 1966 with transposition of the great arteries, pulmonary stenosis and ventricular septal defect. She recently became the proud owner of a Melody valve! When she is not trying her hand at writing she is busy spending time with her partner and three girls, managing her two child care centers and planning her next vacation.
Copyright ©2013 ACHA
1 comment(s) so far...
By Connie on
12/5/2013 9:57 PM
Re: Being a Sun vs. Being a Star
Nice to hear from "The Sunshine Girl."
I have the very same defects as you. My first PVR was with a homograft (human) valve. It lasted nicely for 5 years, 'til I started getting worse.
Now I have an artificial pulmonary and an aortic valve. They're both mechanical, Medtronic and St. Jude. I also have an ICD and an lvad (heart pump.) I am a bionic "queen".
The doctors are phenomenal, and they saved my life.
Welcome to the Ambassador program. I'm sure you will be good at counseling.