Friday, October 5, 2012

Inspiring words

This was shared on a facebook group by an adult living a full live with Tetralogy of Fallot. Marilyn is 67 years old, and had her tetralogy repair at age 24. She is an inspiration to many of us, both parents of children living with congenital heart defects and also younger patients living with heart defects. I love her description, and am honored that she gave me permission to share it on this blog:

CHD And a Roller Coaster
Have you ever tried explaining what it’s like living with a Congenital Heart Defect (CHD)? It’s like explaining a roller coaster ride to someone who has never ridden one. It’s impossible because everyone’s experience is different. Living with CHD is like riding a roller coaster. Besides going up and down hills and around a curve or two, it comes with a mix of emotions and unique feelings that aren't the same for everyone. Some people describe a roller coaster ride with words like “suspense,” “fright,” and “excitement.” For me, the CHD roller coaster also includes expressions like “unknowns,” “apprehensiveness,” “challenge,” “joy,” and “hope.”
What these descriptive words mean to me on my CHD ride:

Suspense - what kind of a report am I going to get from my adult congenital heart doctor, whom I see on a regular basis?
Fright – not knowing how the test is going to be administered
Excitement - When my doctor tells me I'm good to go for another year

Unknowns- I had a lot of unknowns during the first 24 fours years of my life. Although medical technology wasn't available, my parents took me to the doctor in hopes of a 'fix.' They always heard “There’s nothing we can do. She might live to be a teenager.”

Apprehensive - being told I need another surgery or invasive test

Challenges - keeping active and eating healthy. This has been a focus of mine for over 30 years.

Joy - marriage, birth of a child, a career, finding others with CHD, advocating, volunteering

I’ve been riding the CHD roller coaster for over 66 years. I'm thankful to have lived and witnessed the miracles of medical technology, from hearing, “no heart surgery available and there is nothing we can do,” to hearing, “we can fix your valve now via catheter.” Now that is progress!

I leave you with one last important expression from my CHD roller coaster ride:

Hope - Never Give Up!!
  Never give up! Great words to live by!


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