Don’t just survive, THRIVE!

Live your life.

That’s probably the best three words of advice I can give you. You (or your child) has a Congenital Heart Defect. Certainly there will be times that care has to be taken, adjustments have to be made. With a bad heart, you must take care of yourself first. Don’t volunteer to be on the “tote and load crew” and don’t let anyone volunteer you for something that you aren’t capable of doing. Sometimes you have to use a little trickery; when I worked at the museum I’d always volunteer for a job “if someone will help me.” When I got tired, I’d say “Hey, you look a bit tired, let’s take a quick break so you can catch your breath!” (Sneaky, huh?)

You have a Heart Defect, but the defect does not have you. Never give up and never give in. Exercise will build your stamina and allow you to do more later. Don’t have an exercise program? Talk to your doctor. Personally, I walk. Start at 15 minutes a day and walk until you are used to walking that 15 minutes. The next day, walk 20 minutes. Increase your time every few days – you’ll feel pretty tough those first few days, but after a while, you’ll feel your extra stamina kicking in when you need it. (Don’t take medical advice from me, since I’m not a doctor. This is what works FOR ME. Ask your doctor’s advice!)

Get involved. Find a good Congenital Heart Defect support group and participate. Share your story – who cares if you stumble and stutter at first? The more times you tell it, the more comfortable you will be. Be there for others when they are going through a rough time. Stand duty in a hospital with a family that needs your support. Volunteer to stay while they get lunch or some much needed rest. Support one another in person and online.

Teach by example. Wear a CHD Survivor T-Shirt. Participate in fundraisers. Get a customized license plate like one of my blogger friends has: HRT MOM. My friend Rachel has it right: “I’m a heart warrior!” I LOVE THAT PHRASE! I think that from now on, I’ll refer to adults with a Congenital Heart Defect as Heart Warriors. We fight battles that you can’t even begin to imagine!

Encourage research. Write your Representative at all levels of government. Make sure CHD issues become a priority. And hope for the day when all Cardiac Kids, Heart Moms and Heart Dads, and Heart Warriors can say, “There will be no more like us.”

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3 Responses to “Don’t just survive, THRIVE!”

  1. Rachel Says:

    Ha, thanks for mentioning me in your post. Sorry I didn’t get back to you sooner. It’s been a crazy couple of weeks. The only reason I stay up to date on blogging (for the most part) is because I would rather direct my family and friends to a website, rather than reiterate my current medical status over, and over, and over. It’s tiring, and depressing.

    I hope you’re doing well.

    Rachel

  2. Rachel Says:

    Are you going to lobby in Washington in February? I’m about 75% sure I’ll be there. 🙂

  3. Steve Says:

    I plan to be there Lobby Day! Where are you coming from?

    If you are coming in by plane, catch a flight to Reagan National Airport – not Baltimore or Dulles. Reagan has a good, clean Metro system that connects at the airport. Take the Metro to McPherson Square and then it is a short cab ride to the hotel. As far as I know, both Baltimore and Dulles would be a LONG, expensive taxi ride!

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