Just ask those who know!

Twitter has become a pretty cool way to communicate. If you don’t know anything about Twitter, it’s simple: From your computer, laptop, or even your mobile phone, say whatever you want to – in 140 characters or less. (in Twitter-talk this is known as “sending a tweet”.)

Twitter can literally let you participate in an event without being there, and the ability to use it from a mobile phone means that the sender isn’t tied to one spot. Recently the American College of Cardiology tweeted notes from their annual meeting, and so many cell phone owners use the service that the  attacks in Mumbai, India were tweeted as they happened.

With only 140 characters, you have to be concise. So the other day I asked, “Adults living with a Congenital Heart Defect: what advice would you give parents with CHD children?” … and sat back and waited.

Advice wasn’t long in coming. The main theme that most of the respondents mentioned was for parents to just relax: “Don’t dwell on the darkness,” one young lady wrote.

Let CHD children set their own limits. Don’t pamper or be too overprotective,” another adult chimed in. See why Twitter is so effective? You just get a straightforward answer to your question, without “elaboration”… otherwise known as BS!

“Your child will limit themselves; don’t be so overprotective,” the advice continues. “Don’t freak out!”

Educate yourself,” another Heart Warrior encourages. “Support groups are great, too!” “Share your story with other CHD families,” someone else adds. Great ideas – learn what you can about your child’s heart defect, so you can make educated decisions about their care. And tell others your story. No one knows you, but they need to know what kind of a fighter your kid is. And if enough people learn about us, we can start to win this battle that we’re all in.

And the last, best piece of advice? “Encourage them to transition care to an adult congenital cardiologist.” Because a lot of people are working hard to make sure your Cardiac Kid grows up to become a Heart Warrior.

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One Response to “Just ask those who know!”

  1. Jen L. Says:

    While I appreciate the advice, as far as the over-protective statements, I’d like to mention that this isn’t all kids.

    I was one of those “determined to let him set his own limits”. His cardiologist and I felt he could self-regulate – he’s bright, well-educated on his illness, and seemingly a responsible type kid.

    Then he came home one day after PE (where he was supposed to self-moderate) reporting that he was short of breathe and dizzy and nearly passed out. This was directly due to allowing him to self-regulate – his meds made him overweight, the kids went on a run, and a bunch of 11 year old boys teased him that he would just the weight (that he gained from the Beta Blockers) if he would just run faster, harder, longer. And so he did.

    It was officially our first cardiac episode after avoiding one for 8 years since the diagnosis – he is no longer allowed to self-regulate and now has a note from the cardiologist that he is not to be allowed to do anything other than very light exercise. He also was the recipient of his first grown up lecture on taking responsibility for himself and his disease from his cardiologist.

    I think as adults, perhaps you remember being able to limit yourselves, but I caution other parents of putting too much faith in young children, and ignoring that pull of peer pressure. Kids do deadly risky behavior all the time in the face of peer pressure – our kids and peer pressure working on our kids is, unfortunately, no different.

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