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.