“People always told me be careful of what you do…” – Billie Jean (1982) Michael Jackson
Here’s a post by blogger Doctor D about growing up as a Sick Kid. Here he is writing about children living with Diabetes, so what are parents of Cardiac Kids who just hit the teenage years supposed to do? Give them room? Lock them in their rooms? Who knows? I can promise you one thing, life will not be “normal”… after all, what is “normal” to a teenager going through puberty?
Oh, goodness what a time. The hormones are fully in control and you just don’t want to hear a word your parents say. Whatever they want, you try to do the opposite, and you feel just like the title of this post: Ten Feet Tall and Bulletproof. Throw a Heart Defect into the equation and things could get crazy. Sick Kid? Naw, that ain’t me! I’m just like my friends, I can go where I wanna go and do what I wanna do, and never feel “sick” at all! Medication? Who needs medication? If I miss a dose that’s OK, because I don’t feel any different.
There’s a problem brewing right there. A lot of times, you don’t feel any different when your heart is causing trouble. A worsening heart can steal your energy and your stamina, but not all at once. It does it so slowly that it is hardly noticeable… and then suddenly, you realize that you can’t do what you used to do and your energy level is way down. Here’s a newsflash for our teenage CHDers: You were born with this problem and you will have it every day you live. So you’ve got to pay attention to your health… every day you live. You are right, it isn’t fair. But rather than whine and cry about it and let your Heart Defect win, why not learn how to fight it?
The teenage years are just the time when they don’t want to follow your advice, so you got to get ‘em when they are kids, not teens. When they are teens, you are THE PARENT and your opinion carries very little weight. When you and your teen have a conflict concerning their illness, it might pay to follow Doctor D’s advice and have a neutral party step in. So you gotta catch ‘em when they are young.
And this leads to an incredible balancing act: exactly how much do you tell a CHD child about their heart? First things first, you don’t want to scare them, but you do want to help them know that taking care of themselves is so very important. Cardiology appointments and checkups and doing all the “little things” right will help them live longer and better. But you don’t want to drop that knowledge on them all at once, or when they are too young, because they will almost certainly start looking at the other side of the coin. It’s an uncanny ability that kids seem to have. And you certainly don’t want to hang the “I’m different!” thoughts on the child – we want him or her to fit in, to be a well-balanced kid who grows into a great member of society. If you approach every new situation with an “I can’t” attitude you’re going to miss out on some wonderful life events. And we don’t want that to happen, either.
It’s almost like a valve: you have to decide how much information they can handle and open up the information faucet just enough. Not too much, and not too little. In a few years when they are older and understand more, you can open the faucet just a little bit more. And hopefully, by the time they reach the rebellious years, they understand enough to know that their health is not the place to issue a challenge to parental authority. They can make you scream, run in circles, and even pull your hair out, but those medications are not to be missed and you see your doctor when you need to. Because you have taught them how important it is.
I do not envy Heart Parents with children on the brink of puberty. Those folks deserve a medal!