Retraining my brain?

I just read an incredible blog post. Incredible in the sense that in 783 words, it opened to me a perspective I had never once considered (and I have to admit I do a lot of considering when it comes to Luke's heart).

Amy Verstappen is the President and CEO of the Adult Congenital Heart Association and a heart warrior herself. She writes, "The joke in my family is that I never met a bureau I did not want to move. Although none of us have an athletic bone in our bodies, of my five sisters I am by far the most physically active."

She goes on to say that she was lucky to have both parents and a pediatric cardiologist that never let her in on a secret: Her heart beat too slow in relation to her activity, a condition known as "chronotropic insufficiency". So she would run, jump, twirl and sweat until she felt like she would faint or throw up, all the while, her heart rate never exceeded 90 beats per minute. What she thought was "normal" was actually a side effect of her overworked heart.

As Amy entered into adulthood, she wrestled with the question, "Do I wish I had been told sooner?" As with many questions, the answer was yes and no. But ultimately, she is thankful she didn't know she had limitations, especially as a child and young teen. "If someone had told me early on that I had 'abnormal exercise response,' and that I 'couldn't' run due to my heart rate, I never would have tried."

And today, she baffles cardiologists. Put her on a treadmill for an exercise test, and her results are within the normal limits. Very few complex CHD patients can say this.

Is it possible that these kids with broken hearts experience exercise intolerance because they believe they are exercise intolerant? Could it be that pushing a broken heart actually makes it stronger? Amy would argue yes: "My stamina today may be a direct legacy of a childhood spent pushing to my limit."

I write this knowing full well this is a fine line to walk, and one of those difficult positions parents of heart kids find themselves in.

Luke's pediatric cardiologist has time and again told us to let Luke limit himself, that kids like him under 6 or 7 will really truly self-limit. And time and again we've seen Luke do this. But still, I catch myself (time and again!) wanting to limit him. I'll want to offer him a piggyback instead of making him walk, or I'll want to interrupt his activity to offer him water. I think these are okay in themselves, but what it boils down to is that I don't fully trust Luke to listen to his body. I worry about him when he plays hard and is out of breath and my natural instinct is to take control of his activity level.

Roger and I were faced with our first sports-related decision this summer. Luke was invited to play on a 4- and 5-year old basketball team this fall, coached by the dad of Luke's best friend, Marcus. My honest reaction was not to let him. I didn't want to see him struggle, or not be able to keep up with the other kids. My reaction, honestly, was about me. My husband's viewpoint, thankfully, was more Luke-centered. He reminded me that Luke is currently under no activity restrictions and this may not always be the case. We both value the lessons team sports can teach, and this may be the best time for Luke to participate, when sports aren't so competitive and aerobically strenuous (I mean, how much running and jumping are 4- and 5-year olds really going to do on the basketball court?!)

So we are going to go for it. Coach David is one of our best friends and we trust him implicitly to pay attention to Luke. Our goals for him this "season" are not for him to be the top scorer or the fastest down the court. Our goals are simply this: For Luke to be a coachable kid, to have a blast with his team and to capture some awesome video to post on the blog ;-) As Luke is learning about dribbling and passing, I will learn more about trusting my son to know what his body needs.

And Amy? Armed with a pacemaker, she is as active as ever, thankful her family let her set her own limits. This is a gift I want to give my son, as well.

Go, baby, go!