My six year old son was born with multiple heart defects, one of which is very rare. It is called Cor Triatrium Dexter and has to do with the trabeculated anterior, sinoatrial orifice, crista terminalis, and the super-cali-fragil-istic-expi-ali-docious.
Basically, the right side of his heart is jacked up.
For the first year of his life, he was cyanotic a lot. For people who are fortunate enough not to understand that term…it means that he was blue. He often had discolored skin around his mouth, which was a constant reminder that his blood didn’t have enough oxygen in it.
When he was 13 months old, he had angioplasty and valvuloplasty. This wasn’t because he was eating too much butter and bacon, but rather because this one weird defect had created a blockage, and that’s why he looked like Violet Beauregarde from Willy Wonka and the Chocolate Factory.
The benefit of the surgery was that he suddenly had energy he never had before. The downside is, that in stretching out the valve the cardiologist created a leak. Not because he messed up, but because that is what happens when you expand a valve.
And that means in the near future my kid will need open heart surgery.
One good thing? Well, he’s always been too young to understand just how messed up his ticker really is. He knows there is something different about him…and how could he not? He may as well have a stethoscope permanently affixed to his chest. But, we never talk to him about having any limitations.
The other night, we saw that he has grasped what we’ve been telling him all along. Because when my daughter was upset and crying hard (Note to Dad: Let’s not tell the nine year old that someday her dog will die), my son walked over to his sister and said, “It’s okay. Don’t cry. I love you. I love you with all of my special heart.”
And if that doesn’t warm your cockles, I don’t know what will.