Little Boy had a cardiology checkup today. My other kids were quite excited to go along, particularly because it was at the new hospital. Their dad was on the design team and helped make sure they built it with kids in mind. They had a blast jumping from one colorful gel floor-tile to the next on the way to the clinic. They loved riding the glass elevator up to the third floor. And they loved peering through the person-sized letters outside the floor-to-ceiling windows at the parking lot, looking for our very non-descript vehicle. I find their comfort with all things hospital simultaneously sad and encouraging. Children are so flexible. They can adapt to almost anything. Hospitals are part of our normal.

EKGs are not. Yet. During his “sticker test,” Little Boy spent most of his time trying to sit up and pull the leads off. The nurses tried to keep him occupied passing out EKG stickers to me and his siblings.

Here’s Big Boy’s creative use of one of them.

Oddly, he declared himself the “two-headed guy” and wore it the entire appointment… and all the way out to the car.

Hospital humor. You gotta love it. It may be weird, but some days it’s all you’ve got.

I needed the laugh today. The news wasn’t so hot, and that was a shock. I don’t like surprises at the hospital.

Little Boy is apparently going to need some help growing up. We thought we were out of the woods with him, but parts of his heart aren’t growing as fast as others. So they’re going to have to go in (fortunately with a catheter, not a scalpel) and help those smaller parts along.

Everyone’s goal is to postpone his next (and hopefully last, but I’m not counting on it at this point) open-heart surgery for a long time. As in decades.

I told the doctor that we need to postpone that surgery long enough for them to perfect a non-open-heart option. Like little robots that swim around inside your veins and plop things into place and fix weak spots and drill through blockages. His doctor burst out laughing, particularly when I declared, “We’ve got some big plans for you!” I got the distinct impression that little swimming repair-bots are a long long LONG ways off.

I’m waffling between discouragement, optimism, cynicism, and hope. It isn’t that bad, in the scheme of things. But it isn’t as good as we thought. And I can’t get away from the memories of Elli’s course, even though the doctor very deliberately stated, “This is not like Elli. This is a completely different situation.”

I think I’ll go back to school and study micro-bio-robotics. But for now, I leave with you with Little Boy, who tonight summoned me with these words: “Mommy, see my frosting beard.”


Thanks, Buddy. I needed that!