Staying true to not writing about Liam’s personal life, I’m going to do my best to share only my feelings. Sufficed to say, Liam has never, ever liked Holter monitors, a documented historical fact, and it’s not gotten any better. The Holter monitor came back yesterday, it’s like a boomerang.

For those not in the know, a Holter monitor is a smallish box that connects to five leads that are attached to the skin over the ribs and sternum, and Liam happens to be allergic to the adhesive in most of the leads on the market which causes blisters under the pads that rip off with the pads, bleed, scab over, etc. The reason he has had so many is that he has a long and complicated history of rhythm issues. Let’s just say that as we endure the 21st or 23rd . . . certainly more than 20 . . . Holter in our house in the past seven years it’s gotten old.

Just now, from the corner of my eye, I saw Liam watching over Moira’s shoulder as she used the computer. He looked like he was holding an old Sony Walkman with a cord coming off it, just standing there holding an electronic device like any eleven year old boy. Then it hit me, again, that he’s wearing leads on his skin on top of 21 chest tube scars, and at the top of his sternum where his skin has been cut through with a scalpel six times. He’s holding a device that’s measuring his most vital sign of life because it came unclipped from his waist band. Why can’t it be a Walkman?

So back to me, because I don’t want to expose him any more than necessary. Our lives have been so stable and ordinary, for the most part, since Liam started kindergarten almost seven years ago. Yes, we’ve had a couple of trips to the ER and the whole pace-maker dance, routine appointments, curious blood work, the Philadelphia clinic visit, thousands of dollars worth of Holter monitors, etc. But no caths, no surgeries, no overnight hospitalizations since the week before he started elementary school. The Holter, with its wires and log sheet, just remind me of things I’d rather forget.

I always wondered how some heart parents could pretend like everything was in the past when we all know heart defects, especially palliated ones, are never fully “cured,” just treated. Then one day, we started living instead of surviving, and it really is easy to forget.  It’s also very painful to remember, a bit like whiplash.

We’re sixty minutes away from getting rid of this Holter and six days away from a biannual cardiology appointment. These are the moments anxiety and what-ifs typically seep into my subconscious mind and start keeping me up at night. These are the moments when I remember surviving and forget how much living we have done, and that is sad.

Liam “graduated” from elementary school last week. Jim and I got front and center seats, and we both cried big rolling tears.  Just days before our son started elementary school a nurse had thrown all of her weight on top of a sand bag that she was pressing against Liam’s femoral artery to keep him from bleeding out after a cath, where he had angioplasty and a stent placed after more than seven hours under general anesthesia. Then, he started school like nothing happened. Yes he had big IV bruises and was on blood thinners, but otherwise he was no different from the other five-year-olds in his classroom. He was so excited to start school and wanted us out of his school so it could be his place in the world. I watched other parents crying when their kids started kindergarten, but I was numb from the week before. Now, he’s a middle schooler – just like that.

Last Friday I was no longer numb. I felt the full weight of how very far we’d come, and the enormity of gratitude that I carry through my life. As emotional as I was, it was a blissful kind of contentment, the exact opposite of numbness. Then, yesterday the Holter came, and tomorrow it will leave, and we will ride the waves of this life, feel the panic of free fall, and find our balance again, and again, and again. This is what it means to live, and it is a beautiful thing.