Fractured Fairy Tale . . . “Shit or Get off the Pot,” or “He Said Thanks”
Remember how Rocky & Bullwinkle had two working titles for some of the sequences? I guess the writer couldn’t make up his mind. Today provided that kind of ambivalent space. First the horrendous Holter monitor showed up. It’s at least the 14th we’ve done since Liam was six years old, and it’s the third in five months. At least we got hypoallergenic pads this time. I hate that thing. Jim hates that thing. Liam hates that thing. Moira hates that thing. We all have universal hate for the Holter which is essentially a leash because it falls out of Liam’s pockets or off his small pants far too easily to allow us to do much of anything or go anywhere. It makes Moira feel marginalized and it makes Liam feel burdened. It makes Jim and I anxious. It is an unwelcome guest in our home tonight.
We ranted, we raved, we flailed about pacing in annoyance that we have to do this again, already. We discussed the dangerous borderline between asymptomatic (how Liam has been classified because he acts normal and doesn’t complain despite dubious activity on his Holter results) and suddenly symptomatic when a CHD kids fall from a rope in gym class, wrecks a bike, or rolls face down in a swimming pool when they faint.
Fainting is the number one symptom that will trigger an immediate intervention. . . we’re kind of sort of waiting for our son to faint and hoping a) he’ll land in a soft place and b) he’ll come around afterward. Now I’m feeling faint. The cardiologist keeps telling us not to worry in the same conversation he starts by asking us if Liam has fainted and then telling us that if he faints he’ll be getting the pacemaker for sure. This feels like an increasingly dangerous game of pacemaker chicken.
We, Liam’s parents, are actually more upset about the Holter monitor than Liam is today. Liam’s actually happy because he got a new Skylander’s game delivered today too. We all prefer the game. After a day of graceless begrudging we came to the eventual concession that we will probably be less worried if Liam HAD the pacemaker, despite our fears of scar tissue (his sternum has been sawed open five times) and infection (we nearly lost him once). We have arrived at the “shit or get off the pot” attitude about these constant Holter monitors and the wait and see situation while our child is treated like a science experiment, and we just hope he doesn’t pass out someplace dangerous.
I finally stopped stalling, and stickered up Liam. We have this thing we do, I always let him choose which color lead he wants to place first, second, etc. It gives him some sense of control and ownership where there is so little of either. I am bothered by my proficiency and speed, skills that only come from far too much experience. After I finished wiping Liam down with alcohol and placing the leads with my cruelly cold hands against his bare skin, I activated the box and we began our count down.
Then I slipped the clip of the box on Liam’s jeans pocket, the same pocket where he carefully stows away the paper slips from fortune cookies for safe-keeping until he can get home to place his treasure box. These are the same pockets where he tucks random rocks for his “collection” so he can remember a happy moment on a family walk. Now, again, they are the pockets that hold a cold medical device that will record every single heart beat and those that he misses for the next 24 hours. As his mother I believe the fortunes and the rocks tell me more about my son’s heart, but I do my duty.
As I straightened up, I realized I hadn’t far to go; Liam will be bigger than me in a couple of years. We’ve had pacemaker in our mouths since he was three months old; he turns ten next month. This has been a long time in coming and I don’t know how much longer we can wait. I looked at him and said, “You’re all set.”
Then Liam said, “Thanks,” not in an offhanded attempt to get away or out of rote politeness, but he said it in a genuine way. He’s the one who has to wear this contraption that tugs and itches. He’s the one who will bear whatever pain the future yields, but Liam showed the most grace today as we creep ever closer to a new chapter in his life.
Beautifully written post about Liam’s (and your whole family’s) resilience. Loved your descriptions of what he puts in his pockets — you’re right, these details tell us so much about the kind of boy he is.