I Wanna Change My Clothes, My Hair, My Face

The main purpose of my last quick trip to Atlanta was to support my sister as her kids underwent their first baseline cardiac screening. Since my BIL’s death in late March, we’ve learned he died due to complications of a rare genetic cardiac arrhythmia called ARVC. You know those news stories about athletes suddenly dropping dead during practice? Yeah, that.

We researched and found the gold standard ARVC clinic at Johns Hopkins which then referred us to a satellite pediatric clinic in Atlanta. After weeks of prep work by my sister and the genetics counselor, the kids were tested on the same day, same time, different rooms. We each took a kid and stayed with them during the various tests they had to have, after all they’ve already endured goddammit, and we comforted them, we hoped. Witnessed.

We met with the cardiologist at the end of the day and both kids tested perfectly normal, no restrictions. Relief all around. We’re still waiting for the genetics testing to come back. Those results will dictate the ongoing screening schedule.

The most important thing about ARVC is if you know you have it, you don’t die. But you have to know. So we’re going to know. Or we’re going to act as if we know. The kids will be followed carefully.

When the appointment was over, my sister and I didn’t know exactly what to do. We hugged her kids and each other, and we looked at each other as if to say, ok, that’s done, check. Now what? So we went to the mall and then to the diner for a cheeseburger.

Breathe in. Breathe out.

On another note, while we were all together in the intake room, before the physical exams, my sister busy answering the nurse’s many questions, there was an awkward, long pause at one point followed by the nurse asking me if I was my sister’s mother. Her Mother! What in the actual fuck? Even if it was an innocently misplaced guess based on the situation, who says that out loud? Unless it’s CLEAR. Apparently she did say it out loud, and apparently it was clear to her. If my sister hadn’t been there, I might have thought I was having an intrusive, stress-induced, self-loathing thought because, well, you know. But, no, we both heard it. We shook our heads no, no, NOPE, I’m her older sister by 9 years, NOT her mother. Jesus, lady, way to go. Shank me in the neck when I’m already down.

That sucked. But come on, get over it because it’s not anywhere near as bad as having your father suddenly drop dead and then finding out you might have inherited his undiagnosed cardiac disease. Or being the mother of those kids worrying herself sick, their whole world on her shoulders. So I let that shit go. Temporarily.

I left my sister and her kids in a better place, with information that freed them up a little bit, at least emotionally. They needed it desperately.

I flew home and promptly got as sick as a dog with some kind of upper respiratory virus, flu, I don’t know, and with a little stomach thing on the side, because I don’t do anything half-assed. It was awful. Nothing like being sick in bed for a few days when you’re already depressed to make you feel OLD. Old enough to be the mother of a 45 year old.

You know what I did on my first day back among allllllllll the people? I soaked in the tub and colored my hair for the first time in a year. Because I felt like it. Preference by L’Oréal, medium golden brown-5G.

It was SOMETHING I could DO.

It helped.


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