Every Damn Day

The other night over dinner a girl friend and I listened while our friend, Sarah, recounted a scary medical thing that had happened with her young daughter earlier that day. Both her daughters, now 9 and 7 years old, did this thing when they were toddlers where any time they were crying, like really wailing, they would let out an initial sob, take a gasping deep breath and then right when the second sob was about to surface, they would pass out. It was usually quick and sometimes barely noticeable, seeming more like they just couldn’t get the cry out. But it was scary. Sarah had checked in with their pediatrician about it and he had explained something about how there is an under developed nerve in kids that runs down their throat and, rarely, but not never, that nerve will more or less fritz out when a toddler is having a hysterical cry. The toddler will loose consciousness, only for a moment, and then come to. Sarah explained that her and her husband had come to expect this weird detail of her kids’ meltdowns, but even still, many years since the last episode, she always listens closely for the second cry.

So the other day when she was in the basement and her daughter, running at full speed, tripped and full-body splat onto the wooden staircase Sarah listened for the second cry as she made her way to her. Though it has been many years since the passing out has stopped, the process is in her bones. Child cries, Sarah pauses and waits, child cries again, Sarah exhales. So this time when Sarah listened for the second cry and heard nothing, she was worried. By the time Sarah got to her, she had indeed passed out. Sarah felt familiarity in this bizarre turn of events. That is, until her daughter opened her eyes and started shaking.

Sarah panicked. This wasn’t like the other times. She yelled for her husband to come quickly, as her daughter continued to shake and writhe on the floor.

“Call 9-1-1!” She yelled to her husband.

This wasn’t like the other times, this was worse, what was happening? In moments that felt like hours, her daughter stopped shaking and lay very still. Sarah and her husband stared at her and started to ping-pong back and forth the decision to call the authorities. Just then, her daughter opened her eyes, and started crying. A good, solid ‘I just tripped and threw my body weight at full-speed into the wooden stairs’ cry. Sarah and her husband looked at each other, “So, I guess we don’t call….” they agreed reluctantly.

Within 5 minutes, her daughter was recovered from the incident as well as any child would be from a big fall. A little slower, tear stains down her face, but running back up the same stairs had started this whole thing to retrieve the item that she needed.

As Sarah retold the story to us she explained that the weirdest part was that it was over before it started. It had felt for a moment like it was going to be this huge thing, and then it was…nothing.

“So, I walked back down stairs and joined my [work] call,” she explained with a small laugh, realizing the insanity of it all only now that she was retelling the tale out loud.

“What did you say on the call, like ‘Hi, um my daughter just seized and we almost called 9-1-1-!!” I inquired.

“No, I didn’t say anything, I just said, ‘Hi.’ They said, ‘How are you today?’ I said, ‘Fine.’ and we started,” she explained, bewildering even herself that she had compartmentalized so effectively.

Our friends sat around massaging out all the details like a dough that required kneading. Sarah explained the intricacies: where she had been standing, which room her husband had been in, where her other daughter was during it all. Had her husband dialed 9-1-1? Had they called back when he hung up? Was her daughter going to be ok, like really though?

“I was actually surprisingly calm during all of it,” Sarah remarked, “Like I felt very, very tired after, but I was calm. Calm and like, ‘well, I hope this ends up ok…”

We casually tossed back and forth how crazy it is to parent between sips of our cocktails, but the way we asked our questions exposed our knowing. Our knowing that every day as a parent is a miracle in grace under fire.

“You know what I kept thinking?” Sarah sipped her Chardonnay, “Like I realized how much adrenaline was in my body from it all. Trying to sit at my desk and have a normal conversation with my body just full of fear. I just kept thinking, ‘Oh my gosh, this is what Betsy’s life is like… like every day.”

It was a reflection I hadn’t seen coming.

“Every damn day,” I laughed genuinely and raised my glass.

Today I woke-up before the sun to the horsey bark of Beaudin coughing. We don’t have time for this cough, and actually we haven’t had time for it for the last 3 weeks that it’s been here. It’s dry and uneventful, but it’s there. It’s raspy and crisp in his throat, not constant, but daily. Just often enough that when the anesthesia team from CHOP called to confirm his appointment for next week I answer the screening questions I’ve answered a gazillion time before and realized we may actually have a problem.

I’d been expecting his IgG dose from last week to clear things up. Normally the dose will clear out any residue of a cold he is still holding on to. But here we are, a week after the dose and a few days before Philly and it lingers. I walk downstairs in the dark to make him some tea. As the water boils I stare into the dimly lit kitchen and watch my thoughts spiral:

“It’s not too bad, but it’s getting better, but really I thought it’d be even better after IgG but that was over a week ago and usually if the IgG is going to help it will help in 1-2 days, maybe he needs more? Can I give it to him on day 10 instead of day 14. We have 3 days until our flight, and so yeah, I think we are ok, but we did go that time in February and couldn’t do the procedures bc of his “minor cough” and so damn it…it’s definitely not as bad as February, but it’s there and I’m not going all the way there on a ‘maybe’, but the foundation already paid for the flight and the return leg is non-refundable bc it’s United. Why doesn’t SW have better flight times? I should have gotten that AA credit card when this all started. They have the best flight times. But maybe this is the end and so what’s the point of changing now. But I say that every time. Every time I see that damn TSA pre-check logo. Why didn’t I just get the pre-check 2 years ago when the 15 flights to Philly were ahead of us and not behind. We can’t cancel the hotel, can we? Would the study still pay for the hotel if we didn’t go? They paid the last time a cold got in the way, but that time we went. This time, I wouldn’t go, that was embarrassing, I’m not doing it again. If he has a cough, I am not going. But then the foundation has wasted it’s money on the flights, the hotel is non-refundable. What, we go the next week? Flights are $700 each. The flight times are terrible. Why don’t I have the damn pre-check. I also still haven’t gotten a carry-on I like. I need to Google that back pack Marissa recomended. No I need to go to REI and try it. I don’t have time for that. Maybe this is over. Or fuck maybe it’s just beginning. If the results are bad though, it’s transplant and transplant is in Denver. So I won’t need a carry-on, or pre-check. But I’ll need other things. What will I need if it’s transplant. A lobotomy..that’s not funny, but it’s true. What if it’s over? What if scans are clear and school starts and he wears his new backpack and leaves every day for 8 hours of normal kid shit. What if it’s over and I go to REI and spend all fucking day trying on backpacks to take as a carry-on that I won’t need bc I am never traveling again ever? I hope this cough clears. Or maybe it’ll never clear and we can just keep pushing off Philly. I never want to go back. I never want to see that city again, ever, ever fucking again. I need pre-check, and a carry- on.”

The kettle starts to whistle and I am brought back to the kitchen. I pour the tea and watch the shadows of the leaves swirl around the ‘Yoda Best’ mug Beaudin gave me for Christmas.

“Every damn day,” I laugh with resigned cynicism and raise the mug in toast to my inner voice.


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