Particles

“I have chicken breasts marinating in the fridge and I’d hate for them to go to waste.” It’s funny how during disaster the brain starts to focus on the most mundane things. The big picture breaks down into tiny particles you hang onto in hopes of keeping your sanity, crumbling into even smaller pieces in the palm of your hand until it all comes crashing down around you. Serves me right for trying to plan our meals ahead of time, given the situation we were in.

It was a week after Independence Day. The summer solstice had just passed and the night before I had taken the most stunning photo of the sun setting though the bathroom window on my phone. In this moment the sunset shone out from the palm of my hand in vivid shades of orange and pink and purple, and I wondered what my life would be like the next time I looked through that window. An hour and a half ago the phone that kept the sunset safe rang to give me the good news that a stranger in another country was brain dead.

They were an organ donor and a perfect match for my six month old daughter, who had been on the waiting list for a new liver for a couple of weeks.

In a panic we threw some things in a duffel bag and got our affairs in order before the five hour flight to a hospital in another language. We dropped our house keys off at my parents house which was on the way to the airport and before hugging them goodbye I told them, “I have chicken breasts marinating in the fridge and I’d hate for them to go to waste,” and made them promise to eat them.

If you’ve ever been on a flight with a six month old baby, you’ll know the struggle. Add to that the fact that my daughter had to fast before surgery, so we sat on a five hour flight with a starving, angry six month old. Apart from a few days of biopsies and tests, and the first surgery she’d had at eight weeks old, she’d only ever known the comfort of feeding and sleeping at will, and the flight allowed neither. She was also barely sentient so we couldn’t distract her by showing her the amazing views of city lights and landscapes - which was fine because halfway through the flight we were surrounded by grey clouds anyway.

Somehow we kept what little shreds of sanity we had until we had landed and been driven to the hospital. Once there, a flurry of people in scrubs, speaking what seemed like a fake, cartoon language to each other, spun around the little hospital room preparing the little one for surgery. What little time we had to ourselves was spent doting on her, taking in every little moment and trying to freeze time for a while - forcing ourselves to ignore the worst possible outcome.

Even when the room was empty of hospital staff it was never quiet. It had a big window facing a garden filled with seagulls, crows and magpies that screamed loudly at each other throughout the early morning hours. Watching and listening to them was another welcome distraction from the nightmare. They were not as welcome when my daughter was rolled out into the operating room and we were instructed to get some rest. I turned on my side, put the pillow over my ear and grumbled “I don’t think I’ll ever fall asleep in this noise.”

I awoke four hours later to a strange man in the room. He informed us in broken English that our daughter was alright but the operation had not been successful. The donor liver hadn’t been a match after all. There had been some anatomical anomaly rendering it unsuitable. They had warned us beforehand but told us it was a “one in a million chance.” We should have known.

Everyone thinks their child is special. Having it confirmed by medical science is not the ideal verification, but after a while you learn to roll with the punches. Having a child with a rare disease means being prepared for shit to hit the fan so you can “at least” celebrate when it doesn’t. In this case we celebrated that “at least” they had discovered the anatomical anomaly before they removed her old, cirrhotic liver so she could “at least” have a barely functioning one until they figured out what to do next.

They told us that now, instead of taking home a healthy baby with a shiny new liver we’d be flying back in a week, our daughter an even brighter shade of neon jaundice yellow, unless another match was found before then. As she was in the ICU recovering from the failed surgery, I unpacked the duffel bag and prepared to take a shower, only to discover that to my horror, I had somehow forgotten to pack myself clean underwear. In a panic I took the tram to the nearest store and got clean clothes, a 750 page book to read and some art supplies to try to make the week pass quicker.

By the end of the week I had finished the book and filled page after page of drawings that greatly disturbed the janitorial staff. A decision was made that her father would donate part of his liver. We would then be going home in two to four weeks, depending on the recovery process.
We were in the hospital for three months.

We watched the beautiful vibrant greens of summer give way to the reds and oranges of fall. We put the baby in a borrowed stroller and took walks on sizzling sidewalks, then crackling leaves and puddles of rain. We had even picked up a bit of the fake cartoony language along the way.

Before processing updates or treatment plans from doctors we wrote it all down to update our social media only to retell it multiple times in different conversations later in the day. First to our mothers, then our fathers, then through messages and comment replies to everyone else. We thought the social media posts would be clarification enough, that by doing those we could say everything that needed to be said to clear up future conversations, so that they could be about whatever else we had on our minds. I had read two other 750 page books and a few shorter ones I was just dying to talk about. I had a painful stress acne breakout and stiff shoulders from carrying the world on them, travelling from one hospital to the other depending on when visitations were allowed. I wanted to know how the chicken breasts I was marinating had turned out. I wanted to scream and cry and feel sorry for myself for five minutes because I didn’t know what the hell I was doing and everything hurt but I was expected to suck it up and get shit done.

I had my hands full of particles I tried to hold onto to make the big picture more digestible but I was only allowed to be the girl with the sick child. The only thing I was allowed to discuss was how treatments were going, when we were expected to get home and what life would look like at that point. And look, I get it. My daughter was and still is my entire world. Eleven years later I still find myself trying to freeze time with her, savouring every moment before it passes and it still feels like it’s flying by. The big picture is a lot less bleak than it used to be, but it can still get completely overwhelming.