In late December, we received decisive word from the cardiothoracic surgeon that he could fix the tangle in our daughter’s chest. I was standing in a hotel lobby overlooking an indoor waterpark, crouched against the heating vents, waving on my family and our friends to go ahead without me. I pressed the phone to my ear, memorized the surgery date and, with all the time in the world, ended the call to begin the wait.

We had decided to wait nearly five months.

The surgery was both crucial and not-an-emergency. It had to be done, but it could be held off until a convenient time. Putting aside the sarcastic question of when is it a good time for you to risk your daughter’s life?, it seemed wiser to wait for the next school vacation, which was spring break. I sat there in the lobby for a moment, staring at the Christmas tree. It was impossible to picture the next months, how they’d spread out in front of us: both the last sumptuous buffet before a fast and the last ten miles of a triathlon’s bike ride before the marathon begins.

With no other choice before me, I put my phone in my pocket and made my way to the waterpark.

*****

The winter blues were the worst I’d ever had that year. I’ve always felt the world get heavier and more tiring as the light seeps out of our days, but the winter of 2013-14 hung on me like a weighted backpack. I slept hard and woke late, added extra caffeine each afternoon and cried easily. My husband and I both admitted tiny fears to each other and then I stopped doing even that, preferring to keep my nightmares to myself rather than pile them on his.

One day in a conversation with a group of women friends which gathers regularly, I admitted that I had lost the energy to do much of the volunteer work that I’d committed to do earlier that year, work that I’d chosen and agreed to do largely because of the purposeful forward-motion it gave me. I was doing it anyway, but largely on auto-pilot, which felt disingenuous. One friend wrote to me later and said:

Autopilot is good, because you keep going. I think it’s like the “conserve energy” modes on some appliances.  And I always think that you are guided to do what best suits you. Doing these things keeps you in the world. 

The world, it seemed, was the problem in those months. After sixteen times putting my daughter under general anesthesia, after the crazy diets and the dangerous practices I’d followed for her, I had begun to wonder if I had used up all of her chances. Surely someday, one of these risks would be bad. Surely someday, a doctor would put her to sleep and she would not wake up.

That was the thought that followed me those five months.

During that time, my husband and I took a fifteenth wedding anniversary trip without our children. Several times on that trip, I woke in the night paralyzed by the thought that this was an evening I had given up with my daughter, an evening in potentially very limited supply. We walked the streets of New Orleans, and on tours of their hauntingly beautiful above-ground cemeteries, I took pictures of exquisite gravestones which gave me solace that, if necessary, the dead can inspire us centuries after they’ve gone.

Also during that time, we did all the usual things: worked, played with our children, cooked dinner and took them to Hebrew School and play dates and chorus concerts. We bought our little girl a brand new bed, high and lofted and exactly what she’d wanted, but shortly after we’d assembled it in her third floor bedroom, I looked at it and thought, clinically, that thing is going to be a bear to get out of here if she dies.

And worst of all, I used Facebook Messenger to ask my best friend who lived on the other side of the world if she would promise to fly here if there was a funeral.

There were five months of normal-normal-normal-macabre, normal-normal-normal-macabre. I could not consistently, as my friend had suggested in that email, keep myself in the world. I floated above and below it in the grey, dirty-snow gloom of that winter, doing the things I had to do, reminding myself to breathe deeply every once in a while just to wake myself up to the reality of my own body and its miracles.

And my daughter? We told her nothing. We let her have the winter we could not have, holding this knowledge in our heads. She sang in her chorus, reveled in her new beautiful bed, played and ate all the fruit she wanted, and seemed not to notice my hungry eyes, memorizing the shape of her beautiful face.

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