I’m writing this between surgical procedures. Kyra’s, not mine. Which, really, is more relevant, and which is why this column disappeared over the last two weeks. My apologies for that, I just couldn’t bring myself to write. I wanted to, but I just blanked out and moved into some dark little place inside my head, a place where I could hide out and try and protect myself from feeling anything.

Or so I thought last Sunday, 12 days ago, as I sat in a darkened room on the ninth floor of the Charlotte R. Bloomberg Children’s Center at Johns Hopkins Hospital in Baltimore, and watched our baby doze.

Kyra had finally fallen into a fitful sleep. I, on the other hand, could get none, because even in sleep, one unencumbered little hand—the other was attached to an IV line and firmly fixed to a board—would try and tug at the NG (nasogastric) tube taped to the side of her nose, a tube that ran through one nostril, down the back of her throat, and delivered fluid past the esophagus into her stomach.

The redness around her nose, remnants of the blood that was shed when she pulled it out past sensitive skin earlier that night, was enough of a reminder for me to stay awake. Despite our best efforts, she had previously managed, with one quick move here, a half-turn there, and some facial contortions, to ensure that the NG tube needed to be taken out and put back five times, and replaced completely once because of a kink that couldn’t be straightened out. Every time that happened—just imagine someone needing to manually push a tube through your nostril and back down your throat to your stomach—she was traumatized, and so was I.

Finally though, she was asleep, and had been for about half an hour. I sat on one of those hospital chairs you invariably find in every hospital anywhere in the world—hard, plastic, ugly, and designed to guarantee the hospital more business by giving you a pain in the back, neck and posterior—and watched her. And decided I might as well try and write my column.

So there I was, my eyes moving between her face and my laptop screen, my fingers hovering over the keyboard, my mind filled with flashing memories of her from different times, and yet, strangely blank, strangely bleak; my body suddenly feeling very hot and then very, very cold. I began to tremble, really shiver, and quickly shut the laptop before I dropped it; my hands shaking, palms sweaty, feeling somewhat dizzy. I tried to calm down, and told myself this was just a panic attack, and I shouldn’t be an idiot. I looked for the cellphone I had dropped in my fluster, and debated calling my husband back to the room.

Though hospital rules permitted only one parent to spend the night, they’d allowed both of us to stay with Kyra till well after midnight. Wyly had left for a nearby hotel around 2 a.m., and as Kyra had cried out every time I moved out of her line of sight, the choice of which of us would stay and which of us would have the luxury of three hours of sleep in a nondescript hotel room was taken out of our hands.

So at 4 a.m. that Sunday night, my clammy hands barely holding on to the phone, my heart thudding and my mind in hyperdrive, I was about to give in to my panic and demand that Wyly come right back. He would have. Instead, I took a deep breath, and compromised. I called him, but just told him what was happening, knowing he would offer to return. He was awake himself, far too worried to sleep, and far too wired, I suspect, to give in to being tired.

Yes, he immediately said he would come back, and yes, I immediately said no. Instead, we just talked, not of Kyra’s illness or the procedures that would take place in a few hours, or the risks involved, or even her. As 4am turned to 4:30am, we talked of people, places, politics, and things we would plan—Christmas, the holidays, the new year ahead.

I think we would have gone on planning a future that is as yet uncertain, and quite unknown, with an enthusiasm bordering on the desperate, if the night nurse hadn’t come in to take Kyra’s temperature and gently pulled me back into our very fragile reality. But our conversation had helped us both; it had calmed us both; and let us know, as we talked through the shadows of that dark night, that we could face yet another day, together, and take on whatever it held.

Over the last few months, so many people have told me, “stay strong," or asked me how we do it, how we manage this incessant worry with Kyra. Well, it’s been a hard, hard year on so many fronts, and the easy answer, and we sometimes say this, is that we do it because we have no option. That’s not really true, I think.

There’s this option: Collapse, cry, be constantly depressed, or be negative about everything. And sometimes, we’re very close to that edge. There is nothing worse than to watch your child in pain, and not be able to do anything about it, and not know what’s causing it, not know what lies ahead, or how much more lies ahead.

Then there’s the other option, where you hang in there. It’s not that you don’t feel fear, or worry, or stress, or everything else, it’s just that you choose to deal with it differently. And manage to grit your teeth and get by.

So given our available options, I’m so proud of the fact that together, as a family, we’ve opted for a third. We have somehow managed to handle the stress, the pain and the reality of our situation and deal with it as practically as possible, but have not just “hung in there." For the most, we’ve also chosen to live life as best as we can, and as fully as we can, by celebrating each day, by loving each other and a whole bunch of other people we’re lucky to have in our lives, and by truly believing that things will get better.

Nothing symbolized this more for me than when we were walking out of hospital last week. Wyly went to get the car, and I had Kyra in my arms. As we got out from the elevator and crossed the hospital lobby, her exhausted eyes suddenly lit up at the sight of this giant shiny Christmas tree, enticing all tiny passersby. She squirmed, enticed, wanting to be put down, and I did so, hovering, in case she fell. Her hemoglobin had dropped dramatically over the last few days, and she had been on heavy drugs.

I needn’t have worried. Our daughter is far stronger than she looks. She stood straight by the tree, enchanted, smiling for the first time in days. As I looked out beyond the glass, there was her father, waiting by the car, watching his baby, smiling for the first time in days too. We all went home in much better spirits, all aglow, inside and out.

Twelve days have gone by. Next Thursday, 11 December, Kyra goes back to Hopkins for another surgery, but we’re already planning our Christmas vacation and it will be joyous. This is the season of miracles, if you believe enough. And I believe. We all do.

The Moppet Show is a blog by Kadambari Murali Wade about her experiences of bringing up a child with multiple special needs. Read the previous blogs here.

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