As I wheeled Chris off the elevator, he was quieter than the day before, definitely not in the mood for pranks. He didn’t complain—my husband never complained—yet he clearly wasn’t feeling as well.

Two steps forward, one step back: that still qualified as progress.

Rolling through the hospital hallways, following signs for Radiology, we passed several women wearing nasal cannulas and pulling oxygen-cylinder carts. The sight wasn’t remarkable in that the National Institutes of Health runs clinical trials on virtually every ailment—from the common to the rare, the treatable to the terminal. What was surprising was seeing a cohort of patients similarly afflicted, all female and relatively young.

At least they were ambulatory. When Chris’s doctor ordered a scan this morning, his nurse ordered a wheelchair.

During his first few days after readmission, Chris’s condition fell somewhere between depleted and God-awful depending on the degree of his sawtoothing fever. As his treatments—withdrawal of anti-rejection meds included—began to take effect, however, I’d sometimes arrive to find him sitting up in bed, looking comfortable and alert, like a patient soon to be released.

Towards the end of the week, his humor kicked in. After opening a colleague’s get-well card to find a droll reference to their firm’s new management—a buyout of the Rouse Company was but two weeks away—Chris reached for the bedside phone. When a recording advised him to leave a message, he deepened his voice and pretended to be the CEO. “This is John B—,” he said gruffly. “It’s come to my attention that you have a poor attitude about the merger.”

To me, the spoof was proof of recovery. To his friend, who didn’t recognize Chris in disguise, it was cause to call the head of security: Someone was impersonating the chief executive.

Come Friday, Chris remained frail despite signs of improvement. His nurse took me up on my offer to drive him to his appointment.

In the Radiology waiting room, we found two more women on oxygen therapy. After positioning Chris at the end of a row of seats, I took the one beside him. If silence had been a preference en route, now it was a prescription. No one spoke or made eye contact. No one leafed through magazines, for there were none. No one asked the time or glanced at their watch. It was as if chronic illness had instilled a monkish composure. Or torpor.

I was the only non-patient in the room, the Lucky One. As the others sat alone with their thoughts, I wondered what those might be. That three back-to-back tests followed? That with sick leave exhausted, the boss had to be told? That scrambled eggs might stay down? That last time the shadow had shrunk, so this time, well, don’t get too hopeful?

Or were they trying to avoid thinking, instead imagining doing something—anything—more agreeable? Strolling through the hill town of Assisi. Watching a Coen brothers film. Defending an IRS audit.

One of the women on oxygen finally had enough. Silence wasn’t a chance to grab a shot of mindfulness; silence was a looming endgame. By talking, she could ward off quietus. But she needed a partner.

“What brings you here?” she asked me, in a tone so warm and genuine that she might have been a greeter in a small-town visitors bureau.

She looked about forty, or a little older, but it was hard to tell; illness can age a person faster than a Broadway makeup artist. Although her appearance was middling in every respect—from her height and build to her facial features and shade of brown hair—her spirit was striking. Whether the vivacity was innate or cultivated for survival, she offered me what she desperately needed: a deep breath of fresh air.

“My husband needs an X-ray.” I glanced at Chris. He showed no sign of wanting to engage. Under the circumstances, it felt unfriendly, even hurtful, to not offer more. “He had a kidney transplant a few months ago,” I added. “Now he has mono.”

Immediately, another patient stood and left. Perhaps she went to the restroom, or realized she’d left her purse in the car. More likely, mononucleosis spooked her—even though it’s not an airborne infection.

I paused, realizing that my interlocutor might want to leave, too. She didn’t budge. “How about you?” I asked. In deference to patient privacy, I avoided the politeness of trading names.

“I need a double-lung transplant. There’s a group of us here who have the same disease. We get together every year.” She chuckled. “It’s like a reunion!”

Lymphangioleiomyomatosis, or LAM, is a rare condition that primarily affects women ages twenty to forty. Abnormal cells invade the lungs, as well as lymph nodes and kidneys, leading to reduced pulmonary function and respiratory failure. Treatments, including transplantation, can enhance the quality and duration of life but the disease is incurable. After diagnosis, life expectancy is usually ten to twenty years.[1]

Her disclosure was stunning. Not long ago, I wouldn’t have grasped the challenges she faced, merely to delay the inevitable. No longer.

One day she would lie in an OR, as we recently had. But unlike Chris, whose kidneys were allowed to fail in place, with one of mine nested beneath them, she would have both lungs removed to accommodate her grafts. No matter how damaged and inadequate, those lungs were infusing her blood with oxygen, ridding it of carbon dioxide, maintaining life. Temporarily, she might require a heart-lung machine and a ventilator; ultimately, she’d either breathe though the new air sacs or wouldn’t . . . breathe. If her grafts failed, there was no recourse like dialysis to sustain her.

In short, she would perform a death-defying, net-free launch from a trapeze with no turning back once she let go of the fly bar. Her odds of surviving even five years after transplantation were not much better than one in two.[2]

And that was if she got lucky. With the chronic shortage of deceased-donor organs, lungs might not become available in time. Although living donation was possible, she’d need two Good Samaritans, each providing the lower lobe of a lung.^⁠ They’d face a riskier surgery and longer recovery than kidney donors, which meant friends and relatives were less likely to volunteer.

A radiology assistant called Chris’s name. Together, they disappeared through a door leading to the imaging machines. Moments later, the woman was called, as well.

She’d shared no details about her personal life. She’d only spoken of her illness, which, understandably, had come to define her—from what lung-healthy products she could buy to how she should dress, walk, or perform daily chores, such as unpacking groceries, to minimize exertion. If she seemed compelled to tell me she had LAM, it was not because she sought sympathy; she struck me as someone devoid of self-pity. What she wanted was to be heard. To be heard is to be remembered.

In no time, Chris was back and we were retracing our route through the cold fluorescence of the corridors. As we entered an empty elevator, he said, “You shouldn’t have mentioned I have mono.”

“Why?”

“You saw the woman leave.”

“But she had a right to know. I’d want to know.”

I hadn’t meant to embarrass him. For that I was sorry. But I was as disappointed in him as he was in me. Chris was still “chesting” his health cards, as if this were a hand of bridge, with nothing but his pride at stake.

No doubt a gender difference was at work, a primal XY-chromosome trait, which he’d exhibited many times before: Never show weakness lest a contender seize the advantage—be that your mate, your kill, or your year-end bonus. According to such logic, illness fell between failing and fatal flaw.

A strategy suitable for the savanna or a boardroom, however, is counterproductive in a medical setting where any debility you don’t reveal is one that isn’t treated. The woman I’d just met understood the importance of communication, on every front, regarding her health. I was sorry that my husband didn’t.

And hadn’t.

At the same time, I was grateful. As we made our way back to his room, my mind unspooled a skein of “at leasts.” At least he isn’t suffocating to death. At least he can fall back on dialysis. At least he isn’t alone while undergoing treatment. At least his graft shows no sign of rejection. At least I haven’t had to kiss him goodbye outside an OR and wonder if he would return. At least both of us were able to presume we would return.

Counting blessings was my luxury, not Chris’s. Sick as hell, he was entitled to feel however he felt, unthankful included, with no obligation to parse his advantages relative to others.

Later that night, Chris’s doctor called me at home. He’d had Chris moved to intensive care. He spoke so calmly and matter-of-factly that I didn’t panic. In fact, the thought never occurred to me that every “at least” would soon count for nothing.

[1] National Heart, Lung, and Blood Institute, “Health Topics: LAM,” http://www.nhlbi.nih.gov/health/health-topics/topics/lam (accessed February 1, 2019).

[2] Organ Procurement and Transplantation Network, “National Data: Lung Kaplan-Meier Patient Survival Rates For Transplants Performed, 2008 – 2015; Survival by Single vs. Double Lung (Lung Only),” https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/# (accessed February 2, 2019).

We woke at the thud, panicked.

My wife and I had been dozing in bed, squeezing the last seconds of sleep out of our pillows before the inevitable onslaught of little people. It’s something of a delicious defeat when you hear the door creak open and steps on the carpet. You know you’re trading something so precious to you (sleep) for someone so precious, who you just wish would be precious elsewhere. But then they’re all warm and soft and tousle-headed and snuggly and saying things like “daddy, can we have special cereal?” and poking their knees into your side and sitting on your face with a full diaper and sticking cold toes into your armpits.

This morning they didn’t get to do all those precious, horrible things to us because we woke up to the sound of something thwacking against our window. After shaking off the confusion (no, it’s not a child on the roof; they can’t reach the window), I recalled why I knew the sound. It was a bird. And from the sound, a pretty sizable one.

I said as much to my wife, as I tried to open my eyes but managed only a half-squint. She half-muttered sympathy, as if she cared deeply inside but couldn’t get past the early morning fog. I added that since it was a big bird, it probably got away a little dazed, no harm done. I tried to find her to give her a reassuring pat, but I was too drowsy and missed completely. I also couldn’t pry my eyelids open still; they ached a little, as if I hadn’t used them for a week instead of approximately six hours.

I’ve read that birds, reptiles, and some mammals have something called a nictitating membrane, a third eyelid that acts as a translucent shield when they are diving or flying. They can draw it horizontally across each eye to moisten and protect it. For instance, many birds use it when they are regurgitating food for their kids so they don’t get their eyes poked out by little beaks.

I think of things like this when I’m abruptly disturbed from sleep. Things like this, and demonic children’s songs that will not be exorcised for hours.

We turned over and buried ourselves in the blankets for three more minutes before the precious, horrible people came and got us.

Nadia was playing hopscotch out on the sidewalk later in the morning when she found the bird. Robins are always the first birds my children encounter and remember. It was easy for her to name the body she stumbled upon, one story below our window, and quite dead. We had a little flurry of don’t-touch-that’s and daddy-is-it-going-to-be-okay’s, and I managed to deposit it into a small terrarium for them to look at. Animals can die of diseases communicable to humans, but this one died upon impact, and it was still warm. So the kids and I examined it carefully.

It was larger than any bird I’d seen this close. The wings were tucked in beside its impossibly light body. Many of its bones were hollow, for ease of flight. The neck was at a weird angle, a wrong angle. The death in front of me was at a wrong angle. It always has been, but it just felt much more wrong suddenly, because it was also in front of my children. Blood speckled its beak, a dark decoration above the warm red tinges on its chest.

I realized that it was a young one, probably a teenager in robin years. Its feathers were perfect, straight and sleek, pinions just slightly larger and smaller on each side, forming beautiful strong wings. And the roses on the sides under the wings were just barely forming up into a speckled breast. It was about the size of an adult but without the experience, which is why it probably hit our window.

One eye was slightly open and looking like black jelly, like it would spill out of the socket as liquid if you tipped the bird over slightly. The other eye was closed. This teenage robin had eyelashes on the under-lid. It had whiskers. Its feet were curled and delicate.

It was too beautiful. It was too sad.

Nadia was watching me. She told me she was sorry that it died because she could see the sadness in my eyes; but I wasn’t really mourning after the bird. We touched its wings, feeling its perfect form beneath our fingers: the surreal softness, the preciousness of a young fleeting life snuffed out. Not a sparrow falls but that He sees it. God saw this.

Woodpeckers will close their nictitating membrane, then tighten it a millisecond before they hit the tree so that their eyeballs don’t fall out on impact. Perhaps we need similar shields.

Only a few days earlier we had discovered a young robin hopping around the pine tree down in the yard. We took pictures. The kids enjoyed watching it hop around. There was a hawk above, circling around, and I like to think we saved that little robin’s life. There was a little one then, alive and bouncing, and then a bigger one, dead and stiff.

God saw this.

What is it about seeing that is comforting? Wouldn’t catching the sparrow be more comforting? Wouldn’t solving the problem, ending the great horror – death – wouldn’t this be a more lasting comfort? You see me, God. You see my children. But if you were to let them fall…

Sharks close their third eyelid when they attack. This way they can see their victims without getting blood in their eyes.

Kai got out of the house when he was only one year old. We noticed when it was too quiet. He had slipped out the screen door moments after I arrived home from work, and neither Linnea nor I had seen him. I locked the door. It was five minutes before we noticed he was gone, and in those five minutes he was down the outer stairs of the apartment building and toddling along the street.

The terror in my heart: I was running down the sidewalk in my dress slacks, socks, and undershirt, desperately looking for my son, expecting to see him lying in the street, expecting to be one of those parents we pray for, expecting to live with the knowledge that we didn’t see him, we didn’t see him, and then it was too late to see him…

He liked stairs, so he had kept to the house side of the sidewalk, and a kind and observant couple had pulled over and were with him four houses down when I ran up. The man was on the phone with the police, and I heard him say, “Oh never mind, it’s okay. The father’s here.” I thanked them, breathless, and held my son, and held him walking back, and held him up the stairs, and held him for another hour until he didn’t want to be held anymore, promising him I would see him, always, I would see him.

God saw this. How can I say it differently, to ease the pain? God sees… me?

If we mourn this way, how must God mourn at all He sees, at all the flickering lights snuffed out, the bruised reeds broken, the sheep silent before the shearer? Death is nothing new to Him, and in fact, He knows it as an old friend, an old foe, better than us all.

Today, this day, my children are alive and real, perfect in form and surreally soft. They are the preciousness of young life, fleeting, and my God sees them. Lest you think me morbid, think on why this is precious, why as a parent, as a child, as a human I am determined to cherish this thing we call life, why I must defend it for those I love, why death is such an aberration and a destiny and a defeated foe. The thought of death is morbid, maybe, but so is the thought of life without the thought of death. For now, we need both. And God sees us, in both.

God sees us.

Peregrine falcons see too, because as they dive at over 200 miles per hour, they blink their nictitating membranes repeatedly to clear away the debris and clean each eye.

In the midst of holding onto my family’s break-neck life, I find that I am unable to bring myself to accept such a thing as death, and yet… I know that it’s what I must do, for we will all encounter it, sooner or later. This dark thing I wish to dismiss by forgetting, or fighting, or examining on the operating table of a small terrarium: Death will come for us all.  I know, in my spirit, it is good – a gift given so that our difficult, fallen lives will not last forever, but it will never lose its dread, even when it has lost its sting. And perhaps I will embrace it as a friend when more years have passed beneath my feet, or perhaps I will embrace my Savior, and He will carry me through it into the place where it cannot enter.

And my heart holds its breath for all the times I must try to prepare my children for that moment – the one I feel certain I will never be fully prepared for, the one that God sees. I know I am actually only trying to prepare myself. I know it is not up to me, and I wish I could take more comfort in that. Perhaps someday I will. Every day is another reminder that I am not in control, and death is the great Out-of-My-Control.

But I know this. Each day that I walk in the sight of God, He will train my eyes, and my sight can be strengthened by seeing life and knowing it itself is but a shadow of the life to come.

Nadia, my little avian maven, knows that birds need nests. So she settles herself in a patch of fragrant clover and picks flowers as a pillow for the bird. She is kneeling in her pink flowered dress, a lily ringed with gingham, examining the ground and plucking appropriate stems carefully, precisely, preparing for burial. Perhaps, preparing for flight.

And I blink back a tear.