Pockets and Posies… Paisley, Part 4

Yesterday’s Life

Night had fallen while we had been in the windowless ER, somewhere in the belly of the medical behemoth. From there, they transferred us to the intensive care unit.

Centered in the vacant sterility, Paisley lay under a dim overhead lamp, stabbed and wired in places too numerous to count. As we stared down from behind our masks, my wife tried to hold Paisley’s hands and feet still, to keep her struggles from pulling out these lifelines. Digital equipment throbbed and chimed continually. They would have snatched away the hope of sleep, had we wanted it.

I do not know a word for the futility of that place. The soul is tied by the limbs, rent and quartered. Shock and numbness mingle with the welling pressure to scream and to see everything broken. One wishes only for the quiet of home. To go back to yesterday’s life. I wanted to hold Paisley, to stand between her and the demons, and to make them take me first. Instead, you are made to stand there. You are made to feel the emptiness of your hands: a useless guardian keeping futile watch.

Bracing Up

I accepted that we might return home without her. Or that she may survive, but that she could be mentally impaired, deaf, or far worse. I recalled the doctor’s eyes. We tried and failed to force back the memory of our friends’ babies. I recalled the funeral services. The eulogies. Our friends and their courage in the face of bitter loss. Now death stood at the door. She was so very small, there under that lamp.

The un-lying reality was this: I could not expect my prayer for Paisley to be answered. I could not, because of my friends. Unless, that was, I thought somehow we were different, which I did not believe. Their children would be with us still, if prayer was a good predictor of outcome. It is not a predictor. That we had prayed for Paisley said nothing of what the outcome would be. She would live or die according to the inscrutable counsel of God’s will, and nothing else would decide her fate.

And so, without malice or blubbering, I stood in the quiet with what felt like a soldier’s duty. I acquiesced, under the silent heavens, to the counsel of His will, should He choose to withhold deliverance. The words of Job whispered to me. But I questioned whether I could stand at the lectern and make the same profession.

Full Pitch

Paisley fought. She was strong. So strong, really, that there was no accounting for her infection in the first place. She had never seemed the weak or sickly type. And she seemed to have a will.

The doctors fought. The diagnosis came back more clearly regarding the exact bacterial strain that she had. It differed from the initial guess, so the cocktail of antibiotics was adjusted and optimized. Unflinching – that would be the singular adjective I could ascribe to the staff; they acted without hesitation.

By phone, I relayed to my parents the avalanche that had overtaken us, and the demon that Paisley battled. My mother took the first flight to Austin, and she remained steadily with us for the duration.

Meanwhile, an incendiary prayer campaign was ignited on Paisley’s behalf. And though I have wept at points throughout this writing, I find myself beating it back yet again at this memory. Hundreds of people from no less than four continents were praying for our baby girl. They visited daily. They made meals and watched the other children. Those who were far away sent cards. My colleagues joined too, and they quickly divided my workload to keep irons in the fire, so I could stay the hospital. We were surrounded by a family of supporters that were with us for every step.

There is nothing like friends, when you are in that place.

Walking Wounded

One couple that came to visit will remain indelible in our memory. As others had done, they asked softly and attentively after Paisley, but with a quiet tearfulness that I did not understand until much later. I would later learn that the wife had a sister, who had similarly contracted meningitis as an infant. They were unable to stop the infection in time, and the resulting brain damage left her sister severely handicapped. She lives as an adult now, but with the mental development of a two-year old, consigned to permanent lifelong care. I understood only later the compassion that brought the two of them to the hospital, being there for us, yet never disclosing the awful burden of fear they carried for Paisley.

We were visited by parents who had lost their baby. They had themselves spent a very long time in the ICU, there at the very same hospital. I can think of little that would be harder in life.

I mark down such acts for what they are: courage, born of compassion. It is the setting aside of oneself to help someone else at their darkest hour. They came because they had been there. To whatever end, they would be there for us.

Falter

The tiny veins of an infant simply do not bear up long, which meant that Paisley’s IV lines had to be continually re-inserted. They began to run out of places to attempt fresh sticks. She had been stuck in every limb: the hands, the arms, and the feet. Paisley’s infant shrieks at these repeated and failed stabs sometimes became too awful to bear. And the choice of veins had begun to dwindle.

They were eventually left to attempt an insertion on the side of her slender neck. The needle seemed thick beside it. One nurse turned her chin to the side, while another held her body. She struggled in futility against the heavy hands as the doctor made the insertion – piercing inward, then downward, ever deeper toward the chest cavity. Nearly invisible beneath the mass of hands, Paisley uttered a garbled and soulish cry that I cannot well describe, and which I cannot erase. The wolf had her by the throat. It was at this, after having watched so much, that I was at last overcome, averting my eyes and escaping that dreadful room.

Futility. The futility that a parent knows in the hospital will break you.

Your own guardian impulses are compressed into the vault. You are the least important person there, and you cannot save her. You instead must nod consent at the instruments of torment. Then come the hands, the vain struggle to escape, the piercing, and those terrible cries for help. A great welling impulse rises, an urge to beat off her assaulters. The tumblers of that ponderous vault begin to turn. Reason contends against the primal, until the divided mind can bear no more. The intellect shrivels; the dilating spectacle presses all else from view; and the primordial breakpoint at last seizes you: fight or flight.

In that fluorescent corridor, head clasped in throbbing hands, fight and flight became one.

The irreducible fact was that Paisley had been consigned. She was to be tormented – either by a mindless and merciless demon, or by the compassionate barbarism of those trying to save her. Her passage, whether into final darkness or back to the light, would come by a path of excruciating indignities. This was the special tax laid upon her for entering this world. And it was unjust.

[to be continued…]

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