Once was lost

Loss is a many-splendored thing. The ways it can seize your life with sudden and terrible strength and in a heartbeat or a handful of words pull something precious and irreplaceable from you once and forevermore... it is never less than astonishing in its ability to create and inflict an infinite spectrum of pain on even the smallest of lives. It does not discriminate. It does not recognize measures of right and wrong.

It does not make exceptions.

One slender thread of loss is that which spins, spirals and unspools from the mouths and pens of those we consult in times of greatest fear or anxiety. They are placed in a terrible position: the innate drive to offer sympathy and hope to others balanced with the professional need to deliver truth in the form of diagnosis. As they speak to us - as the words tumble from their mouths and shatter lives like glass - their eyes hold us steady and still. This is their burden; their chosen responsibility. They cannot flinch even as they watch worlds collapse.

(It must take great strength to choose this path. To know, as you awaken each morning, that in the course of your day - as a function of your attempts to help or heal - that you will be the bearer of grim tidings. To know that each day will bring you one or more pockets of time that abruptly saturate with the first stages of Kübler-Ross: shock and denial. Pain and guilt. Anger. Bargaining. The bright spark of first grief exploding into blinding conflagration, consuming hope like oxygen and leaving only ashes in its wake. Such great strength, to choose this as a life's work.)

Diagnosis. A word meant to offer knowledge: identification, labeling, a name to place on the empty, troubled space that surrounds us. A word that signals: transformation. In the best times, it is a starting point. A place to begin, to lay the groundwork and establish a strategy and formulate a plan of attack. In the best times, it tells us: we will fight, and we will win.

In others, it is the sad alchemy that transforms hope to grief. That brings the most dread fears - the ones we never speak aloud, lest the magic of suggestion serve as catalyst - to sudden and terrible life, with the knowledge that what once was thought infinite with promise and blessings is now, will be, finite. 

There are forms of loss I do not understand; hope to never know, experience, or live through. There are, and have always been, those moments when you hear first- or secondhand of the kind of loss that leaves you breathless and heartbroken, aching in sympathetic agony for what was stolen, helpless to help or stop from projecting your own life, your family's lives, into that selfsame scenario and finding yourself reduced to weeping rubble at even the possibility of... (we do not speak it aloud).

There are others I know. I know the moment of diagnosis. I know the transformative power of small and simple words. How in less time than it takes to tie your shoes a new filter can be slipped over the endless, wondrous dreams and ambitions you had projected onto your child's life from the moment your wife first whispered, "I think I'm..." and justlikethat: they are worthless. Your child still sits before you, playing just as he did three minutes ago, but he, you, everything — it's all irrevocably altered. Hello, incurable neurological disorder. Hello, 1 in 150: it is you, my love, my sweet, my son. 

I don't know what you dream for your children. At this point, I don't remember what I had dreamed for my son. But I remember feeling myself a stone, slipped from a clumsy hand and descending from sky and sunlight down into the darker waters, drawn by the irrevocable pull of gravity and circumstance into the depthless trenches carved into the heart of the world, conscious only in the vaguest sense of the life I had always imagined for him dissipating into the countless fathoms.

All those moments. Playing at a friend's house. Standing on an elementary stage, reciting memorized lines. Stroking a flare single into right field. Teaching his sisters how to ride a bike. Mowing the lawn for the first time. Heading off to the park to meet up with friends and make mischief. Growing strong and smart. Becoming confident in who he was becoming. Learning to drive. Falling in love.

(That... that was the one. The one that cracked the hull, and then the infinite atmospheres of pressure flooded in and collapsed and crushed me.)

Loss is a many-splendored thing. And as we read in the library we built, as we tried to learn and navigate our way through this new world, was that this kind of grief, this sense of loss over the life you thought your child would live, was to be expected. This was a well-worn path. Many others had been here; many others would follow. It was thick with curved thorns and broken shells, and each new curve offered new forks, other paths that might lead to easier passage or darker corners of discovery. There was no map, but we were not alone there.

We took that for what it was worth.

Time passed, as time often does. Months bled into years, and as we accessed new programs and integrated new strategies, our perspective changed. Our son, the mighty Hurricane, learned how to learn. Processes were broken down into fundamental blocks, and he took and built on them, one by one by one. He worked harder than any three or four or five-year old should ever have to work. But he learned: to talk. To make eye contact. To seek out others, and share experience, and write and read and laugh and play. Incrementally, he took small steps and giant leaps forward.

We watched as it happened. Actually, that's not true: that implies passivity, which doesn't reflect the experience. But at times we stepped back and watched, and found ourselves astonished by how far he'd come. There was never a moment - there never is a moment - when we were not cognizant of challenges and differences and all that must be overcome. But still: the progress was, is, will be unmistakable. And in the process, we found that our own focus shifted, from what was lost to all that might still be found.

Last spring, my son sat with me - in fits and starts - and watched the Boston Celtics work their way toward the NBA championship. My excitement was contagious, and this past winter he'd often try to recapture that excitement by asking to watch basketball on weekends. And when this spring finally arrived... he found a new expression for this passion.

Yesterday afternoon, as we pulled into the driveway, he asked me to open the garage door. He does this every afternoon, when I bring him and his sisters home. I acquiesced, and pulled out and set up a couple of pieces of equipment for the three of them. Then I walked into the house, tossed their bags on the kitchen floor, and made my way to my office. Sat down, hit the space bar and started to reimmerse myself in the online world. Just briefly; check e-mail, look at Twitter updates, make sure my fantasy MLB team was correctly aligned for the night... kill ten minutes before I started dinner. And as I sat there reading, I heard someone come up behind me. I glanced back, and saw that it was my son. He wrapped his arms around my neck, gave me a hug, and then asked, "Daddy, can you come out and shoot hoops?"

My heart burst, as it does so often these days. And then I stood up, took his hand, and headed outside.