Wednesday, January 8, 2014

I had imagined a life. Somewhere, someone is probably living it. I am not.

Five years ago today, our son was diagnosed with every condition you can’t imagine: communication delay, receptive language delay, expressive language delay, central auditory processing disorder, sensory perception disorder, compromised immune function, fine motor delay, gross motor delay, hypertonia, autism. (That is the short list.)

There was a lot of pain and disappointment in getting to that day. Our son was born prematurely, and had emergent medical challenges from the moment he came into the world. As he grew, he was anxious and sometimes violent. He was dismissed from six nursery schools. He had been hospitalized and nearly died from multiple respiratory infections. He had seizures. He couldn’t speak, and he had eaten through every wooden object in our home – gnawing incessantly at his bedposts, the railings on the stairs, the coffee table. We had taken him to doctors, speech pathologists, occupational therapists. It was hard.

And that day was hard, too. Not because he had autism. We knew he had autism. We had spent three long days at the Child Development Unit in Children’s Hospital, watching a team of experts watching our son. All of us, spectators to his failures. All of us, knowing he was autistic.

The hard part came after the diagnosis. We sat, in silence, for a moment. I was waiting for someone to tell me what to do next…what services to access for him, where to begin looking for providers, what kinds of things would be covered by our insurance. Instead, the panel of medical professionals asked me, “How do you feel about Henry, having autism?” And when I made the important inquiries, they replied, “We can’t tell you those things. We don’t know.”

I was pregnant. They told me our daughter might share the chromosome defect that caused Henry to face so many challenges. I had just been diagnosed with Type I diabetes. The world was coming apart.

I thought of my Grandmother, who also had Type I diabetes. I thought of the last book I brought to her, as she lay dying. She loved adventure novels. I gave her Touching the Void by Joe Simpson, recounting his and Simon Yates' successful but disastrous and nearly fatal climb of the 6,344-metre Siula Grande in the Peruvian Andes in 1985. After plunging 150 feet, Simpson regains consciousness only to realize that he has a broken leg, and his only hope of surviving is to reach base camp. He cannot focus on the big picture, of getting to his end goal. The task is so monumental that he fears he will lie down in the snow and die. Instead, he focuses on making it to the crevasse ahead of him, or the steep rock ledge. Of moving for another half hour, fifteen minutes, ten seconds. Eventually, after three days of crawling and hopping, he makes it to base camp.

That would be my life for a long, long time.

I couldn’t bring myself to look ahead. I couldn’t consider all the things I had to do, all the things that might go wrong, all the possible culminations of my efforts. Instead, I would wake up and decide, “Today is the day I will teach Henry to wash his hands…to use a spoon…to put on his pants.” I couldn’t think about the thousands of dollars we were spending every month to access speech therapy or occupational therapy….the depleting of our life savings and the stack of insurance denials. Instead, I paid the bills one by one, thinking only of how I would afford that particular service for that particular month. And, somehow, each effort stacked on the other, and it became a life not of parts and pieces, but one of overcoming and transformation.

I have learned what it is to be human.

I learned that we are hardwired to experience pain. We are, in fact, built for it. As much as we run away from hurt, it is intrinsic and important. In our efforts to dull its sharp edges, to medicate it away, to assuage it into oblivion, we miss the crying baby that is our own sometimes anguished existence. The only use for pain is in surrender to it, so that we might someday walk through the other side as better people.

I learned to love unconditionally. I could not afford to love my son for the things he might do in life because, based on that first bleak prognosis, he might have done nothing at all. I had to love him just because he was mine to love. I had to love him as he was. I had to love all the parts of him, including those that had been pathologized and labeled “autistic.” And then, I wondered, could I love myself that same way? Without condition? And I learned that I could.

I learned that the future is really just a terrifying, heartbreaking illusion. It doesn’t matter who you are, or how healthy your children. There is no such thing as “the future.” It’s just an idea that we have, along with a lot of other ideas that are not the least bit rooted in reality. It’s a dream, an apparition, a myth that we weave because if this moment were the only purposeful one, how would we spend it? Doing….this? And so, I learned to make my moments count. Not absolutely, of course. No one can live each moment with intention, but we can find a meaning in every single day of our lives.

I learned that there is a diverse pool of humanity, and it is that very range which makes possible progress in science, the arts and humanities. Variation has value, and what might seem outwardly disabling might only be limiting because of a narrow world view as opposed to something intrinsic about the person. “Ability” and “disability” are situational, contextual concepts.

And so, as it turns out, I learned that the life I had not planned and perhaps did not want has turned out to be a good one. The best one. And, of course, my only one. I don’t love my life, my children, myself because it is a strategic investment in what might someday be. I love because it is enough, all on its own.

Five years ago, I could not have known.

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