It was all going wrong

Looking back at that RSV experience and how I felt at the time, I now marvel at my own insight, how I knew, even then, that this time was of great consequence, for my son, for me, for my family. I sensed it without understanding why. Life was shifting sideways, life had changed, life as I knew it would never be the same. It began as a vague sense of disconnection that came simply from my infant son’s serious illness and hospitalization, an experience that most parents do not ever have to face. As N languished in the ICU, struggling to overcome RSV, I had begun to feel a kind of foreboding. It was as though I had been cut from the vine of everyday experience and I was descending in a surreal slow motion glide downwards.

On a dreary afternoon in February 2002, I was knitting beside my sleeping son in the ICU and at around 4:00 pm, I heard the sound of raindrops. Large, heavy, and determined, they pummeled the window, they fell randomly on the outside of that thin glass barrier that separated 4 babies and their parents from common reality. I went to the window, hoping that the rain would comfort me. The light of day was almost gone, leaving in its wake a grey-green sky to glower behind the dark silhouettes of city buildings. Street lights were beginning their struggle to shine. Steam curled idly from the rooftops of the nearby skyscrapers that surronded the hospital. Below on University Ave. dark grey and nameless silhouettes purposefully marched up and down, wearing their black trench coats and carrying their black umbrellas and briefcases. They had places to go and things to do, and were oblivious to all that trauma, just a few feet away, on the other side of brick and mortar.

I was on the wrong side of the wall. I longed to be out there, again. I wanted to be a nameless faceless nobody on a busy city street, hurrying to catch the streetcar that would take me home. I felt this terrible sense of having been wronged, of having been falsely accused: my briefcase had been snatched from my hand, and I, thrown into a hospital jail cell. I put my hand on the glass, hoping the bars were imaginary, hoping to reconnect to something that was slipping away. I longed to escape the anxiety that lived inside this building, inside this room. But my dreams dissolved in the rain, blurred by the rivers of water on the window and the growing darkness. I watched helplessly as the window became a mirror, reflecting a frightening present and uncertain future: the image of pink and tan walls decorated with chrome instrument panels, lights and tubes, and screens with wavy lines. Beeps and alarms, dim fluorescent lighting, life support, respirators, carts filled with strange vials and containers. I knew it was all wrong, even then, I knew.

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About lifewithautistickid

I am a Chartered Professional Accountant (CPA), with an MBA and BA. I have been fortunate to have had an extraordinary life with an autistic kid. I have learned so much from him about people and life in general. I want to make a difference by sharing my extraordinary experiences. Raising a son with severe autism and developmental disability has made me realize how we who are "normal" do not understand "disability". Instead of trying to "fix" people like my son by burying them in the community, I would like to see a society that respects and honors them for who they are. The potential is endless, in a world that can celebrate with sincerity, the dignity of the individual. Love and blessings to people of all "disability" . That includes you and me!
This entry was posted in Autism Challenges, Coping, sort of, Nicholas' Story and tagged , , , . Bookmark the permalink.

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