When my son Myles was just over 2 years old, I was told that he more than likely would never be able to hold a conversation, attend school like all the other children, understand or comprehend socio-emotional context, or grow up to be a functional member of society. I remember literally sitting six inches away from his face and banging a metal spoon on a pot, sobbing, desperately hoping that he would snap out of it and come back to me, but he simply stared right through me into space.
I remember the pain, unbelievable sadness, and sheer isolation I felt. It was without a doubt the most trying time in my personal life, my parenting career and my marriage. My heart ached; it ached for my dear sweet boy, it ached for our marriage that began to literally crumble before my eyes, and it ached for the future that I had envisioned. I felt cheated, robbed and abandoned. There wasn’t a day that went by that I didn’t wonder, Why? Why me? Why him? Why us?
As the days progressed, I realized my life had stopped. I was stuck hanging on to that moment in time around my kitchen table listening to a group of professionals lay out my future and the future of my son as if it was black and white, set in stone, a done deal. I replayed over and over what I was told, feeling as though I had been given a death sentence. I saw my life flash before me and remember thinking, I did not sign up for this.
While it certainly didn’t happen all at once like a bolt of lightning but rather gradually, I realized that time stood still for no one, and I was being dragged through the dirt desperately trying to hold on. I was fixated on my imminent reality, which was desperate, hopeless and hollow. How could I possibly see anything other than the muck and mire that was in front of my eyes? It was like desperately trying to keep my head above the water without being able to see the bottom, which was actually just beneath my feet. Something had to change. When I decided to stand up, find my ground, walk on my own volition, and forge my own path, is when the game started to change.