The first time I was told that my son had sustained an extensive, irreversible brain injury that would leave him profoundly disabled, I was devastated. At that time, Aaron was a two month old infant who had been born fourteen weeks prematurely. He had spent his entire life in a neonatal intensive care unit. Before I even had the chance to bring my newborn home to enjoy life as a first-time mom I was told that he would have severe cerebral palsy, severe mental retardation and he would be so impaired that eating and breathing on his own might even be too challenging for him. In essence, we were told that our precious baby boy would live in a vegetative state.
We got that diagnosis almost eight years ago and I can still easily recall the swirl of emotions that started as soon as the words were spoken: heartache, sadness, anger, terror, fear, disbelief and most important of all, love.
To a new mother who certainly loved her child but had not been allowed the typical bonding time and experience it was somewhat surprising to me that when faced with a grim prognosis that ended life as I knew it all I could think of was how much I loved my son. All I wanted to know was how to help him reach his greatest potential. All I hoped for was that he would one day be able to know happiness, to know love and to be able to love in return.
It was a far cry from the dreams I had for him before his birth, and it was the first major life lesson he taught me; success is subjective. He would never play football for my alma mater, would never attend graduate school like his father did. While accepting that was difficult, in time we noticed our views had changed on what constitutes a meaningful life.