Eighteen years ago I was wheeled into a room in the maternity ward of Mt. Hope where I could be alone after the birth of my son. They were still clearing out all the old mops and buckets from the room as I was being wheeled in. The gesture was meant to comfort me after the "ordeal" that I had been through with the birth of my first boy who had multiple congenital defects.
I can say it now with a smirk of humor At the time I remember wondering at why everyone behaved like my child was dead. "We doh want you get upset by hearin d other babies cry."
That night the only things going through my mind were that he won't be able to play football- I won't be able to hold his hand and go for a walk. The bewildered feelings took two years to subside actually.
The day after- the first day Joseph and I had a "conversation," because he began communicating with me from that day. I had just removed the blindfold from his eyes, put there by the nurses to shield them from the UV light...he looked my straight in my eyes with all the anger and defiance a two day old could muster as if to say " Who d FXXX put dem ting on meh eye?" So clear was his emotion that I burst out laughing and thought, "OK...you are gonna be trouble. You've been here before eh?"
Any mother of a disabled child goes through worry, stress, anxiety. Anxious nights pacing floors while doctors assemble a diagnosis of your child's development, and future direction. The many times I heard a diagnosis that I rejected! The many times I saw through the proposed plan for his care..... the many times I was told to prepare for the inevitable death.
The many doctors who understood that the best goal for him was to improve the quality of life for him in what ever way- and they did their best to improve his chance of independence in what ever way they could.
The members in our family, his family who contributed to the last eighteen years of bringing him up, watching him grow, looking out for him, offering assistance in whatever way. He truly was a child who many looked out for. And his ever enlivened spirit, and constantly positive attitude, even right after going through the worst rebuffs from the outside world, the ones who shunned him, the ones who pulled their children from the swings and benches where he sat- and yet he still hasn't lost faith in the goodness of people.
He has created a full life, with interests, good use of his talents, and a character that seeks self sufficiency, independence and goal planning- always with a bigger picture in mind.