At 7:30 am on Saturday, September 15th, 1990 my son, Devon Lee Riley was born. He was a beautiful baby with the most soulful eyes...my love for him was instant and eternal.
After only a day, it was clear that there was something not quite right, he could not keep anything down and he didn't pass the ever important first bowel movement. He was transferred to a Children's Hospital where he underwent what was expected to be a bowel resection.
Sitting on my hospital bed waiting for the surgeon to see me after surgery I remember thinking, "it's almost over" we'll go home and start our life together as a happy little family. When the surgeon entered my room he informed me that my son had come through the surgery fine, he was in recovery, but.....they had discovered that his bowel was in fact twisted and the location of the twist is an indicator of Cystic Fibrosis and he would need to be tested by the hospitals C.F. team.
At the time I had absolutely no idea what any of that meant but I knew it wasn't good whatever it was. I remember looking to my sister who is a Registered Nurse and the look of horror on her face said all I needed to know.
Three positive sweat chloride tests confirmed Cystic Fibrosis, we met with the C.F. doc, his name was Dr. Ecclestone and he was the most wonderful, kind and calming human being I've ever met. He told me the average life expectancy was 28 years old and as soon as he'd healed from surgery and regained the weight he had lost we could take him home...which happened to take 6 long weeks.
Now real life starts....
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