An End...A Beginning

At the beginning of March Devon didn't feel well and his skin became a funny color and his legs began to swell, he was admitted to a children's hospital in Hamilton, he was in liver failure, he was transferred to children's hospital in London to await a transplant.  Miraculously after 2 days there we were informed that his liver was functioning perfectly.  Now just a matter of waiting for him to recover from his brief ordeal and we'd be off home again.

So March 12, 2006 dawns and Devon has been in the hospital for just over a week, his condition had been dire when he was transferred and had been in the PICU (Pediatric Intensive Care Unit) and they were moving him later on in the day as soon as a bed on a medical floor opened up, all but one IV line was removed and things were looking up.

When I look back on the last few days of Dev's life now I realize that he just wasn't quite 'right', there was something just a bit off about him, like he was someone wearing a 'Dev' suit.  I didn't see it at the time because I was overcome with relief at his 'miracle' liver as his doc called it.

On the 12th at about 5 pm, I was sitting across from Devon in a rocking chair, my Mom and I were talking and I looked over to him in bed and he was staring at me with a very odd look in his eyes.  I asked him if he was alright and he told me he was having a hard time breathing.

The events following that until his death the next day at 7 pm happened so fast and I believe my brain has blocked a lot of it out as a protective measure that I really can only remember snippets.  It all happened very fast, he rapidly declined, he couldn't breath off the carbon dioxide and he was slowing being asphyxiated, he was unconscious, he was intubated and before I knew it he was gone, he died in my arms.

My Best Friend

For 15 years Devon had a very normal life, he was relatively healthy for 15 years...a few hospitalizations here and there but nothing major.

I am who I am today because of Devon...he softened me and I learned what it was to love another unconditionally.  He was a joy, he was weird, unique, funny, talented, loving, ridiculous, smart, lovely and bizarre all at once.  It's corny, I do realize but Devon really did complete me...it was as though my heart had been waiting for him for 23 years to work as it should.

We were inseparable and I loved every long hippy hair on his rarely brushed head.  He was my son and my best friend and on March 13, 2006 I learned what pain actually was.  See I thought I knew what pain was, childbirth wasn't exactly pleasant, the death of my Grandparents was horrible...I really had no idea what despair was but I was soon to find

The Love of My Life

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....