The View From This Side…

In all honesty, I never once imagined that I would ever be on this side. I like to live life on the edge — defying the odds. I’m a bit of a control freak, but just a bit — maybe. When our world came to a sudden halt four years ago, with the early birth of our son and soon later with a devastating diagnosis, it was as if I’d been pushed off that edge that I once craved and was now looking back up, wishing to stand on the mountain high once again.

Little did I know that in 3 1/2 short years, after the death of our little boy, we would be once again looking at life from yet another different angle. Looking back on a life that once was — looking through the ugly cloud of grief death seems to always leave behind.

On November 8th, 2009 at 10:42 pm our son Gavin took his last breath. He lived an amazing 3 1/2 years of life — a life jammed packed with experiences and discoveries. He also lived a life full of suffering — suffering that not only effected our son but our family as a whole. After a long 52 hours after removing ventilation our little boy was finally free from pain. The peace and joy that flowed was simply amazing — the Mitochondrial Disease no longer held our little boy captive. He finally received his reward he fought long and hard for.

Even though our family felt, and still feels the peace only God can give — fact is, we still wake up every day without our beautiful son. We now only have the memories made and the dreams that will never come true. Sadly our view from this side is a shared experience by so many families — a club that once again we were all forced to join.

In the midst of the fight for cures the view from this side is often left out. So many families are living with loss — the loss of their children to these devastating diseases. Our lost children have a powerful voice even from beyond the grave.

We are the result of a cure not found.