Living life beside a child dealing with chronic/terminal illness is a life I’m not sure anyone would ever wish upon another human being. It’s a life that often begins with saying goodbye — a life where every moment is questioned to be the last.
If you look really hard — is it possible that this process of saying goodbye could be viewed as a beautiful song played out over time? — an intimate glimpse into the deep love a child and parent share.
I remember very clearly the day we were told our little boy would soon die. Despite the shock of actually hearing the words spoken — not as a possibility, but as truth — that reality of death was always in the back of my mind. As I look back over our life with our little boy I see how that reality tucked away in my heart and mind helped us live an amazing journey, not living for not the next day but living for the next breath – the next touch.
The process of saying goodbye changes everything. It allows for sweet goodbyes to be spoken over and over again through everyday events. It allows for a hug to last a little longer and a touch to not only reach the skin but touch the soul and make a lasting memory.
I remember laying next to Gavin with my hand on his chest and feeling his little heart stop beating. Despite the pain the struck me on the deepest of levels, it was the moment that we had been preparing for. The finish of our journey. It wasn’t a sudden end of our story but rather the beautiful completion — a book to be read over and over. It meant that my child was not longer suffering. It meant that my baby’s failing body after fighting so hard for three and a half years could finally rest.
It meant that his spirit was free — the process was complete.