Saturday, June 13, 2009

Once upon a time

Once upon a time, there was a beautiful vibrant boy in my life.

His name was Chris and he was my son for 20 years, 10 months and two weeks.

Chris had a disorder known as Progeria, an insidious premature killer of youth, also known as Accelerating Aging Disorder.

When Chris died, our lives were devastated for a long time and even now, some 6 years after I still find it difficult to comprehend why this should happen to such a 'bright spark' in the world in which we live.

My boy was a fortunate one in the world of Progeria. He went to school and did well. He was in his second year of uni when he died, studying interior architecture. He drove a car, he drank beer. He gave motivation talks to secondary school students. Chris had many, many friends, and like all those taken way too soon, he was well loved by many.

Many of those afflicted with this disease die before they can experience what my boy did. The average age expectancy of Progeria is around 13 to 15 with some dying well before that age.

Incidence of this disease: 1 in 8 million.

My boy, despite his disabilities, was able to teach himself to play the piano in the last two years of his life.
When commencing secondary school he desperately wanted to play the saxophone but unfortunately his fingers could not reach all the keys so he settled for a clarinet instead.
When he experimented with the piano and was able to pick out chords and basic tunes he then regretted his initial music choices at school, but as we all say from time to time..."If only I knew in hindsight"!
I purchased a second-hand piano from a work colleague around 2001 and he and I would pick out different pieces and play them together gradually improving our skills as time went on. I eventually bought a few comprehensive books on basic piano education, one of them aptly entitled "Piano Playing For Dummies" and we would have a great time developing our own sense of rhythm as we went.
'Super Trouper' by ABBA was one such piece he taught himself to play, and I can still now hear his interpretation.......
The piano lies silent
No one plays it now
The echo of my children
Are a mere breath away.
I can hear their laughter
Like the piano,
A chord in my mind
That plays on forever.
The keys lie silent
Longing for someone
To caress them with their fingers
No more the tandem
No more the playing
How strange if a child were to play it now
For it would not be the same.
My 'Super Trouper' no longer here
To delight me with his sounds
And make me laugh with his dexterity.
Rich in memory and want,
the lid remains closed


  1. Our son's are both amazing individuals. Not many people who live on the outside of the disorders (whatever they may be) understand what it's like to be on the inside of things. This leads to so many misunderstandings and misconceptions of how things are.

  2. Ahhh, my wonderful friend, you make me cry, I miss him so. Welcome to the world of blogging, tell my faerie goddaughter to come visit us.

  3. Hello Jennifer - Lizzie sent me to say Hi - I am looking forward to getting to know you - Welcome to Blogland.

    Hugs - Fiona

  4. Champagne, thank you for your comment. How right you are. My boy, as I said did incredible things during his life. Mind, he was a typical man/child. Always getting into scrapes and testing the boundaries, like all good children do from time to time. To go through what he did, only he could understand. I could only be there as his mother and support him through thick and thin.
    Lizzie my dearest bestest friend ever, I know what you mean. I miss him dreadfully too and yes I will pass onto Mezza that she needs to visit. (She is impressed we are seeing more of each other these days too!)
    Fiona, hello and thank you. I look forward to exploring this blogger life more and more. me Jen (I always think I'm in trouble if I am called Jennifer!.
    Cheers, The Novice!

  5. Oh, Jen - how wonderful to read your words of happiness for the beautiful boy you had for such a short time! Tonight my Mum (90 years old)and I have been going through old photos - my beautiful brother, 21 months older than me left us in this world when he was only 9 years and 10 months - he battled a brain tumour for over 2 years and was blind in that time - he was so gentle, brave and courageous - why does this have to happen?
    God bless - hugs - Lurline♥

  6. I became a follower because this post touched my heart so much.