I write on Saturday December 1st 2012.
Last Monday we got the news that our son Jon - who is 23 weeks old inside his mummy's tummy - has T-13. This means he will die very soon after he is born, if he manages to make it until then. T-13 is Trisomy 13 also known as Patau Syndrome. Medically - it is fatal and incurable.
Last Tuesday morning, in the impact of this I sat at the piano, as I do to practise most mornings and played. And this piece came. My son has somehow inspired me to play this music through the love I feel for him. I often create music and lyrics, but never share them. I was prompted to share this.
I have been studying and working over the past six years to be able to write and perform music. Another year before I publish any of the 550 plus lyrics and 60 finished tunes I thought. Until last Tuesday.
Could I take this music and publish it I wondered? Can I do something for my son?
So the week has been making the artwork (linking the O's and N's signify's the extra chromosome that is T-13), then producing and mastering the music and arranging for it's publishing.
Then those 'Demons of Doubt' said hello. How can I dare to put something out there that was played in one take and developed as I played? Will people think I am trying to exploit the situation? Maybe? Well, maybe I shouldn't then?
For many years I have not stepped out as those doubts and fears of 'doing the right thing' come to the fore defeating many a great idea, design or vision. They never saw life.
Funny how, in the light of this situation, I draw strength from both my sons. They need to see their daddy daring to step out, I somehow feel. So I am.
This is my first published artwork and my first published music. My wife Christiane said 'I am proud of you.' What more can a man ask for?
We had a scan on Thursday and I was allowed to take pictures. I have created a film of that and this music provided the backdrop that somehow seemed just perfect.
I am a stand for Jon Freddy Slater. He is alive now. We will make every moment count. We need a miracle. So we pray and stand for one with family and friends.
As I gently explain to his brother Benjamin, who is nearly five, what we face as a family and play him the video with this music, I know that what we are going through will somehow bring some good.
IT'S NOT OVER TILL IT'S OVER
PS Click on the artwork to see the detail and the message it holds.
released November 30, 2012
all rights reserved