[1] Skyscraper.

-- Closer to the clouds up here --

Living with the number one genetic killer of children under two is an interesting, yet thrilling ride that can take a sudden dip during any turn.  People are often petrified at this prospect, and when they hear that Spinal Muscular Atrophy took my sister when she was 14 they tend to run 10 country miles.

The fact is that using a non-invasive ventilator, which is more commonly known as a life support machine, a feeding tube, a cough assist that is akin to a vacuum cleaner and any number of medications when my lungs to succumb to another infection does not change one simple fact:

Life is a ride we all take, in sickness and health, in disability and ability.  It goes one way - closer to heaven with every second - every breath.  All muscle disease does is make you aware of that with every movement.

I'm on top of that proverbial skyscraper - acutely aware that whether you are 101 years, months, weeks or even seconds old, life has to begin and end.  It is merely taking the chance to live life while you have it that makes the difference between a self-imposed destruction, or happiness.

Here, I will be telling you about my life as a music lover born with no ears, the latest saga on the reality music TV programme I'm watching, or how life is from inside a hospital.  I will also be blogging about disability, and how we all need to find the ability in ourselves - disabled or not.

Welcome to this little virtual piece of Hollywood.  It won't always be glamorous, and it certainly will get crazy.  But this is the story of how knowing that your rollercoster car called life might not go as far, gets you more happy time than you could imagine.

I will end most blogs with a video.  This time, it's the turn of Angie Miller with her stunning version of Demi Lovato's Skyscraper.