Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Sunday, October 2, 2011

Song for the hopeful

I was going to write an entry about the expectations we had for Charlie as he was born - we thought athletics were going to be a forte, swimming, lifeguarding, maybe some piano, definitely encouraging music in high school, or art, an early reader and good learner - and as I tried to start the post several times, I realized that the only thing that has changed in that list is the athletics. The kids can't play contact sports. Oh well. Our expectations haven't changed in that regard, I suppose, at all.

Really, by 'expectations', I meant that we assumed that Charlie would be around for as long as we were. Which, for any parent, isn't always a safe thing to assume. It's horrible to think about, but none of us know how long we are here for, or when we'll depart. I think it's the worst thing about life - not knowing when it's going to be over. I guess, though, that if we did know, life wouldn't be as much fun. Philosophically, perhaps it would be more fun - if you knew you weren't going to die bunggee jumping, maybe we'd all have more fun along the way. Specifically, near the end.

The hospital has warned us that they expect that Charlie will have to have a heart transplant at some point in his life. Now, I am hopeful that it won't come to that, but what if it does? The average life expectancy after transplant is 15 - 20 years. Then, you can have another or there might be some sort of new technology that is out by that point that will extend your life further. I wonder what will be around during Charlie's lifetime - the one drug he's on has only been recently approved in Canada, and in the UK it's known as a wonder drug. I hope (hope is an understatement) that during Charlie's lifetime there is a miraculous heart technology advancement. They can make phones that are as big as your thumbnail, but they can't fix hearts so they run for 100 years?

I know it's early, but I am beginning to grasp how important extending quality life is, and how important it is to enjoy each other while we're here. Don't worry, I'm not sinking into a pit of despair or anything - I firmly believe, in my heart of hearts, that Charlie is going to get through this with flying colours. But this situation has certainly got me thinking about life and death, time with family and friends, and what matters most. Forever, Charlie is what matters most, and spending time with him and extending his life is a newly found purpose in mine.

Lyrics to Song For The Hopeful :
(Harry Connick, Jr.)

People with hope
Have a special prayer,
A louder drum,
A brighter flare.
This is a song for the hopeful.
May God hear it sung.

People with faith
Are the lucky kind.
They'll be the ones
With peace of mind.
This is a song for the faithful.
May God hear it sung.

There's a song for the doubtful.
There's a song for the lost.
There's a song for the desert
Barren, but crossed.
But for those who are strong of spirit,
Maybe they don't need to hear it.
But still, a song for them.
A simple song for them.

Nothing can shade
A seasoned soul.
It's all the loss
That makes it whole.
This is a song for the hopeful.
This is a song for the faithful.
This is a song for the hopeful.
May God hear it sung.
May God hear it sung.

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