Charlie's Blog

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

Thursday, August 23, 2012


One year ago today, we received devastating news about Charlie. He had a huge heart, a huge liver, was retaining fluid, and things didn't look good. We were admitted and this secondary journey - the journey parallel to being a parent - began.

A year later, we are grateful to have Charlie in our lives, alive and well. His boundless energy and never-ending smiles, his tantrums and mood swings, naps and feeding schedules - its all a blessing and we cherish each and every moment. The other night, Charlie woke up at 4am and started to cry. I went in to rock him, and as I sat down, and turned to me with still-sleepy eyes and kissed me on the mouth. He then tucked his head into my shoulder and went back to sleep. He just wanted a kiss! And a year ago, while he was so sick,that kind of magical moment seemed out of reach and improbable at best.

He has a huge heart, and a good heart. He goes for echos and ECGs and Holters and has lots of nurses who would like to adopt him and/or be his girlfriend. Charlie is remarkable, adorable, frustrating, trying, intelligent and emotional. He is everything we wanted and more. I can't imagine a more different place from a year ago today. I am thankful for the support of good friends and family. And we look forward to continuing to share each moment with our special little boy.

Time - Pink Floyd
Ticking away the moments that make up a dull day

You fritter and waste the hours in an off-hand way

Kicking around on a piece of ground in your home town

Waiting for someone or something to show you the way

Tired of lying in the sunshine staying home to watch the rain

You are young and life is long and there is time to kill today

And then the one day you find ten years have got behind you

No one told you when to run, you missed the starting gun

And you run and you run to catch up with the sun, but it's sinking

And racing around to come up behind you again

The sun is the same in the relative way, but you're older

And shorter of breath and one day closer to death

Every year is getting shorter, never seem to find the time

Plans that either come to naught or half a page of scribbled lines

Hanging on in quiet desparation is the English way

The time is gone the song is over, thought I'd something more to say

Home, home again

I like to be here when I can

When I come home cold and tired

It's good to warm my bones beside the fire

Far away, across the field, tolling on the iron bell

Calls the faithful to their knees

And hear the softly spoken magic spell


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