Tuesday, 20 February 2018

Lily White - Lily Bug - Pumpkin - My favourite first born granddaughter and Cystic Fibrosis.

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I recall all those who mean a lot to me birthdays. In this I am probably no different to anyone else. My mum's, my dad's, my former wife's, all my children, my twin grandsons, Jacob and Joshua, born the 30th September 2015 and now of course Lily - 6th January 2018. Dates I hope I'll never forget. 

Lily hadn't had her first month in this world when it was discovered she has Cystic Fibrosis. This hammer blow struck the very heart of her parents. All their dreams of raising a healthy child, one that should by the rules of life expectancy, outlive them, certainly me. It is unlikely I will live for another forty years but both Grace and Brett surely will. Lily most likely won't.

For a while, I put on a positive face for the benefit of my son-in-law and daughter. Their pain is palpable I wanted to support them in the hours and days that followed the shocking news.I feel I was right in telling them to not so much overlook Lily's condition but to forget all thoughts of her premature death. We all die. We measure our lives in man-made seconds, minutes, hours and so on. I have to live my life by man's clock a fact I have grown used to. None of us though should waste our time here in this shell we inhabit clock watching. We all need to live in the present moment and that was, still is, my advice to my beloved Grace and Brett. Love that little girl every second. Fill her waking days with as much fun and hijinks you can. There is no tomorrow. To hell with tomorrow. It never comes. Today we live. Let Lily enjoy her time here. Love her now and every now from now on.

After it had all sunk in, long after I had stood as solid as I felt I should, I snapped at a chap at work, Graham. There are no excuses for bad manners but I regret letting my emotions be used to have a go at another.  Since then I have spent some hours crying on my own. The more I did the more I questioned why? Having told Brett and Grace to love her every blink,  every breath she takes why was I weeping? Why I was crying for me. I was feeling sorry for myself. Crying at the thought of my feeling of loss, of losing someone I fell in love with the very moment I knew of her existence. Too many of us feel sorry for ourselves with regard to losing someone yet I haven't lost Lily, she is very much alive. 

Death is meaningless. What dies? The self or the I? When these shells we inhabit fade do the atoms that make them die? No, they don't. So how can 'we' really die. We just return. Anyway, once I stopped feeling sorry for myself I sat myself down and gave myself the same talk I gave G and B. Forget about what might happen and concentrate on what is happening now.

Love that little girl with all my heart. I will. We will.
 Russell Cuts the Corn From The Brewers Whiskers.

1 comment:

Cara H said...

I'm sorry that Lily has this condition. It's a tough one. I'd be heartbroken too. On a positive note, treatments for cystic fibrosis have improved vastly and people are living longer and better with the condition. I was reading a piece by a fellow in his thirties who has cystic fibrosis and appreciated his sense of humor about it. He said that one thing most people aren't aware of is that the condition can cause digestive issues which mean he can clear out a public restroom due to the awful odor of his poops.
I had a friend in my early years of junior high who did pass on at the young age of thirteen from the disease. He was a sweet, nerdy kid who loved comic books. His name was Jamie, and I am very glad that I knew him.

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A Utility Fish Shed Blog

A Utility Fish Shed Blog