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Killing with Kindness – jeansforgenesday
’Oh… I see’ I said, still polite.
The world slowed down.
He apologised, he would have preferred to come to the house in person to tell us this news. Come to the house? An alarm bell went off somewhere in my head.
He spoke of a required sweat test… something about salt… about us needing
I would hang onto that tiny shred of hope called ’might’ for another week at least, until proved otherwise.
I had heard of Cystic fibrosis but I was unsure. Was it the chest? the lungs? had there been a girl back in college who had it or was that something else? It hadn’t occurred to me to ask the consultant a
Silence
’Mum??’
A faint whimper
’He can’t have that.’ She said softly.
’Oh God…he just can’t’ she repeated..
My body numbed but still I didn’t ask for any facts.
I called my husband. I have no idea what we said to each other that day but I know he had
I don’t remember arriving but I do remember being greeted in an unnaturally warm way by a handful of nurses …too many to be normal, which made it impossible not to panic.
We sat briefly, waiting to be seen by the consultant. At that time, there were 4 or 5 folders labelled with various diseases that used to sit on a shelf in the waiting room. They have since been removed as they were causing so much distress to unknowing parents. I picked up the cystic fibrosis
As a lifelong, avid reader…I wouldn’t properly be able to read let alone enjoy a book again for at least two years after that fateful day. The only thing I read that day was, ’Average life expectancy …26yrs ’ …before finally wailing.
These days we have hospital appointments galore, returning to that same room, over and over again, week after week. A year or two after hearing our own news, I watched another woman, alone in the waiting room as she picked up the cystic fibrosis book
Life changing’ news is terrifying. It never goes away. It won’t get better. It won’t all become easier for everyone once we all get used to it, unlike many of life’s other difficult hurdles. That’s a pretty hard thing to digest and can grip you very tightly and very darkly in the night.
Our little warrior is now 7yrs old and doing incredibly well. He has more joy, energy and spirit
So many other families dealing with different genetic diseases face far tougher days than we do. We are lucky in
In the early days I would question our wonderful consultant about the future. ’Will he still be well at age 2? What about going to school? Will he be able to walk and run when he’s older???’
’You must take one day at a time.’ he said. He was right. Thinking any further down the line is just too
When facing a genetic condition there are not only the physical worries ( CF patients are facing lung damage, non functioning pancreas, possible liver damage, probable diabetes, potential organ transplant, infertility and limited life expectancy to name a few.) There also sits, the heavy emotional weight of knowing that (WE) his parents, gave this to (OUR) child.
As a mummy, you are supposed to protect your child, to fix them and most
Life takes on new meaning and new questions when faced with a genetic disorder ’Will our other existing children/ future children also inherit this? How will our other healthy children cope with this?’
Waiting for test results to come back (negative) for our elder son was unbearable. The heel prick test didn’t actually test for CF when our elder son was born and so we were told there was a chance he could have been silently living with this for 5yrs already. He would need to be tested the following
We drove straight from the hospital having just learned our baby had CF, to watch our 5yr old singing in his school music concert. Just a baby himself, in reception. We didn’t know that night if maybe he too carried this awful disease.
We cried quietly throughout the whole of that unforgettable little French song as he beamed and the audience smiled on, blissfully unaware of why we were so emotional.
Preparing and protecting siblings from unedited facts about genetic disease is a difficult hurdle in itself. CF is never far from our minds
I can’t pretend there are any plus sides to a genetic disease but what I can tell you is that there are a billion plus sides to the spirit and characters of those living with a genetic disease and in many of those who are caring for someone with a genetic disease . That insatiable zest for life, the pure enjoyment of life, that feeling of
The kindness we have experienced from family, friends, neighbours and strangers has been incredibly humbling. Their kindness has killed a lot of the pain. From a casserole left on the doorstep in the first week, a cappuccino handed without words to my front door at 7am to many a silent, squeeze of my hand just when I needed it. These lovely people have sponsored our events or completed charity events of their own and have helped more than they could possibly
Watching Prince Harry & William describing a memory of their mother recently, they fondly remembered her telling them as children ’Be a little naughty if you want to… but just don’t get caught’. My own boys and I laughed with delight and recognition.
’Hey, that sounds like you mummy’ said our youngest with glee. Fun sometimes really is the greatest medicine of all.
One day at a time.
❤️
If you would like to donate, just a couple of pounds could really make a
https://www.justgiving.com/jeansforgenes
Thank you for reading, sharing & raising awareness of genetic disease
Lou Finch
xx
