Mum and myself still in costume after the show "State Fair".
When Spencer and I had our fifth child Genevieve nine years after the others, we had never heard of Cystic Fibrosis.
Genevieve thrived on breast milk but when I started her on solid food there were tummy aches and frequent messy nappies. The Health Centre sister advised me to cut down on her fat intake. This seemed to work for a while but as time went on the pains got worse and so did the nappies. My sister who was a nurse suspected what it could be and urged me to investigate further.
The local GP referred us to a paediatrician who was puzzled by her symptoms – she didn’t fit any of the usual patterns. He sent us to the RCH (Royal Children’s Hospital) to test for coeliac disease. The specialist showed me the little sample of villi under the microscope – perfectly healthy. I mentioned Gen occasionally had rectal prolapse (caused by lack of tone in the bowel muscles). At last he suspected CF and arranged for a sweat test which proved positive.
I remember someone in the CF team saying, “Now we don’t want you to look on this as a death sentence,” which immediately made me think it must be, otherwise why would they mention it at all? Spencer was home running the dairy farm and minding the other children while I learned about the routines we would need to follow. The experience was made harder by the fact that Gen had several months before had an unfortunate experience with a fall, X-Rays, doctors and nurses and would scream every time we passed the local hospital - even the sight of a nun at the school would bring on a screaming match!
Gen’s early morning physio routine influenced our choice of school for her. The others had travelled by bus to an Independent school, leaving at 8am. However there was a small rural school five minutes from home so we enrolled her there as I could drive her to school just before school started and pick her up at 3.30. The teachers were very co-operative and her classmates were supportive.
The checkups at RCH seemed to come around very quickly and the car almost knew its own way across the Tooborac-Lancefield road to Tullamarine Freeway. We tried to make it a fun day, often going on to a film or some shopping in the city.
The first hospital admission was a shock but by this time some of Gen’s siblings were living in Melbourne so she had plenty of visitors and outings. However the severity of other cases in the ward was very sobering.
Gen developed an interest in horse riding quite young, and knowing nothing of horses myself, I was reluctant to get involved. However, as horse events begin early in the morning and don’t cater for dairy farming dads, I found myself learning some very basic horse handling and how to drive a horse float. She had a natural talent and was very successful, so while on the one hand I would be proudly videoing and sharing her elation, there would also be that dreadful hacking cough which I could hear anywhere on the grounds and sometimes it would seem to go right through me. (I would never lose track of her in shopping centres either!)
During secondary school an even greater gift became apparent – a talent for acting and singing. At first she performed in school plays. Now she sings at weddings and performs in musicals. We’ve had many teary moments sitting in the audience and being moved by not only the beauty of her voice, but also by the knowledge of the behind-the-scenes dramas connected with each performance.
A very distressing time for all of us came when our eldest daughter had her first child and he had CF. I think we felt this more than the announcement of Gen’s diagnosis. At that time we were fairly unaware of what lay ahead, whereas now we knew what our daughter, son-in-law and new little grand-child could expect as the years went by. Thankfully he is keeping well with not too many infections. Recently my daughter and I had a weekend away with a group of other CF mothers and came home full of admiration for the fortitude of these women, dealing with extraordinary hardships in a determined fashion.
Over the years I took Gen to any practitioners that I thought might help in any way - chiropractors, naturopaths, kinesiologists, herbalists, allergists, hands-on-healers, masseurs, acupuncturists. We explored allergies and food intolerances. At first I had followed the dietician’s instructions to let her have as much sugar as she wanted but after a while when I realised how badly I reacted to any amount of sugar, I was sure it wouldn’t be helping her either and changed tactics.
Meanwhile I was searching for answers for health problems of my own. Exposure to chemicals sprayed on our orchard resulted in a range of unpleasant symptoms and as conventional treatments were fairly ineffective I gradually turned to alternative measures and spiritual healing. Reiki was my mainstay (and still is). At first I treated Gen and then she too did a Reiki course. We would give it to ourselves, and to each other. When she had wisdom teeth out in the Alfred Hospital and I sat on her bed with my hands around her jaws, a registrar came to the end of the bed, looked and said, “I won’t even ask!”
In 1999 the wheels started falling off, big-time – four hospital admissions over ten months, and sputum tests showing that aspergillus had joined the pseudomonas and staph. It was soon obvious that Gen’s new job in a band, performing in smoke-filled venues, was a contributing factor. She left the band, but still had the lead role in State Fair with the local music group so I joined the chorus, figuring I could at least drive to rehearsals and take a bit of pressure off her. It was heaps of fun.
We all gained a bonus when she won some money in a talent quest and put it towards a treadmill, as trips into town to go to gym were a drag. Spencer and I use it too and it beats walking around the farm track for exercise, swatting flies all the way.
Recently Gen played the part of Fantine in “Les Miserables” in Melbourne, but no, I didn’t try for chorus down there! We went opening night, middle Saturday and closing night. It was a wonderful show and of course our family and friends were so proud of Gen's achievement. She coped amazingly well with the performances and the Alfred staff were so co-operative with timing of treatments to ensure she missed no rehearsals.
As you have probably read on Gen’s pages, we are now cautiously optimistic that Colloidal Silver appears to be dealing effectively with the usual bugs that grow in her lungs. The literature on it states that it is a product with natural anti-fungal, anti-viral and anti-bacterial properties, with no known side effects (though an effect of grey skin can result from overdosing on poorly made products). It is said to have no known interaction with other medications and starves single cell organisms of oxygen. This certainly seems to be the case for Gen over the last several months, and although it’s “early days” yet, she is a much healthier girl than she was twelve months ago; she has more energy, has gained weight, her lung function has improved, and her last sputum tests showed only some pseudomonas, and not the multi resistant type.
And so right now I am a much less anxious mother and grandmother. I’d love to know who gave me my CF gene – my mother or my father? Spencer is fairly sure his was from his mother, as CF has now shown up among his mother’s cousins’ families. I’ve learned a fair bit about CF since the days when I didn’t know it existed, and if I’d been told back then that I would in years to come sit in the main street of our nearest city accosting acquaintances and strangers to buy Red Roses and raffle tickets I would have totally denied such a thing could ever happen. And now look – my photo is in the current CF newsletter twice!!
Some final thoughts – I’ve read so often and now firmly believe there are only two responses to a situation – love and fear, and that each sets up its own vibrations. So when I hear a scary cough I first acknowledge – yes, I feel some fear, but then I affirm I am sending love to that cough and those lungs, and a feeling of peace and calm follows. I also believe our souls have chosen the issues to be dealt with in a lifetime and as our family has chosen CF we just need to get on and deal with it as best we can. We’re grateful we have Gen and our grandson just the way they are and they’re grateful they have us. Thank You, Universe!
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Jennifer's 2005 Update