The words a parent never wants to hear…
“Your child has…”
It doesn’t matter what your child has. The air is sucked out of the room. Time stops. And blind panic sets in as you realise your child isn’t like the other babies. Something went wrong and it must be all your fault. Denial make its appearance. The first instinct is to fix it. Then comes the defiance and anger. And finally – determination, which is unwaveringly enduring.
My diagnosis was Cystic Fibrosis (CF). It is a genetic disease. Both my parents carried the gene unknowingly and I got both copies. CF causes the (usually) thin and watery mucus in the lungs and pancreas to be thick and sticky, trapping bacteria in the lungs causing infections, inflammation and breathing difficulties and blocking the path where digestive enzymes travel between the pancreas and intestines making it difficult to absorb fats and nutrients from food. It can also affect the liver, reproductive organs and sweat glands.
The life expectancy of a person born with Cystic Fibrosis in the 70s was not a long one. 15 years. If we were lucky, kept up a constant routine of physiotherapy, nebulisers and tablets and managed to avoid chest infections, hospitalisation and lung damage. CF was predominantly a children’s disease, progressive and with no cure.
My parents were bombarded with information and, my Dad particularly, made the decision that the predictions were not going to apply to me. He was adamant we would fight. This thing would not make me a statistic. I would be the exception. The bar was set, the line was drawn and the fight began.
© Melinda McKeon 20 December 2020