By CAROLINE IVORY
Imagine a household with a part-time working mum, two school-aged kids, a 4 year old kinder kid and a mischievous 2 year old. Throw in before and after school activities for the older children, day time activities for the younger children, housework and meal planning.
Now just to top it off, add in two children with an incurable disease called Cystic Fibrosis (CF), which demands constant attention to diet, medications, exercise, physiotherapy and lots of hospital appointments.
Welcome to my life!
When my first child Aiden was born in 2002, despite being breastfed every hour, by 5 weeks of age he was failing to thrive. He would scream constantly with awful stomach pains and producing foul nappies almost every hour. I questioned my ability to mother. Was this what motherhood was meant to be like?
And then came the day of diagnosis when my life was turned upside down. My heart broke that day when I heard of the battle that lay ahead for him. Within days of diagnosis, the marvelous respiratory team from the Royal Children’s Hospital were trying to teach me everything I needed to know about CF and how to care for my little man, so that he could begin to put weight on, and become a happy little boy that I longed for. I learnt about administering medications to a newborn, tackling physiotherapy on a wriggling child, the importance of calculating fat contents and trying to keep my little man free of colds than are rampant among babies. I was explained that in the future years, he may require “tune ups” – which is CF talk for intravenous (IV) antibiotics for two weeks to remove the lungs of the bacteria which can be resistant to oral antibiotics. He would also require general anaesthetics to insert the IV line. Plus having bronchoscopes to view the inside of his lungs and get samples of bacteria when necessary. Now that sounds like fun… I was beginning to feel more and more like a nurse than a mother.
Fast forward to 2004 and I fell pregnant with my second child, Alicia. Her life began very differently. When I was 15 weeks pregnant, I had an amniocentesis to see if she would also be born with CF. I clearly remember the day when I was told that she too would have a battle ahead of her and my heart broke for a second time. The benefit of an early diagnosis meant that from her second day in the world, she was having enzymes to break down the fats in my breast milk. She quickly gained weight and was a happy baby, but still provided me with plenty to keep me busy!
It wasn’t until my third and forth child (Emma and Jack) that I found out that mothering wasn’t all about administering medications, completing daily physiotherapy and calculating fat content! Oh the bliss, this was easy!!