Growing Up With A Terminally Ill Mom


Growing up, I always knew my mum’s lifespan was limited. My mother was born with a terminal illness -Cystic Fibrosis (CF). CF is a genetically inherited condition that affects the lungs, pancreas, liver and intestines. Ireland (our home) has the highest incidence of CF in the world! Unfortunately due to a particular bacteria in my mum’s lungs she isn’t eligible for a lung transplant.

From a very young age I was aware that our family situation was different from that of my peers. Many of my own personal celebrations and milestones were celebrated in a hospital instead of my own home. Also, I spent more time with some doctors and nurses than my own family members! From the age of eight or nine I was helping my mum make up her IV antibiotics and even prepare her medication for the week ahead. My mother was has always been very open and honest with me about her health. I always knew I would lose her eventually, I just didn’t know when.

As I progressed into my teenage years my mum became my best friend, my agony aunt, my confidant. We were closer than ever and she was sicker than ever. We began to set little goals as her health deteriorated. The first goal we set was that she would live to see me go to college. Sure enough, she made it. She helped me move into my dorm room and she took a ton of photos! We cried as she gave me endless advice about everything from roommates to studying. We cried because we were sad. We cried because we were happy as heck. We were proud that she had made it that far but we were heartbroken about our uncertain future.

The next ambitious goal we set together was that she would make it to my graduation. This goal was our most ambitious and elaborate yet! An entire three years? For real? Her consultants were telling us that she had ‘months’, less than a year. That is as accurate as their estimates were. It was her dream to see me in my cap and gown holding my certificate. Somehow, despite the odds, the medical opinions and all of our doubt, she made it. She attended my graduation and cried as I went to receive my diploma. It was the greatest milestone in our relationship. She told me she was immensely proud of me. She may have been proud of me but I had never been more proud of anyone in my entire life as I was of my mother on that day. She attended in a wheelchair on oxygen but looked a beautiful as ever.

It has been several months since I graduated and somehow my mum is still here. Our next goal is that she will get to see me start my PhD in September. My mother inspired me so much with her strength and willpower that I decided to do a PhD in the Microbiology of Cystic Fibrosis. We recently started a blog together to share our journey with others. We have had so many people write to us sharing similar difficulties. It has been incredible, as has our journey together. My wonderful mum has taught me everything I know and if I one day I get to be half the mother she was, I will be a happy lady. Nobody will ever inspire me as much as the lady I am lucky enough to call ‘mum’.

This post was written by Christina Kenny – please check out their blog.




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