Growing Up When Your Mum Has Cystic Fibrosis

Day 16: My son’s perspective

Sandi & Jarryn in 2002

---

Sometimes, your children pick up on the strangest things. In 2015 I asked my then 20-year-old son if he could recall a specific moment when he realized that having Cystic Fibrosis made me different from other mums. His answer surprised me, he distinctly remembers realizing CF was serious when he was in pre-primary. It wasn’t the various medications I took, nor the twice-daily physio or the odd occasion that I did IV medications in the home.
These things were part of everyday life to him. Instead, the realization that CF was something different, and possibly something to be concerned about had been a single word in my vocabulary.
​Hospital.

When I attended my regular clinic visits which, for the most part, were at three monthly intervals, I referred to the visit as going to the hospital. Other people, including himself, occasionally went to see a doctor. And although he had not seen anything happen during a ‘hospital’ visit compared to what he saw when he himself when to the doctor, Jarryn noticed the difference in the word — and the fact that I went regularly.
I thought it would be interesting to ask him some other questions. I know what it’s like to have a chronic illness, but I don’t know what it was like to grow up with a chronically ill mother. Here are his thoughts:

Do you feel you missed out on anything in your childhood because your mum was sick?
Mum wasn’t sick when I was little but she coughed a lot. So, no, I don’t feel as though I missed out on anything.
I was always busy, riding bikes or my Green Machine, jumping on the trampoline, playing with the dogs, or games with my friends. Mum was always there. Sometimes she rode the Green Machine or jumped on the trampoline with me, and other times she would read while she watched me play.
Looking back now, I realize that the times she read instead of joining in were the times she was sick and needed to rest more. Back then, however, I had no clue. She was just Mum who liked to read a lot.

Were you ever scared/worried?
I knew I had to be more careful and I felt I had to stay away from my friends if they were sick in case I brought something home that could make Mum sick.
I guess the first time I really worried, was in Year 3 when Mum had to stay in the hospital for a week, mainly because it hadn’t happened before. I was told she had had a bleed, but she didn’t look hurt. I didn’t understand at the time that it was her lungs bleeding.
After that when Mum coughed up blood it made me nervous in case she had to stay at the hospital again.

Your Mum never hid the fact that she had CF. Do you think it might have been easier for you if you hadn’t known?

No, otherwise I wouldn’t have known why Mum was sick and it would have been easy to invent things that were worse.

Did you ever find it embarrassing that your mum would cough a lot?
It wasn’t that Mum was embarrassing, she was just coughing. But people would stare at me sometimes as if they thought I should have been doing something to help her.
I didn’t like that.
What was I supposed to do anyway? It’s not like I could cough for her.

Jarryn wrote an updated version in 2020 for CF Strong

31 Days of Cystic Fibrosis Bonus Fact
After Flame, my CFWA homecare physio, would finish percussion, I would always thank her for beating me. Which was all fun and games until Jarryn told his pre-primary teacher he had to go home early because Flame was coming around to beat me up.
​
31 Days of Cystic Fibrosis Extra Bonus Fact
I’d always taught Jarryn that when having a new playmate over, he should show them around the house, so they know where important things like bathrooms are. We had recently moved, and Jarryn had started a new school, and his first friend had arrived.
I was pre-preparing my IV medications for the next dose, as Jarryn took his friend through the house saying, “This is my room, this is the bathroom, here’s the fridge and that’s my mum shooting up her drugs.”

Next in the 31 Days of Cystic Fibrosis series - Hemoptysis: A Fancy Word for a Lung Bleed


I coughed up a litre of blood and drove myself to hospital.

31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
​
​If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here: Your Daughter Has Cystic Fibrosis