Day 16: My son’s perspective 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.”
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Day 15: Juggling Cystic Fibrosis and a baby
I ended up breastfeeding for 18 months — not too bad for someone with malabsorption issues due to a dodgy digestion system. But I needed to eat twice as much as I normally did to maintain a healthy body weight. Juggling act Most new mothers tend to place their needs last. I had to juggle to ensure that I could continue to be a mother. Because I knew that the moment I slipped, and stopped looking after myself, CF would strike. I’ve never been the best with this coordination thing, but I quickly learned how to juggle Jarryn with hand and keep doing my treatments with the other, or shovel more food in so I could keep us both going. Popping Jarryn into the bassinet bouncer and gently rocking him with my foot, was the only way I could do physio. And I took all the opportunities I could to go and nap at my Gran’s house. When Jarryn started walking, I again modified my physio routine. This time I adapted Jarryn’s playtime so I could do breathing exercises as we played. Stolen minutes I always knew that looking after a child could pose more risk to my health than pregnancy. In many ways, my parenting practices could be viewed as selfish, but taking the time to look after myself to ensure that Jarryn continued to have a mother, was always a top priority. I took every parenting shortcut I could because I needed every extra minute I could find. Stolen minutes meant I could do my physio, or rest a little longer on the bad days. Reading has always been my way of pacing myself. When Jarryn was a baby, I’d often drive to my Gran’s house, and let her look after Jarryn while I lay on her bed and read. A sinus infection tipped my health upside down My health stayed stable, without need for hospital admissions or intravenous antibiotics until Jarryn was three — then I got a sinus infection that quickly ran out of control. It was an infection that ultimately cost me 10% of my lung function. For the first time in years, everything else failed, and I needed IV antibiotics. Fortunately, by this time, the Hospital in the Home (HITH) program was up and running. It allowed a person with CF to spend the first few days in hospital, and then continue the IV antibiotic course at home. With a toddler, I wasn’t interested in spending the three days stuck in hospital, so I convinced Uncle Gerry (my CF specialist) to let me go straight home after I had my PICC line placed. Although HITH allowed the flexibility of staying at home, it meant I was responsible for both drawing up my medications and giving myself the push dose through the PICC line. Via Cystic Fibrosis Western Australia I also had access to both a nurse and physio — which made life a little easier. After that sinus infection, IV medications twice a year became my normal, but the beauty of HITH was that I could still look after Jarryn, study, and go to work. 31 Days of Cystic Fibrosis Bonus Fact I spoke on a CF and Parenting panel when Jarryn was still a toddler. One of the audience questions was about keeping medications away from curious hands. My reply then was I had no trouble; everything was always kept well above Jarryn’s reach. That statement remained true — Jarryn never touched anything he wasn’t supposed to. Rotto, on the other hand, thinks the lovely rattling sound of the medicine bottles is fabulous. He’s learned to jump like a mountain goat, knock things over, so my medication is now locked up like the Perth Mint to protect Rotto the Rotten.
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Written bySandi Parsons - Cystic Fibrosis Warrior. |