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Abstract

e’ — the one about how they should be extremely nice to me because I was dying. My heart hammered in my chest because I knew precisely the talk he meant.</p><p id="87bd">At the start of the year, Mr. Hort told everyone in graphic detail how to be nice to a boy in Year 4 with cancer. Some of the kids had been nice, but most avoided him, worried that cancer was like cooties and they would catch it.</p><p id="a280">The fact that I was dying wasn’t new to me. I’d known I was living with an expiry date. Long before CF had an official name, an old wife’s tale foretold that ‘the child whose brow tastes salty when kissed will soon die’.</p><p id="6b56">I’d always been open with my school friends about having CF, but the specifics were on a need-to-know basis. They knew I took tablets, and although I coughed a lot, I wasn’t contagious. But dying? That was something I hadn’t voiced aloud to them. Now the information was out there, and school was no longer a place where I was a normal kid who coughed a lot.</p><p id="2b94">Now I had a label.</p><p id="1f1e">I was the kid who was going to die. And it was a label that followed me through to High School.</p><figure id="48df"><img src="https://cdn-images-1.readmedium.com/v2/resize:fit:800/1*WCHKmWmgzBbRdaBB7Xb-lw.png"><figcaption></figcaption></figure><p id="535d"><i>31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with the national Cystic Fibrosis (CF) awareness month in Australia.</i></p><h2 id="7757">Next in the 31 Days of Cystic Fibrosis series — My Medical Team Didn’t Factor My Mum I

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nto the Equation</h2><p id="f9d3"><i>On my next clinic visit, I caught the bus to Subiaco, then walked to the hospital. I waited in the clinic for my turn, which went smoothly until they asked for my Mum.</i></p><p id="a1ea">If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here:</p><div id="16aa" class="link-block"> <a href="https://readmedium.com/your-daughter-has-cystic-fibrosis-i-was-a-new-mum-dealing-with-a-seriously-ill-child-e09d2bd7d628"> <div> <div> <h2>Your Daughter Has Cystic Fibrosis. I Was a New Mum Dealing With a Seriously Ill Child</h2> <div><h3>Day 1. A Mother’s story</h3></div> <div><p>medium.com</p></div> </div> <div> <div style="background-image: url(https://miro.readmedium.com/v2/resize:fit:320/0*UHleT67jZgkzCcy9)"></div> </div> </div> </a> </div><figure id="5a58"><img src="https://cdn-images-1.readmedium.com/v2/resize:fit:800/1*WCHKmWmgzBbRdaBB7Xb-lw.png"><figcaption></figcaption></figure><p id="7b0d"><i>📚 Writer, Storyteller, Librarian 🎤 Speaker🌹Cystic Fibrosis Warrior 💞 Lung Transplant Recipient 🤱Mother Sandi is a Cystic Fibrosis Warrior who has defied statistics since 1972. She lives with her favorite husband and two problem puppies. Join Medium today with <a href="https://sandiparsons.medium.com/membership">this referral link</a> and access every Medium story you want to read.</i></p></article></body>

31 DAYS OF CYSTIC FIBROSIS

“Put Your Head In a Bucket of Water Three Times & Pull It out Twice”

Day 7: His words labeled me as the kid who was going to die

My first taste of disability discrimination

I couldn't stop coughing. Everyone’s eyes were on me.

“Go and put your head in a bucket of water three times and take it out twice.” Mr. Hort, my Year 7 teacher, glared at me.

At first, I wondered if I’d misunderstood. But I hadn’t. My thoughts filled with outrage. There was no one I could talk to, no one who would go in to bat for me. Ours was a small school, and Mr. Hort was also the Principal.

My only option was to put my head down, keep working and try my best to stifle the cough that threatened to erupt from me with every breath.

I knew what Mr. Hort said was more than unkind. It was wrong. I didn’t know about disability discrimination then. It might have been my first experience, but it wasn’t my last.

Talking the talk

One of the Year 7 boys took me aside. He gleefully announced that Mr. Hort had delivered ‘the lecture’ — the one about how they should be extremely nice to me because I was dying. My heart hammered in my chest because I knew precisely the talk he meant.

At the start of the year, Mr. Hort told everyone in graphic detail how to be nice to a boy in Year 4 with cancer. Some of the kids had been nice, but most avoided him, worried that cancer was like cooties and they would catch it.

The fact that I was dying wasn’t new to me. I’d known I was living with an expiry date. Long before CF had an official name, an old wife’s tale foretold that ‘the child whose brow tastes salty when kissed will soon die’.

I’d always been open with my school friends about having CF, but the specifics were on a need-to-know basis. They knew I took tablets, and although I coughed a lot, I wasn’t contagious. But dying? That was something I hadn’t voiced aloud to them. Now the information was out there, and school was no longer a place where I was a normal kid who coughed a lot.

Now I had a label.

I was the kid who was going to die. And it was a label that followed me through to High School.

31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with the national Cystic Fibrosis (CF) awareness month in Australia.

Next in the 31 Days of Cystic Fibrosis series — My Medical Team Didn’t Factor My Mum Into the Equation

On my next clinic visit, I caught the bus to Subiaco, then walked to the hospital. I waited in the clinic for my turn, which went smoothly until they asked for my Mum.

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. I Was a New Mum Dealing With a Seriously Ill Child

Day 1. A Mother’s story

medium.com

📚 Writer, Storyteller, Librarian 🎤 Speaker🌹Cystic Fibrosis Warrior 💞 Lung Transplant Recipient 🤱Mother Sandi is a Cystic Fibrosis Warrior who has defied statistics since 1972. She lives with her favorite husband and two problem puppies. Join Medium today with this referral link and access every Medium story you want to read.