Thank You Day 2017

This fortnight, I was fortunate to attend three special events – all of which are close to my heart.

Last week I spoke about WAYRBA (West Australian Young Readers’ Book Award) at a Library and Information Focused Training PD day for library staff on why I believe children’s choice awards are so important to encourage young people to read. In addition, for authors, a shortlisting on a children’s choice award is confirmation that their words have spoken to their target audience.

On Tuesday I attended the ‘Writing For Life 2017 Prize-giving Ceremony’ held by DonateLife WA and sponsored by DonorMate. I was one of three judges for the competition, alongside fellow SCBWI member Nadia L King and Brigid Lowry. It was a competition that I judged with both my writing hat, and as a transplant recipient.
For me, three entries stood out above the crowd. Not all of them won their categories, but all of them caused an emotional reaction – and that sometimes is more important than having a technically well written piece.
One of these, written from the perspective of a transplant recipient, contained a paragraph that perfectly summed up my own feelings. The other two were written from the perspective of a donor family member and both made me cry.

On Friday as a volunteer Role Model for Books In Homes, I spoke to the students at Majella Catholic Primary School during their Book Giving assembly about my lifelong love of books, and how I have made a career out of my love of reading, despite being told by high school guidance councillor that it simply wasn’t feasible. Thanks to the sponsor Mainfreight Australia, the students were each given three books to take home and treasure. It was an honour to be part of such a worthwhile program.

Seven years ago, the thought of having enough energy to simply attend these events, let alone speak would have been impossible. Seven years ago I was in Stage 1 Respiratory Failure and about to be listed on the transplant waitlist. Seven years ago, I could barely breathe let alone have enough spare breath to say a word or two without gasping.

At the 2016 DonateLife WA Honour Ceremony when asked what I would say to my donor family if I had the opportunity, I had this to say,
“The gift that results in a transplant is between strangers, but it is also a deeply personal gift, which makes the words thank you seem a little inadequate. It’s more than a physical gift – it also carries the opportunity to have a future, a second chance.
I will never meet or know the person who gave me this second chance, but I think about them every day.
So, to their family I would say, you made an important decision, one that made a great difference to my life and the best way I can show my gratitude is to take the best care of these wonderful lungs that you entrusted me with, to live life well and to the full.”

This past fortnight, I’ve shared my passion for both writing and reading and I hope that in some way I contributed to making a difference in someone’s life. Because making a difference fits my definition of living my life well and it’s the best way I can say Thank You.

Sunday 19th November 2017 is the national Thank You Day for Donor Families.

Letter With No Address

The day our paths collided, you became my lifeline. I was, you see, in a far worse position than I allowed myself to believe. At best, I had mere weeks left to live, yet somehow I convinced myself that there were months, and many of them.  That denial regarding the true state of my health gave me the determination to cling to life.

To be brutally honest, I didn’t give much thought to the origin of my new lungs, which makes my discussions seem a little clinical now. But please understand, this was a coping mechanism – I was hanging on by my fingernails, existing on hope, and although I knew someone else had to die, I didn’t dwell on it. There is a sense of desperation, a willingness to embrace any option when your time starts running out.

In my yearning to continue living, I never thought of you as a person. As an individual with hopes and dreams. Instead, donated lungs were an abstract concept, part of a selfless act that would save my life. Donated from a generous individual and with consent from a family brave and strong, who during a dark and horrible day and in the midst of their grief, still thought of others.

Reflecting makes me feel a little callous and shallow because I think about you every day now. I’m so consciously aware that these lungs, now a part of me, once belonged to you. And you are someone real. Someone who breathed, walked and talked. Someone who was happy and sad. Someone who loved and was loved. Someone who gave me much more than a second chance. Someone to whom I will always be connected, although I will never know you.

I am entrusted with the guardianship of taking care of a part of you, and with it comes the responsibility to live life well and to the fullest. Since the day your lungs became a part of me, I’ve experienced many milestones, both big and small. My extra time has not been wasted.

More importantly, there is a simple pleasure in waking each morning to take a sweet breath without coughing, without gasping, without pain. And each wonderful breath is followed by another. Because your lungs, our lungs, do what lungs are supposed to, naturally and without effort, giving me more energy to pour into the world and make a difference to those things that matter most to me.

I am not who I was before the transplant, although I am still me. My son describes my changes succinctly. I am, he says, who I was always meant to be. But of my changes, great and small, it is the ones with no explanation that fascinate me the most, as if a part of you has imprinted onto me.

The words “my donor” leave a bureaucratic taste in my mouth. To me, it reflects an impersonal nature, as if this had been an ordinary transaction between strangers. There is nothing ordinary about this; it feels deeply personal to me. You’ve given me so much more than a second chance; it’s as if the final jigsaw piece has slotted into place and now I’m complete. As long as I continue to breathe, your contribution to my life will never be forgotten. I have this fervent wish that wherever you are, you know what an impact you’ve had.

There is nowhere I can send this letter, it has no address. So instead, I’ll send two little words out into the universe and hope that somehow they find you and let you know you made a difference.

thank-you

Sunday 20th November 2016 is national Thank You Day for our fabulous organ donors and their families.

donatelife-thank-you-day-2016

Growing Up When Your Mum Has Cystic Fibrosis. Part 3

This last part of my interview with my son  deals with his thoughts when I was called for a transplant.

Part 1 deals with Jarryn’s childhood and Part 2 his decision to move to Sydney when I was listed for transplant.

 

Where were you when you heard that your Mum had been called for a transplant?

The first week at my new school I made my regular teachers aware of mum’s situation and knowing that if Mum rang the call would be important, they had all given permission for me to answer my phone if she called.

I was in film class when my phone rang. My step-brother Ronan picked it off my desk and said, “Your Mum is calling.”

I grabbed my phone and went to race outside but the relief teacher held his hand up for me to stop. Ronan explained the situation for me, but by the time I got outside, the phone had stopped ringing. I immediately rang back and Grant answered the phone. My heart stopped for a second thinking this was bad news, but Grant said, “Your Mum’s having an x-ray, she’ll be out in a minute with some news for you.”

I don’t know what we talked about while I waited for Mum to come to the phone, but the first thing Mum said was, “I’ve been offered a set of lungs.”

What was your first thought after the phone call ended?

I have never been so freaked out in my life and I wondered if I had just spoken to my mum for the last time.

What happened next?

I sat down for a while before I went back to class. Everyone asked what was going on. I hadn’t told many people that my mum was sick and they all stared at me when I said, “My Mum is going into surgery to have a lung transplant.”

There wasn’t anything anybody could do or say that would help me. I just had to wait.

And it was a long wait.

The next pieces of information arrived by text. Due to the time difference between Sydney and Perth I knew Mum would be in surgery until midnight. The first text Grant sent said that the surgery had started. I didn’t know what I was supposed to do, I felt helpless. The deputy principal let me sit in the library for the rest of the afternoon.

Waiting for the text to arrive was torture. That next one informed me that Mum’s right lung had been transplanted and they were starting on the left lung. Just after midnight, I learnt that Mum was in recovery.

In the morning, my Grandma rang to tell me she had been to see Mum and everything was progressing well. In the afternoon Grant sent a text to say Mum was off the ventilator and breathing on her own.

On Sunday , when the phone rang I thought it was Grant with bad news. But it was Mum! She didn’t say much, but I instantly felt calmer. I could hear that she was no longer gasping for breath.

Despite this, I was still worried. I was used to Mum being sick, but this felt different. I didn’t know what to expect next, and I didn’t know what the warning signs would be.

I was booked to fly to Perth a few days after Mum left hospital. I’d been warned that because Mum’s immune system was weak it was really important that I was honest if I got sick. If Mum got sick at that stage would be dangerous, so if I had a cold or other symptoms I’d have to stay at Grandma’s house. I was paranoid that I was going to catch something, so I kept my distance from everyone.

The plane ride took forever. I knew Grant was going to pick me up while Mum stayed home (keeping infection risks to a minimum) and that as soon as I got home I would have to shower (plane germs) before I could see Mum. I thought not hugging her was going to be hard, but she waved at me from the lounge room and I could see straight away that everything was okay.

All my tension melted away.

Is your mum different post transplant?

A little different, it’s like the Mum I saw at home when I was younger, everyone else sees now too. As if this is who she was always meant to be, and her old lungs held her back – that she didn’t have enough energy to be herself around other people. Now she seems to have more energy, and she’s happier, and she talks a lot more now too – but she’s still my Mum.

Jarryn and Sandi - Scotland 2013

Jarryn and Sandi – Scotland 2013