Hearing the phone ring, my wife Cathy and I both jumped up from our chairs.
‘How is she?’ Cathy asked down the line.
Our daughter Angela, 18, had just given birth to a baby girl, Maddy.
But while she was perfect in our eyes, the doctors had picked up on a few abnormalities.
‘She has cystic fibrosis,’ Angela said.
‘What on earth is that?’ I said.
‘It’s a disorder that affects your digestive system and lungs,’ she explained.
The truth was, Maddy could survive well into her 40s or she could pass away before she enrolled in school.
Holding Maddy for the first time, I was in love.
By the time she was two, she had us all on our toes.
Her gorgeous strawberry blonde hair flew behind her as I chased her around the garden.
‘Tag you’re it,’ we laughed together.
As she grew older, I could see myself in her.
Her love for the guitar brought my rusty skills to surface as I helped her master the strings.
Even with less than 50 per cent lung capacity Maddy never let it stop her.
When her breathing got tough she’d use a mobility scooter to whip around town, always with a smile.
And when Angela met Mark and had Mitchel and Alexa, Maddy doted on them.
Ticking off birthday after birthday, the cystic fibrosis certainly wasn’t controlling her life.
‘I’m top in my class Grandpa,’ she told me one day.
How does someone that spends more time in the hospital than school get so clever? I cooed over my smart cookie.
Part of her condition also meant she was unable to gain weight easily, so the doctors encouraged her to eat… and eat we did!
Every night we’d have ice cream and a heart to heart.
One evening, when Maddy was 17, we were tucking into two scoops of vanilla - her favourite - when Maddy looked at me.
‘Just make sure they remember me,’ she said.
By now, Mitchel was four and Alexa was two, and Maddy loved them more than anything in the world.
‘You’re not going anywhere,’ I said, confused.
She was in great health, I didn’t understand.
Brushing it off, Maddy chatted away about everything and anything.
In the weeks after though, her health deteriorated.
Her lung capacity dropped to below 30 per cent making it nearly impossible for her to breathe.
On her 18th birthday, she went to her party with an oxygen tank.
Watching her laugh with her friends, puffing on the oxygen, I smiled.
She’s the life and soul, I thought.
Seeing her zest for life made me want to find a purpose of my own.
So I decided to do the Camino de Santiago pilgrimage walk in Spain.
The 800km trek is said to bring clarity and reason.
‘But you only walk to the letter box and back,’ Cathy teased.
The next day I visited Maddy in hospital.
The doctors had decided to put her in an induced coma for two days, to give her lungs a break.
‘You get yourself right and we can walk the Camino together,’ I told her.
With an oxygen mask on, she smiled and nodded.
Kissing her forehead, I said goodbye before she was put to sleep.
But the next day, Angela called, her voice shaking.
‘She’s not going to make the night,’ she said.
In that moment, I felt my heart crack in two and I never thought I would be able to stick it back together.
That night, Maddy passed away peacefully due to complications with cystic fibrosis.
For days I just cried.
Then I decided I had to do the walk - for my girl.
Jumping into action, I trained for a year.
I even made up shirts with Maddy’s face on them.
‘So she’s close to my heart always,’ I said.
In August 2017, I set off, not only to find myself but to keep my promise to Maddy.
I’m going to take you with me, I told her, taking my first steps on the dirt road.
With all my clothes, my backpack weighed 10 kilos.
Puffing away, I didn’t think I would make it past the first day.
But glancing down, I saw Maddy sitting on my heart and I knew we could do this together.
Along the way, people would stop and ask me who was on my shirt.
‘That’s my granddaughter,’ I said proudly. ‘She had cystic fibrosis.’
One day, I was passing through a village when a local man stopped me and pointed at my shirt.
I told him about Maddy and he reached out and placed his palm on her face.
‘She will be alright,’ he whispered in broken English.
Standing together, we clasped hands and a smile appeared on his face.
Even Maddy’s death hasn’t stopped her from making people smile, I thought.
That stranger gave me the last boost I needed to finish the walk.
Thirty-five days, and 800kms later, Cathy met me at the end.
Falling into her open arms, I was a bag of bones… but Maddy and I did it.
I even raised $5000 which I donated to Cystic Fibrosis NZ, in the hope of finding a cure one day.
My purpose in life is exactly what she was doing all along, creating laughter and happiness.
And Maddy, I am trying my hardest to live just like you.
To find out more information regarding Cystic Fibrosis you can visit:
