Nikki Rabold-Cowley

More than half my life

Why I’m Riding in the Big Spin

This year, I’ve put together a team called Tour De Tommy, in loving memory of my son, Tommy. Tommy was born with hypoplastic left heart syndrome and blessed our lives for five precious months. This October, he would have turned five.

Because of COVID, only a handful of people outside of our family ever got the chance to meet Tommy. That’s why it means so much that three of my closest friends are joining me on this ride. Mindy, my lifelong friend, and Stacey, NUM of the NICU at Nepean, both had the chance to meet Tommy and share in his short but beautiful life. Naomi, another dear friend, didn’t get to meet him, but has walked beside me every step of the way. Together, we ride for Tommy, for my family, and for every family who needs the love and support of Ronald McDonald House.

My connection to Ronald McDonald House (RMH) spans more than two decades, and it’s a charity that holds a very special place in my heart. My first experience was when I was 19 and living in country NSW. My eldest daughter, Chloe, was born with a cleft lip, and at just 15 weeks old she needed surgery at The Children’s Hospital at Westmead. We had to travel far from home and stay for more than a week.

I will never forget the day of Chloe’s surgery. I was terrified as they wheeled her away, and while sitting on the ward waiting, I remember smelling pancakes cooking—my absolute favourite food. A lovely lady was making them, and as I sat there eating and chatting with her, a sense of calm washed over me. That’s when I realised RMH isn’t just about keeping families together—it’s about caring for the whole family unit, recognising the stress and struggle that comes with having a sick child.

Chloe is now 24 and has had four surgeries throughout her life. Even after moving closer to Sydney, RMH gave us the comfort of being close during each one.

Our middle child, Connor, has also spent a lot of time at the children’s hospital. Born with congenital myotonic dystrophy and later diagnosed with hydrocephalus at age six, he has already had eight surgeries, from dental work to brain surgery. Once again, RMH was there—keeping us close and making sure we could face these challenges as a family.

Then came Tommy. His life was spent in PICU, and although we were fortunate to live just 30 minutes from the hospital, it still meant huge sacrifices for our family. My husband and I tag-teamed our days—one of us at the hospital, the other at home. For Connor, this meant rarely seeing both his parents together. No family dinners, just passing each other in the doorway.

RMH came to the rescue again. Even though we lived close, they gave us the chance to create memories with Tommy that will never be taken away. His 157 days of life were filled with love, and thanks to RMH, we were able to stay together, visit him as a family, and give Connor the comfort of falling asleep with both his parents by his side while still being close to his baby brother.

My connection to RMH doesn’t stop at my own family. As a NICU nurse at Nepean Hospital, I see the RMH team often. They come through our unit pushing their goodies trolley, offering families a treat, a drink, a toy for siblings, or a magazine for a worried parent. But they also look after us nurses too. No words need to be exchanged, just a cheeky smile from me, a nod from them, and suddenly the nurse’s chocolate box is open. Those little moments bring so much relief and keep a smile on the faces of the nurses who spend hours on their feet, fighting for our precious babies. Once again, RMH to the rescue.

Being the mum of children with complex needs is something you can’t ever fully describe, once you’re that mum, life is never the same. But RMH brings a sense of normality to situations no family should ever have to face.

This challenge, we ride in honour of my brave children, in loving memory of Tommy, and to support the incredible work of Ronald McDonald House, helping other families find strength and togetherness through the hardest times of their lives.