Laurel’s journey with Riley
Tell us a bit about your family?
We are the Winiata‘s. We are a family of four who live very busy and fulfilling lives. Nigel owns and operates a Distribution Business. Laurel helps Nigel in the running of the business and is a Teacher Aide. Riley is 14 and has just completed Year 10. This year he has represented his school in the 1st XI Boys Hockey Team, represented Manawatu in the Future U15 Hockey Team, played in the Secondary Touch Rugby Team, and has also undertaken training in Touch Rugby Refereeing, and refed the summer season of both Intermediate and Secondary level of Touch Rugby. Poppy is 13 and has just completed Year 8. She has represented her school in Netball and Touch Rugby and participated in a number of Super Sport competitions for her school.
How did you get involved with Cure Kids?
We became involved with Cure Kids through our special friends, Tiff & Eva. I followed Eva’s journey, and through her journey learnt about Cure Kids. Through Tiff knowing us and the journey we were on at the time with Riley’s asthma, she asked if Riley would be interested in becoming a Cure Kids Ambassador. It was an honor and a privilege to say “Yes”.
How has it impacted your family and life?
The most challenging part of our journey is mixed. For Riley, the most challenging part was being in hospital and fighting not being able to breathe. For me, Laurel, it was the lack of proper understanding. Asthma is common, but Chronic Asthma is another story completely, but as soon as we said Asthma, the majority of people would assume they knew all about it, and wouldn’t listen to how complex Riley’s condition was, which ended up being life threatening in one situation. For Nigel, the most challenging part was being out of town with work, and hearing from me that Riley wasn’t well and we may be heading into hospital, and him not being able to be with us. For Poppy, it was waking up in the mornings with either Mum & Riley gone to hospital, or sometimes Dad too because of work, and having a friend or Grandmother here instead of her parents. Poppy became very fretful about being left alone because of this.
What has been the most challenging part of this journey?
Chronic Asthma turned us into “Helicopter Parents”. This goes against my grain, as I was, and am still, all about raising my children with independence and the freedom to learn from their mistakes. Due to Riley’s asthma, we had to become very vigilant in who he played with, whose house he went to, what activities he could undertake, what holidays we could take…the list goes on. For a long time, Asthma controlled our lives, even though we tried really hard for it not to show. It did, however, alienate us from a lot of our family and friends. It also meant that my job opportunities were restricted due to the amount of time off I needed when Riley was off school. In 2 years, we had over 2 terms worth of days off school. This equates to over 20 weeks off school. It also impacted us by not being able to do house renovations, and Poppy participating in her own school activities and not having her Mum there because I was home looking after Riley.
Your family, and Riley are so brave, how do you stay strong through the toughest of times?
Staying strong through the tough times was automatic. You go into automatic pilot. A big part of you becomes numb or void about the rest of life going on around you. Your world becomes the four walls of your home or the hospital, the beeps, the alarms, the times of the next inhalers or rounds, the Doctors asking you to repeat yourself over and over again. The tough times are the loneliest. Even though I had a husband wanting to help but couldn’t due to working, it was me who was there physically through most of it on my own, watching and willing my boy to try to breathe. Every breath was a struggle and nothing was helping. It’s automatic that you stay present in that second. It’s automatic, it’s tough, it’s lonely, but there is no where else you’d be, because it’s your kid you’re fighting for. That’s how I stay strong.
What is the most important thing for your family?
The most important thing for us as a family to keep creating memories. Celebrating the achievements, the carefree times, the laughter and love we have for each other and for our friends and family are the times we treasure and hold near.
If you could have one wish this Christmas, what would it be?
We are feeling so blessed, as due to a new medication that was introduced to Riley’s regime over 2 years ago, we feel like we are now in “management mode”. We have gone back to parenting the way that comes naturally, and have rested the helicopter, and because of that, Riley has been free to try so many new opportunities. Poppy has also had the ability to have mum & dad on hand when she needs them, not just when they’re able. However, we have a lot of very special friends who aren’t in the same boat. We love and support Cure Kids and the work they do to help fund research to help the other kids we know and love. Our family’s one wish is that all our special friends can feel what we feel…& more. We wish for a cure for all.
What is one piece of advice you would give to other parents / families going through a similar thing?
It’s hard to think of just one piece of advice, but the biggest thing I’ve always told myself, and I learnt from my good friend Tiff, is to believe in yourself and speak up. It’s hard to feel like you can when you’re sleep deprived, worrying like you never knew you could be, scared like you’ve never known before. But you are the only voice for your child. You do know what’s best. Listen to the quiet voice within, that’s your gut instinct. Believe it and speak it. Sometimes it may not be listened to, but keep speaking, as the one person who will make a difference in that moment for your child, will listen. And above all, never give up HOPE.