One glimmer of hope can pave the way for brighter days ahead.
In 2009, Meika and Anthony welcomed their first bundle of joy into the world, Hamish. They were excited to be new parents. Hamish wasn’t a great sleeper and the new parents noticed a grunting sound in his breathing, but the paediatric doctor didn’t find anything unusual.
Then at six months old, Hamish was diagnosed with a rare condition known as Childhood Interstitial Lung Disease and spent the next three years on oxygen 24 hours a day. But, both Hamish and his parents made it their mission to continue on with life – from family bike rides with an oxygen tank in tow, to living overseas.
Although his condition is chronic and one he will carry with him for the rest of his life, Hamish, now nine, is fiercely determined and wise beyond his years. Meika sat down with Lung Foundation Australia to talk about Hamish’s willpower and how the family got through the darkest of days, and find a silver lining.
How did you feel emotionally when Hamish was diagnosed?
It was all very scary because we didn’t know what was wrong with Hamish. We spent two weeks in hospital doing our best to entertain a six-month-old baby while he was tested for every possible condition – routinely being poked and prodded. It was awful, he would cry at every person who came in wearing a white coat. I remember asking Hamish’s specialist if he was going to die. I was trying to be brave enough to ask those questions, but the specialist was unable to give us a straight answer. We were in territory I never dreamt we’d be in.
What does a typical day look like for your family?
Hamish is in year four now and lives the life of an active school kid – afternoons are a flurry of sport activities and weekends look similar! Life is so much easier now compared to when Hamish was dependent on oxygen. Looking at Hamish now, people would be forgiven for thinking he has always been a happy and healthy child. We don’t take this for granted – Hamish lives life to the fullest.
What advice would you give to the family of a child recently diagnosed?
Trust your instinct – ask questions and expect answers. Surround yourself with people who have your best interests at heart. Be prepared to walk away from friendships which don’t support your needs. If someone offers to help you, don’t be too proud to take them up on the offer.
What has been the most challenging part of having a child with a rare lung condition?
We came home from hospital with a very open diagnosis, armed with a few phone numbers, some discharge papers and a bottle of oxygen. All we could do was go home, focus on putting weight on Hamish and cross our fingers. You never realise until you’re going through it yourself what an impact it has on your life. We needed to keep Hamish healthy and germ free to give his lungs the best chance to develop – this resulted in us avoiding public spaces and social gatherings. It is a tough ask to avoid parks or playgrounds with a toddler. We lived our lives in a bubble world at times and this became isolating. We were fortunate to be put in touch with other families going through a similar situation and were able to share notes. This helped us feel more connected to our community as we focused on establishing networks of information which would ultimately benefit Hamish.
What has been the most rewarding part of your journey?
Watching Hamish so determined and focused on his goals brings a tear to my eye. I am so proud of the way he handles himself and constantly strives to become better at each task he sets his mind to. Nothing is unachievable to Hamish. It has also been so rewarding meeting so many people along the way. Without the support of those around us, including health professionals, friends and family and even random people on the street, our journey would have been doubly difficult.
Hamish doesn’t let his lung condition hold him back – about six months ago he set himself a goal to become Junior Boy Swimming Champion. He was so determined, and he just got in there and kept excelling. He trained hard for six months and won it!
What are Hamish’s favourite things to do?
When Hamish was first diagnosed his oxygen was never far out of our sight so there was a big focus on the development of his fine motor skills – born of that is a love of reading, building Lego and musical instruments. He also loves playing AFL and cricket, mountain bike riding and of course swimming. Right now, Hamish is hoping to be selected to join his school Rock Band and practices the guitar every chance he gets!
If you need more information or support on chILD, phone freecall 1800 654 301.