We know many families struggle with the diagnosis of CF and we are interested in sharing strategies and ways that you manage the many challenges along the way.
Elli and Ian Anderson have an active toddler who has CF. This is a little insight into how they face the day to day challenges.
What do you do to keep mentally healthy?
When Oli was born premature and ill our world crumbled beneath us. We made the decision that whatever happened, however stressed, tired or grumpy we got we would always stick together. We share the same goal – only wanting the best for Oli. We talk about everything openly and honestly and support each other 100%.
The trauma surrounding Oli’s birth; CF diagnosis, surgery and the time in the Neonatal Intensive Care Unit was so difficult to deal with. Without seeking help from a psychologist I wouldn’t have been able to cope with my new life as a mum. It’s so important to recognise when you need professional help and to access it without feeling embarrassed or like a failure.
What do you do to keep physically fit?
Oli is a ball of energy! Most of our days are spent in our backyard chasing around our chooks, kicking the ball, going for walks, swimming or going to the park. We often play hide and seek or chasey through the house. Oli loves helping us bake so we like to try out new healthy recipes.
How do you stay on track with managing treatments, appointments, work, family etc?
Our number one priority is keeping Oli healthy. This means that his physio and medications are routine parts of our day. In saying that I have learnt that it’s important to be flexible. If we are invited out at the last minute to breakfast we do physio a little later or if we forget a dose of medication we catch up. We tailor these things to suit our family, for example; we initially found clinic visits and hours of waiting in pharmacy awful and we began to dread appointments. This had an impact on our mental health and we knew we had to do something to make visits family friendly. We now drop off our prescription and plan to have breakfast or lunch in Subiaco a few days later so we can collect our medications without the stress.
How do you deal with unexpected challenges?
Support from our extended family has been crucial in maintaining balance in our lives. We have a number of people who we can call for help at the drop of a hat. I find comfort in the fact I can phone the CF nurses if I have any concerns or questions about Oli.
Tell us how you enjoy family time?
We love being at home, laughing and playing together. As long as the three of us are together we are happy!
Anything further you wish to add?
Sure. We are parents of a child with a chronic illness but we are just like every other young couple trying to battle through life with a toddler! We aren’t defined by the disease.
It has taken time to go from constantly thinking of CF to it just being a small part of our lives. Spending quality time together and not taking life too seriously gets us through the tough days.
Article from RED Magazine, Edition 4, 2015.