After launching my mum’s moment project last weeks I’ve been getting some emails nominating some truly brave women. It’s going to be so difficult to pick someone for the photography session. There are so many deserving women and mum’s giving it all for their families.
Hearing these stories gives a profound perspective on hardship. I spent last month frustrated with computer problems and feeling like there just weren’t enough hours in the day for work, kids, housework, etc, the stuff lots of us juggle on a daily basis. But WOW, other people’s stories can instantly remind you to not sweat the small stuff. That those small hurdles we face are nothing by comparison. Living in the moment is where it’s at and being grateful for what we do have. Say for example the health of your children..
I’d like to introduce Hayley who has been nominated by her sister and best friend Tammy. Hayley has two children Kai (4) and Dahlia (6) who are both suffering from cystic fibrosis. That’s right, not one but both of her kids. This year alone Hayley has already spent over 50 days in hospital with both children dealing with illnesses related to their cystic fibrosis.
For those not sure what the condition is the Cystic Fibrosis Federation Australia offers this information:
“Cystic Fibrosis (CF) is the most common, genetically acquired, life-shortening chronic illness affecting young Australians today. It primarily affects the lungs and the digestive system, however, it also affects a number of other organs and systems. Complications increase with age, requiring ever increasing levels of (self) care and support. On average one in 25 people carry the CF gene (most of whom are unaware they are carriers). There is currently no cure. People with CF develop an abnormal amount of excessively thick and sticky mucus within the lungs, airways and the digestive system. The mucus causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections which lead to irreversible damage. Lung failure is the major cause of death for someone with CF. From birth, a person with CF undergoes constant medical treatments and physiotherapy. In Australia, one in 2,500 babies are born with CF, that’s one every four day.
Management and treatment of CF is lifelong, ongoing and relentless. A person with CF may consume up to 40 capsules daily to help digest food and may need to do up to three hours of airway clearance each day.
Treatment generally involves:
- Intensive daily physiotherapy to clear the lungs
- Enzyme replacement capsules with food to aid digestion
- Antibiotic therapy to treat lung infections
- Aerosol mist inhalations via a nebuliser to help open the airways
- Salt and vitamin supplements
- A nutritious, high calorie, high salt, high fat diet
- Exercise – important to help clear the airways and build core strength”
Often Hayley’s children require hospitalisation at separate times meaning that not only does Hayley have to worry about her ill child but she has to spend a huge amount of time away from the other and misses out on events we take for granted like being there when our children receive awards, start kindy, etc. I can only imagine there has been a few birthdays and christmas’ spent at the hospital too.
Every day Hayley’s day is a myriad of treatments, medications & appointments for the children and with both Dahlia and Kai requiring physio once or twice a day which can take anywhere from 30 minutes to an hour per child. With that type of schedule there would be little time left for mum. Hayley obviously has huge support from her sister Tammy, who thinks Hayley “takes it all in her stride, and could do with some pampering”. Tammy, thank you so much for sharing Hayley’s story. I’m truly astounded by the resilience and strength people show when they are thrown these types of challenges.
You can find out more about Cystic Fibrosis at http://www.cysticfibrosis.org.au
If you know somebody who deserves to be nominated you can do that below: