Chronic illness, work and family

Having a child with a chronic illness has it's obvious challenges. However, the real impact on the family is not often recognised.

My son has Cystic Fibrosis. A disease that has consumed our family each and every day since he was born. We have been lucky, he is healthy, popular, smart, fit - all the things you would want from any child his age. It's just a lot of work.

It's a juggling act, there are things that family members have had to sacrifice. Sometimes without them even knowing. I'm constantly wondering if I've done enough. Is there some other treatment that would help him more, am I giving him enough normality, while still protecting his health? I can't tell you what an all consuming burden it has been on him, and as his primary carer, me.

The effect on his siblings has been harder to navigate. There is the fact that he gets more attention at times, or the fact that he will get away with things that his sisters would not, the effect they have had on his health when they are sick, or inadvertently introducing dangerous pathogens into his environment. There are the hospital 'tune-ups' where for 2 weeks they have to fend for themselves without their mother around and then there is the fear, that the fight will be lost and they will lose their brother and their best friend.

The emotional and mental aspect for my daughter (my son's biological sibling) is immense. She has been a 'young carer' for as long as she can remember. It's not a full time job for her by any means, but it is a role she has had to play and it is a role that she has sometimes loathed. She has also gone without a lot over the years and is now dealing with her own mental health issues, a consequence seen far too often in carers.

There have been times that it has put stress on my relationships. Protective love for someone is pretty intense. Sometimes I forget, that people who have less physical needs for my attention, still have a strong emotional need.

I've been lucky that I still was able to have a career. Thanks to some flexible work places over the years, and the support from my immediate and extended family, we have been able to function as a reasonably normal family. It would have been much harder to work full-time though. There have been times when I have tried, unfortunately my son's health would decline as a result. Luckily I also have the support of my husband and we have been able to afford for me to work reduced hours.

I wouldn't change a thing though. I love and am extremely proud of all my kids. Changing any part of our lives would mean they would be different people, with different experiences and a different view of the world. My kids are compassionate, resilient, kind and generous. They are perfect in everyway.