I will never forget the date. It was Thursday 1 October 2009, 16 days after welcoming my precious new baby into the world when I received a phone call that would change my life. Within hours, my husband and I were sitting with our baby in a hospital room being told my child had a chronic, life shortening illness – Cystic Fibrosis.
Cystic Fibrosis? I had never even heard of it, yet it was a genetic illness that we had unknowingly passed on to our little boy. How could this have happened? I was numb. The following day we were whisked up to Brisbane’s Royal Children’s Hospital and were welcomed into the world of hospitals, doctors, medications and worry. It was a worry I had never experienced before. A worry that has never left.
I often feel robbed of the blissful experience of having a newborn. While my friends were basking in the glow of their perfect little babies, the first year of my son’s life was incredibly hard, unnatural and utterly overwhelming.
I always thought I would be a relaxed, carefree mother but cystic fibrosis robbed me of that, just like it has robbed my family of a lot of things. The mental and emotional stresses this disease places on us is enormous and at times it seems unbearable.
Christian is now four and we have experienced many ups and downs with his health. Cystic Fibrosis affects many of the body’s systems, including lungs and digestion. To look at Christian he looks perfectly well. Actually, as many people have told us, there is just something special about Christian.
He has a certain spark about him. Its like he knows he may live a shorter life and he is going to squeeze every drop out of every day. His zest for life is like no other. However, Cystic Fibrosis is very deceiving. If you viewed Christian’s body from the inside, you would quickly realise his little body does not function like a healthy persons.
It is a daily challenge to keep his lungs healthy and infection free. His medical regime is unrelenting, time consuming and often heart breaking. Just to stay well Christian takes over 150 tablets every week. He has hours of chest physiotherapy and airway clearance techniques weekly and also inhales expensive medication daily just to ensure his lungs do not clog up with sticky, thick mucus.
There are no days off with this cruel, debilitating disease. We can not stop treatments on Christmas day or on holidays. It is a stress that has continued day in, day out from his first day of diagnosis. Last year was the hardest time in my life. Christian fought a chronic lung infection for 9 months of the year.
During that time we endured a two week hospital admission and around 8 months of in-home treatment. I was giving Christian around 10 different medications around 20 times per day. I was literally setting alarm clocks to stay on track.
In amongst all this I gave birth to my daughter Jasmine, who is thankfully cystic fibrosis free. I look back and wonder how we got through it. I am so lucky to have the love and support of my devoted husband, Greig.
Unfortunately, we’ve recently learnt this infection has returned so the roller coaster ride continues. We’re now facing four weeks of treatment at home and if that doesn’t clear it, we will be back in hospital for two weeks, on IV antibiotics. I’m stressed to the core.
Some of the cruel facts we were first told about cystic fibrosis is that there is no cure and the current average life expectancy is 37. In amongst all this I can have days where I feel sorry for me, however really, my heart breaks for Christian. This will be his life long battle. We have to expect so much from him, day in, day out, whether it is being compliant with treatments, being brave during hospital stays or watching him run to the toilet needing to vomit from certain medications or mucus making his stomach churn. CF is relentless and sometimes it is just too much for a little boy to bear.