Diagnosis day – Wednesday 28th October 2020. A day I will never forget. This day will remain a in my memory for the rest of my life. It has been 1 year today since I received a call telling me that Archer had Cystic Fibrosis. He was 12 days old. I will never forget that moment or the feelings that came with this news.
I had spent the day at home with my parents, they had been staying with us to help us out. As our washing machine had just died, my parents had offered to take a few loads of clothes home with them and would bring them back in the evening. The house was quiet. This was actually the first time I’d been home alone with Archer. He fell asleep on the lounge and I was getting some tasks done around the house.
My phone rang and I answered it. On the other end the women greeted me and introduced herself as the Paediatrician who examined Archer in the Hospital. I was surprised to receive her call and started making my way to the kitchen for a pen and paper. The conversation was short and went something like this:
Dr: “I’m really sorry to have to be the one to call you. Archer’s heel prick results have come back and he has tested positive for Cystic Fibrosis.”
Me: “Oh, um ok. So what does that mean?”
Dr: “Well the team at the hospital should be in touch shortly to discuss it further with you. They were just waiting for me to call you first.”
Me: *shakily* “So they’ll be able to tell me more… sorry I’m just not even sure what this means or what to do with this information.” (Starting to sob)
Dr: “I’m so sorry, I really don’t know what else to say. I’m sorry to be the one to have to tell you.”
Me: “No it’s ok, I appreciate you calling. It’s not your fault.”
Dr: “Yeah, I’m really sorry again. You should hear from the Hospital team either this afternoon or tomorrow.”
That was it. Transcribing the whole conversation a year later, it still makes no sense to me.
I stared at Archer for a whole minute saying over and over again “what does this mean?”, the panic was bubbling over. The next thing I did was Google ‘Cystic Fibrosis’ which I have since learned was a mistake. The first text that popped up was “An inherited life-threatening disorder that damages the lungs and digestive system.” The next most common piece of information was “The average life span for people with CF who live to adulthood is about 44 years. Death is most often caused by lung complications.”
With no more than those two pieces of information I called my husband Nick. I wanted to tell him in person but when he answered I couldn’t hide my tears. He was still a while away from home and picking up Finn so I just blurted it out. He kept it together and told me he would be home as soon as he could.
For the next 20 minutes or so I cried and cried and cried. I really felt like my heart was physically broken. If you’ve ever experienced a break up or the loss of a loved one before you will remember the pain in your chest that takes your breath away, that’s how i felt in that moment. Staring at my baby I kept thinking that they must be wrong, he looked absolutely perfect.
When Nick arrived home we set Finn up to entertain himself and just cried and cuddled on the lounge. Nick gave his family the news over the phone while my parents returned to stay the night a few hours later. It was painful delivering the news. We had so little information to share with them ourselves yet we all knew the importance of this diagnosis. After crying myself to sleep I made it through the night.
The following morning at 8am we received a phone call from the CF nurses who explained a lot and let us know we would be coming in that afternoon for our first visit. The next few weeks were a whirlwind of hospital visits, tests and information but I’m so grateful for the support we have received since that first day.
Over this past year I have made every effort to understand as much as I can about this disease. I have learned about the history of the disease, symptoms, treatments and the ongoing research. I have trialed, tested and streamlined our daily routine. Like anything in life it is continually changing an evolving. This news has completely changed my life and who I am as a person.
I wish I could take this away from him… but I can’t. I do my very best everyday to be grateful for the treatments that are available, the knowledge I have gained, the passion this has invoked in me and the friendships I have made with the incredible CF community.
After a roller coaster year I am grateful that I have this fire in me to keep fighting. We need a cure for this disease. We fight everyday for quality of life for our children, we continue to fight for a cure.
Thank you for taking the time to read this far. I’m not entirely sure what the point to this post is, I felt I needed this out there for myself as this painful anniversary arrived.