The following is written by Ruby's dad. There are times in our life where it becomes evident that Ruby's CF plays on his mind, putting it mildly. After reading this piece, you may be able to feel what it is like, loving someone with a progressive chronic illness.
Picture a railway tunnel. You know the old style brick/sandstone ones with soot on the walls and moss around the entrance. It is seen entering through the side of a mountain, just a dark opening. If you stood on the outside of this tunnel, it would stretch far off into the distance, with no visible end, with no light at the end of it, just a never-ending darkness with numerous dangers and obstacles. This is the tunnel we entered as a family when Ruby was diagnosed with Cystic Fibrosis. She was 3 days old and at the time I didn’t even realise this was the path we had embarked on.
Now picture a big old steam train, huffing and puffing, smoke pouring from its stack, wheels screeching and carriages rattling, steam whistle blasting. This train has entered the tunnel behind us and the only way out is to make it to the end before this train bears down on us. In my mind, that train represents Ruby’s Cystic Fibrosis. It is coming through that tunnel, I can hear it, I can feel it but I’m not sure how close it is. I still can’t see its ominous light, I can only feel the wind it is pushing through the tunnel. I am trying to drag us through to safety, we are running blindly. Every now and then a small light is on the tunnel wall, this is where we learn some of the dangers in the tunnel, we begin to understand the realities of negotiating this tunnel but so many obstacle still remain hidden.
Each time we trip or stumble that train gets a little closer, the noise a little louder, the rumble of its approach can be felt that bit more. We hope that we will see the daylight shining that signals the end of this tunnel. We are confident that one day the tunnel will end and Ruby will be free from this race. That train will have run out of steam or, a medical breakthrough will derail it for good. For now we can savour the moments of light and hope they increase, we can escape to another place at times and enjoy the good moments and joy her life is bringing to us but each and everyday we must re-enter that tunnel and keep on running and carrying our Ruby as far from that train as possible. There is no day off from this fight, there no cure to stop this train, only the reality that some day it will bear down on her and take her away, just like it has to so many before her. All we can do is keep her medications, treatments and physio happening each and every day, in the hope we slow the train down.
For now our job is to carry her as far as we can, then the inevitable will come and she will need to run and take up the journey herself. All the lessons we can learn about the tunnel and where all the lights are, need to be passed on and taught to her. What obstacles she will encounter, what happens if she stumbles and how we can try and stay ahead of that train will need to be imparted.
Soon she will be old enough to ask ‘why she is in this tunnel and why is she running’. I dread that day, the day she will hear the train and feel its rumble, its wind pushing behind her, the understanding of why we do all we do each and every day for her. The realities of what the train means.
Thankfully we have a great support from family, friends and her medical team at Westmead Children’s Hospital. The journey would be so much harder without these shoulders to lean on, without the good advice, without knowing people who care so much.
We need that cure to throw this train off its tracks.