I feel like I have to write this post because it is concerning one aspect about the CF community in which I feel completely alone. I have noticed that a huge percentage of CF blogs are written with a pretty distinct religious (Christian) flavour.
That is just not me, it's not my family, it's not how we do things in this house. I am about as far from religious as it's possible to get. We do not teach our children about spirituality, we do not go to church (the last time I went to one was for our dear friends' wedding, and before that, my grandmother's funeral). We don't talk about God or think about him/her/it. This extends into not believing in any kind of afterlife, karma, spirits, ghosts, astrology....you name it.
I believe we are alone in this world and everything is random. There is no good or evil. There is nothing but us. Because of this, I feel it is especially important for us to be kind to one another, look after each other, and help each other, because in my view, there is no one else out there to take care of us except for us. The human species is social by nature and has a well-developed sense of empathy so for most people this comes naturally. We want to help others, seeing others in pain causes us distress, seeing others happy brings us joy.
But, I digress. From the time Victor was first diagnosed and through to today, I have searched everywhere on the Internet to find other families who truly understand what we are going through. And I have found them! I follow several blogs written by other parents who have children with cystic fibrosis (they are listed in the right hand column, if you want to check them out too!). I have been contacted by parents who have children with cystic fibrosis, and people who have CF themselves. I can't explain how amazing it is to find people who know exactly what we feel, who are travelling the same journey as us. I really needed to find these people.
I understand that faith is something that's very important to a lot of people. If a belief in God or other religious figure brings someone happiness and comfort, then that is wonderful for them, and I'm truly happy they are able to find comfort. I don't have this belief to bring me any kind of comfort. In fact, when Victor was first diagnosed, it seemed to secure my stance that there is no benevolent deity watching over us.
I cannot reconcile the thought that a kind, loving god would inflict serious illnesses upon children. That thought is what first pushed me away from Christianity in the first place, some twelve or so years ago. I cannot wrap my head around the idea that there is an omnipotent being who allows children such suffering. Now that I have my own baby with a serious illness, I feel even more strongly about it. Bad things happen to good people, and good things happen to bad people, the world is unfair and sometimes everything just sucks and there's no getting around it.
I have like-minded friends who acknowledged that such a serious diagnosis could cause me to turn back to religion, to beg for comfort and healing. In some ways I completely agree. I would absolutely love to know that there was a loving god watching out for us, helping us along, helping Victor breathe every day, taking the weight off our shoulders. But then, if such a being exists, why did he feel it necessary to give Victor this disease in the first place? Or rather, if he truly is omnipotent, why did he allow this to happen? Why has he allowed this to happen to thousands of children throughout history and thousands more into the future? And more to the point, I can't just make myself believe in something. I have searched so desperately at times, for something--anything--but the only answer I've ever received is silence. I can't ignore that.
What gives me comfort is the knowledge that Victor has an amazing team of doctors at Princess Margaret Hospital, who truly care about him, who are on the forefront of modern medicine and are doing everything they can to slow the progression of this wretched disease. I get comfort from knowing we have family and friends who love and support us, and help us when we need it. And although I would never wish this upon another person, I get comfort knowing there are others just like me who are going through the same thing we are, and thriving. I know this is not the end of the world. I know that so much progression has been made in this area of medicine and Victor won't miss out on a single thing, and I truly believe we will see more amazing discoveries made in the years to come.
Instead of praying to God for healing, we administer healing ourselves. His doctors prescribe medications and treatments that have been proven to help people with cystic fibrosis; we as his parents administer the medications and treatments every day; and Victor himself will play more of a role as he grows bigger and stronger. Right now he is helping to fight this disease by taking his medication and being compliant with his therapy, but he is a cheeky little thing and I know he will never let cystic fibrosis stand in his way.
I know that some people may be offended at what I've written here. Please understand that was not my intention. I am not saying that what anyone believes in is 'wrong'. It's just not what I believe.
My entire life, the one thing that has given me a sense of peace above all else, the one thing that can calm my mind when everything is falling to pieces, is to go outside at night and look at the stars. I consider the size of the universe, too enormous for my brain to ever comprehend, and that the stars I am looking at are so large and so ancient that everything in my world pales in comparison to their magnitude. They were there in the sky long before I ever was, and they will be there long after I'm gone, and long after any memory of me fades. I believe this is our only turn at life, this is my one blip in time of being sentient, and this is as good as it gets so we'd better make the most of it while we can.
I also know there are other people out there who feel the same way we do, and I would really love to hear from them. I may be waiting a long time, but I am prepared to wait.