As the year ends and the blank pages of the story book for this year opens, I find myself full of mixed emotions, for most it’s a fresh start, for me, it’s still the same CF. That said, I feel that glimmer of hope that this could be the year technological advances take us one step closer to finally being able to say our child used to have CF. Sadly I find it somewhat overshadowed by a deep sadness that has come from seeing far too many little ones pass away this past year, their fight cut short too soon and the feeling of helplessness at the apparent lack of progress to get them the precision medications they need.
I struggle when I think about the heartbreaking pain and the sadness of the parents who have lost their beautiful children and I cannot begin to comprehend the grief they face now. I only know the awful pain I feel in my dreams when CF takes over causing tragedy in my sleep, a reoccurring nightmare I have and even though only a dream it often feels too real, waking me up in tears and an awful sickly feeling.
I have spent the past few weeks struggling with a heavy mood often deep in thought about CF, something which hasn’t happened to me in a long time and something I find myself incredibly uncomfortable with. I found I was withdrawing from all CF related conversations because I felt I just couldn’t cope talking or hearing about it. I just tried to focus on the here and now, and get into the Christmas Spirit.
I began thinking about how CF affects so much, I sat watching a mother feeding her beautiful new baby without a thought for things like creon or having to rush home to fit in Physio and treatments, thinking about all the things my children miss out on because of CF. For the first time in a long time I couldn’t help but think about what my life would be like without CF in it.
I was becoming so negative in my own thoughts that I knew I had to snap out of it and I started to turn it around to try and think about some of the positive things I have found since having CF in my life.
Let’s face it, no one wants CF in their life, but we have it and there’s no changing that right now and when I actually snapped out of my mood I realised having CF in my life has taught me a great deal of positive things.
CF has taught me about strength, not only a strength in myself I never knew I had but also the huge strength in those around me, more often than not, small children. People with CF have this incredible ability to see the positive in everything, they are so incredibly resilient and I have come to realise that I have often been inspired by these amazing people that whilst fighting their own private battle are always there for each other sharing their highs and lows, picking each other up when they are down.
Having CF in my life has taught me to come to terms with the fact that it’s not possible to remain strong all the time and crying, getting angry and feeling down is perfectly normal and definitely allowed, that to be strong you will often get knocked back with difficult times, but with each time being able to reappear stronger and more knowledgeable than before.
If I didn’t have CF in my life I wouldn’t have the appreciation for time like I do now. Time is incredibly precious, CF or not, no one ever knows how long they have, so I have learned to make the most of what time we do have, doing all the things we want to do, enjoying every moment whilst making lifelong memories.
Without CF I would never know the kindness and humility I have seen from the wonderful CF community I have become part of, the people who drop everything for those in the same situation, each parent going through their own individual heartache but always there no matter what, with words of kindness and wisdom.
I have seen kindness and thoughtfulness from parents have lost their own children and even in their own immense grief, it doesn’t stop them from carrying out acts of kindness for others. I will never stop being amazed at the kindness and generosity of this wonderfully selfless community.
So whilst I hate CF and have moments where everything feels so miserable and heavy, I have to look at all the positives it has bought to my life, I have a beautiful little boy who is fighting hard and probably wouldn’t be the boy he is without CF and I can honestly say that without CF in my life I wouldn’t be the person you see today.