As I sit here in the sweltering heat of the Caribbean (not boasting……Well ok, maybe just a little) having just finished my book ‘A son for tomorrow’ by Alice Peterson based around the life and death of Alice Martineau, a singer who lost her battle with CF, a book that has taken me some time to pluck up the courage to read, I would be lying if I said I’m not thinking about Chester and his Cystic Fibrosis.
Wondering where his story will lead him, will he have a wife? children? Will he lead a life that allows him the freedom to travel as we have done? What will his chosen career path be? Will he ever see a life without CF?
I wonder if he will resent being called brave or inspirational as Alice did? If his CF will cause him to be as driven and determined as Alice was. I already see so much fight in him I find it hard to imagine that he wouldn’t have her determination to succeed.
Life for anyone is uncertain, we never truly know what is in store for each of us but for Chester, we know only too well what could potentially be in store for him.
I feel guilty sat here on holiday without my boys, even more so that I felt I needed a break from being “Mummy” and a break from CF, especially when I know full well that is something that just isn’t on the cards for Chester, he doesn’t get a break from it; so I do feel incredibly selfish for needing this time away.
I felt odd packing my suitcase, a ritual I am more than used to doing, but this time I found it odd that it took little more than half an hour and I was fully packed and ready to go. No need to consider fridge packs, face masks, hand luggage, meds, Physio equipment and not forgetting snacks and toys to aid in occupying kids on the journey.
I watch kids playing in the turquoise waters, seemingly carefree, being careful not to assume all is perfectly well and “normal” as many watching us may do; oblivious to the fact our child is always fighting on the inside. I find myself not jealous but perhaps envious watching small children help themselves to ice-cream from the all you can eat buffet not having to worry about taking a handful of pills with it.
I wonder what life would have been like if CF hadn’t entered it. How easy would it be? One thing is for sure, I wouldn’t have met the lovely ladies I now call my best friends, and I can’t imagine not having them in my life. I probably wouldn’t appreciate the beauty of life like I do now. I would probably be far less appreciative of time, knowing now that a lot more can be forged into one day than one would think. Most importantly I don’t think I would ever appreciate something as simple as the ability to take a breath and fill my lungs with fresh air like I do now.
I often wonder if Chester would be the same without CF, would he still be as cheeky and mischievous, would he be as strong-willed and most importantly would he still be as brave? All pointless things to be thinking about, but something I think about all the same.
Sitting here I am missing my boys, always worrying in case something happens and I am not there with them, I find myself trying to occupy my wandering mind, being so used to being constantly on the go makes it difficult to sit and actually do nothing, and I find myself already planning the next family adventure, if there’s one thing that I can be sure of and have control over, it’s being sure to make the most of life and live for the now. I don’t want any room for regrets and I certainly don’t want to ever say CF held Chester back.