As the parent of a child with a chronic condition, I have faced my own emotional turmoil since Chester’s diagnosis. I have often described it as a rollercoaster ride, and I don’t think I am far wrong. I can literally go from high to low in a matter of minutes when faced with a difficult or unplanned situation.
In the early days, post diagnosis, I struggled to cope with my own negativity, I became so focused on the negatives of his condition that I couldn’t help but think of all the things that could go wrong and all the things he might not be able to do, my mind was full of worry, his life expectancy being my biggest fear. There were even times when Chester was small I found myself afraid to go into his room to check on him through fear of what I might find and I painfully found myself thinking about life without Chester in it. I worried so much that I felt like I was under a dark cloud that would not shift. My negative mindset left me struggling to focus and I look back now, angry at myself that I let that black cloud take over, so many of my early memories of Chester tarnished and time lost that I won’t ever get back.
It is all too easy to fall into the cycle of worrying and asking myself “What if” and I am conscious that once I start falling into that black hole there is a long and difficult climb back up to get out. They often say that time heals and I agree in a sense that it does, I don’t think I can ever be over the fact Chester has CF, but I think time has allowed me to accept that this is how things will be, there is nothing I can do to change it, but what I can do is make the most of what we have. I know only too well that a negative atmosphere can breed negativity and I would not want my negativity to rub off on Chester, or on Oakley and it would be unfair of me to be the cause of that.
I am conscious that it isn’t about me at all, this is about Chester, this is something that clearly affects me but it is important to remember that in all this, he is the one living with CF and he will be the one battling with both the physical and emotional strains of living with a chronic condition. Therefore, his perception of his condition is important and as a parent it is and will continue be my job to ensure that he remains positive and fights whatever CF throws at him.
I have put my own ability to manage and cope with how I feel down to remaining positive and I strive to show both my boys that despite everything there is so much hope, I now have the ‘He may not be able to this, but look at what he can do’ attitude and I strongly believe it is extremely important that I surround my boys with that positivity, after all the saying goes “Positivity breeds success” and I whole heartedly agree.
I am under no illusion that it can be difficult to be positive when times are hard, and whilst one person may be fortunate another may not, but the least I can do is hide the hard times from them, there is a time for me to feel down and sad, but it is not in front of them. I have stopped myself from ‘Google research’ and I have unfollowed negative social media pages. I have also strived to find positive role models with incredible stories that I share with both boys, and in doing so have stumbled across some truly amazing humans with stories I regularly share with my boys.
The positivity I have from seeing people living with CF, doing the impossible, breaking world records and completely changing perceptions of people with CF is the much-needed boost I needed as a parent. Seeing people like Ben Mudge and Sophie Grace Holmes sharing their fitness journeys and inspiring young people to do their treatments are just the types of role models that newly diagnosed parents should be pushed towards.
As for the absolutely incredible achievements of Josh Llewellyn-Jones attempting and smashing a world record attempt by lifting 1 million Kilos in 24 hours are just simply beyond words, far beyond what I ever expected a person with CF to be able to do and I am truly grateful that he continues to share his own CF journey with us. If my son has half the determination Josh has displayed I will be one proud Mumma, and I will know I got it right!
I only wish I had stumbled across Sophie, Ben and Josh far sooner post diagnosis! Perhaps it would have saved me from hours of trawling through depressing out of date statistics.
They have individually helped me to be at peace with the fact that despite his condition, his fate isn’t sealed and on top of that I think it is extremely important for both Chester and Oakley when they able understand the extent of CF, to see that his condition doesn’t have to mould his future, that despite CF he has the ability to do and be whoever and whatever he wants, and that with hard work, grit and determination, success is well within his grasp.