Because most of the time our children “look well”, on face value they look absolutely no different to any other child, it makes it all too easy for people to jump to the assumption that CF isn’t overly serious and easy to manage. But in order for our children to look and be well, there is a huge amount both physically and emotionally that goes on behind the scenes.
Managing treatments and medications can be time consuming and exhausting, adjusting to becoming your child’s carer as well as their parent is something parents of children with chronic conditions have to get used to fairly early on post diagnosis, but it doesn’t mean it is by any means easy.
When entering parenthood I fully accepted the responsibilities that I thought would be expected of me as a parent, what I didn’t consider was that I may find myself responsible for carrying out treatments and administering medicines that not only keep my child well in the present, but also have a huge impact on his future and life expectancy.
It’s not just the physical side of caring for a child with CF or any chronic condition for that matter that is hard work, there’s the emotional side as well. Living with CF can be likened a little to riding a rollercoaster with the ups and downs, everything can be going so well, but in a very short space of time things can go from good to bad at a surprisingly quick pace. That feeling of things swirling completely out of control is incredibly hard to cope with.
So many mixed emotions all the time, from being made up that your child has done a new physio treatment without issue to being completely gutted when a cough starts. The relief and exhilaration of a time consuming treatment ending and finding there is extra time to just be a parent and then the anger, dread and disappointment when another lengthy treatment is added to the routine.
CF affects so many aspects of our lives and at times it can feel like it’s taking over even when we try our best not to let it. Everything takes organisation and time to plan. Even something simple like a night out can take hours of planning just to make sure treatments have been done time.
I can honestly say if we didn’t have CF in our house there would be a lot more time to just have fun. I would be a little less nervous, CF has made me nervous about the silliest of things, things I completely took for granted before Chester came along. Despite this nervousness there is the need to carry on and enable Chester to just be Chester.
Without CF I would probably be a little less stressed and snappy. With so much to think about at times my temper is short, on top of life in general there’s medicine and prescription collections, appointments for CF clinic, flu jabs, sleep studies, Physio training, port flushes, and not forgetting surgical appointments.
As well as affecting my child, CF affects us as parents in so many different ways and living with CF is hard, but we are not after sympathy, we don’t need or want that, sometimes we might just need a hug, we need to know someone gets us and we need to know that we have people out there that understand some of our erratic behaviours are because of what we are dealing with behind closed doors.