Things you should never say or ask the parent of a child with Cystic Fibrosis.

1. “It’s just a cough” for us it is never just a cough! It may well just be the sniffles or the start or tail end of a common cold, but to our children, it could be much more serious. Our children struggle to shift bugs on a daily basis and all the treatments we do are all preventative. So, no it is not just a cough, it is something that has the potential to hospitalise our children and cause them irreversible lung damage. All too often in the playground we overhear parents telling other parents how ill their child has been in the night, yet they still insist on sending them into school where they pass on their bugs to others.

2. “It’s only a bit of mud” I get this one, I really do, mud is fun for children, everyone has made mud pies and let’s face it mud kitchens are exciting and they seem to be increasingly popular in pre-school and school settings. I often think about the fact I sound like a neurotic cleanliness freak especially when I am seen becoming visibly anxious and het up over my child being around mud. Unfortunately one of the more serious bugs that a CFer can grow is found in damp warm places, places such as mud and the bug called Pseudomonas can be particularly hard to shift. It has to be treated aggressively with strong antibiotics and eradication therapy can last months and add valuable time on extra treatments. There is also potential that it may not be eradicated and this over time can cause serious lung damage. So I get it, as much as mud is fun for children, for the parent of a child with CF it is also very daunting.

image
Current eradication treatment 

3. “Don’t you worry about the long term effects of all the medicines you give him?” Of course I do, any parent would I’m sure. I give my child numerous pills and potions every day, some of which are particularly harsh and the strength of which is often questioned by GP’s and Pharmacists. I worry everyday about the side effects from some of the medications he takes such as sensitivity to the sun and mouth ulcers. I worry about over use of antibiotics and the potential future resistance. But despite my worries which I give huge consideration to, I also have to consider the consequences of not giving them, I have absolute faith in my child’s consultants’ and CF team and I know that they are the experts in this field and I have to trust their decisions. Asking this question can add even more guilt to a parent that is already overburdened.

image

4. “Cystic Fibrosis, isn’t that one where they die young?” Firstly it is just completely insensitive and as a CF parent I don’t want to be reminded of the fact the life expectancy of my child is far lower that it should be, that I face the real possibility of burying my own child later in life. If you don’t know about Cystic Fibrosis, the best way to find out more is to ask, but there are far better ways to ask than this. There have been huge advances in medicine over the years and with each new drug brings new hope for further advances in the years to come.

5. “Don’t you think you are a bit overprotective?” Yes I most probably am and I think I have good reason to. As a second time mum I expected to be able to let go a lot more than I did with my first, but CF put a kibosh on that. There are numerous hazards for people with CF which can make them unwell and as a parent it’s our duty to keep our children safe and well, my overprotectiveness is just me doing that. Having to weigh up quality of life versus the associated risk is something as a CF parent I do on a daily basis, I don’t want to be the parent that bubble wraps their child and stops all fun activities and learning but some risks are too great and although you may feel the need to call the fun police on me, I am always only acting in my child’s best interest.

6. “All that extra care must be such a burden”. Yes, keeping a child with CF well and carrying out CF care is hard work, getting up earlier than required for work to make sure treatments are done, waking up in the night to do extra physiotherapy when my child is unwell, staying up late to give extra feeds when weight becomes an issue and in our case the endless hospital admissions and appointments are most definitely hard work. Making sure without exception his treatment plan is followed, whether home or away, is hard work and requires patience at times when he is not a particularly willing participant, but a burden? My child is most definitely not a burden.

image

 

8 thoughts on “Things you should never say or ask the parent of a child with Cystic Fibrosis.”

      1. Oh I know everyday I get that one. Another one that gets me is she looks so normal… I find that insensitive. She is a normal little girl!

        Like

  1. Wow, I’m shocked you hear some of those things. How insensitive people can be. But then again, I wonder if I’d be sensitive if I didn’t know about CF so well. I watched my best friend’s daughter (Rebecca) grow up with CF, so I know so much about it. Although the book I wrote that was published in August is fiction, I made one of the character’s daughters portray Rebecca. Thought it would be a good way to bring about awareness for CF. The book isn’t about CF, but in between all the suspense and comic relief, the reader will get to know quite a bit about CF by the end. It’s actually amazing how many people couldn’t tell you a thing about CF. Thank you for your post. I am going to keep it as I am considering incorporating another character with CF in the next book I am about to start writing.

    Like

    1. That’s fantastic and great for awareness, I like to think even though I didn’t know about CF until it affected me I would have been a little more sensitive. Some people just don’t think 🤔. Thank you for taking the time to read my blog and to comment 🙂 will have to read this book.

      Like

  2. Excellent and much needed post Emma … your willingness to share is helping thousands, and those to come. Thanks for giving voice to the silent care-takers in this somewhat private world …

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s