As #cfawareness week is upon us (18-24th June 2018) here are my thoughts I’d like my friends and family to know about…

It is relentless and I’m not shy about saying what a flippin hard task is at hand keeping this cute little munchkin away from harm.

It is hard, but Jonnie and I wouldn’t have it any other way. Whilst I don’t want sympathy… it’s also hard to give it sometimes because of all I’ve seen and do see Lauren go through. I’ll keep working on that 😉

When outings or trips are discussed my brain works overload to see if it has any dangers that I can afore see before I agree to anything. I don’t care if you think I’m overprotective or weird. Really. 😏

Nothing is simple.

I ask our lovely CF nurse some random questions. To see if the team know of bugs or germs that we aren’t aware of yet. For example, a fish tank. What are the risks- what about sand- if it’s wet then dried, does that mean it’s safe. What about sawdust- is it the same as hay and straw? What if I’m near someone with pneumonia – am I then a risk going back to Lauren? Etc etc.

There are so many more but we’ve got a stockpile of info in our brains!!

There will always be a worry and concern that we don’t know what time we have left with Lauren here on earth. Some days I’m sad and I just don’t even know how to explain why because it will seem irrational when she’s doing ‘well’. Sometimes I am just angry. I’m angry and annoyed and don’t understand or even want to understand why my child has the complexities of health and disabilities she does. If you don’t like a rant- then hang up or leave- I’m ok with that 😁 but I usually speak my mind so it’s not too different!

Time is a great source of strength though. I learn more each year and the team that look after Lauren deserve medals. Most of them anyway.

I pretty much know how much fat is in most things hahaha so when you’re eating your food near me I know how useful or not it is for Lauren! This translates to how bad it is for us or not – most of the time ha!!

I have no issues talking about poo. We’ve discussed it at great lengths with dieticians and doctors for over 9 years. I know what colour and consistence is good and what is not. Just another bucketload of info in a box in my brain haha!!

I know that whilst doctors are there to look after my child; my gut instinct is exactly what will keep me on an even (ish) keel. I don’t just do everything they say, because I know my Lauren better than anyone.

I know that essential oils help Lauren. I absolutely know she’d be so much worse off without them and that they’re helping her fragile body cope with and help fight infection. We wouldn’t be without them.

I know so many of you love and adore Lauren and show it by keeping your dirty germs away from us 😂 and I collectively high five you with great thanks. If it was your child- I would do the same.

We couldn’t do it without a great network of friends and family who support us in lots of different ways. Too many to write down. But thank you.

Lauren is, and always has been since she arrived, our number 1 priority.

Lauren makes a horrible sucky degrading disease look like a walk in the park.

#ourcysticfibrosiswarrior

Want to know anything?? Ask us- we’re not shy xx