As Cystic Fibrosis awareness week comes to an end tomorrow what do you think I would like you to be aware of? Here’s just a few…

Be aware of the kid/adult having a coughing fit, they might not be ‘ill’ and maybe just have a disease affecting the lungs. I find this one hard and if anyone near me coughs too much I have to block my ears or nearly (sometimes I actually have) throw up. But I try to be more sensitive.

Keep your germs to yourself. No one likes you enough to want to share them. Not ever!!

Be aware that if a child has a life limiting disease that they’ll probably be spoiled a little more than usual. I try to not let our spoiling change Lauren’s character. I think we’re pretty lucky that she’s just gorgeous inside out. But I’ll be damned if I save money when I know she’ll enjoy something and we’ll get to make memories together. Life is too short. Contrary to what we’re taught at church about having savings (I should listen a little 😏), I would rather die poor and know she got to live every second she could with as much joy as possible. Don’t be jealous- I’d swap holidays and iPads and things in a heart beat for no cf for Lauren.

Be aware that we’re perhaps more cautious and over worriers. Don’t judge it. Just get over it. It’s not going to change.

Be aware that even though I personally try for a healthier diet to put fat on her, as you may have seen this week, it doesn’t always work. Whatever she will eat is what is going in that day. CF people use way more energy just living in a body that doesn’t work correctly. So anything on top of just breathing needs even more calories. So go ahead and feed your kids grapes and melon… mine will be sat eating chocolate and crisps and whatever else she can. Just let it be and don’t pass comment (although most people just want what she’s having 😁).

Be aware that there are some weeks like this last one in particular where kindness goes further than you can imagine. I’m still shocked at how devastated I am that she’s not put weight on. But it’s not really the weight; it’s knowing she’s got to (most likely) have another hospital stay, another general anaesthetic, another day puking (GA’s do that too her), another scar, another regime that scares me of getting it wrong, another thing her not understanding but having to get used to, another outward physical show of her disease, another thing to remind me life is so not fair and never will be no matter how beautiful and good a person is.

There are so many diseases and conditions and people fighting every day for equality and Lauren spans across many diverse groups with her complexities. But cf is where our hearts get hurt the most. It’s terrifying to think about that she may have a brother with the same condition. Our burden to bare.

But remember above all… this face

Was how Lauren looked on her cf clinic day, undisturbed by rubbish news and grateful to have seen the Physio, dietician, nurses, doctor and a lovely receptionist because she really does love them all. And mostly so do we because the way research is going now, the care for cf has improved massively and we’re so grateful that she is under such good care. So be thankful for the NHS.

Don’t look at us with a ‘I don’t know how you do it’, because if you’re reading this from my page- I know you at least a little bit and I know you love your kids or relatives enough that you would do anything they need to keep them safe and happy and you do that every day- it’s perhaps just different to how we have to.

Lastly- be kind, you really have no idea what another person is hurting over. So just try not to add to anyone’s burden. I’m still learning this one.

Until next time… #cfawarenessweek2018 😘