Normally, Jonnie and I going anywhere, being around anyone (within reason) wasn’t a problem. I’m fairly sociable with those I want to be around. The world isn’t a scary place. I wish I lived in a non scary world still.

Now, especially when Lauren was very little, I sort of had a panic and started being completely OCD about where we went and around who and I went a little crazy with it. The reason?? The dreaded CF!!!

Now when we went places, I think things like this; have I got her bag, meds, creon, food, fruit for creon, spare pair of clothes (she vomited A LOT!), how long till I get there, does she need meds before so it works out time to feed her when we get there. We’re here, can I see any vases full of water, flowers, that water needs changing, anything else holding water, who was that coughing, are they sick, do they look ill, who’s sniffing, if they have a cold Lauren could get it, that could lead to pseudamonas, that could lead to lung damage, that could start the process of killing my baby, I need to get out of here. My head spun everywhere we went and I was completely anal about anyone sick coming near Lauren. Things panicked me like they never had before. And the worst bit?! It was all real, possibilities that would start this horrid disease being able to conquer Lauren’s body.

I have to have my brain switched on always, making sure meds are up to date, make sure I read through my diary to not miss any of the 40-50 + appointments in the year.

I also have to constantly be aware of everything about Lauren, because not only was she still baby like in most ways, but things like blocked bowel are a possibility so if she didn’t go in 48 hours we ended up back in hospital. Any cough that wouldn’t shift in a couple of days, we call Docs, they prescribe something new and we keep a close eye on her there too. everything was so hard. It still is hard.

I do remember thinking not that long ago though, how incredibly lucky we are to have such a system as the NHS. All of Lauren’s needs and some were immense, were treated and she was being looked after by some amazing people. I signed up for all of my part. I didn’t know it at the time but my philosophy is, she is my child and all that I can do, I will do to make her safe well and happy. So I try to just get on with it because being her P.A. isn’t such a bad job after all.

I get to spend lots of time one to one with her. I get to watch her soak in the world. I get to see her spreading her joy and saying hi to everyone. I’ve watched her have melt downs and hate the examinations and I get to comfort her and tell her it’s all OK. I have a very different role to the normal mother role. 

I’m a carer first and foremost because all the things I do are to care for her Conditions and secondly I get to be mum. I don’t get to forget any of her needs during the day without consequences. It keeps me on my toes. I don’t get to sit back relax and just take it easy, because I also have a home to run. I stayed pretty delicate where my feelings were concerned for a long time. I’m still delicate, but not nearly as much as in her first few years.

I do see life as unfair. There are some really bad people in the world. And bad things don’t always happen to them. I wish they did. People should see Karma a bit quicker as far as I’m concerned. My lieelt Lauren is one of the best. Yet she suffers. She has gotten to the point where she hates Meds, and her physio and yet I just can’t not do those things. It’s so unfair. I get it. I think. Trials, obstacles, problems, they all make us stronger if we let them. If we learn to look past them we can even find joy around them. it’s so hard to do and it’s a daily struggle to do. I try. I don’t always succeed, so I will keep on trying.