What it was like growing up in a CF house

I have been trying to think what is actually my earliest memory of CF? The truth is I am not sure what is a memory and what is a story I have heard over the years so it now feels like a memory.

As i had said previously i was only 3 when hats was born, so i do not remember the house being any different i was brought up knowing about CF, being involved in the daily treatments having regular visits to our local children's hospital where her team were based. I do remember staying over in the family rooms whenever hats had to be admitted for intravenous antibiotics (IV). Our dad worked nights at the time so the three of us would stay over. I don't ever recall being bothered by that fact as it was all normal for us to live that way, i remember the rooms having a balcony which overlooked the car park to the main entrance.

I would attend all the regular clinic appointments with my mum and hats we had a family CF nurse assigned to us called Judith when we were still quite young and she stayed with us until hats was around 6 i think then we got Janice who stayed with us until hats was transferred to adult care when she was 19.

When we was younger hats used to have physio for chest clearance which involved her sat on your knee and lay on different sides whilst we patted her for 5 minutes on each side, this was done twice a day, I am not sure who taught me how to do physio whether it was learnt through observing our mum and dad or whether barbara hats physiotherapist taught me or both.

I always knew what medication she was on, what they were for and what times she needed which. Eventually my mum learnt to do Hats IV's so we didn't have to stay in hospital as much and i remember being allowed to draw up the water - i now know it was the flush, but my point is i was involved in the process.

Growing up everything was hard work, you couldn't get dressed and all just go out, there was this big routine we had to do every single day. It was time consuming, but i don't recall ever being annoyed at that, suppose it goes back to the fact i never knew any better.

What i do know and i do remember which was difficult was meal times, it was the most stressful time of the day, hats never wanted to eat, she never had an appetite and every meal time there was some form of argument or shouting contest and tantrum whilst my parents tried their hardest to get her to eat. All different tactics were used the most successful ones i recall which we can now laugh at today was she was terrified of hair mousse so it used to get sprayed on her high chair and she would be told it would get her if she didn't eat something. The other, there was a witch what sat on the pylon in the garden watching us at meal times. It sounds awful when you think about the tactics used but the alternative was she carried on losing weight.

I think my first bad memory of being brought up with CF from my point of view and feelings was when we were a little older, I still must have been only around aged 6. We attended the local hospital, we always alerted the CF team when we needed to attend so they would meet us in A+E and she would be seen straight away to reduce the risk of infection, she must not have been well, i remember us all being in a small side room with several nurses and doctors whilst they pinned her down on the bed and tried to cannulate her to gain IV access. That is the first time i can remember being upset and showing some form of emotion observing yet understanding what they were doing.

I hated going to the hospital as i got older, not because i wanted to play with my friends or had other things i wanted to do, but because i hated watching the same routine on every visit, hats screaming and being pinned down and having to observe it, yet i don't ever recall complaining or kicking up a fuss about going.

As we grew up we had a normal childhood all considering, we had family holidays, we played together, we fell out, we shared a room then we decided we didn't like each other then we would again decide we wanted bunk beds, the usual sister routine.

As we got older and we understood things more that was when things got more emotional, we learnt the implications of this disease and what the ultimate outcome could be.

Imagine finding a newspaper article about Cystic Fibrosis and finding out the life expectancy was only in the 40's, we always tried to shield things from hats when she was younger and to a certain extent we still do now. Mum had asked me to hide the article so she did not see it and start worrying, yet she found it and her response was, i am going upstairs to write my will (not that she had anything to put in it) but i think that was the first time she understood what it meant ultimately to have this disease. Those are the moments i found difficult growing up, not the routine, not having to learn and participate in medication regimes and physios, not even at times when i couldn't go to my friends because we had to go to the hospital but the times when things got real.

If you are reading this and you are me, or your a parent with a child with CF, if you are worried about burdening the other sibling don't. I am not damaged by it, it never had any negative implications to my life growing up i would argue now it had the opposite effect. I learnt to empathise from a young age, i learnt responsibility and what it genuinely meant to look after your sister. Given the opportunity to change anything would I? The only thing i would change would be is for hats not to have CF in the first place.