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Wednesday, 7 May 2014


Sorry about my shouty capitals and just a warning there is a massive rant ahead! I know that everyone has their own struggles and battles but this is mine and my families. I wrote this at the start of an admission and just kept adding things in. It helps for me to put it out to the universe and not let it fester in my mind. 

I hate hospital admissions.

I hate holding you down while oxygen is taped to your face.

I hate trying to explain to you why you need the oxygen.

I hate being the one to hold you down while a 3/4 inch needle is pushed into your chest to access your port.

I hate having to wipe away your tears.

I hate having to again hold you down while they try and take blood from a finger prick unsuccessfully, not once but twice.

I hate watching the pity in people's eyes as they wheel you in the bed around to have an X-ray.

I hate trying to keep you happy when you are just over the hospital on day one.

I hate feeling useless.

I hate that we are away from your Dad, brother and sister. 

I hate waking you, my sleepy bub to have X-rays, blood tests, for doctors to listen to your chest.

I hate having to rip off adhesive from your groin, just so that the nurses can test your wee, caught in a bag stuck to you all day waiting....waiting....waiting...for that little wee sample, twice a week during admissions. 

I hate sitting and watching a monitor for those numbers to be good and the alarms not to sound if your oxygen levels dip. 

hate that sometimes the Drs and Nurses won't listen to me and my mother's intuition.  

I hate that you yell at me, asking for it all to stop and I can't make it all stop. 

I hate having to distract you while blood is once again squeezed from your finger. 8 times in 3 days is just too much!!!

I hate hearing the pained and frightened cry when they take a swab sample with a huge cotton bud up your nose. 

I hate trying to remove the stickers left from the ECG machine, they are super sticky. 

I hate missing out on my Mother's Day at home and not doing what we actually had planned for the day. 

I hate that I miss your brother's class performance on assembly. 

I hate that your brother and sister need to speak to school guidance counsellors because they are so anxious about admissions. 

I hate that I need to ask for a social worker to help me find the right words to help your brother and sister deal with your multiple admissions and the big conversation of what having CF means for your future. 

I hate that it takes 4, yes 4 nurses and myself to hold you down as they again access your port with a 3/4 inch needle! It sucks that have to do this weekly when you are unwell!!!

I hate watching your little precious body fight.




  1. Hope that there will not be another admission for some time. We love you so much. Keep well Cadel.

  2. Rant ahead & who wouldn't plus loads more! Nothing to do with what's fair or just. He's so lucky to have you - and to all have eachother. Best wishes. xox

  3. Kristy, what a raw and emotional insight into what must just be simply heartbreaking. What a wonderfully strong mother and wife you are, supported of course by (I can assume as we have never met) an amazing husband and father and your gorgeous children. Rant away and never apologise for feeling the urge to scream and shout... Wishing you all the best xxx

  4. Kristy this makes me cry ...............I know how brave you are for your little boy ............And for his brother and sister ........All the years I watched you grow up it never entered my mind this was your destiny ....You are such a beautiful person and a world class mother ..............May there be better days ahead and thinking of ...Lots of love Shirleyxxxxxooooo

  5. Thank you all for your lovely comments. I love that you all ride the emotional roller coaster with us in this journey! Thank you! 😊

  6. My heart goes out to you, your family and especially Cadel. When I read this tears were flowing down my cheeks. You are very strong and I admire the amazing person you are.

  7. I don't know what to say apart from there is hope. Lots of people live semi-normal lives. I'm 34 and have a nearly 5yr old daugher who I'm now bringing up on my own.


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