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Thursday, 30 May 2013

Rudely Interrupted!

Scott and I since Cadel's diagnosis have always said that CF would have to fit into our lives and as much as we practically can we don't let it interfere with our day to day living. 

The past week we have had two rude interruptions from CF and it all became too much. 

I had organised to treat some lovely friends to a special catered for high tea. It was a way to say thank you from Scott and I to friends who are forever helping us out especially when Cadel is admitted.  I organised it all from the hospital via emails and we sorted out a date that suited everyone ( not always an easy task). I kept the fact that it was catered for and a high tea a secret, well that was until CF interrupted! 

Two of the three friends kids had been sick so being good friends (one having a CF child herself too) and knowing how devastating Cadel getting sick can be said they couldn't make the afternoon tea. Well I have to say I immediately started crying, not just tears but I had my ugly cry going.  You know the one I'm talking about the one where you just have no control over it and you know that it doesn't look attractive! Definitely not the delicate cry you see in the movies! There was also the obligatory CF sucks with loads of swearing before and after those words. 

After much messaging back and forth, a phone call, spoiling my secret plans by telling the girls and a lovely, fantastic husband who cleaned up the yard in record time, we sorted it all out, had the afternoon tea in an outdoor area with no contact and we got to say thank you. It was a lovely afternoon beside the pool, waited on with lovely food and great company and we got to feel lady like with our tea cups and cucumber sandwiches, the conversation may have not all been ladylike though, mostly it was oh hell, who am I kidding that's what friends are for! 

The second interruption occurred the same day! Probably why my emotions were so high! Lorelei loves to write stories and draw pictures so I wasn't surprised when she came to me with a book she had written about our family. The words literally took the wind out of me and scared me for things to come. As most of you know Cadel has been really unwell over his life time and doesn't have the best outlook for the future. For those that don't know in September 2012 the Drs told us that Cadel is unlikely to make it to ten but then after more infections and more interventions the Drs said in January 2013 that it now may only be months ( really tough to actually put that into black and white, the first time I've done it!) Scott and I are forever hopeful that this is not Cadel's fate and we have never mentioned this to Lorelei and Xavier as its just not relevant to them right now but we will discuss it when the appropriate time arises. 

So when Lorelei came to me with her story that read these words I was fearful and completely not ready. 

" Our Family. Once upon a time there was a little boy who had CF and he was sicker then anyone. One day Cadel went to hospital because he was sick. He still gets sick when he has CF. The End. "

We make an effort to explain to the kids that all CF sufferers are different and not all are as sick as Cadel and they have met other CF kids and even met Peebo and Dagwood, the performing clown brothers who both have CF. In their world though Cadel is the sickest person they know. I know the kids know and feel like there is more than what we let on and the day that we have to explain the full diagnosis of CF scares me let alone the conversation about Cadel's diagnosis. 

So as much as daily life carries on around us and we get back into our family routines CF is always lurking in the back of our lives and waiting to rudely interrupt. BUT the way we react to these interruptions is what is important and we are forever in the good fight against the evil that is CF and even little small wins like still being able to thank our friends are wins against CF nonetheless. One day we will have a big win and Cadel will prove the Drs wrong. 


Tuesday, 14 May 2013

Finding the positives in the negatives.

Yes Cadel is admitted again and once more I have missed those moments in time for the older kids and I can't get them back. 

Today marks the 9th day of Cadel's admission and so far this admission I have missed Xavier's Mother's Day afternoon tea and Lorelei will be performing on assembly at school this week and I'll miss that too. If I listed everything I have missed for the older two kids while looking after Cadel when he is admitted it would be very overwhelming for both you and me but I'll list a few. There would be two Christmas mornings, dance open days, Taekwondo gradings, swimming lessons and Mother's Day sleep in, two Mother's Day school days, assembly performances and school holidays as well as two wedding anniversaries with hubby. 

I've cried so many tears over all of this and now I'm just getting angry. I'm angry that this crappy terrible disease takes so much away from me, my family and my friends families. I'm angry that some of the really good CF friends that we made in the last 12 months or so can't get together and have a family BBQ, kids and all, because of the risk of cross infection. I'm angry that CF doesn't get the recognition that other illnesses get because the sufferers don't look sick. I'm angry that we have to beg and plead for help from the government to only be knocked back time and time again because CF doesn't fit into the right category. 

This disease takes so much and it's robbing me of time and precious moments with all my family. I just hope that the kids don't grow up and resent me for missing these moments. I don't think they would as they have become so resilient and just take it all on board. This weekend when. I told Lorelei that I would most likely be missing her assembly performance she just looked back at me and said 'yeah I know Mum'. Lorelei also comforted Xavier when he realised I would miss an event reassuring him that it's ok because he would have Nan there.

It's hard being away from my husband too. I miss our debriefs on the couch of our days, watching our favourite TV shows together and even just kissing him goodnight.  

All of this melts away when we are home and just have fun and be a 'normal' family creating memories. Having a picnic on the floor or having movie night on a Saturday night, splashing around in the pool or running around in the back yard playing with the dogs and chasing each other. 

I may have missed some important moments but I try my hardest to create more that the kids will remember and cherish. 

As I come to the end of my therapeutic writing session I am reminded of the positives that this disease has brought into my life along with its negatives. 

Scott and my relationship has grown stronger with all the challenges we have faced. He is my strength, my courage, my best friend and my partner in crime. He makes me laugh and giggle and feel so loved. He gets up early to come and visit Cadel and I before work but also stays up late to make me dinner for the next night. 

Lorelei and Xavier are compassionate little souls who are able to cope with more than I give them credit for. 

We have met so many beautiful and special CF families who's friendships we cherish and feel like we have always known them forever. Most importantly without CF we most likely would have never crossed paths. 

I have found strength in myself to stop being a door mat and to do what is good for me. 

Found true friendship and what it is like to have a great support network surround me and my family. 

Have met some wonderful and caring staff at the RCH who inspire me everyday to chase my dream of studying to be a nurse. 

I am determined to be healthier for my kids as they all depend on me so much, especially Cadel as I am his registered carer. I have found so much more confidence since I have become healthier, I am a work in progress and have gained a lot of self esteem back. 

So as much as sometimes I want to yell out YOU SUCK CF ( well probably with more swear words) it has brought some good into our lives. 


Monday, 6 May 2013

Sentimentality vs Hoarding!

I have a confession to make.

My name is Kristy and I am a huge sentimentalist and I'm afraid it may be verging on hoarding.

We all have those cupboards or doors that barely close because of the stuff that gets shoved in there just because you can't bare to get rid of it, just in case you need it or because it holds a special memory. Well I'm hoping you all do! Please don't tell me I'm the only one.

I have to say that I have inherited it from my father and sadly one of my children seems to be going the same way. I'm not too bad, I think I have become better at getting rid of things that I no longer use but there are just some things that are too hard to get rid of.

The toughest is the baby things. I have managed to get rid of some baby items that we no longer need as we have finished our family. Although I had to fight that little pang of 'what if you need it' and the even worse ones of 'all the kids used this' as those moments frozen in time flash through my mind, as I'm handing it over, knowing that it is going to a well loved home.

Hubby just this week asked what we were doing with the high chair as at the moment it just sits in the garage in pieces. I got upset and cranky and couldn't deal with making a decision on what to do with it as that means that that chapter is closed and that is the part that makes it hard. It's the sentimental thing that all three kids have sat in that chair, eaten in that chair, fallen asleep while in that chair and made huge messes in that chair. I know things don't hold the memories, my mind does but to give away the big items like that means that there would be a big fight with those panicky pesky pangs!

Also the kids art! Boy does that get out of control. I used to have boxes for each child and kept my favourite crafty creations until that spiralled out of control and the boxes were overflowing. Now we have an art gallery were we can hang the best pictures until they get filed into the big green filing cabinet, otherwise known as the wheelie bin. All done secretly of course because if they the kids saw me I'd be in big strife. There was a good idea I had heard about taking a photo of the art them collating them all together and printing out a photo book. But then what do you do with all the photo books.

Where does it stop?

Please tell me I'm not alone in this mind of sentimentality and that everyone has those treasured every day items that you can't bear to part with, or the onesies so we can really remember how little the little ones were, or even just some of the everyday stuff that you might just need one day!