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.