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.