Tuesday, January 25, 2011

Bee in my Bonnett

Yes, I officially have a bee in my bonnett.

As a family, we have entered our first CF fundraiser/awareness event. We have entered a team in the 65k 4 65 Roses Walkathon. We are Team Ruby.

On the 5th of March Craig and other team members will be walking 65k in one day to raise money for the CF Clinic at Westmead Hospital and for CFNSW 

I feel like I am doing something. I have a goal, a purpose. I'm raising money to save my daughters life. I know that sounds melodramatic, but lets look at the facts. Let's look past her happy personality and beautiful smile and see whats inside. You would see a set of lungs full of mucus, ready to hold onto and breed bacteria, turning it into an infection, resulting in scar tissue. You would see a pancreas that doesn't work as it is too clogged up of that same mucus. You would see a re-sectioned bowel. You would see that same mucus again in the ovaries, stopping the release of eggs, leading to infertility.

Sometimes it's hard to compredend what is going on inside, when outside she is just so perfect.

But I'm getting off track here. Back to my bee. I've been buzzing around like mad, promoting our team and organising fundraising. This is so important to me that I sometimes have to take a step back and remember that not everyone has a child with CF. Not everyone feels as strongly about this as me. I have this sense of urgency about me and I don't really understand it. All I know is that money will cure Ruby's disease. I wish it wasn't like that but it is. The CF gene has been identified and has been cloned and "cured", but not permanently. They are so close to finding a cure , money pays for results, as simple as that.

I have had a few tears leak out during Team Rubys existance. The faith that I had lost in the universe (without really realising) is coming back. I have amazing friends. Hell, I even have amazing aquaintances! The amount of people that have helped us is just heart warming, it really is. Here are some amazing things that are happening for us:

My yoga teacher is donating a whole mornings takings to Team Ruby
My friend Shirley is donating 10% of her Avon sales to Team Ruby
My Tupperware lady is donating 20% of sales to Team Ruby
Our family friend Mel is walking the walk, but is also helping in a million and one other other ways, even though she is a mum and works full time
My friend Laura is giving away 3 remedial massages for us
My mothers group let me use them as an outlet, they are my best friends and I love them all
My cousin Michelle donated a manicure for us to use as a prize
My friend Caz is donating a family photography sitting to one lucky donor
My friend Anita has asked that no presents be bought for her sons birthday, just donations to Team Ruby

So, please help us out if you can! You can donate here: 

And join our Facebook page here: 

This will be our one major fundraising effort for the year


Friday, January 7, 2011

When I First Knew

I don't think of myself as a negative person. I always see the glass half full, and always try to keep an open mind about things.

But when the surgeon told us that there was a 90% chance that Ruby's meconium ileus (bowel blockage) was the result of Cystic Fibrosis, I just knew that we were part of the 90%. I wasn't thinking worse case scenario, for some reason this was the only scenario. We were told it would take about a week for a first stage diagnosis (heel prick test results).

The next day (or so) Craig went back up to the coast for a bit. I took Eliza to the playground in the hospital grounds. I remember the day really well. The sun was shining and I was actually feeling relaxed. Eliza was behaving and we were getting in some much needed quality time together. Eliza was playing on the spinny thing with an older girl, about 5 or 6 years. Her mum asked me if I had the time, and, as women do, we started chatting. She asked me if we has someone in the hospital and I told her my 4 day old baby was recovering from surgery. The rest of the conversation was sorta like this:

Her: "oh, up in Grace Ward"
Me: "yeah"
Her: "Sally was a NICU baby too and had an operation at 4 days old. What sort of operation?"
      Now, in my time in hospital, I was beginning to realise that if you pronounce NICU like nic-you and not by the letters, it means you have normally spent a bit of time there yourself. She said nic-you
 Me: "her bowel. She had a blockage"
Her: "did she have meconium ileus?"
Me: (looking at her strangely)"yes..."
Her: "oh, Sally had exactly the same thing. It was diagnosed at my local hospital and we were rushed here and she was operated on after that. We stayed here for 3 weeks and once they were happy with her bowel working again we went home"

She then called her daughter over and told her to show me her scar. The girl dutifully yanked up her top before running off to play again. You could barely see it, it was in the exact same position as Ruby's. 

Then there was a bit of an uncomfortable silence. I didn't want to ask if her child had CF and she obviously didn't want to ask if I had been told about the risk yet. I can't remember who said what, but yes, Sally did have CF. I told her we were waiting for the test results. We had a big chat after that.

It was after this event that I was absolutely certain that Ruby had CF. Any amount of doubt was eradicated. Why, out of all days, would I meet this lady and her daughter? Seeing that happy, healthy looking, energetic little girl do something so normal as play on a playground with other kids prepared me for the diagnosis. That is when I started coming to terms with what was in store for us, not a week later when we received the official diagnosis.

*The girls name wasn't Sally, I can't remember her name!

Tuesday, January 4, 2011

Eliza's Birthday

Family dynamics change when a new sibling comes along. Most parents with more than one child can attest to that! Our daughter Eliza had to adjust to so much so quickly, and without the comforts familiar to her. Her home, her friends, her toys, were taken away from her when she probably needed them most.

That's why we decided to make sure she had a proper 3rd birthday party. Her birthday is 3 days after Ruby and we were originally going to forgo a party for her this time. But she needed some time away from the hospital, and this was the perfect excuse.
 Lucky for us, we have amazing family and friends who organised a party in about a day. Craig and
I didn't have to worry about anything. There was just enough people there to make it special without it being too overwhelming. They were all people important to Eliza. I wasn't able to be there, but I really, truly didn't mind one bit. I was just happy knowing that she was having a fun day with the focus totally on her.

 When Eliza first arrived at the park with her dad, she stopped him and asked if he could please hold her hand while they walked. It took her a while to get into party mode, but with the help of her family and friends, she ended up having a fantabulous time!