Someone I love needs a cure...

The title says it all really,

Someone I love needs a cure for cystic fibrosis. My wonderful friends have a sweet, gorgeous girl known as Rose in internet circles. She is 7 years old, bright, bubbly, cheeky, funny.... trouble. She also battles daily with cystic fibrosis. Cystic fibrosis is a genetic condition that impacts the transportation of salt in and out of cells. This in turn impacts the whole body, especially the lungs and pancreas. This is such a basic explanation - this video does it so much better then I could.

What is important to note is that CF is the most common life threatening,  , recessive genetic condition affecting Australian children. The life expectancy for a person with CF is 37 years old. 1 in 20 Tasmanian's carry the CF gene, which is one of the highest rates in the world. THERE IS NO CURE, THERE ISN'T ANY GOVERNMENT FUNDING. There isn't a prenatal screening test on offer to the general public, like there are for other genetic disorders. The first time parents learn they are carriers of the CF gene is 8 weeks after their baby's heel prick, when the test results come in.

Rose' pic from The Advocate 2011

So everyday this gorgeous 7 year old kid needs physio to help move the mucus in her lungs, she takes dozens of creon tablets to help her body breakdown and digest fats, salt tablets to keep her hydrated, antibiotics, 2 sessions on the nebuliser, and is constantly nagged by everyone who loves her. She must get asked if she's taken tablets for her food, taken her antibiotics, to do physio, do nebs a gazillion times a day. Surprisingly she only does her nut every now and then, I know she must be so sick of everyone quizzing and bossing her all day, everyday.

Then theres her parents, we've known them for years. Spanner Wielder met Papa Rose when he was 15, so they've known each other for almost 15 years now. We met Mama Rose while we were living in Geelong. Papa Rose bought her to met us and we shot some pool that night.  Mama Rose was pretty quiet, I don't think she even played a game. Maybe she was put off by my mad pool skills - more then likely she didn't want to thrash me, like everyone else was. I can't play pool. If a ball goes in the pocket its no thanks to me, purly fluke. Anyways they stayed with us that night before heading home to Bairnsdale.

9 months later Papa Rose rang to tell us about the birth of their baby girl. I don't really remember much about hearing about Rose's diagnosis, or understanding what that meant. Even when we visited just before Rose's first birthday and saw them giving her tablets in jam and the huge quantities of butter in everything, the signs telling people to wash their hands as they walked in the door, I didn't really get it. 

Join The Rose Garden on Facebook to learn more about CF and the impact it has on a family

                                          

I still don't understand Cystic Fibrosis in any great depth, and do quick searches on Google when I need more info! This year Mama Rose has been opening herself up and sharing about how she, and their family, live with cystic fibrosis.She has created a group on Facebook called The Rose Garden in which she shares their personal journey, and information, about Cystic Fibrosis. Join up to learn more.

Can you imagine fighting for your child's health daily, knowing that eventually, and far sooner then you can live with, you will lose that fight. Mama Rose has started sharing more and more of the hard stuff with me and it breaks my heart. There is nothing I can say to ease this. I refuse to offer useless cliches of "taking every day as it comes" and "god never gives us more then we can handle" cause they're crap and Rose is so much more important then a cliche about a rough patch. There aren't support groups that Mama Rose and other CF Mama's cant attend, or camps for CF kids to attend with kids living the same experiences, because CF kids cant have contact with other CF kids. It must be so isolating. 

As a friend I feel inadequate, because there are no magic words. So we need a cure, not just for people with CF, but for their whole family. And since science isn't something I am good at, I have jumped on board to help Mama Rose raise funds and awareness.

Made from recycled atlas', story books and novels these roses are PERFECT for Mothers Day

We've made what feels like thousands of paper roses to sell at Bumps, Bubs & Beyond Market at Latrobe Memorial Hall this Sunday, the 6th of May, from 9am - 1pm. We'll also be selling  donated handmade items, and raffle tickets. 1st prize in the raffle is a laptop, so let me know if you want a ticket!!! We'll also be wandering the streets with basket-fulls of roses.

Alice in Wonderland

Some of my fav's are made from atlas' and golden circle books. I'm in love with the Alice in Wonderland roses, anyone who feels the same better be at the market bright and early, and you'll have a fight on your hands!!! For those of you who wont be able to attend the market you can donate by clicking here. Make a donation of $20 and let me know at the bottom of this post and I'll take a dozen storybook roses to a local children's ward. If you love these paper flowers as much as I do and want to make some yourself, please, please donate some cash first. Every dollar counts.

I'd also really appreciate if you could share this post EVERYWHERE, because a family I love needs a cure.

Thriftyness is next to godliness

Hi all

Just a quick post to show off some fab oppie finds for the Caravan of Wighteousness. I love hitting up the opp shops and try to get in there pretty regularly. Lately I've been reminding myself to look in different places... You know how you end up with favourite sections of a shop and head straight there every time, I'm shocking for it. And in the world of oppies the greatest treasures are often in the weirdest spots.

I got this bag full of velvet scraps, the colours are to die for. They make me salivate just looking at them. The bag was only $2 and after pawing through it I'm so going back for the bag I left behind!  I'm thinking cushions in an ombre scheme, feel free to share  any ideas you may have.

I also found this awesome recipe file for $2. Its so retro and the colours are what really drew me in. This little folder will be perfect for storing all our favourite camping recipes in the caravan. We would love it if you shared your tried and true camping recipes.

My Grandad

No caravan news today, this post is in honor of my Grandad, David Victor Perry.

As you may remember I mentioned that my Grandad had cancer, and that there were no longer any treatment options. Last week my Grandad developed an infection and he passed away Easter Sunday. He was an amazing grandparent, and I want to share how special he was, and how much I loved him with you.

The hardest part so far has been the suddenness, we knew he was sick and that our time together was growing short. We didn't realise just how short though. On the morning of my daughters first birthday I couldn't sleep. I kept thinking about Grandad, I decided to get up early and write him a letter. I'd been thinking about it all week and knew mum would call in to see him on her way back from the party. I got the opportunity to tell my Grandad how special he is, how very much I love him and what an amazing influence he's had on my life. I'm so thankful that he knew this before he died. I encourage everyone to make sure they share this information with the people who have been especially loved and influential in their lives.

Abbie's 18th 2011 - (Back) Grandad, Isaac, Toby (Front) Layla & I, Abbie, Mum

Thursday I attended his funeral, and I took the opportunity to stand up and share with everyone who attended just how much we all loved my Grandad and how incredible he was. Figuring out what to say was one of the hardest things I've ever had to do. I have so many amazing memories of my Grandad, but didn't include them, because I had to be able to get through what I needed to say and because to share them all would take days.So I'm going to share with you all some of my favourite memories, photos and the little talk I gave at his service. Most of the photos are photos of photos, hence the bad quality. I'm making a pledge to take more photos, after finding I didn't have that many of Grandad and I. I share them to keep my Grandad close.

Grandad, Jeremiah (left) & I (right) - 1984

Grandad owned a dairy property in Irishtown and I have so many memories of staying there when I was younger. I loved feeding the sooky calves and going on the motorbike with Grandad. The farm had the most beautiful garden that my first Grandma, Lynn, planted. There was a raspberry cage (I think the cage was intended to keep us grandkids out.... it failed) where we would pick and eat kilos of berries, an orchard to run around in, roses everywhere ( I used to peel off thorns to stick on my nose, imagining I was a Rhino), a tree that looked like grug, in that you could crawl through the branches and become completely invisible, chickens and ducks everywhere, a pond that had a rock island with a stork guarding it..... There were so many amazing things to see and do, things that feed imagination and play. Easter egg hunts in the garden were the best, and an all in brawl as my cousins and I fought for the biggest bounty.

Grandad & I in the cow shed

My Grandad is a man of God, and lived a christian life, but I'll never forget hearing him get irrate with the cattle and swearing his head off in the cow lane. It was the only time I ever heard him swear, and it was only because he hadn't seen me sitting on the gate, waiting for him to bring the cows to the shed. 

Waiting for Grandad to bring the cows in

I remember walking through the paddocks with him and my second Grandma, Anne, checking for new calves. We came across one calf, I can't remember what was wrong with it, but it was sick. Grandad started searching for something and picked up a big chunk of wood and ended the calf's suffering. I was completely traumatised of course, I didn't understand why we couldn't nurse the calf to health, Grandma shouted at Grandad - this usually being the easiest way to get through to him. 

My Grandad loved an argument/debate. He would push all our buttons to rev us up so he could test our intellect. I don't think I ever changed his mind about one single topic. And in honesty I'm not sure he ever managed to change my mind either... I guess apples don't fall that far from trees. We're stubborn, each and everyone of us. Part of the problem is that we also both believed we were right beyond a shadow of a doubt, and neither of us would ever admit otherwise. We argued about race, immigration, god, education, babies (specifically my lack of), marriage, history...... anything that popped up usually. He laughed through them all, and somehow always managed to get the last say.

Grandad & I - Our Engagement Party 2004

Grandad had an opinion about everything. I remember he called me once and offered to buy me a wedding dress. Sounds nice right?.... Except that I wasn't engaged, but I was living with Jono. Grandad didn't like that. He wanted to know if I wanted to marry Jono, I told him that I did. Grandad thought he'd won, he'd buy me the dress, Jono and I would be married and he would  breathe easier. He couldn't understand why I said no, and why I would not be getting married without a proposal. He still loved me though, even though we didn't always see eye to eye. 

Grandad & I - 2005

He had old fashioned values, my Grandad. When I told him about applying to uni he asked me why I bothered seeings as I'd be married and pregnant soon anyway. Part of it was to get a rise out of me (mission accomplished) and partly because he believed in women as mothers, and that family life brings more richness and joy into a life then anything else.

Grandad & Isaac - Our engagement party 2004

One of my favourite stories my Grandad told me happened while he was still in school. There was a girl that he had a crush on so one day after school Grandad went over to her, flipped her skirt up and bolted. He got caned the next day. My Grandad was cheeky, and I have no trouble imagining what a little rascal he would have been.

Grandad - Christmas 2002

I could write a trillion words about my Grandad, but I'll leave you with the words I spoke at his service.

I'm so blessed to be able to stand here today and say i am the granddaughter of a remarkable man. My Grandad can not be summed up in a few short sentences. i know because I've tried.

I'm so grateful that Grandad met Layla. Grandad was at me to have kids before the ink on our marriage certificate was even dry. Grandad loved kids, and he told me that the love of a child completes a family and brings so much joy and laughter into a home. He was right, but what he failed to mention was that a Grandparent completes a family, and brings so much joy and laughter into the lives of their grandchildren.

We loved him and our hearts ache with the loss of our amazing Grandad. A Grandad who loved us unconditionally, who scolded us when necessary, who laughed with us, argued with us, held us, wanted nothing but the best for us, and was always, always there for us.

And so today our family is no longer complete, but we will always remember the joy and laughter that our Grandad bought into our lives, and that we were loved fully by a remarkable man. 

I love you Grandad, and I'll miss you.

Inter state bargain

I hope you all had a lovely Easter break and scoffed lots of chocolate!!!

As I said previously we spent the Easter break with my Grandparents in Victoria. It is always so wonderful to see them, Layla always gets very spoilt and our time together is always over much to soon.

This break was not quite the enjoyable holiday we had envisaged, but being surrounded by loving family can only help.

One great thing about going interstate for our break was the potential to buy larger, un-postable items from eBay (and vallygirl, temp, dottie etc etc....)

One great score we got for the caravan was a gas stove top. We'd been keeping our eyes peeled for one in Tassie, but gas isn't very popular here so there's not a lot of second hand options.

Whereas in Victoria there are a gazillion to choose from. We scored this little number for a measly $10!!!!

Sadly we missed out on a 3 way fridge and secondhand caravan windows. Hopefully these might pop up in Tassie or we get back to Victoria soon.

Life gets in the way

Haven't stepped foot into the Caravan of Wrighteousness in ages... or thought much about the blog either. This pesky thing called life just keeps getting in the way.

Our landlord decided to sell up, so we had to find somewhere to live. In all honesty, I had started to think that we were going to have to get the Caravan of Wrighteousness water tight and move in there. Few real estate agents will rent to the self employed or the stay at home mum's (AKA slacker scum). Luckily we found a private rental and began the mammoth task of moving in. I still haven't finished unpacking.

I also recently learnt that their was no longer anything the doctor's treating my Grandfathers' cancer could do. I've been struggling with this, my Grandfather is an amazing man  who has had an incredible influence on my life, and the fact that our time on earth together is drawing to an end is heart breaking. Please keep my Grandad in your thoughts and, if you can, donate to the cancer council http://www.cancer.org.au/Getinvolved/donate.htm?gclid=CNrq8_XCnK8CFcODpAodH18pZw
in the hopes that one day there will be a cure, and great men like my Grandfather will not suffer and be taken from us too soon.

mmmm baby's first cake

And then we had Squiggle Butt's first birthday!!! The year has gone so fast. Other preemie parents would understand just how blessed you feel to have a healthy and happy one year old. I will never forget watching Squiggle Butt fight for each breath. Her tiny chest looked like it would collapse under the strain.Luckily that image is hard to reconcile with the chunky, giggly baby she has become.

So we will not be meeting the impossible deadline set by Spanner Wielder (this deadline might help you have some insight into just how crazy/unhinged he is!). We will be vacationing with my amazing grandparents in Victoria instead.

Hoping that life will move out of the way for a bit and  I can reignite my Caravan of Wrighteouness passion. Does anyone have some petrol?... and maybe a match....