Saturday, September 12, 2015

Big Red Kidney Walk

A certain little miss has decided that she is going to walk the entire 2km of the Big Red Kidney walk in her walker tomorrow.  Last year she walked it holding our hands (which aided her with balance and momentum).  This year she wants to go solo.

If you would like to sponsor her all proceeds go to Kidney Health Australia to fund vital research into kidney disease.  The link to Ashlea's fundraising page is here:

A Random Update....

A random update for all the dog lovers who I'm not friends with on Facebook....

And who were so keen for us to get a dog when I was thinking about it last year...

You need to know....


His name is Jasper and we LOVE him.

He has fit into our family perfectly.

He even loves to knit...

Tuesday, May 26, 2015

Winner Winner Meatball Dinner!'s been quiet in here lately.  A few people have asked us if we are OK.  Let me reassure you all is well!  We are just busy with the ordinary busy-ness of life.  Can't complain about that!

My kids favourite Dinner On The Table .... meatballs and 'sgetti

I feel like we are moving on from all the drama of the last few years.  Immediately after Murray's brain injury and Ashlea's transplant life was chaotic.  After awhile things settled down while we came to terms with what had happened.  Now we are picking up again.  It's time to start moving forward again.  

I'm not sure what will happen with the blog?  I wonder if my kids need to have control over their online presence as they get older?  Maybe they won't want their friends reading their mother's ramblings??  I do love the connection I have with families I have met through the blogosphere though so maybe I will hang around for awhile yet?  

Whatever happens with the blog there is one thing I need to share with you all.  I have lots and lots of awesome friends - one named Rachel who has started an awesome business - making home made meals and delivering them to time poor parents (such as myself).  She also happens to be passionate about making a difference to families affected by disability.  Have a look at her promo video (you might see some familiar faces!).  If you know anyone who would be interested in buying meals, or a family affected by disability who might qualify for free meals please get in touch via her website.  This is a great business and is pretty much the only way my kids get fed each week!!! Please consider supporting Rachel in getting this business going.  If you like her video please share it far and wide to get the word out there.  Sadly for some of my overseas readers delivery is only to certain areas of Sydney at the moment.  She does have big plans for expansion but probably not THAT far!

Go to THIS PAGE for the promo video or you can view it here on youtube.

Sunday, May 3, 2015

Zoo Review

During the school holidays my sister and I took the girls to Roar and Snore at Taronga Zoo.

Koala Selfie

The whole Roar and Snore experience was really fun.  We got to go behind the scenes at the zoo, go on a night tour, have a sleepover in a tent and then get up close and personal with a variety of animals.  It was a great experience and lots of fun for the kids who are just the right age to be interested in hearing all the behind the scenes information about the animals and how the zoo works. The highlight was definitely hand feeding the giraffes their breakfast - they are such amazing animals.  

Good Morning Zoo

Ashlea coped really well with the whole experience.  I suspect she struggled to see some of the animals on the night walk but she loved the idea of having a sleep over at the zoo and was happy to be there.  The only thing that nearly derailed her was at breakfast when there was a special treat for all the guests - a didgeridoo player.  After an incredibly traumatic didgeridoo experience at school Ashlea is not a fan of this instrument.  To add insult to injury the first song that was played (for the kids of course) was ..... her other most hated thing....the Happy Birthday song. Ashlea refused to leave the tent until it was over - because of course being in a tent blocks out so much of the noise...

Hello Mr Echidna

The staff were incredibly helpful and went out of their way to make sure we could participate in the entire experience - I can't say enough about how great they were.  It did help that one of our hosts was Ashlea's awesome school teacher's just as awesome daughter (did you follow that?).  Awesome teacher has an awesome daughter who works at the zoo and rostered herself on to be our host for the night.  I'm sure she'd be just as helpful to everyone who comes to the zoo though :)

Awesome Zoo Host helping Ashlea
feed the giraffe

One word of warning.  If you are like me and have a few issues with anxiety .... and if like me you can't stand the idea of not being able to may want to know ahead of time that the zoo staff will stress (repeatedly) that you will be locked in the zoo (LOCKED IN LOCKED IN) for the night.  I may have lost my mind a little at that point.  I started to freak out and as we walked around the zoo I could feel the panic rising to the point that I thought I wasn't going to be able to stay the night.  I seriously wondered if I could leave my sister at the zoo with all the kids and do a runner.  Instead of running I took a valium and phoned a friend to talk me down from the ledge.  I phoned the only person I knew who would be willing to come to the zoo at 2am with bolt cutters to break me out if necessary. Thankfully it didn't come to that!!!

Nice kitty, soft kitty...
A (Long) Word on Accessibility...

We took Ashlea's manual wheelchair and were able to do everything on the tour.  HOWEVER the reason we were able to do everything is because Ashlea can get out of her chair and walk!  There were numerous times we had to take a longer route to avoid stairs, and a couple of times to avoid going the long way Ashlea got out of her chair and we walked her down the stairs while someone carried her wheelchair.

Sadly at best I can only say our zoo is accessible-ish.  The entire zoo can be accessed via footpath however some of the paths are steep and tricky with a manual wheelchair and the distances too far to walk if you are not steady on your feet.  It is also a long steep walk when pushing a manual wheelchair!

There are accessible bathrooms but (and I didn't check this so I'm not 100% sure) they don't have ceiling hoists.  The tents are accessible but again we left Ashlea's wheelchair outside and she walked in and climbed into bed herself.  Attaching a ceiling hoist to a tent would probably be rather unsafe but it does mean that a person who is not able to do standing transfers would really struggle or not be able to attend Roar and Snore at all.  Perhaps the zoo has a portable hoist somewhere that I don't know about???

We were able to manage our other 'stuff' by attaching Ashlea's feeding pump to a chair and we kept her medications and milk in the staff fridge.  As I have already said the staff went out of their way to make sure we were taken care of and all our dietary needs (vegetarian Aunty Carolin, gluten free Emma and salt free me) were taken care of too.

I think they were looking at us tasty morsels on the other
side of the glass

Prices (insider tip - we were able to use some of our flexible respite package to pay)

Wednesday, April 29, 2015

Love is all you need

Sometimes light bulb moments come from unexpected sources.  Who would have thought a politician could leave a lasting impression on the way I view disability?

Most Australians will remember former politician Kim Beazley.  I don't remember much about his politics, but I do remember that when he retired it was also reported in the media that his brother had died.  His much loved brother - who happened to have an intellectual disability.

Those words struck me at the time - his much loved brother.

At the time we were still new to the world of disability and I was coming to terms with what it would mean to have a child with a disability, and what it would mean for my children to have a sibling with a disability.  Would they miss out in some way?  Would they be unhappy?  Would they be resentful?  

The testimony of love for Kim Beazley's brother gave me instant clarity.

Love is the answer!

Love is what I want for our family and for my children!

I want our family to be defined by love rather than by disability or hardship.  I want my children to 'just love' their sister.  I don't want them to feel burdened by her disability or to see her as a tragedy.  I want them to just love her, and one day if she leaves this world before them for them to remember her fondly as their much loved sister.

I am getting lots of things wrong as a parent particularly as the tween years approach, but on this front I think we are doing OK.  Emma and Audrey aren't frustrated or angry that they have a sister with a disability - they love her.  

They just love her.

To check that I wasn't just projecting my wishes onto our family I asked each of them what it was like having Ashlea as a sister.

Their response?

It's awesome.

They also said it was funny.  And loud.

But both of them gave 'awesome' as their first response.

She is their much loved sister.

Thank you to the Beazley family for reminding me that LOVE is the key.

Sunday, April 19, 2015

Introducing Cheeky Charlie

We have a new addition to our family.  

Meet Cheeky Charlie

For those not on Facebook who haven't been following the story as to how I weakened and allowed a pet in the house it went something like this.

Many years ago I promised Emma that if she ever caught a pigeon or seagull she could get a pet bird. I thought I was onto a pretty safe thing!

I didn't figure on the determination of the eldest child...

I was rather reluctant to get a bird and even offered the kids a free upgrade to a puppy but they insisted they wanted a budgie so a budgie we got.  He is very cute but appears rather shell shocked at being plonked into the midst of our crazy household.

Why are they staring at me???

Ashlea singing the budgie to sleep

Sunday, March 29, 2015

3 Years Ago...

This time 3 years ago Ashlea was in the final stages of her kidney transplant surgery.

I have a tradition of taking a photo of the 3 girls on the eve of Ashlea's kidney-versary.  I suspect this tradition started on the eve of her transplant in case something went wrong and I never got the chance to take another photo of all 3 of them together.  Now it is just a fun way to document the girls'  progress.





One thing that hasn't changed is the cheeky smiles on these three!  Ashlea has had an amazing 3 years since her transplant - here's hoping there are many, many more.

I'm not sure how many anniversaries it will take until I can get through the day without reliving the events moment by moment.  I no longer do any reliving on the girls birthdays and they are nearly nine now, so I guess I have maybe a few more years of reliving yet???

Saturday, March 28, 2015

The School Project

Emma wanted me to put her Harpy Eagle project on youtube for all to see.  So here you have it...

Emma's Harpy Eagle Conservation project...

Paper mache is still fun even when you're in your forties.  Who knew?

PS If any parents want to participate in a project swap library I have a paper mache harpy eagle and a bandicoot habitat diorama in my cupboard.  Anyone have anything interesting to add?

Wednesday, March 11, 2015

Moments with Ashlea

Moment #1

Mummy where are your chocolate eggs?

That moment when your child tells you 'I'm just going to get something to eat', but you don't really pay that much attention because - hello - she doesn't eat orally.

And then you find her.

In the pantry.

With your secret Easter egg stash.

Surely getting the wrapper off a little easter egg and getting most of the chocolate into your mouth counts as some sort of a developmental milestone?

Or maybe it's just her genetic destiny?

Moment #2

That moment when your child is not happy with you because you won't push them on the swing. You leave them outside having their tanty and you hear the following...

Ouch she says,

(followed by the sound of smacking as she smacks herself or the ground)

Stop it she says.

Don't do that!  

That hurts!

What is this?  An orchestrated effort to get the neighbours to call DOCS because I won't push her on the swing?

What a little terror!

Please tell me I'm not alone in these moments!

It's funny - she likes the taste of the chocolate
but not so much the feel of it in her mouth.

Wednesday, March 4, 2015

Wordless Wednesday

I know I said 'wordless' but how awesome is this?  Have I mentioned how much we love Ashlea's teacher???