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:

http://2015researchwalk.gofundraise.com.au/page/TeamAshlea2015

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....

WE GOT A DOGGIE!!!!!!!!


His name is Jasper and we LOVE him.

He has fit into our family perfectly.

He even loves to knit...



https://youtu.be/VbRc5L3Lnog


Tuesday, May 26, 2015

Winner Winner Meatball Dinner!

Well...it'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 escape....you 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.

2012

2013

2014

2015

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...




https://www.youtube.com/watch?v=JaSRF2SptSU


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???

Saturday, February 28, 2015

Surf's Up

What a perfect way to spend the last day of summer..

Surfing with Emma

Practising on the boards

A bit of swimming

Some waves

Thank you so much to all the volunteers at the Disabled Surfing Assocation for making this day possible.  We had so much fun and you will definitely see us again.



3 girls surfing

Sunday, February 22, 2015

Great moments in parenting...


Ashlea got this toy bird for Christmas.  It whistles a variety of songs and when you press a button you can get it to record your own voice or other household sounds as the case may be.

Imagine my parental pride when I caught Ashlea holding the bird up to her BUTT trying to get it to record one of her own farts.

Imagine my surprise and her delight when she was successful in her mission.

Parenting...win or fail?

Monday, February 2, 2015

A stranger's kindness

It started with a text message.

Morning Alison.  Friend at your disposal today.  Can come anytime b4 1330 or between 1415 and 1645.  Let me know what's most helpful. 

The date was the 19th of April 2012.  It was three weeks to the day since Ashlea's kidney transplant.  Ashlea had been home for two weeks and was going back to the hospital every day for blood tests and monitoring.  Murray had just come home from hospital but was only staying for one night before going to rehab for his newly (and unexpectedly) acquired brain injury.  To say it was a crazy time in our lives would be an understatement.

The sender was a lady from church.  I vaguely knew who she was - we had spoken maybe once or twice since our family had joined the church six months earlier.

Her first message was quickly followed up by another the next day:

Morning Alison.  Just read blog.  How can I help 2day? Do the hospital runs with Murray?  Mind the girls?  U name it and I'm there. 

This lady was determined to help even though I hardly knew her.

The texts kept coming.  On the 24th of April.  The 25th of April.  The 2nd of May.  The 6th of May. She was persistent!

Usually I would fob off a stranger's offers of help - not because I don't want or need the help but because sometimes in a crisis dealing with well-meaning strangers becomes just one more thing you have to do.  I had a hunch though that this well-meaning stranger could be worth talking to.


I responded:
You're the lady whose husband had the car accident right?  What would be good would be to catch up some time next week once kids at school and Muz at rehab - seeing as we share the 'near death of husband, rehabilitation of husband and will husband recover fully' experience.  Would love to have a cuppa with you next week.

And with that an enduring friendship was born.  The well meaning stranger went on to become one of the very few people who stood unwaveringly with me during the months of confusion, anger and frustration that were to follow.  She didn't flinch when I asked 'Why God?'  She didn't back away from the crazy, angry ranting like others were tempted to.  She stayed and listened through it all. And through it all she always pointed me back to Jesus.

In a way it's a funny friendship that we have.  We have very few interests in common (seriously she likes camping and hiking AND she JOGS - how are we even friends???) and yet we have the most important things in common.  We love Jesus.  We are both striving to persevere in difficult circumstances.

It's kind of like God knew I would need a friend just like her.

Wednesday, January 28, 2015

Back to School


Year 5 for Emma and Year 3 for Ashlea &
Audrey.  

I'm sad my holidays are over Ashlea kept saying.
I told her to tell her problems to her teacher!


Can't believe it is cold enough for jumpers on
the first day of school.  


Because of the rain we couldn't take our first day of school photos in our 'traditional' spot so I told the girls we might have to re-do them on a sunny day.  They were thrilled as you can imagine.


************UPDATE***************

After posting this on Facebook there was some discussion about how I managed to get all my kids to smile at the same time - at which point I had to admit that my trick is to take HEAPS of shots so that I can pick the one or two that worked and discard the rest.

Like these ones...



Thursday, January 22, 2015

Repost: If I Knew Then....

I am re-posting this from 2 1/2 years ago because today it got published on The Mighty as part of their series If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?  Some great articles have been posted and I am just a little bit chuffed to be included.  

********************

If I knew then...

That Ashlea would need a kidney transplant.

That she would have multiple disabilities.

That our lives would never be the same.

Would we have done things differently?

I'm sad to say that we may indeed have done things differently.  If we had been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure we would have assumed that she would have no quality of life and we may have requested she not be resuscitated at birth.  Or if we had found out that information in the first few days of her life we may have decided to withdraw care and let 'nature take its course'.*

But we didn't know.  

Thank God we didn't know!

What we also didn't know is how wrong we were to assume that someone with a disability would have no quality of life.

What we didn't know was that having a child with serious disabilities would be a blessing.

That we would love Ashlea just as she is.

That she would help us see what is really important in life.

That we would be OK with not getting the 'fairytale ending'.

What an eye opener it has been to live with Ashlea and her disabilities  We possibly would have made different choices if we had known - but we would have robbed ourselves of the joy and the delight that is Ashlea.  We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.

Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it - it wouldn't have helped because I WOULDN'T HAVE BELIEVED THEM.

Some things you have to learn by experience.

Thank God we didn't know.


* I know this is a hugely contentious issue but as a 570gm baby requiring full life support and in complete renal failure it was presented to us as an option.


(linking with Ellen Stumbo}

Sunday, January 18, 2015

Pick the twins

Who do you think looks most alike?


The ones that have the same genes?

The ones that have the same cheeky personality?

The ones that are the same size?


The girls had hair cuts today and now Emma and Ashlea are hair twins.  Sometimes I think they look more alike than my actual twins.  What do you think?


Monday, January 12, 2015

New Truths About Holidays

So we are home from our First Holiday Ever and it was FUN.

Yes I did have a freak out on the second day but after that it was all good.  Sometimes being single handedly responsible for our whole family causes me to flip out - especially when away from home and my usual sources of support or respite!

Aside from that the holiday was great and we thoroughly enjoyed it.

We did lots of swimming and lazing by the pool, we went fishing and kayaking and to the beach (I only do the beach once a year due to the degree of difficulty involved so I can cross that off the list until 2016 now).  I even had a massage and we went out for dinner for my birthday.













There is a teeny tiny fish on the end
of the line!

The Gorgeous Ones


I did learn some new holiday truths along the way:

* my friends who describe holidays as 'doing all the stuff you normally do at home with only half the resources' are right;
* I pack too much stuff;
* I'm not a big fan of fishing (too squeamish to get the bait on the line properly);
* It might be time to sign Ashlea up for swimming lessons;
* I think we need a pool;
* Holidays are fun and we need to do this again.  Anyone got any suggestions for our next venture?  

Thursday, January 8, 2015

The Beach

Aahhh... the beach.



So much fun.

So much hard work.

Once a year is enough :)

Wednesday, January 7, 2015

Wordless Wednesday

Emma is the queen of the underwater selfie

Thanks to everyone who responded to my post about holiday anxiety.  Thanks to everyone who prayed and hugs to those of you who also live with the anxiety monster.

Today we have had a very relaxing day just swimming and hanging out.

Swimming is just so relaxing.  I am becoming convinced that we NEED a pool....  Thoughts???

Joining up with Wordless Wednesday for the first time in ages.

Tuesday, January 6, 2015

Post Script to my earlier post

OK, so after my previous post I did the following.

Gave myself time out.

Phoned a friend.

Prayed.

Then made the effort to go do something fun.

It worked for which I am very thankful.

I would not want anyone reading this who suffers debilitating anxiety to think that this is all they have to do and they'll be cured.  Not at all.

This worked for me, today.

There are plenty of times when those things wouldn't even take the edge off.

But today they worked and I had a really enjoyable afternoon swimming and watching an outdoor movie with the fam.

And thank you to those who saw the post earlier and prayed.  I temporarily benched it as I didn't want it to get mailed out tonight without this update - I didn't want everyone freaking out when I was already feeling a lot better.  Hopefully now that I've had my 'moment' we will be fine for the rest of the week?

 Here's what we got up to this afternoon:











Anyone want to take a guess as to what I got for my birthday this year???

The truth about holidays...

The Truth About Holidays.  My truth about holidays….

The real reason we haven’t been on many holidays over the years isn’t because of the ‘degree of difficulty’ involved with Ashlea (and now Murray), or even because of the cost. It’s because I find them highly anxiety-inducing.

See the thing is – I have an anxiety disorder. A pretty rampant one. The only reason most people don’t know about the severity of it is because I work SO HARD to cover it up. And mostly I can cover it up.

Until I am taken out of my own environment.

Cue the panic.

So here we are on holidays and I am feeling so anxious today I can hardly function. I don’t want to tell the kids what is going on as I don’t want to trigger Emma’s anxiety. I think what makes me even more anxious now is that I can’t rely on Murray to take over looking after the kids if I need a break – not all three of them anyway.


Emma was dying to catch a fish.  Fish count: Emma 0 Audrey 2.

We did manage to go fishing this morning before I lost it. I think that was part of the problem – I started feeling really hot and low blood sugary / low blood pressure-y in the heat and then the thought of being away from home and sick (GAH – WORST NIGHTMARE) kicked in. At the moment I told the girls I just need a rest and have sent Murray to the pool with Emma and Audrey while Ashlea and I are chilling in our ‘cottage’ (as she likes to call it). Well, Ashlea is chilling. I am spiraling into crazy territory.

How can I stay here another week? I want to pack up and flee. Maybe Aunty Carolin could come up and take over and I’ll go home and have a week at home alone (to a panicking introvert that sounds VERY appealing).

I don’t know what the solution is to my anxiety. I have tried meds and mostly the side effects are so unpleasant that I can’t persist with them. I’ve tried therapy but in the moment of an anxiety attack I can’t think straight to use the techniques I’ve been taught. I hate it when I am forced to realize just how much my anxiety hinders my life. So many things that we do (or don’t do as is usually the case) are because of my anxiety. I hate how much control it has. But after trying to gain control of it for the better part of 40 years I realize I have made very little – if any – progress.

I am beyond frustrated that God allows me to continue suffering from anxiety. I am in my forties now – surely I should be over this? Why can’t he just take it away? Why won’t it just go away?? Surely it’s all in my head and I should just be able to stop it anyway???

I try to pray when I’m anxious. I know God listens and could take it away in an instant…and yet He doesn’t. I am assuming that means that somehow it will be for my eternal good and for His glory for me to go through this in the here and now. It’s kind of hard to believe that sometimes though.

I have so little faith that God will actually help me when I’m anxious that I’m going to have to rely on the prayers of others – all of you. Please pray that this anxiety would go away (and not recur or pop up in Emma) and that our family can enjoy this holiday.

WOW. That was a bit revealing wasn’t it? After a year of thankful posts that didn’t really give away a lot about me I may have now gone too far in the other direction.   Who cares.   I need your prayers.

Monday, January 5, 2015

In which we attempt a holiday...

Our first ever 'real' holiday.

EVER.


It started with us taking almost the entire contents of our house with us...

Sadly some jobs don't take a holiday

But the day ended here!

And here!!!
Tomorrow: Fishing (Emma's choice).

So much to be thankful for!