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?