Friday, September 28, 2012

Wednesday, September 26, 2012

Wordless Wednesday: COFT

To counter the rampant iPad addiction in our household I have introduced Compulsory Outdoor Fun Time (COFT).

It has been met with mixed reactions...





At least I've got one who gets into the spirit of it...







Monday, September 24, 2012

Thankful

I am going to follow up last weeks ugly post with a thankful post - because I have been reminded this week of how much I have to be thankful for.

The first thing I have to be thankful for is that people are obviously still praying for us.  Since that post last Monday I have had an abundance of good things including:

  • a basketful of groceries from our church family

  • a gift of cash at just the right time.  A dear bloggy friend is coming to visit us next week and I was wondering how we would be able to afford to go out and have some fun with her.  I even thought to myself wouldn't it be lovely if God just 'dropped some money into our laps' so we could enjoy the school holidays.  Of course I didn't expect it to happen.  And then He dropped some money into our laps.  On the first day of the school holidays.

  • the sunshine - what a fabulous start to the holidays!

  • brunch in the sunshine, morning tea, afternoon tea, a lunch and two dinners with kindred spirits - all in the space of a few days.

  • and to top it off a little Ashlea miracle.  Just when I thought there might not be any more milestones from her (I was told that children with CP typically reach their physical potential by age 6) she did this:

Look Mum - no hands.  She stood without holding on for at least 10 seconds - and then she did it again and again!





So you see I have many, many things to be thankful for.

Friday, September 21, 2012

Indulge Me

This week I finally got around to converting all of my video tapes of the girls in the NICU to DVD....which means I can now upload them to youtube and share them with you all (just what you've all been waiting for I know!).

Here is Audrey's story - I was very restrained and condensed my many hours of video down to just 2 minutes - and I took out anything gory and all the NICU sounds (those wretched alarms) so as not to traumatise any fellow NICU veterans.

The Story of Audrey:


Wednesday, September 19, 2012

(Not So) Wordless Wednesday: Ashlea-ism

Poor Baby Duck has suffered a new indignity this week: the asthma puffer.  She is not a fan.




Her description of her asthma wheezing was pretty cute though:

I like a cat!

(think purring rather than meowing).


She is pretty accurate with her descriptions.

The last time she had a little vomit she had no other way of describing it than saying:

I dropped some carrots...

I have no idea how she came up with that description but it is so apt that we have adopted it into our household vernacular.


Have your kids said anything so cute you started saying it too?


* Thanks to photographer Audrey for taking the pic.

**  For those who have Foxtel and haven't seen our original story RPA reruns will be on again starting tonight - Biography Channel (117) at 7pm  - for 4 nights (the twins birth happens in the 3rd episode).


Aussie Wordless Wednesday

Monday, September 17, 2012

Ugly

What do you think is the ugliest emotion?

I reckon it has got to be anger.

I am so angry at the moment.  Angry at God, angry at Murray, angry at myself, angry at everything that has happened.  Pretty much angry at everyone and everything.

It's ugly.  I am not a nice person to be around at the moment.  Even I can't stand to be around me.  I don't know what the answer is either.  I've been hoping it will just go away on its own but that doesn't appear to be happening.

It's funny because I never went through a really angry stage with Ashlea.  As much as there were times when I was incredibly frustrated, for the most part I wasn't angry.  I was sad.  All the time.  Sad for Ashlea, sad for us, and also a kind of 'collective sadness' for all the sick children we would meet.

This time around it's different.  This time I'm angry.  Fed up.  Frustrated.  Had enough.  Want to get out.  Angry.

It's ugly.

A friend posted this on facebook recently.  It is a hymn by John Newton (who wrote Amazing Grace). I found it helpful.  It doesn't really help with my anger problem, but I guess the idea that God is using these circumstances to bring about His purposes and make me more like Him does give some comfort.

Here is the hymn on youtube:




And if hymn singing 'isn't your thing' here are the words alone.


I asked the Lord, that I might grow
In faith, and love, and every grace;
Might more of His salvation know;
And seek more earnestly His face.

Twas He who taught me thus to pray,
And He, I trust has answered prayer;
But it has been in such a way,
As almost drove me to despair!


I hoped that in some favored hour,
At once He'd answer my request;
And by His love's constraining power,
Subdue my sins--and give me rest!

Instead of this, He made me feel
The hidden evils of my heart;
And let the angry powers of hell
Assault my soul in every part!

Yes more, with His own hand He seemed
Intent to aggravate my woe!
Crossed all the fair designs I schemed,
Cast out my feelings, laid me low!

"Lord, why is this!" I trembling cried,
"Will you pursue your worm to death?"
"This is the way," the Lord replied,
"I answer prayer for grace and faith."

"These inward trials I employ,
From self and pride to set you free;
And break your schemes of earthly joy,
That you may seek your all in Me!"


* I have gone with the modern translation of verse 5 which uses 'cast out my feelings' rather than 'blasted my gourds'.  I don't really know what it means to have one's gourds blasted but it is a pretty awesome description don't you think.  Anyone else feel like they've had their 'gourds blasted?'  How did you get through it??


Wednesday, September 12, 2012

Sunday, September 9, 2012

All the Fun of the Fair

A few years ago I would have never thought this would be possible...






There were still a few things that were too much for her to cope with but on the whole Ashlea had a GREAT day today at Luna Park thanks to Bandaged Bears Big Day Out.

It gives me such a buzz to see her enjoying the same things as her sisters.  This has been a LONG time coming!

Friday, September 7, 2012

Friday Update

A little Friday afternoon update...

Murray is almost ready to finish his rehab program.  Unfortunately there are no places available for him with the Commonwealth Rehabilitation Service at present so he may go back to school for awhile.  There is a basic computer course at TAFE that he is well and truly over qualified for but may attend as preparation for returning to work.

Emma started the Enhanced Exposure Therapy trial for her anxiety this week.  Without realising what it would entail she picked 'fear of vomit' as her biggest phobia and now has to work through a hierarchy of exposure related tasks.  She is not looking forward to going back as she knows that next on the list is looking at pictures of vomit.  And yes I do have to stay in the room with her during the session.  And yes I do share the vomit phobia so it is going to be fun for both of us.

Ashlea is an absolute delight.  She is having a ball at school, her kidney function is great, she is happy and cheeky and putting her Ashlea spin on everything as usual.  For example - the Ashlea spin on Sunday school - can you work out what she is talking about here:

Me:   What was the story about in Sunday School Ashlea?

Ashlea:  It was about the pigs.  He want to eat their food.    


Audrey is being her lovely low-maintenance self.  She was very proud of this piece of work she brought home from school yesterday.  The teacher says its not time to worry about her progress. Yet.  But those hobos and their rambopants have me a little worried...



I have had a very up and down week which has included the following:
  • arguing with nurses about supplies (down - I lost that round),
  • scoring free tickets to Bandaged Bear's Big Day Out (up)
  • wondering how we're going to afford to pay the bills and buy food (down)
  • having to deal with Centrelink (way down)
  • but then receiving 4 roast dinners, a bag of fruit and veg and having my Carers Payment approved (up again)
  • and then realising that as Carer Payment recipients we can get the van registered for free thus saving us nearly $500 (bonus up)

How was your week?  Did the ups or the downs win??


Wednesday, September 5, 2012

Sunday, September 2, 2012

Mmmm....bacon.....

Today is Father's Day.

We celebrated with bacon and a Fabo Father's Day present for Murray.


After many coffees and hot chocolates - and bacon - we sat outside in the sun enjoying the lovely spring weather.  Of course I decided it would be a good idea to try and get a family photo.  You know how that usually goes.

These are the only shots we got where no one had a finger up their nose or was blowing a raspberry.





The significance of Father's Day has not been lost on me this year.  Murray gave Ashlea a kidney this year.  He nearly died this year.  It could have been a very different day for us.

With that in mind I decided to take more pictures - of Murray and his girls.





I even got one of Murray and I.  I really wish I knew how to photoshop out wrinkles and grey hair...


Happy Father's Day to all the Dad's out there - with extra special wishes to all the super amazing dads who have given their kids the gift of life - there are no words to thank you for what you've done.