Tuesday, December 31, 2013

A New Year

Happy New Year

Anyone who has been reading this blog for awhile knows I usually hate New Year's Eve as it brings out the worry in me - typically the worries about what stressful things might happen in the year ahead.

This year I'm having none of that.  What will be will be.  We will deal with whatever comes - good or bad - as it comes.

There are a few changes I want to make in the new year - particularly with the girls - but I'm not game to even whisper them out loud lest I set myself up for failure.  I'm definitely not saying anything to them yet so as not to prematurely arouse resistance on their part!

As for the blog I'm not sure what will happen with that in the New Year.  Rather than doing Thankful Thursday I have set myself the challenge of finding 1000 things to be thankful for over the year. Being thankful once a week is not enough for my mental and spiritual health - I need to do it more frequently!  1000 things per year works out to be only 2.7 things per day so surely that is achievable?  The trick will be to find 1000 UNIQUE things rather than just giving thanks for caffeine and my bed every single day of the year!

I can't think clearly enough at the moment to even put into words what I want for 2014, but I do know what I need.  I need to live each day trusting God, clinging to His word and somehow relying on His strength for each day.  If you're the praying type I'd love it if you would pray that for me this year.

Also I'd like more fun times like this with my kids.  We have just been out celebrating the New Year at the Lord Mayor's Picnic.  It was such a great night and the girls all had a great time. Ashlea even coped with the fireworks!  She had her ears covered but she watched the whole time and didn't cry!  What progress!

Now does this face paint not just sum up my girls perfectly?

Ashlea as Talking Tom

Audrey the Butterfly

Emma the Fire Breathing Dragon

Thursday, December 26, 2013

A message to the makers of Talking Tom

Talking Tom makers - meet Ashlea - she is your biggest fan.

(Link:  http://www.youtube.com/watch?v=dleq9hQvt_U)

You come everywhere with us Tom.  Here you are with Ashlea at her regular blood tests:

Here you are getting a check up to make sure your kidney transplant is still working well...

Sadly Tom we also had to perform surgery on you when you stopped working...

This was Ashlea's reaction...

Luckily we were able to replace you and you lived another day to sing some karaoke...

Go to the dentist...

Get a haircut...

And accompany us to many more appointments.

So Talking Tom makers I have a message for you:

(Link:  http://www.youtube.com/watch?v=5iAx8heo1Lc)

Anyone know how to get my message to the makers of Talking Tom???

Wednesday, December 25, 2013

Merry Christmas!

Who am I kidding?  The chances of me posting out the Christmas newsletter have now dropped to zero.  Here it is instead:

The Christmas Newsletter!

Once again I am stunned that another year has gone by so quickly!
Thankfully this year has been less eventful than the last. The girls are the ones with the most news so I’ll start with them.

As usual Ashlea has the most news. She has had a wonderful year and is thriving since her kidney transplant. She has enjoyed good health all year with no trips to the Emergency Department and no hospital stays (so far anyway). Her kidney function is still spectactularly good with her last blood test (on 10/12) showing a creatinine of 43 (down from 500 pre transplant). Such stable kidney function has bought us our longest break between blood tests for years – we have a whole TWO MONTHS OFF!!!

Ashlea loves to practice walking all around the house when we are at home and has recently learnt to stand up on her own and set off walking. At school she is in her walker all day and rarely uses the wheelchair.

She has enjoyed school this year and participated in the Support Unit Percussion Band at the School Arts Festival. This year she has played Boccia, got a specially modified bicycle, a special supportive suit to help her posture and been to the Opera House to see Peppa Pig. She even finished off the school year by getting an award for Academic Achievement.
Her love of all things Talking Tom has continued unabated and I think I have single handedly kept that enterprise afloat with all our purchases.

Next year we are hoping to get a touch screen computer for her to use at school and a Power Chair for when we are out and about. Even though she can walk she can really only cover short distances with her walker and she can’t self propel a manual chair so the next step is powered mobility. Look out world – if you thought you were in danger of getting mown down by Ashlea before - just wait until she has power!

Audrey has had a lovely year in Year 1 at school. She sang and danced in the school Arts Festival and also had the opportunity to sing on the Opera House stage with the Australian Girls Choir which she LOVED. She has also had a ridiculously healthy year and still loves all things dressing up and princesses – although she has also learnt the finer points of how to play Minecraft from her big sister.

Audrey also finished off the year with an award at school presentation day for Consistent Effort and Applicaton in all Key Learning Areas. Does that not just sum up my little Audrey perfectly?

Emma has also had a good year at school this year. She too participated in the school Arts Festival in both drumming and dance. She did well in her Naplan tests, received 2 distinctions and 2 credits in the ICAS tests and also earned another Principal’s award at school.
Emma could easily qualify for a PhD in Minecraft and Pokemon as they have become her passion this year. Apparently being a computer whizz is genetically inheritedJ

Grown Ups
The grown ups have rather less to report. Murray is now officially medically retired from the Police and recently finished up with them by being presented with a certificate for his 25 years of service.

I am still working at ACU one day per week. My exciting news is that due to the generosity of many friends I was able to get a Thermomix (fancy cooking / blending machine) and some Tupperware this year - although my highlight for the year would have to be seeing Julie Andrews at the State Theatre!
We got a new car half way through the year which was very exciting. It’s very big! We are currently applying to the Variety Club for assistance to get a wheelchair lifter put into it to save my back. Hopefully that will happen in the next few months.

We also replaced our old bathroom with a new accessible one for Ashlea. Not having ever renovated anything before it was a bit of an eye opening experience but it is great now that it is finished and will hopefully make life easier for Ashlea and again for my back

The most exciting installation of the year though was a new swing set for Ashlea. She loves it and would spend all day out there if her parents had the patience to be out there pushing her all day!

Once again I want to thank all the many, MANY people who have helped us along the way. I am not going to name you all as there are too many people and therefore too high
a chance of accidentally forgetting someone. Please know that if you have helped us in any way over the last year we REALLY APPRECIATE IT.

As I read back over this newsletter I realize it is rather boring. Thank God for our boring uneventful year where I get to tell you about all the ordinary little things my children have done!! Please pray for another boring uneventful year next year!!

Merry Christmas!
Alison, Murray, Emma, Ashlea and Audrey

Tuesday, December 24, 2013

1 Day Out...

Making progress...

We have somewhere to sit and open presents...

The kids have clean bedrooms...

I have Kitchen Benches
We have somewhere to eat...

And I have a dirty little secret...

A problem for another day!

The presents are wrapped.  The food is in the fridge ready to go.  Only one more sleep!  

Merry Christmas everyone!

Monday, December 23, 2013

The Strange Things People Say...

When we bump into people we haven't seen for awhile Ashlea loves nothing more than to show them her 'party trick' - that is - her newfound ability to walk.  Most people respond with excitement and encouragement and tell her how well she is doing.

Not everyone though.

Today she showed off her party trick and got a rather strange response.  Instead of being excited for Ashlea's progress the person said:

What a relief.

What the hell does that mean?

A relief for who?

For Ashlea?  

For me?  

For the other person???

I am not 'relieved' that Ashlea can walk.  I am delighted for her that she has this freedom and independence and that she gets so much enjoyment from being able to walk, but I am not relieved. It's not like her life suddenly now has meaning or purpose just because she can walk.  Did it not have meaning before?  Is everything OK now that she can take a few steps?  Was it not OK before?

Do people really think like this?  Do people really still think that quality of life and meaning are tied to a person's ability rather than their humanity?

Ashlea's value as a person has not changed since she has learnt to walk.

We don't love her any more now.

Her life has value and meaning simply because she exists.  Because she is a human being.  Value and meaning and quality of life are not tied to performance or success.  They just are.

Saturday, December 21, 2013

4 Days out from Christmas Lunch...

With 4 sleeps to go until I host Christmas lunch this is the state of my house.  I will need a Christmas miracle to get it tidy.  Otherwise I will be going with Plan B - hiding the mess behind closed doors.

Dining table where we will eat lunch

Couches where we will sit and open presents...

Kitchen benches...

Kids playroom...

Emma's Room

Audrey's Room

The only thing I will say in my defence is  that while my
new laundry cupboard was being built all the crap had
to go somewhere didn't it...

I'm not actually a hoarder!

What chance do you think I'll get it sorted?  

I should probably also tell you that after church tomorrow there is lunch with the in-laws and then I have to work on Monday.  There is also the food shopping to be done, the presents to be wrapped and a bathtub full of unwashed laundry to deal with.

Now what chance do you give the Christmas miracle...?

NB For all those people who say 'You're amazing - I don't know how you do it'.  This is how I do it.  Or rather don't do it.  I look like I am 'doing it' but this is what is going on behind closed doors!

Thursday, December 19, 2013

Thankful Thursday 19th December

Only 8000ish minutes until the big day - not that anyone in our house is counting!!

This week I have much to thank God for.  I am thankful for:

- a good end to the school year for all my girls;

- pleasing school reports for all the girls with all of them showing improvement in at least one area;

- Ashlea's ability to read level 2 readers (not Stage 2 or even Grade 2 - just level 2) - but she can read them;

- the Variety Club for $10000 and the Lions Club for $2000 towards the wheelchair conversion of our van.  We only need to raise a further $1350 which I am sure will come in from somewhere so I am going to book the car in to get converted;

- my Christmas present has arrived;

If only the crap on the floor would magically
fly onto the shelves...

- another year of Thursday dinners with the neighbours.  We finished off the year tonight with a Christmas Feast - turkey with all the trimmings, pudding and custard and even a gingerbread house;

I'll let you imagine how long it lasted once these little fingers got into it

- pyjama days in the school holidays;

- friends bearing early Christmas gifts - a slip and slide for the kids and Call The Midwife for me (just to clarify Call The Midwife is a book and TV show.  I do not - and never will - need to call a midwife again);

- air conditioning;

- Christmas newsletters finally written and printed.  It's been a rather boring year by our standards - now that is something to be thankful for!!  Let me know if you'd like to receive a copy of our Christmas news!

Thursday, December 12, 2013

Thankful Thursday 12th December

This week I am thanking God for:

- a physio appointment for my aching back;

- catch ups with friends;

- friends you can text to discuss the finer points of managing bathroom etiquette for the growing child with a disability;

- a toilet timing/training clinical trial about to start that it looks like Ashlea will be eligible to participate in;

- the Bear Cottage Christmas party;

- stopping to play at the beach for half an hour after the party - even if it meant the kids had to drive home nearly naked;

- a laundry make over begun (I'm getting a BIG cupboard built - it's very exciting);

- seeing my twins get awards at school presentation day;

- THE pokemon card found by Santa for eldest child for Christmas;

- stable kidney function for Ashlea - so stable that she has earned herself a TWO MONTH break from blood tests;

- getting all our hospital business done in one morning;

She was not a happy camper!

- access to good health care.  I watched Surgery Ship on SBS this week.  What amazing work those doctors and nurses do.  What a privilege it is to have such good access to healthcare.

Thankful Thursday

Monday, December 9, 2013

Twice As Nice

Award Winning Twins!

Today I got to celebrate a twin milestone.

Audrey and Ashlea both got end of year awards at their school presentation day.

Ashlea got an award for Academic Achievement and Audrey got an improvement award in English.

It was such a lovely moment to see them both recognised for the progress they've made.

As usual Ashlea did things in her own style.  This was my facebook status during the principal's (rather long) speech:

Hilarious - watching Ashlea try (unsuccessfully) to sit still during presentation day assembly. She's had her head thrown back, head slumped forward, fingers up nose, arms flapping, head swishing her pigtails around.... She's keeping me entertained!

I should point out that she was seated on the stage (to the side) so I am sure I'm not the only one who noticed this performance!  Then when it was her turn on stage she wasn't sure where to stand so she did a little twirl that ended with her falling onto the Principal.  All in true Ashlea style.

I got a trophy Mum!

My Hard Worker

I am so proud of how far my little twinkies have come and I love that their awards reflected their progress.

Thursday, December 5, 2013

Thankful Thursday 5th December

Yesterday I was telling the girls they only had 3 more weeks of school and after that one week until Christmas.  Apparently there are only TWO more weeks of school and then a week until Christmas. How did that happen?

This week I am thanking God for:

- friends who lend me their husbands to do nasty jobs like changing toilet seats;

- friends to have dinner with;

- chocolate lava pudding for dessert;

- a meeting with friends from church who are determined to provide me with some respite next year - and a plan for how to get started;

- friends to pray with;

- friendly neighbours who pick the girls up from school so I can take Murray to appointments;

- and friendly Aunty's for watching the girls so I can attend the Jesus Club Christmas Show;

- the awesomeness that is Jesus Club - a ministry of friendship to adults with intellectual disabilities;

- a friendly little duck's growth;

There used to be a 20cm difference between
these two - I think this photo is a little deceiving
but still...
 - a big duck found for the little duck's Christmas stocking (I assume it is a friendly duck but I can't stretch the theme out any further);

So big it will need it's own stocking :)

- and as Ashlea keeps reminding me - only 20 sleeps until Christmas!

Thankful Thursday