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

Saturday, November 30, 2013

Thankfulness Day 30: Christmas - Alfred Hitchcock Style

Today we put up our Christmas tree.  Emma loves birds and it seems they are very popular as Christmas ornaments this year so I went a little crazy and bought some lots.  Our tree may look a little like something from Alfred Hitchcock's The Birds...just with more glitter.

He sees you while you're sleeping...

Today I am thanking God for:

- the fun that is putting up the Christmas tree with the kids;

- Christmas carols to sing to while doing it;

- the reminder that Christmas is all about Jesus;

- the great gift of eternal life that is ours because of the first Christmas (and Easter);

- a quiet weekend;

- dessert tonight with yet more awesome mums;

- the continuing power of Pokemon;

She's like putty in my hands if Pokemon cards are on offer

- the discipline of thankfulness.  In reality I have so much to be thankful for - sometimes for whatever reason though I can't see it.  I have found it enormously helpful to deliberately choose to see the good;

- although truth be told I am a little thankful that I don't have to think of a list tomorrow;

- and a big thank you to those of you who have joined me for 30 Days of Thankfulness.  It has been wonderful reading all your thank yous too!

Friday, November 29, 2013

Thankfulness Day 29

Today I am thanking God for:

- leftovers for dinner;

- a physio appointment to treat my aching back (although she didn't 'physio' me - she stuck pins in me. Did I miss something?  Is this standard practise now?);

- a hair cut - in a salon - without children;

- a friend to hang out with - especially when that friend knows you've eaten an entire garlic pizza the night before;

- friends with cool toilet seats;

- cool toilet seats found at Bunnings (look - Ashlea can use it without falling in the toilet and I don't have to take an insert out after each use.  These are important things!);

- the continued power of pokemon - Emma is the only one with homework next week.  I bribed her with pokemon to finish it this afternoon so that now we are officially DONE with homework for the year;

- the new roundabout at the end of our street which so far is doing it's job of making it safer to turn;

- an end to 6:45am roundabout construction trucks rumbling into action right outside my house;

- it's Friday!

Thursday, November 28, 2013

Thankfulness Day 28: The Ashlea Edition

Little Ashlea hasn't yet had a turn at being the subject of my thankfulness.  Today I am thanking God for her - her life, her love, her awesomeness.

I am thanking God for:

- her very life - that we have had 7 1/2 years with her.  When she was born we didn't know if we would get 7 days or even 7 minutes.  What a blessing it is to have had 7 years.  Hopefully there will be many more to come;

- that Ashlea's journey has helped me not take for granted the gift of time with my children. The cold hard truth is that anything could happen to any one of us at any time.  We are fragile human beings.  We break.  We have far less control over our lives than we realise.  I am thankful that Ashlea has helped me see this clearly.  It's a scary reality to live with but I would rather have this insight and learn to number my days aright;

- her stubborn determination and outright bossiness that have helped her overcome many hurdles and achieve many so called 'impossible' milestones;

- her shower singing, constant chattering, Talking Tom loving cheeky sense of humour that enables her to have fun in nearly every situation;

- that she is thriving since her transplant -  healthy, growing, developing, progressing, advancing,blossoming, flourishing, THRIVING I tell you;

- that she has shown me that a person's worth is not measured in their achievements but in their humanity;

- that she has shown me that quality of life does not belong solely to those of able mind and body;

- for all the other amazing children and families we have met that we would not have otherwise met;

- for the way Ashlea by her very life demonstrates the gospel.  Ashlea is so dependant and trusting, she is one of the 'weak' thing of this world, one of the 'weak' things that God will use to shame the wise.  We who are able and 'strong' often forget our dependance on God;

- for the hope of heaven that is now ever present in my life.  Don't get me wrong - I love Ashela just as she is - but as a Christian I know that one day she will be in heaven with her new and perfect resurrection body.  Can you imagine that day?  Imagine seeing her on that day - seeing her as she realises she has been transformed and is no longer subject to the limitations of her earthly body.  I long for that day when all who believe will be clothed in glory and no longer subject to the suffering of this world.  O glorious day!  Come Lord Jesus!

1 Day

1 month corrected

1 year

2 years - finally some head control

3 years - able to W sit

4 years - upright in a special walker

5 years - WOW - what happened in that year!?

6 years - and a gift from Dad

A brave recovery

A Delightful Big Girl

Wednesday, November 27, 2013

Thankfulness Day 27

Today I am thanking God for:

- morning tea with some awesome mums;

- arvo tea with some more awesome mums;

- friends who have big kids who gift my big kid with hand-me-downs;

Look at that Pokemon collection now - although we still don't have Lugia
and apparently this is a serious problem!

- the bargaining power hand me down Pokemon cards give me;

- seeing Emma skip into school this morning - I still had to stand in my special spot and watch until she was gone but I tell you she skipped;

- second last lot of home work for the year completed (as much as it's going to be anyway);

- a laundry make over plan;

- a step-and-rail for the toilet plan;

- a toilet training plan (toilet timing actually but you've got to start somehwere);

- and the chocolate cafe tonight with yet more awesome mums.

Tuesday, November 26, 2013

Thankfulness Day 26: The Taken For Granted Edition

It is at about this point in the 30 Days of Thankfulness challenge that I start to run out of inspiration.  Today I am going to give thanks for the very many things I have that I take for granted every single day.

Today I am thanking God for:

- a roof over my head - and not just a roof but a multi-roomed house - with electricity and plumbing;

- clean drinking water - as well as clean water to shower in and flush down my toilet;

- access to good quality affordable healthcare - less than 10 minutes away;

- access to good schools for my children;

- access to an abundance of healthy food;

- clothes to wear even when I feel like 'I've got nothing to wear';

- a car and (relatively) safe roads to drive it on;

- the Police, Fire Brigade and Ambulance who are all only a phone call away in an emergency;

- freedom to meet with other Christians without fear of persecution;

- and the bible in my own language.

It is that time of year again - time to buy Christmas presents for teachers and therapists.  Rather than buying chocolates or useless trinkets I have just purchased some of these things that we take for granted every day for people living in poverty from this website.  We really have SO MUCH compared to so many people in the world.  So many things we take for granted.  So many things to be thankful for.  So much perspective needed!

Monday, November 25, 2013

Thankfulness Day 25

Today I am thanking God for:

- an awesome birthday present found for Audrey - yes I know her birthday is 6 months away but it just so happens that in 6 months time Barbie The Musical will be playing in Sydney;

The singing... The dancing...The PINK!!!

- one child with no more homework until next year - hurray;

- time to get some bible study preparation done;

- gingernut biscuits to dunk in my tea (salt free ginger nut biscuits no less);

- that I haven't yet strangled oldest child - she is presently having a tantrum because I won't let her sleep on the floor (yes I am being serious);

- for the persistence of oldest child - hopefully it will help her as she grows up;

- for a nice long hot shower to hide in away from the tantrum;

- a bathroom door with a lock;

- chocolate;

- and a soft, comfy place to sleep (for me anyway);