Sunday, December 30, 2012

New Year's Resolutions

Usually I don't do New Years Resolutions but these two things have been on my mind for awhile. I'm not going to make them resolutions because that will just set me up for failure in the first week - instead I am making them my goals for the year.

1.  I need to read the bible more.

I have gotten slack in my bible reading habits - partly because I have been having a bit of a stand off with God over the events of 2012.  I am angry that I have been left with the consequences of other peoples actions.  Life has gone on relatively unchanged for all the people involved in Murray's brain injury - even Murray himself doesn't have full insight into his injury.  I have been left to pick up the pieces.  Having a stand off with God is pointless though.  It's like cutting off your own oxygen supply.  Praying and reading the bible is a lifeline - one that I need to grab hold of firmly - without it I'll drown.  Without it I have been drowning.  Holding on tightly to God is my only hope for getting through this.

2. I need to worry less.

Many of you will know from previous New Years posts that I am not a fan of New Year as it usually fills me with worry about what might happen in the coming 12 months (see here for 2012s worries, here for 2011 and here for 2010 if you need proof!).  Seriously though - no amount of worrying about what might happen could have prepared me for what actually happened after Ashlea's transplant so this year I'm not going to bother with the worrying!

Truth be told ANYTHING could happen!  To any of us!  At any time!  Worrying that bad things might happen doesn't prevent them from happening - so as much as possible I'm going to just take each day as it comes - and try to keep my head above water - while clinging to my lifeline.

Anyone else doing resolutions?

{Writing Prompt}

Wednesday, December 26, 2012

Wordless Wednesday: Boxing Day

The relatives (as much as we love them) have gone home.

The fridge is full of leftovers.

The kids are occupied with new toys.

The cricket is on the tele.

What more could you want?

(That's the first wicket of the day falling in the background - anyone who is watching will know how early in the day I was gorging on leftover Christmas pudding).

Aussie Wordless Wednesday

Monday, December 24, 2012

Merry Christmas

Christmas excitement is reaching fever pitch in our house - the girls have been counting down for ages. Ashlea is so much more aware of everything this year - the first thing she asked me this morning was:

Is it Christmas Eve?
Is the slayer coming tonight?
(We are hoping she meant the sleigh - is the sleigh coming tonight?)

I hope you all have a great day tomorrow and that the sleigh brings you lots of goodies.

Friday, December 21, 2012

All I Want For Christmas Is...

My Two Front Teeth!

Seriously though - we have been so well looked after that there is nothing we need this Christmas.  We have been given a food hamper from Murray's work, several envelopes stuffed with cash, as well as bags of presents for the children to open.  People's generosity has been overwhelming - we are very thankful.

In other news some of you will know that Baby Duck has been sick this week with high fevers, headaches and other random symptoms that have made it hard to work out what is going on. She is currently on anti-biotics 'just in case' and will have more follow up next week.  I am hoping she will start improving soon as I really don't want to go back to the hospital - when you're contagious you're not allowed in the Renal Treatment Centre and have to go via ED instead. We've already lost too many hours to that place this week!

Just in case it turns out to be contagious I have wrapped all the Christmas presents earlier than normal - I would hate for Santa's work to be effected :)

Don't forget - it's not too late to get a Christmas Newsletter if you want one - just email me at alisona (at) aanet (dot) com (dot) au.  I'm not publishing it on the blog this year - snail mail only!

Wednesday, December 19, 2012

Wordless Wednesday: Best Job Ever

If anyone is thinking of a career change here is a suggestion for you - be the Santa at a Special Needs Christmas Party - you will be so loved.  There won't be anyone pulling your beard or suggesting you're 'not real'.  There will just be pure, unadulterated joy!

This is Santa and Mrs Claus at the Bear Cottage party - they are particularly special.  Many of the children they visit would not otherwise get to sit with Santa due to the severity of their illness or disability.  For some children it might be their last Christmas.  Santa and Mrs Claus treat all the children so beautifully.  Giving out the gifts takes an age as every child gets just as much time as they need with Santa - there is no rush, no stares, just love.

Aussie Wordless Wednesday

Monday, December 17, 2012

Reflections {Writing Prompt}

How do I reflect on the past year?

So much has happened this year that I don't really want to reflect on - that I don't yet know how to reflect on.  I don't even know yet what to think about it all.

In the last year Ashlea has acquired a new kidney;

Murray has acquired a brain injury;

Audrey has flourished at school;

Emma has acquired an anxiety disorder.

How do I reflect on a year of such extreme highs and lows?

I really have no words.

What I do know is this.  Heaven is coming.  It's going to be so much better than the extreme high of Ashlea's successful transplant that it will more than make up for the extreme low that is brain injury and anxiety.

Other than that I've got nothing.

{Ellen Stumbo - writing prompt}

Sunday, December 16, 2012

A bit of fun...

Ashlea's Vision Ed teacher made this for fun.

Even though it is just a bit of fun I find it kind of mesmerising. I know it's just an animation but it gives a little glimpse of 'what could have been' - imagine if Ashlea could really move like that!

Friday, December 14, 2012

A Christmas Memory {writing prompt}

I love Christmas.  I have so many fun memories of Christmas as a child - the excitement, the fun, the presents!

As an adult the memory that is clearest in my mind comes from Christmas 2006 - our first Christmas together as a family of five. Ashlea had come home from hospital in September but we hadn't made it to church as a whole family until Christmas.  I can remember us all going on Christmas Eve and being so thankful for God's goodness to us in letting us keep Ashlea.  I was still traumatised by our NICU experience so I was hyper aware of just how precious it was that we were all together as a family for Christmas.  It could have been a very different Christmas for us that year.

Every year at Christmas I still remember that first year we were a family of five.  For me Christmas is now a special reminder that every day we have with our children is so precious.  Every Christmas celebrated together as a family is something to be treasured.  You never know what is around the corner or how many Christmases you will get with the people you love.  The irony is that this year again it could have been a very different Christmas for us.

My Christmas memories told through Santa photos...

2006 - No Santa photo - too stressful to take
twins and a 2 year old to see Santa!!

2007 - I'm sure the girls sat on Santa's knee at the RIDBC
party but I obviously have lost the photo!

2008 - Santa - at the CPA party in 40 degree heat

2009 - Santa - RIDBC party
2010 - Oops - No sign of Santa

2011 - In which Santa looks
murderously at my children...

2012 - Our FIRST shopping centre Santa photo.
The entire shop was watching by the time we were
finished but it's pretty good don't you think!!

And speaking of Christmas - the annual Christmas newsletter is currently in production.  Who would like a copy?  We are going old school this year and only doing a snail mail version - email me your address if you want a copy:  alisona (at) aanet (dot) com (dot) au

Wednesday, December 12, 2012

Wordless Wednesday: Dreamnight

Last week we went to Dreamnight at the Zoo.  It was such a good night - we had a ball and got to do so many fun things, like:

Feed the baby giraffe - look at that tongue!

Cuddle a giant 'duck'

Squeeze a snake (she really did give it a squeeze!)
Remind Santa to bring a Dodo

See the new exhibits

And meet our favourite characters
From our favourite movie

And some other randoms she'd never heard of...
Thanks Dreamnight!

What a great night!  I don't even know who is responsible for organising Dreamnight - but a big thank you must go to the Childrens Hospital who enabled us to attend and to all the staff at the zoo who volunteered their time to make sure we all had a great experience.

Aussie Wordless Wednesday

Monday, December 10, 2012

An Award for Audrey...

It was the end of year presentation day at school today and Audrey represented the family by receiving the award for enthusiastic participation in music.  She is very proud.

It's so tricky as a parent - I want to celebrate Audrey's award but I don't want to make Emma and Ashlea feel bad for not getting one - not that Ashlea cares, but Emma notices that Audrey always gets awards and she doesn't.  Audrey really does need to be celebrated though.  She is my 'easiest' child and can so easily get overlooked among her noisy sisters.  I would love to claim some sort of credit for her good behaviour but I can't - it's just her nature.  Not only has Audrey managed to keep up in kindergarten this year despite being a micro-prem and having had a challenging year at home - listen to what her teacher wrote on her report:
Audrey is socially aware with a mature disposition, which enables her to resolve conflict with great diplomacy.  She is a quiet but popular student who is responsible and considerate.  Her selfless attitude and ability to share and care is notable in one so young.
It's the first time a school report has brought a happy tear to my eye!

Saturday, December 8, 2012

A Wish Granted

Ashlea's spa has arrived!
It was a tight squeeze but we got it in...

Thank you so much to the Starlight Foundation for making this possible.  Ashlea loves her spa. The first words out of her mouth today were:

It's a spa day!

A lot of children choose holidays or experiences for their wish but holidays and experiences tend to freak Ashlea out.  A spa is perfect for her as she loves being in the water and it is also a great source of therapy. Mostly though it is FUN - and not just for Ashlea but for the whole family. It is something we can all enjoy for years to come.

Thank you so much to Starlight (and all those who donate to Starlight) and thank you to Chris Dalby from HotSpring Spas at Bella Vista.

If anyone has any spare change this Christmas please consider donating to the Starlight Foundation.  They are currently trying to raise $1 million in order to grant 154 wishes before Christmas.  We are just one example of how much joy a wish can bring to a sick child.

Wednesday, December 5, 2012

Wordless Wednesday: More Milestones!

Who can resist the cuteness of these two???

Yesterday Ashlea and her school friend Jack partied hard at the Variety Special Children's Christmas Party.  This is the first party that Ashlea has really gotten into and enjoyed (her hands only stayed on her ears for 10 minutes) without even the hint of a meltdown.

She couldn't wait to sit on Santa's knee and could have sat there chatting to him all day - although I think he was a little perplexed by her request for a Dodo for Christmas.

After the party Jack came back to our place to hang out for awhile.  When Ashlea found out he was coming over she was so excited.  One of her friends was coming to play. It was beyond gorgeous to see them playing together.  Even though we have had plenty of kids come over to play before this was the first time one of Ashlea's friends had come just to play with her.  She was thrilled and has been talking about it ever since.  My mummy-heart was filled to bursting to see her playing with her friend.  

Linking up with Trish's Wordless Wednesday - although I'm not very good at the wordless part :)

Monday, December 3, 2012

When I See You Smile {Writing Prompt}

Seriously - this week's writing topic is too easy - just look at this smile!  What's not to love???

When I see you smile - I smile. 
When I see you happy - I am happy. 
And when you laugh - what a delicious sound - I can't help but laugh too. 
I remember your very first smile.  It was September 2006 and you were 9 weeks corrected age (22 weeks actual) and had been home from hospital all of 4 days. You were lying beside Audrey and I was talking to you both when you gave us a hint of a smile.  It only lasted a few seconds but oh how it gave us hope.   
Maybe you knew who we were?   
Maybe you were happy in spite of everything you had been through?   
It was the first time you indicated that you were 'in there' after all those months in hospital.  
Early smiles - Dec 06 - 8 months actual / 5 months corrected

The best thing about your smile is that you do it every day.  It is a very rare day when you don't have at least one smile - and most days you have hundreds.  And seeing as your smile makes me smile this means that every single day - no matter what else is going on in my adult world - I have a reason to smile.

Friday, November 30, 2012

Thankfulness - Day 30

Well - we made it to day 30.  I have found it helpful to reflect on all the things I do have rather than the things I don't - but I am also kind of thankful that today is the last day of being thankful :)

Today I am thankful for:


- air conditioning + cricket + corn chips and salsa + pepsi max - on a Friday no less;

- that it didn't get as hot as predicted today - I was unsure about whether to send Ashlea to school in 40 degree heat;

- Ashlea's participation in the Annual Mayoral Boccia Challenge at school - complete with medal;

- that Audrey ASKED to watch Ashlea play Boccia - I love that she wanted to see her sister play AND that she had the confidence to ask;

- sprinklers, wading pools, hoses and neighbours to spend warm afternoons with;

- the fact that tomorrow is the 1st of December which makes it Christmas Tree Day in our house;

- did I mention it's Friday;

- the reminder from this challenge that I really do have much to be thankful for.

Thursday, November 29, 2012

Thankfulness - Day 29

Today I am thankful for:

- an encouraging interview with Audrey's teacher who assures me Audrey is smack bang in the middle of the range expected for kindergarten;

- hearing that Audrey has blossomed in confidence at school this year - in no small part due to the fantastic teacher she has had;

- teacher's Christmas presents ordered from Tear Fund and Samaritans Purse (surely they don't need more chocolate and trinkets??);

- not bothering to do any tidying today and not feeling guilty about it (I often feel like I have to be doing something if I'm home alone);

- being home alone;

- salt free cake pops made;

- and taste tested in peace before the kids got home;

- a very civilised end to Thursday night dinner - often Kate and I let the kids play for just that extra few minutes that results in chaos - tonight we timed it to perfection;

- confirmation that the spa has been ordered;

- sprinkler fun on a hot day.

Wednesday, November 28, 2012

Thankfulness - Day 28

Today I am thankful for:

- a gift card in the mail;

- an encouraging meeting with Ashlea's Vision Support Teacher to discuss goals for next year;

- meeting our local Lions Club member to discuss how they can help us;

- dinner out tonight with my fabulous bible study ladies;

- roast chicken delivered at dinner time for the rest of the family;

- FOUR loads of laundry dealt with (although I don't feel like that really counts in the 12 Days of Tidying as it is just an everyday occurrence rather than a Special Tidy);

- FIVE fridge shelves cleaned;

- every so often being able to harness the energy of PMT for good rather than evil (hence the 12 Days of Tidying);

- a quick jump on a jumping castle this afternoon;

- and transplant pioneer Joseph E Murray who passed away this week.  Thank God for men like him.

Tuesday, November 27, 2012

Thankfulness - Day 27

Today I am thankful for:

- THREE children's bedrooms tidied (in keeping with my 12 days of cleaning theme);

- TWO lost objects found - a library book and Ashlea's glasses.  Sadly I can't take the credit for finding Ashlea's glasses - they were found in the playground where she had discarded them last Friday;

- the house to myself for a few hours;

- an entire day of walking for Ashlea at school today;

- Ashlea's determination (otherwise known as strong willed stubborness);

- her laugh:

- how her laugh makes us all laugh (hence the dodgy video quality - I was laughing too much).

Monday, November 26, 2012

Thankfulness - Day 26

Today I am thankful for:

- local kidney friends who helped me out with last night's pump emergency;

- having gotten changed out of my pyjamas before going to get the pump when I saw the RBT out in force;

- one child finished homework for the year;

- hearing how excited Emma's classmates were to see Ashlea in her walker at school today.  I LOVE it when kids see Ashlea in her walker for the first time and are so excited for her;

- one cupboard tidied.  I'm hoping it might turn into the 12 Days of Tidying but so far it is just ONE tidy cupboard;

Now I can find the pepsi max and
salt free chippies

- time to talk and pray with a fellow traveller;

- an invitation to a midnight launch party (made me feel cool for a minute until I thought about all the sleep I'd miss);

- 4 mangoes for $4;

- an umbrella offered during a downpour - it was a very brief downpour but of course I was caught out in it - straight hair and all;

- an unexpected meal delivered at dinner time that included a loaf of banana bread for afters.

Sunday, November 25, 2012

Thankfulness - Day 25

Today I am thankful for:

- the one month countdown until Christmas - we are getting excited early this year;

- a successful button change for Ashlea - I hate doing it so put it off for as long as possible - but it's done now;

- a very messy house brought under some semblance of control before the start of the school week;

- an hour or so to sit inside in the air conditioning and watch the cricket - made even more enjoyable by the fact that the Aussies are doing well;

- BBQ lunches;

- the delight that is the wading pool on a hot day;

- daylight savings;

- dinner outside on a warm summer evening;

- duck love in stero.

I have a random question for you tonight too.  I don't suppose anyone in my neck of the woods has an unused Kangaroo pump lying around?  Ashlea's pump crapped itself tonight meaning I will have to manually give her feeds throughout the night tonight.  I'm not expecting anyone to actually have one but you never know with the internetz so I thought I'd ask!

Saturday, November 24, 2012

Thankfulness - Day 24

Today I am thankful for:

- a spot of Christmas shopping done;

- a spa chosen;

- the adventure of taking Ashlea into the shops in her walker.  I asked her if she wanted to walk or wheel and she said Walk!  I wasn't convinced that would be such a good idea and was umming and aahing about what to do when Ashlea piped up again with SHE SAID WALK!  So she walked;

- not too many people's heels clipped;

- the love of a girl and her duck - we found her favourite toy in the shop;

- getting out of Toys R Us alive (and possibly with a new ABC Duck...);

- a good idea from Aunty Carolin about how the Lions Club offer of yesterday could be put to use (shade cloth over the spa);

- dinner tonight with my Christian Special Needs Mums group - a great bunch of women who truly get it;

- that Aunty Carolin is home tonight to do the bedtime medication routine meaning I don't have to wait until Ashlea is in bed to go out.

Friday, November 23, 2012

Thankfulness - Day 23

Originally I had planned to have a quiet day today - I ended up having quite a busy day, but am thankful I got a lot done.

Today I am thankful for:

- grocery shopping done, lunches made and uniforms washed (already I know!);

- a phone call from our local Lions club offering assistance;

- a phone call from our local Spa Man to discuss Miss Ashlea's wish.  What do you think?  We want one that is flat-ish so she can stand up and hold on to the edge:

This one has more 'flat' areas 

But this one is apparently 'better'...

- encouraging news from Emma's teacher that she hasn't fallen behind at school in spite of the year she's had.  In fact she is bright enough to go into the extension class - however this is where having anxiety really bites - she is nowhere near mature enough to cope so will stay in a regular class.  I don't think I care that she won't be in that class - the fact that she is smart enough to be there is enough;

- NAS corn chips with NAS salsa - a rare treat that the rest of you would probably say tastes like cardboard with chili on top but to me is delicious;

- the anticipation of a trash TV marathon tonight - I Didn't Know I was Pregnant - TV Gold;

- Friday night toy room sleepover for the girls;

- the anticipation of a quiet weekend;

- and the relief of discovering that we didn't miss the ice cream man today - he was just running late.  Phew!

Thursday, November 22, 2012

Thankfulness - Day 22

Today I am thankful for:

- coffee with a mum who gets it;

- a quick catch up with someone I haven't seen for ages - the poor guy hadn't heard any of our news so was left a bit shell shocked I think;

- Ashlea's vision support teacher who regularly emails me snippets from the classroom.  This is what Ashlea made on the computer at school today:

- the arrival of the Perfect Pet.  We got offered this gorgeous pet rabbit.  What makes him the Perfect Pet for us is that he is going to live next door with the neighbours - we will get to play with him and they will get to clean his poop;

- the fact that I managed to convince my kids that it was actually a good thing that the bunny was going to live next door thus avoiding me having to say no way are we getting a rabbit;

- Super Neighbours Kate & Greg - need I say more;

- no added salt nachos for dinner;

- another catch up with someone else I haven't seen for ages;

- the anticipation of a quiet day planned for tomorrow (I probably shouldn't say that out loud should I?).

Wednesday, November 21, 2012

Thankfulness - Day 21

Apparently today is World Television Day (the internet told me so it must be true).  I'm not quite sure what the point of the day is - but as someone with a love of television I thought I would add it to my list of things to be thankful for.

Today I am thankful for:

- the large screen TV handed down to us by friends when they upgraded;

- that it is so big I can even read the screen without my glasses;

- the mind numbing chill out time provided by the big TV;

- the peace and quiet that Peppa Pig and the Teletubbies on the small TV bring;

- Emma's bravery at anxiety therapy last night.  We went on a field trip and engaged in 'high risk' behaviour - eating scary foods (the last sushi roll at the end of the day), touching garbage bins and hand rails and all sorts of things and then eating, riding escalators alone and sitting in a pitch black movie theatre;

Yum - Salmonella Sushi Roll

- my own bravery at letting her do all those things.  Anyone who knows me well will know how I feel about dodgy sushi rolls and how I like to wash my hands after touching everything at the shops.  I kept my mouth shut (except for encouraging Emma) - although I may have been sanitizing my hands whenever her back was turned;

- that maybe the anxiety therapists are right - maybe nothing really bad happens when you do those scary things (I am not 100% convinced yet.... but it seems they might be on to something - we are all still standing);

- Centrelink dealings taken care of for another 3 months;

- a huge walking day for Ashlea at school today - apparently she was out of her wheelchair from recess until home time!

Tuesday, November 20, 2012

Thankfulness - Day 20

Today I am thankful for:

- a cultured wee specimen that proved I was right - Ashlea does have a UTI - and while I'm not glad she's got one I am glad my instinct was right!  I need to rely on it a lot with her as she does not let on that anything is wrong until it is VERY wrong;

- a creatinine of 36 in spite of the UTI;

- knowing how to work the hospital system;

Watch the triage nurse shoot out from behind her desk
when I arrive wearing a mask

- an invitation to an event for special kids - Dream Night at the Zoo - I don't have any more details other than it is a special evening at the zoo for sick kids.  Only 50 children from our hospital get chosen and we were one of the lucky ones!

- Super Neighbour Kate starting her Christmas puddings early - and having one that needed taste testing;

- Emma's enthusiasm for school band;

Of course my child is the one that can't get a noise out of the flute
but aced the trumpet

- forgiving neighbours;

- industrial strength headphones;

- the hint of a whiff of a rumour that we might be nearing the top of the home mods list - meaning a wheelchair accessible bathroom could be on it's way!!

Monday, November 19, 2012

Thankfulness - Day 19 - World Toilet Day

I wonder how many of you know that today is World Toilet Day?

Let us all give thanks for the blessing that is sanitation and running water!!!

Today I am thankful for:

- not one, but two working toilets in our house (although ours are in separate rooms thankfully - not like the ones pictured);

- plumbing;

- clean, running water;

- toilet paper;

- hot showers;

- soap and hand sanitizer;

- disposable nappies and wipes;

- disinfectant and bleach!

In other news I am thankful that:

- Ashlea and I were in and out of the ED in under 3 hours last night;

- they got a clean catch of wee (a rare and prized specimen);

- that she doesn't appear to have a UTI - or if she does it is very mild.

Now, back to the toilets.

Did you know that for just $25 you can give someone the gift of clean drinking water?  Or for $70 you can give someone a toilet?  As someone who loves all things sanitary I have taken great delight in giving the gift of a toilet!


Sunday, November 18, 2012

Thankfulness - Day 18

Today I am thankful for:

- a generous gift that means that I won't need to increase my days at work in order for us to keep paying the mortgage (that's the weight being lifted bit from yesterday).  I was worried I'd have to increase my days and that my head would explode from the stress;

- a flexible employer who has generously allowed me to care for my family on paid leave for the last 6 months;

- a flexible job to go back to that includes the ability to work from home;

- lunch with a friend;

- the kind of friend who stays and entertains your kids for the entire afternoon;

See - they're in their pj's and still being entertained!

- leftovers for dinner;

- wee catching bags and wee successfully caught (no easy feat let me tell you);

- kidney peeps bearing pee sticks to check for UTIs thus allowing me to avoid a potential Sunday night trip to the ED;

- the reassurance of knowing that if we do need to go to the ED (which we don't by the way) that it is only 10 minutes down the road.

And we pushed our luck too far...

LATE UPDATE - spoke to soon - going to the ED with suspected UTI...