Sunday, July 31, 2011

The Church Dilemma - update...

We've been to the 'new' church 3 times now.  They have been so friendly and welcoming - there just seems to be so many good reasons to go there.  It's close to home.  The children like it.  The people are friendly.  The clincher though is the way they have welcomed Ashlea.  I often judge people - rightly or wrongly - by the way they treat her.  The first time we took her to Sunday School the teachers just asked straight up if she would be joining in (she lasted less than 5 minutes but it was worth a shot).  It was just assumed that Ashlea would join in - which of course is exactly how it should be.  A lot of people have also made the effort to speak to Ashlea when they have been speaking to me - which might sound like a little thing but it is not something a lot of people do.  It probably helped that Ashlea was being particularly charming today and was asking for cuddles - from complete strangers - and being incredibly cute and snuggly with people, charming them into falling in love with her (I like to think they loved carrying a heavy 5 year old around anyway).

We have already had people offer to make us meals during the transplant and the minister said to us today that despite the fact they haven't before had anyone in a situation like ours, that they want to support us in whatever way they can.

So....we are seriously thinking about making the change.  There are a lot of great, practical reasons to go to a church close to home - and this church seems like it could be a good fit for us.  The only thing that is really keeping us at Gladesville is the history we have there - and what a history it is. 

If we are going to make the move permanent, we need to go back to Gladesville and say good-bye.  Not because we will never see anyone again, or that we are so important that everyone needs to know what we are doing.  I do think though that we need to publicly thank everyone for their support, generosity and love as they have walked this journey with us.  They helped us through the most difficult time of our lives.  We will be forever grateful for that.

But if we do that, it will be real.  That would mean we are really leaving.  And there is something about leaving that history that is a little heartbreaking.

Friday, July 29, 2011




I just realised that I have posted Ashlea's mid-year updates (check your letter boxes everyone) to all our friends.  I of course included  the link to this blog in the update.  I have given them to the minister AND the senior minister at church, the minister at the new church, friends, acquaintances, everyone.

I even gave one to the ex-deputy prime minister of the country - and his wife - who were speaking at a church event tonight.

And then I realised...that the most recent blog post was the one below, about my parenting (and other) fails.  And two posts below that is a post about gastro that contains a photo of a toilet.

What was I thinking???

So....quick....HELP!  I need an idea for a great blog topic.  Something clever and witty and insightful, preferably without any fails.

I'm open to all suggestions!

Thursday, July 28, 2011


Parenting Fail:

If your smallest child - who also happens to have significant delays - exclaims Oh Shit when something doesn't go her way, you have probably committed a parenting fail somewhere along the way.

Speaking hypothetically of course.


If you and your other children hear the above exclamation and burst out laughing you have probably just compounded the fail.

Dentist Fail:

When discussing your broken tooth with your dentist, the expression "I cracked a root!?" is probably not the best one to use (in Australia anyway - that fail may not translate overseas).

Anyone else got a fail they'd like to share??

Tuesday, July 26, 2011

Christmas in July

Contrary to my natural urge to leave things to the last minute, this year I am trying to get organised.  Early.

I have started my Christmas shopping.

I don't usually shop during the July toy sales as I have a tendency to lay-by stuff and then forgot about it.  I then lay-by more stuff and forget about that too.  Then when I collect my lay-bys at Christmas the present pile for the children nearly reaches to the roof.  Not that they've ever complained about that of course.

This year however I am lay-bying the children's Christmas presents now, so that in the event that I am not in any shape to battle the Christmas shopping crowds - having just had a kidney out and all - Santa can still come to our house!  I plan to have my lay-bys paid off before the transplant so my sister can just go and pick them up for me close to Christmas if I'm not up to it.

So, the point of all that is that I need ideas for what to get Ashlea for Christmas.  I have Emma and Audrey sorted - they are each getting an 8Gb ipod touch.  I know - it's a bit extreme for a 5 and 7 year old but I am sick of them running down the battery on my phone whilst checking their zoos and playing Angry Birds.  Don't even get me started on the fingerprints.  They are also getting a go-cart type thing to pedal around in the backyard and a masterchef outfit each.


But what to get the little Miss???

She already has every single In the Night Garden toy known to mankind.

Any thoughts?  All suggestions welcome! 
In keeping with the spirit of Christmas I am also sending out a little note in the mail to everyone who would normally get our Christmas newsletter - just so that those who aren't 'internet people' don't get the shock of their lives to read that they missed the big event.  Keep an eye on your mailboxes - I hope to get them out this week.

Friday, July 22, 2011

The Good, the Bad, and the Ugly...

Let's start with The Good.

My working from home plans have come to fruition!  I am now able to work at home for 2 of my 3 work days which definitely makes life easier.  Just quietly I have further plans that involve working from home all 3 days but I am trying to go slowly, slowly and not piss anyone off while rolling out my plan.

Now for The Bad.

My mood.  Oh man I am so IRRITABLE at the moment.  Everything is getting under my skin and I am finding it so hard to be patient.  Juggling work, appointments, application forms, school, preschool, money, cooking, washing - everything feels like it is getting on top of me at the moment.  My brain is so scattered at the moment that when we went to swimming this afternoon I forgot to close the front door.  Left it WIDE open - anyone could have come in and helped themselves!

How many weeks left of term???

And then there's the Ugly.

Someone taught Ashlea the chicken dance song.  I reckon she sang it for 30 minutes straight tonight (what was I saying about needing patience???).  At one point I told her I was going to have to put her to bed early because I couldn't stand it.  

Her response?

NO!  But I can't stop singing!!!

OK, that's not really very ugly is it?  But I thought it was more savoury than telling you about my gastro experience earlier in the week.  I could have done with this set up when I was trying to work from home on Tuesday.

Now what will be really ugly is if all the kids come down with it.  All at once.

Friday, July 15, 2011

School Holidays - Week 2

Pyjama days: 3

Hours spent playing Wii:  too many to count

Visits to friends to chase get chased by ducks: 1

Momentous Realisations: 1.

The other day I was trying to work out what date it was and I realised that it is already half way through July (how did that happen?).  Being half way through July means that Ashlea's big anniversary has been and gone - all without me realising or batting an eyelid.  The anniversary of that day when I thought she was going to die, which in previous years I have relived over and over, this year came and went without any build up or acknowledgement.  Or any need for it.


Sunday, July 10, 2011

The dilemma...

Today Emma, Audrey and I went to visit a new church.  Not because we are unhappy with our old one, it is just that we are thinking of switching to one that is closer to home.  Emma gets car sick just driving around the corner - so to have her feeling unwell every single trip to church is unfair (on everyone!).

But it's just not that simple is it?

Well, today it was simple because Em, Audrey and I went as an 'advance party' to check things out.  We were able to go incognito without Ashlea - and masqueraded as average Joe's (it felt weird).  The good points for the new church are that it appears to be wheelchair accessible, and the morning tea is better :)

What it really boils down to though is that we still receive a lot of ongoing support from Gladesville.  Ashlea has a roster of people to assist her in Sunday School - people who I know and trust.  We have had - and will have again during the transplant - meals, housework help, child minding, washing folding - you name it.  I am even getting meals now 4 months out from the transplant because my bible study ladies are trying to fatten me up.

How do we start at a new church where people don't know us yet we still need this ongoing help?  At the absolute minimum we cannot attend a church that is not willing to include Ashlea in Sunday School by providing helpers.   How do you ask for that though???  We also have the transplant coming up - how can we ask people we hardly know to help us through that?

And don't even start me on the emotional wrench it will be to leave Gladesville.  Our friends at Gladesville have walked with us this whole journey.  There are people there who have known us since 'before Ashlea'.  These are the people who lived through the girls early birth with us - and have followed every step, every triumph and every setback since then.

I feel really torn.  I don't want to leave Gladesville, but the reality is that it would be really good to go to a church closer to home.   It is hard to invite people to church when it is so far away.  It's hard for the children to be involved as they don't socialise with any of the children outside of church.  We don't really socialise with anyone from Gladesville outside of church anymore.  I feel like it is time for us to make the move.

But it's just not that easy!!!

I know it is the role of a church to support its members - but it seems different when you arrive as a member needing support, rather than become a member needing support as we did with Ashlea.  There is also the whole question of timing.  Do we move now?  Do we wait until after the transplant?   I don't want to change churches just before the transplant, but I also don't want to stay at Gladesville, accept all their support, and then up and leave straight after.

So you can see why this is such a dilemma.

Any thoughts?  Words of wisdom?

Friday, July 8, 2011

School Holidays - Week 1

The first week of the school holidays is drawing to a close - and I've got nothing to report.

We have managed to get dressed 3 days out of the 7 we have had off school so far - once for an appointment, once for visitors (we thought we should) and once to duck out to the shops and pick up emergency supplies (a new Wii game) we could continue with the important work of holiday hibernation.

Here's a couple of pics of from the week...

After many years of headphone hatred, Ashlea has now developed a love - some would even say an obsession - for her headphones.  She had a 30 minute tantrum the other night because I wouldn't let her wear them to bed.

Audrey & Emma did venture outside for a short time most days - mostly to make and then 'plate up' mud, leaf and twig concoctions a la Masterchef.  I did take a picture of their 'plated up' creations but I'll spare you that.  Oh and who is responsible for the phrase 'plate up' anyway?

We have more of the same planned for next week, so look forward to another riveting update then!

Saturday, July 2, 2011

O Happy Day!

Today is the first day of the school holidays - O Happy Day!

We started our holidays as we plan to continue them - with a pyjama day.  Hopefully we'll fit in quite a few more of those.

One of my holiday jobs is to edit the preschool video.  I didn't do the filming this year as I had to work, so Ashlea's teacher did it.  You can imagine my delight at finding this little gem while I was going through the footage:

Apparently Sue has been practising this with Ashlea for months - but yesterday (in front of the camera) she did it by herself for the first time.  This is a huge milestone for Ashlea as it makes her functionally closer to a level 3 on the GMFCS scale (measure of Cerebral Palsy severity), than a 4.

While on the one hand it doesn't matter to US what level she is, it does matter to HER.  Every ounce of independence is so valuable - and as a Level 3 her risk of other complications (for example needing major hip reconstruction) drops significantly.

LEVEL III: Children sit on a regular chair but may require pelvic or trunk support to maximize hand function. Children move in and out of chair sitting using a stable surface to push on or pull up with their arms. Children walk with a hand-held mobility device on level surfaces and climb stairs with assistance from an adult. Children frequently are transported when traveling for long distances or outdoors on uneven terrain.  (Source).

O Happy Day!!!