Thursday, January 31, 2013

Jan 31: I heart teh internetz



Look what's just arrived - a new Talking Tom and not one but TWO app-crayons.

I believe there is another Tom and app-crayon winging it's way to us as well.

You guys are all awesome.  Ashlea is thrilled with her new Tom - and I am very relieved to know we will have a back up for if when she loves this one to death.  The app-crayons are great - one for home, one for school and one for if when she loses one.

THANK YOU SO MUCH!!!

Wednesday, January 30, 2013

Jan 30: First Day Back at School

Audrey - Year 1

Emma - Year 3

Ashlea - 'I in One Ear' she says
(we think she means year one)


3 School Girls

What getting these photos was really like...


Tuesday, January 29, 2013

Jan 29: I'm not ready!!



Back to school tomorrow.  I'm really not ready!

Today while I was getting the last minute things organised I could feel myself working up to a panic.

I don't think it is just the return to school that worries me - it's the return to regular life.  Back to work after 10 months off.  Back to cooking and cleaning and doing all the jobs that other people have helped me with since the transplant.  Back to after school activities and a busy schedule.

Maybe the anticipation is worse than the reality?  Maybe once we're back into it it will be OK?? Maybe???

Monday, January 28, 2013

Jan 28: Angels in Orange


Today we had a visit from some angels wearing orange.

We discovered our roof was leaking - at 5pm on a public holiday - with torrential rain forecast for the whole night ahead.  The only thing I could think to do was call the SES for advice.

They were so incredibly helpful.  They were at our house within 15 minutes - got up onto the roof and found the problem - fixed it, cleaned up the water pooling inside the roof AND unclogged a blocked gutter they found in the process.





 They even stood in the rain and let me take a picture of them :)

I have never had to call the SES before - and I thought I was being silly to call them in the first place - but they were SO helpful and we are so thankful that we won't have to sleep with a bucket in the middle of the bed to catch the rain drops.

Thank you Hills SES!

Sunday, January 27, 2013

Jan 27: Box!


Nothing like having some fun with a cardboard box.  Here the box is featuring as a school bus. Emma pushed Ashlea all over the house collecting all the other 'school students' and then ran a very strict school assembly for them all.

I love, love, love it when all three of my girls play together.  This game of schools kept them entertained for over an hour.

Priceless.


Saturday, January 26, 2013

Jan 26: Happy 'Straya Day



Happy Australia Day!

We  had a low key day - a 'BBQ' with friends and then the local fireworks.

And by BBQ I mean we sizzled our sausages indoors in the frying pan.  The BBQ and I have had several incidents involving fire and in the name of good neighbourly relations I have retired from BBQing - especially since our BBQ sits next to the super-neighbours brush wood fence :)

Friday, January 25, 2013

Jan 25: Speak Up {Writing Prompt}




This is not an easy topic for me.

There are so many things I would LOVE to speak up about but feel like I can't at the moment.

I would love to speak up about what it is really like to live with someone with a brain injury.

I would love to speak up about how stressful it is to bear the weight of responsibility for EVERYONE and EVERYTHING in our family.

I would love to speak up about the many (half crazy) ideas I have brewing in my head for how I am going to manage in the long term.

But.

Is it fair on Murray for me to talk about him on the blog?  Even if he consents (which he does) - is he really understanding what he is consenting to?  In a few days he will have forgotten that he consented....is that really consenting?

Even though there is a part of me that wants people to know how stressful it is to be the sole carer for my family - there is also a part of me that doesn't want to speak up about that.  I like to just get on with the job rather than talk about how I feel about it.  What I do want though is for people to 'get' what is really going on.  To get that I am effectively a single parent.  To get that I am Murray's carer rather than his wife.  To get that my life is not like theirs - the same rules don't (and can't) apply. To get that this is a BIG deal.

I would love to tell you about the long term plans I have brewing but I worry that people will judge me.  Murray does not function as a husband, father or even really as an adult in our house - yes we are married - but this is not a marriage marriage.  So what am I to do?

What would you do?

I can almost feel all the Christians reading this getting ready to reach for the comment button to tell me that I can't leave.  Don't panic.  I'm not leaving.

But please know that those of us who are in marriages where we are carers for our spouses - rather than partners with them - are not in 'typical' marriages like other people.  We are essentially on our own.  It is hard work.  By choosing to stay with our husbands and honour our marriage vows we are choosing a life of loneliness and frustration.  The marriage vows say until death us do part - that is a LONG time - day in and day out - to be alone but have no one actually realise that you are on your own.

I think I probably should stop speaking up now.

Maybe it's better to keep quiet?


{Ellen Stumbo Writing Prompt}

Thursday, January 24, 2013

Jan 24: Thursday dinner

This time last year we started having Thursday night dinners with our neighours.  They are now an institution!



Some days we get extra special treats with our dinner - like special dress up concerts - with many, many acts that seem to go on and on and on.



You can see how appreciative the audience is (Jeremy had long since run off...).

Notice that Emma is in a princess dress!  Somewhat makes up for the fact that she has taught Audrey how to play Minecraft these holidays.

Wednesday, January 23, 2013

Jan 23: Who is the cheekiest?






Which is cheekiest?

The one in the middle who blurts out (in a crowded doctor's waiting room):


Mummy - are you going to the doctor to get a cream for your itch???


Or the other two...whose giggling ensure that she will keep repeating herself, louder and louder until everyone in the room has heard?


Sigh.

{Aussie Wordless Wednesday}


* For the record it was for EZCEMA - not some contagious spreading disease...just so you know...

** Also - Totally Off Topic Announcement:  Local friends - the Anglicare van will be at my house tomorrow at 3pm to pick up the last of my baby stuff.  If you have stuff you'd be willing to donate feel free to drop it off - everything will go to the Carramar program which helps young mums at risk of homelessness.

Tuesday, January 22, 2013

Jan 22: Getting Ready...

New work station - it's going to solve all our homework problems...

I can't believe there is only 1 week left of summer holidays :(

Over the holidays I have set up a new work station for the girls (did anyone say Ikea?).  I have visions of calm, industrious children sitting quietly doing their homework when school goes back. What do you think the chances of that are??

The girls go back to school next week - which means that it is also time for me to go back to work.

Gulp.

I haven't worked since March last year.  I don't know if I can even remember how to connect my computer to the work network - let alone remember what I am meant to do once I've logged in!

Wish me luck!


Monday, January 21, 2013

Jan 21: The perfect day #3



This picture contains the all important elements for the perfect Ashlea day.

Pyjamas?  Check.

Ipad?  Check.

Dodo?  Check.

Singing cat?  Check.

Talking hamster?  Check (I couldn't find a replacement Talking Tom so this talking hamster that I found instead has taken her attention).

Just throw in a dip in the spa to make it perfect.


PS I hope you're all impressed by Santa's ability to find a Dodo AND a singing cat - I know I was!!

Sunday, January 20, 2013

Jan 20: The perfect day #2

Audrey's idea of the perfect day is very different to Emma's.

Audrey loves to dress up - either in pretty clothes or princess dress ups - and she loves to play with babies.

Bathing baby while wearing a pretty dress...
Emma is not into any of this stuff - but fortunately Mia from next door is.  So Audrey's perfect day involves playing babies and dress ups with her bestie Mia.

Saturday, January 19, 2013

Jan 19: The perfect lazy day #1

This is Emma's idea of the perfect lazy day...

Anything with a screen...

It's not just the ipad - any screen will do.  I'm sad to say I have become quite the expert at installing Minecraft mods these holidays.  Anyone else got a little screen addict in their house??

Clearly by the many crumbs visible on the floor in this photo my idea of the perfect lazy day involves not doing the housework.

Tomorrow:  Audrey's idea of the perfect day.  Hint - it does NOT involve screens!!


Friday, January 18, 2013

Jan 18: At the end of the day {Writing Prompt}




At the end of the day when I flop on the couch in front of the TV two things remain true.

One - Ashlea still has a disability.  She still needs my care for absolutely everything.  She still needs constant kidney monitoring.   She will most likely never live independently.  She won't achieve any kind of worldly success.

Two - none of this matters.

At the end of the day what really matters is that one day Ashlea will be in heaven - healed and whole.  No more cerebral palsy.   No more blood tests to check her kidney function.  No threat of transplant rejection hovering in the wings.  None of that.

In the meantime, at the end of each day I am thankful for the gift that she is and for all that she teaches me - about love and life and what is really important.

At the end of the day she is a blessing and a delight and she enriches our entire family.




{Ellen Stumbo Writing Prompt}

Thursday, January 17, 2013

Jan 17: Girls...



We are having a lovely time these school holidays.  We haven't been anywhere, but we've spent lots of time with various friends.

I read an article recently that talks about the different ways boys and girls play.  Apparently boys establish the rules of play in the first minute and then spend the rest of the time actually playing. Girls on the other hand spend the entire time discussing and negotiating the rules of the game - to the point that they often run out of time to actually play!

Having had lots of girls to play these holidays I can attest to the fact that this does appear to be true.  In fact there have been times when these girls and their negotiations have nearly driven me bonkers - especially when birth order comes into play.  I find the oldest siblings are the fiercest negotiators while the younger ones use other means (often tears in our house) to get their way.

Anyone else have this in their house?

Wednesday, January 16, 2013

Jan 16: I love you Tom



Ashlea got Talking Tom for Christmas.  He is the real life embodiment of her favourite app and she is in love.

I heard her say to him the other day:

I love you Tom - you're a lovely little talking pussy cat.

So cute - Tom even came to bloods with her yesterday - poor old ABC Duck was left home alone.

Sadly Tom has already been loved to death and he no longer repeats back everything Ashlea says.  If anyone sees one in the shops (I originally got him from Woolies) please let me know!!

And while I'm asking for favours any US friends who see these in the shops - can you get me one and I'll send you the money - I'd love one for Ashlea to use with her iPad.  It's called an AppCrayon and is apparently available from Bed Bath and Beyond, Target and Walgreens. Thanks!!!


{Aussie Wordless Wednesday}

Tuesday, January 15, 2013

Jan 15: Clinic


Ashlea had her first clinic appointment of the year today.  We are down to 3 weekly visits - and while it is nice not being at the hospital every week it does make me slightly nervous not knowing what's going on with her kidneys as often!!

Her creatinine today was 39 and her tac level was 5.2 - which is all good.

Yesterday I emptied all of last year's hospital parking tickets out of my car.  This isn't all the tickets - some of them went straight in the bin - but seeing as there were still 65 of them I think it is safe to say we spent more time than we would have liked at the hospital last year.  I am hoping for a far smaller pile at the end of this year!

Monday, January 14, 2013

Jan 14: A good reason to consider organ donation


Ashlea's friend Josh came to visit this morning - he is a fellow transplant warrior.

Prior to transplant when Josh came to visit he would have a little wander around the house and then flop down on the floor, too tired to play.

Today was different!

It's nearly 3 months since his kidney transplant and now he is unstoppable!  He did not sit still for the entire time he was here - it was fantastic to see.

That is one very good reason to consider becoming an organ donor if you ask me.

Click here if you're interested in learning how.

Sunday, January 13, 2013

Jan 13: Old Friends


I love summer holidays and the opportunity it gives to catch up with old friends - especially friends who make birthday cakes!

Murray's ability to make and maintain friendships has been significantly impacted by his brain injury - which makes friendships like these all the more important.  It's made even better by the fact that our girls all get on like a house on fire (they have some big boys in their family too but they are old and wise enough to flee the house before the girl invasion).

Next time we won't leave it so long!

Saturday, January 12, 2013

Jan 12: Out!!




Murray and I are out!

Without kids!!

Thanks to a lovely friend we are seeing Les Mis in Gold Class. I'm turning my phone off now!

Woohoo!!!

Friday, January 11, 2013

Jan 11: What Emma thinks of shoe shopping


Thanks for the school kids bonus Julia - we spent the lot in one day on new school shoes and back to school supplies.

My companions were less than enthusiastic for the task but we got it done.

Thursday, January 10, 2013

Jan 10: True Love

Wuv.

Twoo Wuv.


Ashlea's friend Jack came to play today.

These two are the height of cuteness.

Need some more?

Playing doctors in the cubby...

Trampoline cuddles...

Ewwww girls germs...

Wednesday, January 9, 2013

Jan 9: The Duck



Apparently the small people in my house think it is necessary to DO SOMETHING to celebrate your birthday - so today Kate and I took the kids to Darling Harbour to see the Big Duck.


Ashlea was in love...

Here she is showing her appreciation for the
artist's work...

Usually I am a bit cynical about art installations such as this - but you know what - if the goal of the duck was to put a smile on people's faces it worked.  We had fun.  Ashlea was in duck heaven and thoroughly enjoyed my her birthday treat.

The following birthday related conversation may have taken place in our house today too...
Murray: (confidently) Happy Birthday Al! 
Me: (thinking to myself - did he actually remember that today is the 9th of January???)
Murray:  Yeah - my Dad called to wish you a happy birthday too. 
               How do you think I remembered your birthday?

Hilarious - he's too honest!

Tuesday, January 8, 2013

Jan 8: Need I say more?


It only got to 42 here today rather than the forecast 43 (that's 107 instead of 109 for those O/S). I didn't think it felt as bad as 42 should - probably because the humidity was low  - oh and because I was inside in the air conditioning all day except for a dip in the spa this afternoon.

Apparently 31.5 is the perfect spa temperature on a day like today!

I hope you all managed to stay cool and out of the way of bushfires.

Why I Write {Writing Prompt}

Why do I write?

Hmmm.  That is an interesting question.

When I first started this blog it was because I wanted to record our journey with Ashlea and keep our family and friends up to date with her progress.

Writing then became a great way to meet other parents of children with special needs.  In the early days I didn't know many other people who were in a similar situation to us so blogging was a great way to connect.  It was also a great support as I was still traumatized by our NICU experience and overwhelmed with sadness over all that we had been through and all that lay ahead.

Over time though things have changed.

I'm no longer in that early grieving phase - I feel like we're over the worst of the adjustment period in regard to disability (I really hope there's nothing around the corner to trip me up but it feels like we're over the worst of it!).  Now that Ashlea's transplant is over there is also much less vital news to tell people.  Ashlea for the most part is thriving - and while I love sharing that with everyone - her day to day goings on aren't vital information that people need to know!

I don't say much on here about Murray's brain injury - partly for privacy reasons and partly because now that there are lawyers involved I need to be careful.  I would love to give you my opinion on what I think happened on the night of Murray's injury but I just don't know if that is wise!  Similarly I don't know if it is fair on Murray to tell you in detail about his difficulties - which during holiday time appear to include an inability to keep track of what day of the week it is and enormous difficulty following the plot of Once Upon A Time - although he may not be alone there.

So - that leaves me with the question "why write?".  What's the point if there are so many 'off-limits' topics?  Has this blog run it's course?  Are people still happy hearing about Ashlea's day to day happenings?  I know I am still interested in reading other people's blogs - particularly those of people who live in bizarro world like we do - I would hate to lose the sense of community I have with those families.

I don't know why I keep writing but for now I'm going to keep at it because I love that through this blog I have a detailed record of our lives.  One thing I have learnt since Murray's brain injury is how fluid and fragile memory can be.  This blog serves as a memory vault for our experiences - and I'm not ready to give that up yet.

{Ellen Stumbo's Writing Prompt}

Monday, January 7, 2013

Jan 7: About time




Seeing as we spend time in the spa nearly every day I thought it was about time it appeared as the photo of the day.

It is surprisingly relaxing to bob around in the spa with the kids of an afternoon - although the more children you add into the mix the less relaxing it becomes.  I am trying to encourage a no splashing while Mummy's in the spa rule which definitely helps (when it gets observed).

We run the temperature pretty low so we can cool down in the summer heat and for tomorrow's forecast 43 degrees (109 for those in the US) we are running the temperature as low as it can go - although I think it might be too hot to even put a toe outside the air conditioned house.

Sunday, January 6, 2013

Jan 6: Herding Cats...



Today is the first day Ashlea didn't use her wheelchair at church.  Then to be really adventurous we stopped at the shops on the way home and I let her walk some more.

Oh my.

It was like herding cats around the shopping centre - complete with me calling out in the sort of high pitched sing-song tone you'd use to call a cat:

Come on.

This way.  

Here Ashlea!

Come! Come on!

It is not possible for us to be inconspicuous so if you see us at the shops feel free to come up and say hi!  Ashlea will try hard not to run over your toes but nothing is guaranteed!

Saturday, January 5, 2013

Jan 5: Chillin'



Don't you love friends with pools on hot days like today?

Ashlea had a swimming 'first' today - her first time floating in a swim ring. Look - she's even got her feet off the ground!  And lest you think I let my disabled child float around in the water on her own I didn't completely crop myself out of the picture - just so you know I was in the pool supervising!!!


It was such a good afternoon we invited ourselves back again next weekend :)

Friday, January 4, 2013

Jan 4: Hello Ducky


Lest you think I have the world's biggest backyard filled with all sorts of amazing things - you should probably know that today's photo is brought to you courtesy of Ashlea's friend Molly. Molly's backyard has wild ducks that regularly wander through it - it wouldn't be school holidays without a visit to see their ducks.


I don't know if you can read Ashlea's t-shirt - it says "Epic Win".  These two little ducks both had Epic Wins in 2012 - both had major surgery and have come through with flying colours and are now thriving.  Long may it continue!


Thursday, January 3, 2013

Jan 3: Play-Doh

We're living on the wild side these school holidays.

Today we got out the play-doh (not an activity I undertake lightly).  Ashlea has come so far - look at this:

I want to play!

Hands actually in the play-doh!

Can I lick it?

Somehow playing with play-doh degenerated into singing songs about poo - for some reason most activities in our house end up the same way.  Whatever - the kids were having fun and playing nicely together - can't complain about that.  Often Ashlea does her own thing so when she plays with her sisters it thrills me to bits.



Wednesday, January 2, 2013

Jan 2: Ah-Ah-Ah-CHOOOOO

No - Baby Duck doesn't have a cold.

It wouldn't be school holidays without the jumping castle.  Her favourite jumping castle game is called Ah-Choo.  I have no idea how it started but this is how you play...


Ah....

Ah....


Ah...


 Chooooo....



Again!  Again!