Wednesday, October 31, 2012

Wordless Wednesday: Twins Once More

Most of you who have been following our story for awhile will know that one thing I have really struggled with over the years has been how different my identical twins look.  I have often felt sad at the loss of their twinship and their differences are often a trigger for thoughts of 'how things could / should have been'.

When my twins actually do something at the same time, or look in any way twin-like I make sure I take lots of pictures!

So here they are - my twins - each missing a top front tooth.  I think this is the first time EVER they have reached a 'milestone' at the same time!

Audrey's loose tooth may have been helped on it's way just so I could get this shot...I couldn't rightly say...


And for those who know my kids you will also know that trying to take a photo is always a bit of a disaster so here are the out-takes....

Aussie Wordless Wednesday.

Sunday, October 28, 2012

What I Look Forward To

What I look forward to depends on how far ahead I look.

This week I am looking forward to coffee with an old friend, attending the kindy farm excursion and hopefully having a whole day - well 5 1/2 hours anyway - with the house to myself while the girls are at school and Murray is at Tafe.

If I look a bit further ahead to the next couple of years I am looking forward - God willing - to seeing my girls grow and learn and mature.  I'm looking forward to seeing Ashlea make progress at school and with her walking.  I look forward to hopefully a long period of good health for her now that she's had her transplant.

I am also looking forward to the resolution of the whole mess that is Murray's brain injury.  I want to fast forward through the recovery period (now) to see the end of the road (a few years away). Will Murray be able to return to work?  If so let's get there now.  If he is going to be declared totally and permanently disabled (in regard to work) then lets do it now - another 18 months of 'waiting to see' is going to drown us financially.  I'm looking forward to 'all that' being resolved.

When I look still further down the road even though there is much to be hopeful for there is not really going to be a 100% satisfactory resolution to any of these issues.  Ashlea will still have CP and constant kidney monitoring.  Emma may still have anxiety.  Murray will still have a brain injury. We will probably still struggle to pay the bills.  In some ways it is overwhelming to think of 'all this' stretching on for years to come.

Thank God there is more to the story.

Thank God this world is not all there is.  Thank God that one day there will be a satisfactory resolution to all the stresses of life on earth.  A resolution that involves no more cerebral palsy, no need for organ transplants and definitely no brain injuries. Thank God there is heaven to look forward to, where:

God’s dwelling place is now among the people and he will dwell with them. They will be his people and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.

Before having Ashlea  I found it hard to look forward to heaven as it seemed so abstract and the things of this life seemed so appealing.  Having Ashlea has made it easy to know what to look forward to.  Yes there are many things in this life that are wonderful but they pale into insignificance compared to what it will be like in heaven.  We will all be free from disease and decay in heaven, but sometimes because most of us 'don't look so bad' on the outside it is difficult to imagine what heaven might be like for us.  Not so with Ashlea.  It is easy to picture what heaven will be like for her.  Her physical limitations will be a thing of the past.  Her body and mind will be perfect.  Take a moment to picture that!  Take another moment to picture the moment she realises that!  Now picture the moment I get to see her healed and whole!

Ultimately heaven is what I am looking forward to - it is what helps me get through each day and is what makes 'all this' bearable.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen but on what is unseen, since what is seen is temporary but what is unseen is eternal.

Writing Prompt by Ellen Stumbo 

Wednesday, October 24, 2012

Wordless Wednesday: On the move...

Ashlea has improved so much with her walking lately.

This is my usual view of her when we are out and about...

Monday, October 22, 2012

Celebrating Milestones {Writing Prompt}

I'm so glad this is the topic for today's writing prompt.  I was worried I would have to skip this week's topic if it was something 'deep' and 'heavy' as I knew there was a potential milestone looming on the horizon for TODAY.  The whole point of milestones is that they need to be shared with everyone and celebrated long and hard - so rather than listen to me reflect on how much it means to celebrate Ashlea's achievements - let's just celebrate one!

Today Ashlea's class had their turn leading the school in assembly - and more than that - Ashlea had a speaking role!  I cannot tell you how excited we've been and how many times we've practised her line:

Thank you Mrs B.  Mrs W would you please now lead us in a song.

This morning dawned with great anticipation.  We practised again before school.  And again and again.

Finally it came time for assembly and we waited with bated breath.  Would she pull it off or would she go down in a screaming heap?  Assembly is not her strong point due to the unpredictable noise levels.  Those enthusiastic renditions of such classics as My Highland Goat and The Lion Sleeps Tonight sometimes tip her over the edge.  Can't say I blame her.

She was great though!  She said her line!  Twice!

(Sorry the photo is a bit dodgy - but I have to crop / pixelate out everyone else for privacy reasons)

We celebrate milestones of all shapes and sizes in our house.  It may seem like a small thing to participate in school assembly - an everyday, mundane, normal thing - but that's the whole point! Ashlea is alive and well and participating in everyday, mundane, normal things!  When you weren't expected to survive everything is to be celebrated - from the great big milestones like walking and talking - right down to the 'everyday, mundane, normal things' like school assembly.

{Ellen Stumbo's Writing Prompt}

Saturday, October 20, 2012

You're Invited!

To a DisabiliTea!

The therapy team from Ashlea's school are hosting a DisabiliTea to raise awareness about the NDIS (National Disability Insurance Scheme).  The NDIS will directly affect everyone living with a disability.  Come and hear all about it and have the chance to have your voice heard - the local MP will be there.

Friday 26th October at 10am
Cafe Raw 101
283a Old Northern Road Castle Hill

Wednesday, October 17, 2012

Wordless Wednesday: Spring!

Recently I have seen a number of blog posts featuring the lovely spring flowers people have growing in their gardens.  I thought this week we'd join in.

With our delightful dandelions...

(no she's not holding them - they really do come up to her chin)

Audrey is horrified by my lack of gardening prowess and decided to try and rectify the situation...

I think our garden may be beyond help!

Monday, October 15, 2012

If I Knew Then What I Know Now... {Writing Prompt}

If I knew then...

That Ashlea would need a kidney transplant.

That she would have multiple disabilities.

That our lives would never be the same.

Would we have done things differently?

I'm sad to say that we may indeed have done things differently.  If we had been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure we would have assumed that she would have no quality of life and we may have requested she not be resuscitated at birth.  Or if we had found out that information in the first few days of her life we may have decided to withdraw care and let 'nature take its course'.*

But we didn't know.  

Thank God we didn't know!

What we also didn't know is how wrong we were to assume that someone with a disability would have no quality of life.

What we didn't know was that having a child with serious disabilities would be a blessing.

That we would love Ashlea just as she is.

That she would help us see what is really important in life.

That we would be OK with not getting the 'fairytale ending'.

What an eye opener it has been to live with Ashlea and her disabilities  We possibly would have made different choices if we had known - but we would have robbed ourselves of the joy and the delight that is Ashlea.  We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.

Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it - it wouldn't have helped because I WOULDN'T HAVE BELIEVED THEM.

Some things you have to learn by experience.

Thank God we didn't know.

* I know this is a hugely contentious issue but as a 570gm baby requiring full life support and in complete renal failure it was presented to us as an option.

(linking with Ellen Stumbo}

Friday, October 12, 2012

Delicate Question...

Now that Ashlea has gotten bigger I have run into a tricky problem.  I need advice from other parents 'in the know' about how you manage the delicate situation of toileting or changing your older child when out in public.

Often we change Ashlea by lying her down in the back of the van - but that isn't always practical - say for example if you are in the middle of the zoo and there is a near blow-out in a nappy. Yes there are disabled toilets at most places - but what about for nappy changes?  Some disabled toilets have those pull-down change tables but Ashlea is too big for them now.  Even if it could safely hold her I don't think I could easily lift her onto it - and I worry that she might fall off it.

For the close call at the zoo we did a standing nappy change with her holding on to the wheelchair.  It was tricky let me tell you!  I have never been more thankful for Ashlea's ability to weight-bare and it made me realise that disabled toilets are really for the quite 'able-disabled'.

So - what do you all do???

Wednesday, October 10, 2012

Wordless Wednesday: Inch-Stones

Ashlea is thriving since her transplant.  THRIVING.

Over the school holidays she helped us wash the car...

She wanted to dress like a ballerina when the other girls did...

She played babies (awesome pretend play - that baby got fed, changed and put to bed)...

She tried eating cake for the first time...

And ice blocks...

And she went on a ride with her big sister (rather than with an adult)...

These may be 'regular' occurrences for other children - but for Ashlea they are the delightful little moments that show how far she has come.  These little milestones are to be savoured - almost as much as the big milestones.

{Aussie Wordless Wednesday}

Monday, October 8, 2012

Defining Moments {writing prompt}

My defining moment isn't so much a moment as a person - it's Ashlea.  She is my defining moment.  When I think of my life I think of it as 'before Ashlea' and 'since Ashlea'.  Having her - being her mother - has changed me to the core.

Friends who have known me long enough to remember the 'pre-Ashlea' me will attest to the fact that I would have been the last person expected to cope with an Ashlea-like event!  But here we are - six years into this journey - not just coping - but being transformed by it.

Having Ashlea has taught me about what is really important in life.  The things that our society values are out of reach for Ashlea.  She is never going to get a great job or own her own house. She won't have academic or sporting or any other kind of worldly success.  But that doesn't matter! None of that matters.  What matters is that  Ashlea has a wonderful life - a life of quality, of love and of joy - and that one day she will be in heaven with God!  Nothing else matters - for Ashlea - or for any of us.

I can remember when Ashlea was very tiny and very sick begging God to 'just let me keep her'. I am so thankful that He did let me keep her and for the blessing that she is and the perspective that she brings.  Maybe that's the defining moment in and of itself - that Ashlea - and this life of disability are a blessing rather than something to be feared.

{Linking up with Ellen Stumbo}

Saturday, October 6, 2012

Best Holidays EVER!

This week we have had the lovely Jen and her daughter visiting from Perth for some school holiday fun.  We've hung out together, been to the beach, the zoo, the aquarium and hopefully tomorrow we'll get to Luna Park (Ashlea has a carousel addiction since we introduced her to it a couple of weeks ago).

We're having a great time - it doesn't matter that this is only the second time Jen and I have met 'in real life' - it's like we've been friends forever.  It may sound crazy to spend your holidays with someone you met on the internet - but since having Ashlea I have found so much support online from other mums of amazing children - there is no way I could have travelled this journey without them.  Many of us have 'known' each other since our children were very young and have watched our children overcome great obstacles and achieve things never expected of them.  They are the ones who 'get it' and I couldn't do this without their support.  It is such a delight when I get to meet them 'in real life'.

So thanks for coming all the way to visit us Jen - we're loving hanging out with you.

And you Melbournites better watch out - I think I might just need to make a bloggy travel trip to visit you all.  You overseas bloggers may have to wait awhile - I can't afford to travel that far - and there is also the little issue of my fear of flying to be dealt with first....but one day I'd love to meet you ALL face to face!

Wednesday, October 3, 2012

Wordless Wednesday: Doorbells

We are having a blast these school holidays - who wouldn't with such great weather??

Last week we went to Featherdale.  It's been awhile since we've been there so I primed Ashlea the night before by telling her what we might see there - koalas, kangaroos, dingos, etc.

Then I had a thought - I wonder if Ashlea even knows what a dingo is?  

So I decided to ask her.

What's a dingo Ashlea?  I asked.

Is a doorbell she says...

I love that girl - she's hilarious!

Aussie Wordless Wednesday

(And if you only stop by on a Wednesday please considering detouring via last Fridays post for an AWESOME video of Ashlea)

Monday, October 1, 2012

Holding my child for the first time {writing prompt}

The first time I held Emma I was still lying on the operating table after my caesarian - in fact I think the doctor was still stitching me back together when the nurse brought her over.  Murray and I held her in wonder - she looked so big - how had she fitted in there? Yet at the same time she still looked so little.  Even though I (obviously) knew where babies came from I can remember being a bit shocked that this child had in fact come out of me!

The first time I held Audrey she was 6 days old.  I hadn't expected to get to hold her so soon - she was still only 28 weeks 3 days gestation!  Was it safe?  Would she break??  Even though she was only the size of a kitten that first kangaroo cuddle was amazing - she just nestled into me and relaxed.  It was bliss and I was hooked - I tried to make sure we got a cuddle every day.

The first time I held Ashlea she was 28 days old.  I had to wait an entire month for my first cuddle with her as she had been too unstable until that point and would desat if anyone even touched her let alone tried to pick her up.

Twelve days after that first cuddle she was back on the ventilator with suspected sepsis.  I remember thinking Not now!  She can't die now!  Not after I've held her.  I think I had held off getting my hopes up that she was going to survive - until that first cuddle.  That cuddle had given me hope that she was going to make it - but with her return to the ventilator that hope was ripped out from underneath me.  I learnt not to get my hopes up again - to the point that I gave up believing she would make it out of the nursery alive.

Truth be told even when she did come home from the nursery I still didn't expect her to live.  We had had far too many close calls for me to be able to relax.  This year though Ashlea has started school - a milestone I once feared she may never reach - and I think I have finally broken free from the all pervasive fear the nursery left me with.  I'm excited and hopeful about her progress. It's scary because I know that there are still no guarantees - but mostly it is wonderful to look forward with joy and hope to Ashlea's future.

{Linking up with Ellen Stumbo's writing prompts}