Wednesday, February 27, 2013

(Not) Wordless Wednesday: Ashlea's Message

This time last year we were preparing for Ashlea's kidney transplant.

After 5 years of living with kidney failure and anticipating her transplant it is hard to believe that we are now nearly 12 months post transplant.  Ashlea is thriving since receiving the gift of life from her Dad.  Her kidney function is fantastic, she has so much energy and enthusiasm for life, she is cheeky and bossy and delightfully loving life.

Let me be even more clear about the benefits of transplant for Ashlea.

She is alive.

She is not on dialysis.

She is well.

I wish our story was just a 'good news story' and that there wasn't a flip side.  Sadly though there is a flip side and that is that as a result of giving Ashlea a kidney Murray now has an acquired brain injury.  I don't even want to say it out loud during donate life week as I would hate to turn anyone off the idea of becoming an organ donor - but seriously - if there were more people willing to be deceased organ donors then there would be less need for parents like us to risk our lives by being living organ donors.

Even if Murray had not suffered any complications we would still implore you all to consider becoming an organ donor - but in the light of what happened to him it is even more important.

Please consider becoming an organ donor.

Make your wish count by letting your family know your decision.  You could give someone the gift of life.

Sunday, February 24, 2013

Donate Life!

This week is Donate Life week.

The purpose of the campaign is to get people to Discover the facts about organ donation, Discuss their wishes with family and friends and Decide whether or not to become an organ donor.

Clearly we are biased and would love to tell you all to Donate Life!

Make your wish count!

Friday, February 22, 2013

Thoughts on silence...

One of the things I have found interesting on this journey is discovering which friends have the courage to 'go there' and have the hard discussions with you when life is tough - and which friends retreat into silence.

I know that most people who stay silent do so because they don't know what to say or they fear saying the wrong thing.  The problem with staying silent is that without realising it - or even intending it - silence says something loud and clear.

Staying silent refuses to acknowledge the reality of what someone is going through.  Silence gives a resounding message - one that pretty much says I don't want to know what you're going through.

The more insidious problem with silence though is that it also gives the message 'Don't talk about it'  to someone who is struggling.

Don't talk about what's really going on.  

It's not OK to tell it like it is.  

Regardless of whether you speak or stay silent the person's situation still exists.  It is what it is whether it is acknowledged or not.  Other people may feel very differently to me, but I think it is better to speak than to stay silent.  Obviously that is not a hard and fast rule because there have been a few awful things people have said to me over the years - but aside from those who are truly clueless - I think it is better to say something.

Acknowledge what is really going on.

Give people permission to speak if they wish.

Don't judge if they say outrageous things while they are processing their thoughts.

Be gracious.

But most of all - don't be silent.

Wednesday, February 20, 2013

Wordless Wednesday: And So It Begins...

Beginner Band.

What they lack in talent they make up for with enthusiasm.

Can anyone recommend a good brand of ear plugs?

{Aussie Wordless Wednesday}

Sunday, February 17, 2013

Sunday School - Ashlea style

Prayers - Ashlea style...

Dear God

Thank you for Jesus...

I be in heaven one day...

I gonna sleep in baby Jesus' bed...

She's too cute.

I asked her what Sunday School was about today.  Her answer:

It was about Jesus.

She knows she's on a winner with that answer.  When I asked her for more details she said:

He teach us about the memory verse.

In other news it is Aunty Carolin's birthday tomorrow.  We celebrated by getting us her a chocolate fountain...

Clearly from the lack of flowing chocolate we had a failed first attempt
- but it still tasted good

Ashlea had her first taste of chocolate today -
I think she was a fan...
Must be genetic...

And finally - thank you all for your comments, texts and emails of support regarding Emma.  She has had a reasonable day today.  I am not naive enough to think one better day means we've turned the corner but I am still thankful for an easier day.  Hopefully it will lead to a string of better days!

Friday, February 15, 2013

A New Title

I have a new title to add to my collection.

Chief Poop Inspector

You're all jealous of my glamorous life right now I can tell.

Emma and her quirky tummy are driving me to distraction.  In an effort to get to the bottom of the problem we went to the GP today - which resulted in a horrific blood collection experience and the auspicious job of me being crowned Chief Poop Inspector (and Collector - but lets not go there) for the next 3 days.  The pathology experience was horrible, humiliating and degrading.  Emma was hysterical and trying to run away all the while screaming blue murder and the 'helpful' pathology collector was a cow who implied it might be a good idea for us never to darken her door again.

My biggest concern with Emma's tummy problems is that when you combine them with anxiety they make for a slippery slope. When Emma eats - her tummy hurts.  So she doesn't eat - but that makes her tummy hurt too.  So she keeps not eating.  It's a very short ride from there to a type of eating disorder where the goal isn't to be thin it is to try and control anxiety and tummy symptoms.  Emma has already lost weight and hasn't grown in ages making her an 18kg, 116cm almost 9 year old (which puts her completely off the growth charts).

In some ways it would be easy if she just outright tested positive for coeliac - then at least we would know where to start.  My biggest fear is that this is all behavioural.  She had such a meltdown at the pathology place this afternoon - and another one again in the shops. I don't know what to do with her.  Is it me?  Am I doing a bad job parenting her?  Is it all my fault?  Or is something wrong with her?  If so, is it physical or emotional.  One thing I do know is that we had none of this before Murray's brain injury.  She has always been a bit highly strung - but nothing like this - she is completely falling apart at the moment.

Hopefully we will get some of her test results back in a week but I am really not expecting them to show anything.  After that I want to try either the Failsafe Diet or an elimination diet of some sort with her to see if it helps her tummy as well as her behaviour.  My friends who do the Failsafe diet with their kids say the behavioural improvements more than make up for any hassle in following the diet.  I would love to hear more people's experiences so please leave a comment if you've tried it.

I feel like this afternoon marks Emma's official move from sibling status to special needs status - not in the same league as Ashlea - but definitely not like other kids her age.

Tuesday, February 12, 2013

If Time Stopped {Writing Prompt}

Imagine if time stood still.

Even better - imagine if you could stop time at will?

The first time I'd use that super power would be at 7am so I could sleep for an extra hour without any consequences.

I'd stop it again at 5pm during the dinner / bath / bed rush hour so I could get all my afternoon jobs done and then sit down to a nice calm dinner with the kids.

It would get addictive though.

I'd pause it during my lunch break, whenever the kids were sleeping, whenever I was sleeping - whenever I needed more time.

What would make it even better though would be to be able to stop time AND everyone else - like Samantha used to on Bewitched.

Then the possibilities would really be endless!

Imagine being able to stop the world just after your child's doctor has told you something you really don't want to hear?

I'm sorry your twins need to be born today.

I'm sorry, she is very sick - we just have to wait and see.

I'm sorry, her kidneys are failing she will need a transplant.

Imagine having a moment where everyone else was frozen in time and you could scream at the doctor exactly what you thought of what they had just said?  That would be so therapeutic.

If you could when would you stop time?

{Ellen Stumbo Writing Prompt}

Friday, February 8, 2013

Be real {Writing Prompt}


I don't know if I can.

I have been thinking about this writing prompt all week and it's now Friday and I've still got nothing!

What does it even mean to be real?  In some ways I think I'm pretty good at being real in that I have a low tolerance for crap and pretence.  On the other hand I'm not sure that I even know how to be real anymore.


Firstly I wonder - do people really want me to be real?  REALLY real?  I know people are curious about us - but do they really want to know what it's like?  The actual ins and outs, nuts and bolts, bodily functions and medical emergencies that occur on a regular basis.  Are they able to hear about the same problems day in day out, year in year out?  Because my problems aren't going away any time soon.

Secondly, sometimes I am sick of this reality myself!  There IS no short term solution. Talking about it isn't going to miraculously fix everything - sometimes I just want a break from real life.

And thirdly - seriously - what self respecting Aussie wants to be known as an over-sharer???

Fortunately I do have a few friends who I can be 'really' real with, who will listen without judging but also tell me the truth when I need to hear it.  I have all bases covered in this area - my Christian friends who encourage me to persevere when the going is tough, one particular non-Christian friend who I can have conversations consisting entirely of swear words with, and other parents of children with disabilities who it is easy to be real with because we live in the same world.

For those of you who ask me how I am and then marvel when I say 'good thanks' - most likely I'm lying through my teeth to you, but if I'm not real with you it is because in that moment I can't be - either because 'you can't handle the truth' or I can't!

{Ellen Stumbo - Writing Prompt}

Wednesday, February 6, 2013

Wordless (?) Wednesday: One Week In...

We have been back into routine for a week now.

Ashlea has settled back into school easily.  Her biggest problem - as usual - is hair management. Her teacher resorted to this today:

Don't tell me I have crazy hair Mum -
 I get it from you

In spite of her good start she did have a meltdown today.  When I asked her what happened she said - very indignantly - they sing at me!  Fair enough.

Audrey has settled easily into year 1 with a great teacher.

Butter wouldn't melt in my mouth...

Emma has settled in OK and has a great teacher but the pay back from returning to school has been increased anxiety.  Every night there is a bed time kerfuffle.  Every morning there is a sore tummy before school.  She's already been to the school office to try and get sent home (thankfully the office know what is going on and support me when I say no way am I coming to get her). Sigh.  If you're the praying type please pray for Emma.

Can I have an app if I let you take my photo?

I have survived my first few days back at work.  I have eased back in with some easy jobs to start with - but seriously those IT people (that I'm meant to be one of) - sound like they're speaking a foreign language sometimes!

How are you coping with the return to routine?

Aussie Wordless Wednesday

Saturday, February 2, 2013

Walking In Her Shoes {Writing Prompt}

Do you ever wonder what it would be like to walk in someone else's shoes?  To live their life? Walk their path?

I am pretty sure there wouldn't be many takers if I offered people the chance to walk in my shoes even for just a day.


*insert sound of crickets chirping*

Don't worry - there are plenty of times I don't want to be walking in my shoes either.  Especially when my shoes are taking me to the Emergency Department or to a small room where I will have to hold my child down for a medical procedure (or be told something I really don't want to hear).

But you know what - there is something very freeing about walking the path that no one else wants to walk.  No one wants what we have - disability, sickness, lack of income - we live outside society's view of what is desirable.  The thing about walking this path is that it brings into sharp focus what is and isn't important - that is not something I would ever want to lose sight of. As much as I would love to have an easier road there is no way I would want to lose the perspective I have gained from this one.

I guess the tricky thing about this path though is that if you look down - at your old, battered shoes that pinch and hurt and at all the pot holes in the road - the temptation is to give up and fall into a pit of despair.  The thing that this path teaches is to keep your eyes focussed on what is ahead - on the unseen eternal glory that is coming - rather than the day to day drudgery of putting one foot in front of the other. The irony is that even as I type this I am aware of how much I have been 'looking down' lately rather than keeping my eyes on what is ahead - so this is a good reminder to keep my eyes on the prize.

Walking in these shoes has also allowed me to empathise just a little with other people who find themselves walking on a path not of their choosing.  I can't tell you how much it has meant to find people walking a similar path to me - I hope that I can be that in return for others.

So as much as other people probably wouldn't want to walk in my shoes I'm not sure I'd want to walk in theirs either.  These shoes, this path, this journey was designed specifically for me - only I can walk it and learn the lessons tailor made for me.

{Ellen Stumbo Writing Prompt}