Sunday, March 31, 2013

Anniversary Thoughts...

Friday was one year since Ashlea's kidney transplant.

Which means that today is one year since Murray's brain injury.

The last couple of weeks have been so busy that I haven't really had time to reflect on the anniversaries in the leadup.  On Friday I was aware throughout the day of where we were up to 'this time last year'. Eg - this time last year we had just been called down for surgery, this time last year she was out of surgery and in ICU - that sort of thing.

This morning Emma woke me up at 4:30am - which coincides exactly with when it all happened last year.  Of course then I couldn't stop thinking about it.  Would he have been unconscious by now?  How long does it take to slip into unconsciousness anyway?  I wonder what time would the aspiration have occurred?  Now it's  5:30am - that's roughly when the code was called.  I wonder what that was like?  Is the nurse who was looking after him that night working again tonight? Does she remember?  Has her life been changed by this event??

By the time it got to 8am - the time I first had any inkling there was a problem - I was feeling sick and anxious and overwhelmed.

I'll be glad when anniversary day is over.  Even though I haven't thought about it that much in the lead up I am aware that it has been niggling at me.  Murray is not really aware that today is THE anniversary and I don't think the girls are either.  Seeing as it is also Emma's birthday I am not going to mention it to them - we are just going to celebrate Easter and the 'festival of Emma'.

I am glad that the anniversary falls on Easter Sunday.  Today is the day that Christians remember that Jesus rose from the dead thereby securing our own future resurrection. His resurrection means that a brain injury in this life - while still devestating - isn't the completely hopeless tragedy it could  be.  Today is a good day for the anniversary as it is the day we remember that this world is not all there is and that there is so much more to come for those who believe. Brain injury will not have the last word.  Jesus will have the last word when He raises Murray to new life with Him.

No brain injuries in heaven.

Come Lord Jesus.

Friday, March 29, 2013

Happy Kidney-Versary Ashlea!

One year ago today Ashlea's life was transformed by the generous gift of a kidney from her dad.

The night before the transplant I took these photos of the girls:

28th March 2012

 I decided that last night we would try to replicate the photos:

28th March 2013 - Look how much I've grown!


A photo can't do justice to how well Ashlea is doing since transplant.  She is thriving.  She had kidney clinic last week and her creatinine is still a lovely 39 and all her other blood numbers are delightfully normal

She has always been a cheeky monkey but she has just blossomed over the last twelve months. She has so much energy now and is so much more aware of and interested in everything happening around her.  She can concentrate for a lot longer on her school work, her stamina for walking in her walker has increased to the point that she now spends all day in it in school and one obvious difference is that she has started growing - she finally cracked a metre in height in January!

I asked the girls what they thought the biggest change in Ashlea was since transplant:

Emma said: "how happy she is and how bossy she is";

Audrey said: "she used to be very quiet and now she's not.  She's got noisy.  She has grown. She has learnt how to walk."

Other friends have commented on her talking, her walking, her eye contact, how healthy she looks, how much energy she has and on her "fullness in body and spirit - her vibrancy and vitality".

What more is there to say?

She is healthy and living and thriving and loving life.

The only other thing that could be said is: donate life!  

Consider becoming an organ donor.  The slogan says you could give someone the gift of life - and that really is what you are giving them.  It's not just that they are still alive - it is that they get to live - really live - as a result.  Why wouldn't you want to give someone that gift?

Wednesday, March 27, 2013

WW: Match The Quote

Can you match the quote to the child?



Quote 1: I fall down and eat some dirt!

Quote 2: I hate being a kid!  I hate having consequences for my behaviour!

Quote 3: (during prayers) Dear God - thank you for the lovely life we're living.


They are pictured in birth order - Child 1 on the left, Child 2 in the middle and Child 3 on the right.



So - which quote belongs to which child???


{Aussie Wordless Wednesday}

Monday, March 25, 2013

Easter Harade

Today is the school Easter Hat Parade - otherwise known as the Easter Harade by Ashlea.






Sadly I couldn't attend as I have to work.

I am finding it increasingly difficult to juggle all the different needs of everyone in our family now that I am back at work.  It's not the work itself - that part is OK - it's that I don't have time to do all the other things I need to do now that I am back at work.  Ashlea still has multiple appointments.  Emma's needs have gone through the roof (not least of which is keeping me up until midnight every night as she can't wind down to go to sleep and then backing up with a mega meltdown at school drop off).  Murray is sliding into depression as he realises what he can no longer do.  No wonder poor Audrey wants to escape to next door all the time.

I really don't know what to do.  I would like to not have to work full stop (wouldn't we all).  I feel like there is only so much I can do and I am pretty much approaching breaking point at the moment. My sanity is what ends up being on the line!

If money were no object I would just leave work to look after my family, but money is a significant reason to keep working (although I've just done the Centrelink calculator and apparently we are only $20 worse off if I work 1 day a week compared to 3 days...what's with that???).

Sigh.

Thoughts???

Friday, March 22, 2013

A Tale of Two Discos

Last night was the school disco.  Usually it is a time of great excitement for Emma and Audrey.

Audrey was excited as usual and had a great time.

Another chance to wear a dress!!!


And a tiara!
 Emma not so much.

I'll wear a dress but not sandals!

Even though she was excited by the idea of the disco her anxiety prevented her from attending :(

I am so angry and frustrated that she has to suffer this anxiety and that it is stopping her doing things she previously enjoyed.  In some ways she is so fun and bright and outgoing - yet she is being paralysed by this anxiety.

Not many people get to see this Emma anymore

This has all come on since Murray's brain injury - what really gets me riled up is that the people involved in Murray's brain injury are not the ones feeling the consequences - we have been left to pick up the pieces.

*** For those who are wondering what we are doing to help with the anxiety - Emma has been gluten free for a month now with some improvement but not enough to blame all her quirks on gluten.  I think we need to try the full FailSafe diet to see if that helps.  If not we might need to look into medication options.  She is seeing the paed next week and a new psychologist the week after.  ***

Tuesday, March 19, 2013

Need Advice!!

I need advice on a few topics so thought I'd see what the the wisdom of the internets has to offer....where else would one go for good, quality information??

Here goes...

1.  I'm seriously considering switching to the blenderized diet for Ashlea ...

My gut is telling me it is probably a lot healthier for her than just having formula day in and day out but it seems like a lot of work.  A LOT of work.  Who does it?  Is it really that much work? What is your daily feeding regime and what 'recipes' do you use?  Are you completely formula free or do you use a bit of both?

Which brings me to my next point....

2. Thermomix....should I consider buying one?

They're so expensive but if I am doing the blenderized diet I wonder if it would be worth it?  Do you have one?  Is it worth it?  Am I crazy to even consider parting with that much money for a kitchen appliance??

3.  Birthday Parties

Am I crazy to hire a jumping castle and try and have 3 kids birthday parties on the same day?  I am thinking of having an 'open house' type of party with birthday cake for Ashlea at 11am, Audrey at 1pm and Emma at 3pm.  Too crazy???

And lastly...

4.  How long before this venture goes pear-shaped??



Tomorrow Ashlea has a full day of appointments at the hospital (which is fine - nothing new there) but as well as the wheelchair we need to take the walker, the wedge and our purple bin.  I am planning on going on my own as Murray has Tafe.  Ashlea is keen to walk while I wheel 'the stuff' in her chair. How far do you think we'll get before Ashlea is crawling on the floor and I have had to abandon the pile of goods and chase after her?? Wish me luck!!

Sunday, March 17, 2013

Why I don't like St Patrick's Day

Anyone want to take a guess as to why I don't like St Patrick's Day?

It was on this day 7 years ago that I was first diagnosed with Twin-Twin-Transfusion Syndrome - the only reason I remember the date is because it was St Patrick's Day.

The problem is that everything we are going through now feels connected to that TTTS diagnosis. If there were no TTTS there would have been no prematurity.  If no TTTS and prematurity potentially Ashlea would not have a disability - so if not for TTTS I could have had perfectly identical identical twins.

But wait there's more.  If there were no TTTS there would have been no kidney failure, and if no kidney failure there would have been no need for a transplant - and if there were no transplant there would have been no complications for Murray.

The connections go back even further than the TTTS diagnosis though.  If we didn't pursue IVF to have children our chances of having ID twins would have been much lower.  If no ID twins then no TTTS.  If no TTTS then no kidney failure, no transplant and no hypoxic brain injury for Murray.

It's all connected and at many points along the journey we have made choices and those choices all seem to have lead us to where we are today.

We chose to try and have another baby after Emma - which lead to us having ID twins (not that we chose for the embryo to split - that bit definitely wasn't up to us!);

When things went wrong with the pregnancy we chose to resuscitate both our babies rather than let them 'succumb';
We chose to continue with intensive care with Ashlea even when she was very sick; 
We chose to give her a kidney from one of us rather than starting dialysis and waiting on the transplant list.


I don't think any of our choices were bad choices - and chances are I would make the exact same decisions again - but days like today make me stop and think about what my life might be like had I made different choices.

What if we had decided that one child was enough and just had Emma - maybe she would struggle less if it was just her?  I think she'd be pretty lonely though - she loves her sisters;
What if we had not resuscitated Ashlea at birth?  I couldn't imagine my life without her - she is such a delight.  I can't imagine the grief I would have felt if she hadn't survived.  I don't know if having an 'easier' life without any disability in it would be enough to make up for that grief? ;
What if we had decided not to do a directed kidney transplant?  Ashlea would most likely be doing peritoneal dialysis every night while we waited for a donor.  I'm glad she's not doing that - her quality of life is so good now I couldn't imagine going back to chronic renal failure - but the transplant lead to Murray's brain injury;
Our choices have definitely lead us on an unexpected journey.

I'm not sure how the interplay between our choices and God's will works on a practical level.  Is it just a consequence of our choices that Ashlea is living with disability?  Or did God ordain before time began that this was to be her life??  He knows the number of her days and the place He has prepared for her in heaven - and also the blessings for me to discover along the way as her mum.  In some ways we are living with the consequences of our decisions but I prefer (need ?) to believe that this is all part of God's great plan.  It might be hard to see God working in the messy details of day to day life but one day when all is laid bare, God's plan for Ashlea's life will be plain for all to see and I am confident that it will show God's goodness and result in praise and glory to Him.

I find it much harder to apply this to Murray's brain injury though - probably because that feels like it is the consequence of other people's decisions rather than our own which somehow seems harder to live with.  If God is indeed in control of all things He must also be in control of this and can somehow use it to His glory - even though from this vantage point in time it seems very hard to see how.

Friday, March 15, 2013

Writing Prompt: I Don't Miss It

NICU Mums - are you with me??


I pumped around the clock for a year after the twins were born.

It's pretty safe to say I don't miss it.


{Ellen Stumbo Writing Prompt}

Wednesday, March 13, 2013

WW: 3 Girls In Pyjamas

Ashlea was being very cute and cuddly with her sisters the other day so I tried to get a photo of them all together...

So cute - having a cuddle...


So innocent - ready to say prayers...

The real reason they had to keep their hands where I could see them??

Ashlea was trying to pull their dresses up...

And was PINCHING them...

Just as well she's cute and they love her!

{Wordless  Wednesday}

Monday, March 11, 2013

Of Judgement and Genetics

This gorgeous child is really struggling.



Her behaviour is really testing me.  The anxiety, the sore tummies, the tantrums, the not eating - I'm in over my head.

Once again it has been interesting to see people's reactions.  Some people are very sympathetic and understanding but then there are others who are downright judgemental.  This post is aimed squarely at them.

STOP JUDGING MY PARENTING!!!

It is so easy to assume when a child is struggling that it must be because the parents are doing something wrong. In reality it is more likely that the parents are doing the best job they can with the resources they have available to them.

I am doing the best job I can with the resources I have available.  Judging me isn't going to help - all  it's going to do is add to my sense of isolation.  I know this is way more ranty than I usually get but I have a bee in my bonnet about this at the moment because those who are quick to judge seem to not realise that there is no logic to their argument.

Look at my other two kids.  Look at Ashlea - she is thriving.  We do everything possible to keep her well and happy - and she is both of those things.  Now take a look at Audrey.  Not only is Audrey very low maintenance she is also lovely, sweet, obedient and easy going.  She is the model child.

How can I be doing such a bad job with one child but such a stellar job with my others???

There has got to be more to the story.  Genetics and temperament have to come into the equation.  Perhaps even birth order and the increased sense of responsibility that comes with being the eldest?  All my children have had the same parenting experience and yet Emma's behaviour is wildly different to her sister's - surely that alone shows that there are other factors involved.

I know I'm not the perfect parent.  I have plenty of areas that I could improve - we all do.

But I am doing the best I can with the resources I have available.


DISCLAIMERS
* In reality the judgers are in the minority
** I have many awesome friends who are anything BUT judgemental
*** Yes this is a good reminder to myself as well to not judge other parents
**** And yes it is a bit narky but it is anniversary month and I am feeling narky about lots of things....stay tuned...there may be more rants to come...

Friday, March 8, 2013

Where I Belong {Writing Prompt}

Ashlea in the early days of therapy...
...how many of us have owned one of these chairs...?

I remember early on in our journey with disability I would take Ashlea to therapy activities and all the while I'd be thinking We don't belong here!  Actually I wasn't so much thinking it as silently screaming it inside my head.  Group activities were particularly difficult - seeing Ashlea among other children with disabilities - often severe disabilities just broke my heart.

Not my Ashlea.

Not like this. 

We don't belong here!!

After awhile though I realised we did belong there.  We so belonged there!  Ashlea really was disabled - significantly so.  I couldn't deny it - we were part of the disability community.

The surprising thing that I also discovered was that it is OK to belong here. 

It is OK to not get the fairy tale ending.

Life can still be very, very sweet here in the land of disability.  There is a richness to life and an appreciation of what is really important that comes from belonging here - and also some incredibly inspiring children and parents to hang out with.

In some ways though my original thought that we don't belong here still holds true.  This earth, this worldly place of suffering and sorrow is not where I will find ultimate belonging - there is a much better place still to  come - a place where every tear will be wiped away and there will be no more death or mourning or crying or pain.  Knowing that this world isn't all there is - and that my true home is still to come - is the thing that gets me through days like today where I have heard about a 2 year old warrior losing his battle with kidney disease and another tiny baby just starting theirs.

Thank God that we don't really belong here and that there is something far more wonderful to come.


{Ellen Stumbo - Writing Prompt}

Wednesday, March 6, 2013

WW: But Wait - There's More...

Two weeks ago for Wordless Wednesday I showed you a picture of Emma with her trumpet for school band.

But wait - there's more.

When you're in Year 3 at our school you can also join the African Drumming Troupe if you want. Of course that was right up Emma's alley so we now have one of these at home too...


Oh yes - let me tell you we are popular with the neighbours!


Everyone loves the drum:

video



{Aussie Wordless Wednesday}

Friday, March 1, 2013

I Didn't Know {Writing Prompt}

Ashlea

I didn't know my life would be so much richer for having you in it.

I didn't know how much joy and delight I would get from celebrating your achievements.

I never dared believe that one day you would be able to do this:



I didn't know what a blessing you would be to our whole family.

I thank God every day for giving you to us.


{Ellen Stumbo Writing Prompt}