Saturday, November 30, 2013

Thankfulness Day 30: Christmas - Alfred Hitchcock Style

Today we put up our Christmas tree.  Emma loves birds and it seems they are very popular as Christmas ornaments this year so I went a little crazy and bought some lots.  Our tree may look a little like something from Alfred Hitchcock's The Birds...just with more glitter.

He sees you while you're sleeping...

Today I am thanking God for:

- the fun that is putting up the Christmas tree with the kids;

- Christmas carols to sing to while doing it;

- the reminder that Christmas is all about Jesus;

- the great gift of eternal life that is ours because of the first Christmas (and Easter);

- a quiet weekend;

- dessert tonight with yet more awesome mums;

- the continuing power of Pokemon;

She's like putty in my hands if Pokemon cards are on offer

- the discipline of thankfulness.  In reality I have so much to be thankful for - sometimes for whatever reason though I can't see it.  I have found it enormously helpful to deliberately choose to see the good;

- although truth be told I am a little thankful that I don't have to think of a list tomorrow;

- and a big thank you to those of you who have joined me for 30 Days of Thankfulness.  It has been wonderful reading all your thank yous too!

Friday, November 29, 2013

Thankfulness Day 29

Today I am thanking God for:

- leftovers for dinner;

- a physio appointment to treat my aching back (although she didn't 'physio' me - she stuck pins in me. Did I miss something?  Is this standard practise now?);

- a hair cut - in a salon - without children;

- a friend to hang out with - especially when that friend knows you've eaten an entire garlic pizza the night before;

- friends with cool toilet seats;

- cool toilet seats found at Bunnings (look - Ashlea can use it without falling in the toilet and I don't have to take an insert out after each use.  These are important things!);

- the continued power of pokemon - Emma is the only one with homework next week.  I bribed her with pokemon to finish it this afternoon so that now we are officially DONE with homework for the year;

- the new roundabout at the end of our street which so far is doing it's job of making it safer to turn;

- an end to 6:45am roundabout construction trucks rumbling into action right outside my house;

- it's Friday!

Thursday, November 28, 2013

Thankfulness Day 28: The Ashlea Edition

Little Ashlea hasn't yet had a turn at being the subject of my thankfulness.  Today I am thanking God for her - her life, her love, her awesomeness.

I am thanking God for:

- her very life - that we have had 7 1/2 years with her.  When she was born we didn't know if we would get 7 days or even 7 minutes.  What a blessing it is to have had 7 years.  Hopefully there will be many more to come;

- that Ashlea's journey has helped me not take for granted the gift of time with my children. The cold hard truth is that anything could happen to any one of us at any time.  We are fragile human beings.  We break.  We have far less control over our lives than we realise.  I am thankful that Ashlea has helped me see this clearly.  It's a scary reality to live with but I would rather have this insight and learn to number my days aright;

- her stubborn determination and outright bossiness that have helped her overcome many hurdles and achieve many so called 'impossible' milestones;

- her shower singing, constant chattering, Talking Tom loving cheeky sense of humour that enables her to have fun in nearly every situation;

- that she is thriving since her transplant -  healthy, growing, developing, progressing, advancing,blossoming, flourishing, THRIVING I tell you;

- that she has shown me that a person's worth is not measured in their achievements but in their humanity;

- that she has shown me that quality of life does not belong solely to those of able mind and body;

- for all the other amazing children and families we have met that we would not have otherwise met;

- for the way Ashlea by her very life demonstrates the gospel.  Ashlea is so dependant and trusting, she is one of the 'weak' thing of this world, one of the 'weak' things that God will use to shame the wise.  We who are able and 'strong' often forget our dependance on God;

- for the hope of heaven that is now ever present in my life.  Don't get me wrong - I love Ashela just as she is - but as a Christian I know that one day she will be in heaven with her new and perfect resurrection body.  Can you imagine that day?  Imagine seeing her on that day - seeing her as she realises she has been transformed and is no longer subject to the limitations of her earthly body.  I long for that day when all who believe will be clothed in glory and no longer subject to the suffering of this world.  O glorious day!  Come Lord Jesus!

1 Day

1 month corrected

1 year

2 years - finally some head control

3 years - able to W sit

4 years - upright in a special walker

5 years - WOW - what happened in that year!?

6 years - and a gift from Dad

A brave recovery

A Delightful Big Girl

Wednesday, November 27, 2013

Thankfulness Day 27

Today I am thanking God for:

- morning tea with some awesome mums;

- arvo tea with some more awesome mums;

- friends who have big kids who gift my big kid with hand-me-downs;

Look at that Pokemon collection now - although we still don't have Lugia
and apparently this is a serious problem!

- the bargaining power hand me down Pokemon cards give me;

- seeing Emma skip into school this morning - I still had to stand in my special spot and watch until she was gone but I tell you she skipped;

- second last lot of home work for the year completed (as much as it's going to be anyway);

- a laundry make over plan;

- a step-and-rail for the toilet plan;

- a toilet training plan (toilet timing actually but you've got to start somehwere);

- and the chocolate cafe tonight with yet more awesome mums.

Tuesday, November 26, 2013

Thankfulness Day 26: The Taken For Granted Edition

It is at about this point in the 30 Days of Thankfulness challenge that I start to run out of inspiration.  Today I am going to give thanks for the very many things I have that I take for granted every single day.

Today I am thanking God for:

- a roof over my head - and not just a roof but a multi-roomed house - with electricity and plumbing;

- clean drinking water - as well as clean water to shower in and flush down my toilet;

- access to good quality affordable healthcare - less than 10 minutes away;

- access to good schools for my children;

- access to an abundance of healthy food;

- clothes to wear even when I feel like 'I've got nothing to wear';

- a car and (relatively) safe roads to drive it on;

- the Police, Fire Brigade and Ambulance who are all only a phone call away in an emergency;

- freedom to meet with other Christians without fear of persecution;

- and the bible in my own language.

It is that time of year again - time to buy Christmas presents for teachers and therapists.  Rather than buying chocolates or useless trinkets I have just purchased some of these things that we take for granted every day for people living in poverty from this website.  We really have SO MUCH compared to so many people in the world.  So many things we take for granted.  So many things to be thankful for.  So much perspective needed!

Monday, November 25, 2013

Thankfulness Day 25

Today I am thanking God for:

- an awesome birthday present found for Audrey - yes I know her birthday is 6 months away but it just so happens that in 6 months time Barbie The Musical will be playing in Sydney;

The singing... The dancing...The PINK!!!

- one child with no more homework until next year - hurray;

- time to get some bible study preparation done;

- gingernut biscuits to dunk in my tea (salt free ginger nut biscuits no less);

- that I haven't yet strangled oldest child - she is presently having a tantrum because I won't let her sleep on the floor (yes I am being serious);

- for the persistence of oldest child - hopefully it will help her as she grows up;

- for a nice long hot shower to hide in away from the tantrum;

- a bathroom door with a lock;

- chocolate;

- and a soft, comfy place to sleep (for me anyway);

Sunday, November 24, 2013

Thankfulness Day 24

Today I am thanking God for:

- slow Sunday afternoons;

- a fine start to the Ashes for the Aussies (the real series starts now that the Poms are in Australia - forget what happened over there earlier);

- time to push Ashlea on the swing;

- a mega mountain of washing folded;

- a nasty fridge surprise dealt with;

- home made pizza for dinner;

Aren't you glad I took a photo of the pizza and not the nasty fridge surprise?

- Sards Wonder Soap to get pizza sauce out of my clothes;

- Aunty Carolin's patience for playing Hide and Seek and learning the intricate rules to the Pokemon Trading Card Game;

- tissues and claratyne (anyone else still got hay fever?);

- and encouraging words in church this morning.

Saturday, November 23, 2013

Thankfulness Day 23: Audrey's List

Today Audrey is in charge of writing the thankful list.  She is thanking God for:

- her best friend Mia from next door;

Audrey and Mia

- Mia's birthday party today;

- getting to stay and play for the whole day;

- getting to help Mia play with her new presents - especially the Barbies;

- birthday cake;

- sausages in bread;

- jelly and cake pops and party games;

- dresses and make up;

- singing;

- and for moving up a level at choir next year so we don't have to get out of bed early anymore (she is not a morning person).

I am trying not to take it personally that Audrey would likely rather live next door with Mia than with us!  As my 'middle child' it is very easy for her to be overlooked so I am thankful for the relationship Audrey has not just with Mia but with her whole family.  They say it takes a village to raise a child - and when life is rather complicated like ours that is even more true.  Our Super Neighbours are a vital part of our village!

Now if only someone would move in on the other side of us with a 9 year old nerd girl we'd have the neighbourhood sorted.

Friday, November 22, 2013

Thankfulness Day 22

Today I am thanking God:

- for a day to myself;

- some Christmas shopping done;

- double choc fudge brownies;

- washed down with Pepsi Max;

- for a quote for a new cupboard to deal with this:

- that my child was not present for the 'great breath-holding competition' the year 3 girls at school held that resulted in the ring leader fainting splat on the classroom floor;

- that I'm not a teacher;

- that Ashlea had fun at the school's annual Boccia challenge today;

- and that Audrey got to see her score a point (I've never seen a full game so I don't really know what that means...);

- that the promised 3pm rain storm wasn't as bad as predicted (Mythbusters really should do an episode on why it always rains at school pick up time);

- for lazy Friday afternoons after school;

- breakfast food for dinner;

- and the promise of bed!

Thursday, November 21, 2013

Thankfulness Day 21: Good Times

The last couple of days the girls and I have stopped to have some fun.  Today I am thanking God for:

- fun times with my girls;

- a successful family trip to the Opera House to see Peppa Pig;

- lovely weather to enjoy our lovely city in;

- Ashlea's improved noise tolerance - she was able to stay in for the entire performance even though there was lots of audience participation (ie screaming children);

- the lovely people at Variety for organising a fantastic Christmas Party for kids with special needs or who are disadvantaged;

- the joy that Ashlea gets from sitting on Santa's knee - she could have stayed there all day.  Although I think he was rather surprised to hear her ask for a cuckoo clock for Christmas;

- swinging;

- ducks;

- all the people who gave up their time to help make this event such a success;

- one last cuddle for Santa

Wednesday, November 20, 2013

Thankfulness Day 20: The Emma Edition

Today I am thanking God for my first born child Emma.  All our children are IVF babies but after thinking we may never have any children I am so thankful that this little bundle of energy came along. I am thankful for:

Staring competition with Mum...
Age 9

- her friendly, talkative nature,

- that her friendly, talkative nature with a boy visiting next door resulted in us becoming friends with our awesome neighbours;

- for her healthy birth and the 'normal' introduction to parenting she gave me;

- her intelligence;

- her technological savvy;

- her love of animals - particularly birds;

- her loyalty to her friends;

- her honesty;

- that she doesn't 'follow the crowd' but does her own thing;

- her love of lego, computers and all things non-Barbie;

- the way she has always loved and accepted Ashlea, made the effort to play with her, be silly with her and make her laugh.  Somehow she has always just got that Ashlea needs special allowances some times - and hasn't been resentful of any extra attention she has needed.  From very early on if asked about Ashlea she would always say 'We just love her'.  I LOVE that.

1 minute

1 week
1 year

2  years
3  years

4 years
5 years

6 years

7 years

8 years
9 years
Mum won the staring competition...

Tuesday, November 19, 2013

Thankfulness Day 19: Boring Old Tuesday Edition

Today I am thanking God for an uneventful Tuesday.  I am thankful for:

- 3 children who attended school today;

- Tuesday bible study and the opportunity to talk with other women about how the bible applies to our lives and to pray for and support each other;

- some sunshine after all the crazy rain and wild weather we've had in Sydney over the weekend;

- Super Neighbour Kate's sewing skills - she made Ashlea some cute bibs for school (Ashlea is in to chocolate custard at the moment - it does not mix well with white school shirts) and a cool bag to hang off her walker;

- that Ashlea can eat an entire tub of chocolate custard if she's in the mood;

- for an hour to sit quietly before school pick up;

- for a persistent school OT.  A couple of weeks ago I was thankful that Ashlea's school computer got funded.  We were wrong - funding was knocked back - but the school OT is undeterred and we will try again;

- home work done and dusted for the week (surely this is the last week???);

- for the energy to cook dinner - some nights I just can't be bothered - thanks to thermie we had chicken curry tonight (and I didn't even shred it);

- one more sleep until Peppa!

- and the wonder that is botox - even though it hasn't fully kicked in yet Ashlea's right foot is already so much flatter and is much less turned in.  When she stood up today it was so much smoother and more controlled (click here to see standing up before botox);

1 Day After Botox

Monday, November 18, 2013

Thankfulness Day 18: Botox Day

Today I am thanking God for:

What did we do in waiting rooms before ipads???

- botox treatments to reduce the spasticity in Ashlea's legs so she can practise her awesome walking;

- Super Neighbour Kate for walking my Big Girls to school in the rain;

- Emma for coping brilliantly with the change of routine this morning;

- the midazolam that calms Ashlea enough to have the injections under nitrous rather than needing a GA;

- an extra dose of patience to deal with Ashlea's post midazolam blues;

- the clown doctors for arriving right in the middle of the blues and for singing lullabies to Ashlea to soothe her;

- Ashlea's resilience - as soon as we were home she was happy and playing with her iPad again;

- her ipad to keep her occupied in the waiting room;

- the fact that we only live 15 minutes from the hospital;

- free parking.

Sunday, November 17, 2013

Thankfulness Day 17: World Prematurity Day

Today I am thanking God:

- for my two miracle premature babies;

- that my babies were born in a major hospital with a Neonatal Intensive Care Unit - access to good health care is the biggest predictor of survival in extremely preterm babies.  In high income countries 10% of extremely premature babies do not survive while in poor countries it is 90%;

When I say they were premature this is what I mean...
I think that is Ashlea minutes after birth

- for all the technological advances over the years that have lead to the development of equipment such as ventilators, humidicribs, medication pumps, cpap and the many, many other things involved in keeping premature babies alive - and which kept my babies alive;

A very sick Ashlea - puffed up with fluid and in kidney failure 

- for the amazing staff at our NICU and all the units world wide who take such good care of these tiny precious lives - and who also look after their fragile parents;

First Audrey cuddle - 6 days old

- for our universal healthcare system which means we have not paid for any of this (can you imagine the cost...?)

Audrey - a few weeks old - still 10 weeks preterm - LOVE this pic!

- for the precious life lessons that came from the NICU as I got a glimpse of what really matters;

About 9 or 10 weeks old (still 3+ weeks before due date)

- that I got to take both my babies home - not everyone gets that.  Realising how close we came to losing a child changed my perspective forever.  I will never underestimate what a great blessing it is to have all my children living with me;

6 weeks  corrected
Audrey at home, Ashlea still in hospital

- for the delight it is to watch these two grow up and experience life to the full.  I know there are no guarantees in life - the nursery definitely taught me that - but I am thankful for how far they've come and for what is;

About 8 weeks corrected - just before Ashlea came home from hospital
So much cuteness

- that Audrey is healthy and that the lasting effects of her premature birth appear to be mild. She does have dyslexia but considering she was born in heart failure and nearly lost a leg (from the hip) in her first week of life we can deal with dyslexia;

Around 12 months (9 corrected)

- and for giving Ashlea a delightfully stubborn, persevering nature that has allowed her to overcome many hurdles, reach many milestones never thought possible and get enjoyment out of every moment of her life.

Around age 3

It has been strange writing this post.  The first thing that comes to mind when I think of prematurity and the NICU aren't words of thankfulness - but tears of thankfulness.  It is almost impossible to put into words how thankful I am - for these two precious miracles and all the many people who have helped us on our journey.  Even though for us the NICU was 7 years ago it seems a lot closer - I think because it was the beginning of our new lives.  Our new medical / disability / complicated lives that have unexpectedly turned out to be richly rewarding, blessed and good. Biggest lesson from all this?  It's OK to not get the fairytale ending.  The real life ending is pretty darn good too!

Age 5