Monday, May 31, 2010

It's my blog and I'll rant if I want to...

< rant >

Apologies in advance, this is going to be an incoherent rant.

You know when one last little thing just tips you over the edge into the biggest baddest mood ever???  This bad mood has been brewing for awhile.  But tonight it ARRIVED in full force.

Tonight I was bathing the girls and I slipped and fell. My mouth took the brunt of the fall (onto Audrey's hard head). My front tooth almost got knocked out - it is still in but loose and very sore, and my lip got a little mangled too. But the lip won't cost several thousand dollars (that I don't have) to fix so that is not the focus of the rant! The focus is my tooth. Was it my 'bad' front tooth that already needs to be capped after I chipped it on something from the vending machine at the kids hospital 3 years ago? NO, it was the one beside it that was in reasonable condition! So now I need TWO new front teeth neither of which I can afford.

Man am I PISSED OFF!!!

I'm in one of those moods where I need to blame something...so I am going with my shoes. I bought these particular shoes thinking they would have more grip than my old ones. I love these shoes, except that once you add just a drop of water they become like ice skates.

I have fallen before while getting Ashlea out of the bath - thankfully I was able to 'slide' her into the bath water rather than drop her on her head. Last week I slipped down the front stairs while holding Ashlea. My arms and legs were going in all directions in an attempt to keep her upright (we didn't do too bad, but at the end she did exclaim "My head...").

Today I slipped while going down the travelator pushing Ashlea in her wheelchair and trying to keep an eye on Audrey. And tonight I slipped in the bathroom and have probably got some expensive dental work coming my way.

I have declared some ultimatums whilst in my tooth-ache fuelled rage...

1. Tomorrow I am buying a new pair of shoes.

2. NO MORE BATHS. I only bath the girls because it is hard to wash Ashlea's hair in the shower. I have already called the OT and told her I want a shower chair ASAP. That would be the same shower chair that I requested at her IFSP last year but we won't go there...

3. I am on strike for the rest of the evening. No normal bed time routine. The kids can watch as much TV as they like and then just go to bed.  Whenever they want.

< /rant >

Friday, May 28, 2010

Hope

Do you still hold out hope that your child will beat the odds and be the only child ever with their diagnosis to walk. Or talk. Or eat - or whatever it is that you want them to do that they can't do?

Someone asked me last week when Ashlea would walk. I told them that she wouldn't. Which is true. It is very unlikely Ashlea will walk independently.

I have given up hope of it ever happening. Is it sensible to give up hope? Hope can be a heartbreaker if what you hope for never happens. Or should I keep hoping and praying? I have kind of given up praying too (not altogether given up praying, just stopped praying for Ashlea to walk).

I still believe that God could help Ashlea to walk. I used to pray for her to 'walk, talk and eat sandwiches'. But I've kind of stopped. Stopped praying. Stopped hoping. Stopped expecting.

But Ashlea continues to make unexpected improvements. Have a look at this video taken yesterday at the physio. Now don't freak out - she can NOT do this unsupported. But even the fact that she can do it at all is such a huge freaking improvement that I wonder... Should I get my hopes up? Or will it just break my heart?


Wednesday, May 26, 2010

Special Exposure Wednesday: Last Days of Autumn

We are in the last few days of Autumn here in Sydney.  It has definitely started to get COLD.  Sydney's version of cold anyway - today is expected to reach 18 degrees (64 degrees fahrenheit).  I call that a cold day.  Not our coldest day - it will definitely get worse, but I am thinking I may be a bit of a wuss compared to some of you who are still having snow in May in the northern hemisphere.  I'll leave that one for you to decide.

Last week the girls and I were able to go and play in the autumn leaves.  I had been driving past this tree that was dropping all its beautiful leaves and thinking how much fun it would be to go and jump in them.  So last Thursday we took our opportunity.  Lucky we did as it has been raining ever since.

We ran through the leaves...


Ashlea was there too...


She enjoyed herself..although you wouldn't think so from this picture...


Audrey had a lie down...


Emma collected leaves...


I love this photo of Emma and Audrey walking through the leaves together...


I love the colour version, but everyone else thinks black and white is the way to go.  What do you think?


Don't forget to check out all the other great Special Exposure Wednesday photos here.

Friday, May 21, 2010

Bits and Bobs

Firstly, a big thanks to everyone who left hair care tips regarding Ashlea and her 'fro.  I found it oddly comforting to picture you all having the same battle each morning with your children's hair.  I hadn't thought to try a silk pillowslip so might give that one a go - otherwise we will continue with our usual pigtails, conditioning and detangling.  I don't want to cut it short as it always falls in her eyes - at least if it has some length to it I can tie it back. 

Secondly - thanks for the replies to the invitation to morning tea at my house.  So far it is Sarah, Susan and I - most likely on a Tuesday - shall we go with June 22nd?  Straight after school / preschool drop off.  I'll send you the address.  The invitation is still open to any other Sydney-siders...or those willing to travel.

Thirdly - more thanks - this time to my great friend Kellie and her flat mate Lou.  They thought their old TV had died so went out and bought a new one - only to find that the old one was fixable.  So they surprised us by fixing it and turning up at our house with it tonight.  Its a 50 INCH TV and completely dwarfs the entire lounge room.  But me and my almost 40 year old eyes love it - we can now read the TV program and any subtitles without wearing glasses and having to move closer.  YEEHAA.

Here is a pic of the good-tv-fairies and their gift (although it doesn't look so massive in the photo):


And to finish... a couple of photos of the cherubs...

The every cheeky Emma (who can you believe is big enough to have attended her first school disco tonight???)...



Little Miss Audrey...



Miss Ashlea...who doesn't sit still for photos (and can't be bribed with chocolate) so you have to take what you can get...



Have a great weekend!

Wednesday, May 19, 2010

Special Exposure Wednesday: Bad Hair Day

What part of Ashlea's body do you think is most affected by her disabilities?  Her legs?  Her arms?  Her eyes?  No, no no.  Wrong on all counts.  It is her HAIR.

Does anyone elses kid have "hair issues"?  Ashlea wakes up with a birds nest stuck on her head EVERY morning.  Doesn't matter if you washed, conditioned, detangled it the night before.  Every morning she wakes up looking like this...


And this picture doesn't even show the worst of it at the back!

We usually manage it by forcing it into pigtails, but feel free to leave any other hair management tips you can think of!!

For more Special Exposure Wednesday photos click here.

Tuesday, May 18, 2010

Morning tea anyone???

Now that life has settled down a little - meaning that I have accepted that school is here to stay and am just trying to 'go with it' - would any of you lovely readers like to try for a REAL LIFE get together???

Maybe I should be more specific.  It would probably help if you lived in Sydney - although there are many overseas readers I would LOVE to have over for morning tea!

So how about we go for Mums of kids with special needs who live in Sydney.  Would you like to come to my house for morning tea?  It is a bit scary posting this in case I get ZERO responses....but I am counting on a few locals (Sarah, Susan, Ally) to respond.  Please.  You know, so at least it looks like I have a few friends.

And now for the hard part.  When are you free?  I can do most Tuesdays (with no children).  I can do some Thursdays (with Ashlea only) and most Fridays (with Audrey only).  Your children are all welcome.  I have 3 steps to get into the house, but once inside it is all flat.  There are 3 more steps to get into the backyard but then again once you are there it is all flat (still waiting on our ramp).  We also have an obscene number of toys with which to keep the children entertained.

So....anyone interested?  Please leave a comment if you are and tell me when you can come!

At this stage I can do any Tuesday or Friday in the next month or so, but if you want to meet Ashlea she is only free on Thursday the 3rd June or 1st July - she's pretty popular you know.

Sunday, May 16, 2010

Politics

During the week I attended a very interesting talk by Melinda Tankard Reist, a journalist with a passion for opening people's eyes to the objectification of women and the sexualisation of young girls in our society.  Her talk was about how toxic our culture is to young children - particularly our young girls.

Her talk was pretty eye opening.  It made me realise how different it is for our children growing up now, than even 20 (actually make it 30) years ago when I was a kid.  Children are exposed to sexual ideas and images from such a young age now.  On their clothes, on their phones, in their music.  Everywhere. 

Do you know you can buy underwear for your daughter with the words "Who needs credit cards..." on them?  Or what about a t-shirt with the words "Pussy Power" and a picture of a little cat?  One thing that did strike me as odd during her talk, was that for manufacturers to be making sexually objectifiying products for young children and teens is one thing, but surely if no one were buying the stuff they would stop making it?  Who are the parents that are out there buying these things???

One thing Melinda did stress in her talk was that one person CAN make a difference.  She encouraged us to speak up if we see something offensive, and cited a number of examples where one person's voice made a difference (for example in getting offensive products removed from shops).

Melinda has a blog if anyone is interested in reading more:

http://melindatankardreist.com

She also has a grass roots campaign designed to make a difference in our society.  Here is a quote from their website:

Collective Shout is a new grassroots campaigns movement mobilising and equipping individuals and groups to target corporations, advertisers, marketers and media which objectify women and sexualise girls to sell products and services.
 http://www.collectiveshout.org/


And for those not interested in my political pontificating...here is a gorgeous picture of Audrey that highlights the innocence of childhood...

Friday, May 14, 2010

The Green Eyed Monster

On the weekend I attended Equip - a Christians women's conference.  As usual it was fantastic.  One of the speakers in particular was very challenging.  She spoke on the topic of envy - defined as "pain and ill will at another's success".

Ouch.

Now, I wouldn't have outed myself as an 'envier' before hearing this talk, but I have to admit...I ENVY.

The speaker went on to say how poisonous envy is - mainly to the envier - and also to relationships. What she said really struck a chord with me.  I envy.  And it is poisoning me. I have kidded myself that I am not bitter about Ashlea's disabilities.  And in one sense I'm not.  I'm not bitter.  I don't think "Why me?" or 'Its not fair'.  But do I envy other people?  Too right I do.  Do I sometimes hate them for their seemingly easy lives?  Too right I do.

Its not just that I am sad for what I don't have (which I am), its that I intensely dislike some people who have what I don't have - the seemingly 'normal, easy life'.  That is where the poisoning comes in.  There are a group of women in my life who on the surface appear to have it all.  In my mind I refer to them as 'those bitches'.

Envy.

I don't want to end up bitter - that kind of attitude only poisons me and my ability to be friends with other people.  People who seem to 'have it all'.  Or even with people who have just a little more than me.  Yes I know that you don't always know what goes on in a persons life, they may struggle in their marriage, finacially, whatever, but I have all those regular struggles AS WELL AS some pretty major ones like a medical condition of my own and a child with multiple medical conditions.

Envy.  Why not them?  Why is it so easy for them?

I even envy other sick kids. At the kidney parents group I am envious... 'they only have kidney issues to deal with...we have so much more'.

Envy.

The flip side of being an envier is that as humans we also like to be envied.  This is where it gets really ugly.  Today at the hospital there were lots of other 'normal' children running around to be envied.  But then a lady came in with a child much worse off than Ashlea.  Phew - at least things aren't that bad.  Told you its ugly.  Relief that someone else's child is worse off, that mine isn't 'the worst'.

Envy.  Its ugly.

I felt very challenged by the talk.  I know that feeling sadness and grief over Ashlea's disabilities is valid.  But the constant comparing to other people is so unhelfpul.  I hate it.  I hadn't realised that it is something I have done all my life. Compared myself - usually unfavourably - to others.  Its got to stop.

One of the speaker's suggestions for combating envy included being thankful.  I am thankful for Ashlea.  I am thankful for her delightful nature, for the things that her disabilites teach me and the great people I have met as a result.  Its only when I start to look around at others, and start comparing myself to them that I become envious and discontent.

'That's normal' I hear you say.

It may be, but its poisoning me.

I don't want to end up bitter from this experience.  I want to enjoy Ashlea.  I want to enjoy being a mum of 3 gorgeous girls.  I want to live a full life, not one that is poisoned by envy and bitterness.

So, what is your strategy - seeing as it is clear that I don't exactly have one at this stage?  How do you not let envy and bitterness creep in?

Wednesday, May 12, 2010

Special Exposure Wednesday: The Many Faces of Ashlea

The gorgeous Ashlea...







And for when a girl just doesn't want to show her face...


I had forgotten about that last one until I was going through the pictures on my phone yesterday.  Yes, I do let my let daughter sit in her wheelchair with a McDonalds bag on her head when we are out in public.

What have you let your child do in the name of peace and quiet?  Surely I'm not the only one!!

Don't forget to check out all the other great Special Exposure Wednesday photos here.

Sunday, May 9, 2010

Happy Mothers Day

I have really been looking forward to Mothers Day this year - I LOVE getting all the handmade things the children make at school and preschool, and knowing that Ashlea will have taken part this year makes it even more special.

So what did I score you ask???

This was my first experience of getting a gift from the school Mothers Day stall.  So many useless useful items!  Emma reassured me that she didn't get me the back scratcher.  Instead I got a bath bomb, a candle, and a bottle opener.  Emma had such fun picking the things for me and hiding them away until the big day - it was very cute.

The twins made hand-made mirrors and bracelets at preschool.  So cute - I love the hand made presents.


Murray also got me the documentary 'The Genius of Photography" - excellent choice of present.

After church, we went to visit my Mum and my Aunties and then to the park near their house (the same park they used to take me to when I was a child).








Thanks for a great day girls!!

Thursday, May 6, 2010

Progress

How do you measure progress in your house?

I think we would have to measure it in decibels.  If Ashlea dislikes something, she lets you know about it.  Loudly. Similarly, if she really likes something she'll let you know about that too.  Our progress scale would look something like this:


HATES IT --------------->>>TOLERATES IT--------------->>>LOVES IT
Screams blue murder        Quiet Curiosity           Squeals of Delight


One activity that has moved from the 'stop torturing me' end of the screaming spectrum to the 'let me at it' end is the shower.  She used to HATE the shower and would scream hysterically just at the sound of it.  We have been desensitizing her to it though, as it is starting to get too hard to lift her in and out of the bath.  We haven't actually been very persistent in the desensitizing, but for some reason she has just started to love the shower.


She still screams when she hears the shower running - but now it is because she wants IN and she wants it NOW.  That is what I call PROGRESS!

I am guessing though that crawling around on the shower floor is not something that is going to work in the long term, so now we are about to start hunting for a good shower chair.  I've already been given a couple of suggestions, but would love to hear what works for all of you.

So...how do you manage showering / bathing?  Did you have to modify your whole bathroom (we really can't afford that)?  What sort of shower chair do you use?

Tuesday, May 4, 2010

I am the child

My friend Susan, mum to the gorgeous Molly, posted this poem on facebook last week, and I haven't been able to stop thinking about it since.  Usually I find a lot of those types of poems a bit cheesy even if I can relate to them (eg Welcome to Holland), but not this one.

This one is different. This one describes Ashlea so perfectly.  When you read it, you could easily substitute the words "I am" for "Ashlea is".

Ashlea - my Ashlea - is that child.

The whole poem relates to Ashlea, but the part that stood out for me the most (as determined by the number of tears it elicited) is the verse that starts "I am the child who cannot walk".  At the moment Ashlea is getting really frustrated by her lack of mobility.  I think that is why she was so frustrated at the animal farm on the weekend.  It wasn't that she didn't want to be there, it was that she didn't want to be there in her wheelchair.  She wanted to be able to go where she wanted, when she wanted.  Independently.

She has even started saying the devestating little phrase:

I want to walk

I don't think she means she wants to walk like the other children, because I don't think it occurs to her yet that that could be possible.  I think she means she wants me to hold her hands and help her take a few steps, or she wants to use the walking frame.

But still, it is pretty hard to hear your wheelchair-bound child say 'I want to walk'.



I Am The Child

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

(Author Unknown)

Source: http://www.oafccd.com/lanark/poems/child1.htm

Sunday, May 2, 2010

City or Country??

Are you a city person or a country person?

I am definitely a city person.  Not a city girl, like the ladies in SATC, but I like my mod-cons and I dislike animal poo.

Today we all went to a local animal farm for (yet another) birthday party.  Golden Ridge Animal Farm in Dural.  I would love to give them a gold star for disability access as the staff we dealt with were lovely (and thought my kids were gorgeous...that always helps).  BUT, in spite of them having no steps anywhere, it was very bumpy uneven ground all throughout the property, and Ashlea's brand new wheels now definitely look like they've been off-roading.

Audrey and Emma had a great time patting all the animals.  Ashlea loved the idea of patting the animals but wasn't so keen on how they actually felt.  Here are some phone pics of the girls with the animals.



I don't have any pics of Ashlea with the animals, as I was too busy trying to protect the baby ducklings from her.
No Ashlea, don't grab its head. 

STOP, don't throw it on the floor
.

Do animal rights activists know what goes on at kids petting zoos???

Ashlea's mantra of the day was "Wanna see a amimals".  She seemed quite interested in them, and put her hand out to touch quite a few of them.

Her first screaming fit of the day (and there were many) was prompted by hearing the rooster crow.

Elephants she said.

Wanna see a elephants.

Having heard neither of them before in real life, I guess she thought she was hearing an elephant for the first time???  Or maybe it is just that when I pretend to be an elephant (as you do when you have small children) I sound like a rooster?  

As we wandered around the farm (me carrying Ashlea as it was too rocky for the chair), I had my usual affect on animals - they all crapped themselves.  It doesn't matter if it is a zoo or a farm, whenever I walk up to an animal in an enclosure....you can be sure it will take a dump.

See I told you I'm not a country person.  Do you still need more evidence?

We lost the ear piece from Ashlea's glasses, so I retraced our steps to find it.  Just as I spotted it, a CHICKEN picked it up and started to run off with it.  Thankfully the farmer lady rescued it for me.

See.

City person.

Animals do not love me.

I ended up taking Ashlea home early as she wasn't happy to sit in the wheelchair (picture a screaming, back arching child) and I couldn't keep carrying her.  Much to her horror I also didn't let her 'crawl on the floor' as she requested. 

In spite of all this it was actually a really fun day out!!  All the girls enjoyed it - even Ashlea. 

Here is one last pic of Murray and the girls feeding a baby goat.