What the heck of that?

What comes with mobility...

2009-12-01T23:17:00.011+10:00

We recently had a trial of a power-wheelchair for Princess. Her last trial was eleven months ago. Sigh. These things move slowly (the trialling, not the chairs!).

In that eleven months, however, Princess' confidence has grown enormously, something I think we can largely thank her fabulous year at school for. This time, driving the power-wheelchair she was suddenly braver, more daring and more able. It was awesome to watch. The smile couldn't be wiped off her face (well, except for the one time she crashed hard into the wall, but that's another story). (She's fine now).

One other thing we learned is that Princess isn't always going to be the polite, demure little girl she usually presents as. We had her practising her skills in the power-chair in some open space near our house. We happened upon one of her teachers, who eagerly watched Princess independently maneuvering herself all over the place.

As Teacher and I were chatting, Princess hurtled towards us, stopping perfectly in time as we lavished praise upon her. Then, just as Teacher bent down to her to continue lavishing praise, Princess looked at us cheekily and started doing tight donuts in front of us. Round and round she went, with me requesting that she stop and make eye contact while Teacher was speaking to her...but no. Round and round, giggling as she went.

Hurrah - she's obnoxious too! Go Princess!

Inspiration

2009-11-01T23:34:00.004+10:00

I spend a lot of my thinking time thinking about the futures of our three kids, and particularly wondering what Princess' future holds. Sometimes I just can't even picture what her life will be. I reason that as an able-bodied person, how CAN I imagine her life as an adult with a severe physical impairment? Truth is, I can't. The not-knowing terrifies me. Of course I can dream, and I do dream BIG, but I just don't know...

So you can imagine the inspiration I feel when I read about people who not only dream big, but actually achieve great feats, seemingly against the odds.

People like Hilary Lister, a woman with severe quadriplegia who has sailed solo around Britain using a 'sip and puff' system to control her sails and steering. Here's the video of how she does it.

I hope one day Princess can feel that sense of flying and freedom that spurs Hilary on. That she will have the drive and 'never say die' attitude she will need to achieve her great things.

Meanwhile, I'd love to know - who inspires you?

Riding the TWAAAIIIN!

2009-10-13T22:49:00.015+10:00

In honour of Chuckles' up-coming 3rd birthday, we recently went on a little day trip to a small gauge Steam Railway. I think I've mentioned his love of trains in the past. Anyhoo, we all enjoyed this outing very much. I've never seen a wider smile on the kid.

Once at our tea-room-and-gardens destination (before the return trip) the train theme continued, with Princess' wheelchair being transformed into the P.P.No.6 - Pink Princess No.6 Engine, o'course. Little Man driving, with Princess and Chuckles shovelling and stoking, as you do.

Anticipating the 'toot'.

The Station Master and Drivers gave us some old railway magazines to fuel Chuckle's obsession. He LOVES them. Thanks to all at the Durundur Railway, Woodford - a thumbs up from all of us!

Poo. Fart. Chips. for me.

2009-09-29T23:46:00.014+10:00

I'm baaa-aaack!

Yep, it's been ten and a half weeks since my last posting (how Catholic-sounding of me), but I'm gonna try REALLY hard this time to keep a regular commitment.

REALLY.

Ok, so life's been very full over the last few months. Nothing new in that. Well, apart from my brother's wedding interstate, at which ALL THREE of my kids were in the bridal party, and I was MC! Eeek! No pressure! It was a wonderful time though, the kids rose to the occasion and we all had fun catching up with LOTS of family, old and new. Thanks Unca J and welcome to the family Aunty C!

Then there was our holiday to The Snow. That was hard work, but fun. Kind of. Might have been more fun if we hadn't arrived in the middle of a blizzard, but hey, now we can look back and laugh. Golly, it was cold. Beach next time.

What else? Oh yeah, the usual flurry of school routine and activity - the massive annual School Fair, school projects, after-school sport, playdates, therapy appointments, toddler gym, International Talk-Like-a-Pirate Day, oh, and work. And lots of other stuff in between.

And then there was that horrible week when my Darling Hubby was rushed to hospital with a sudden and life-threatening problem that was finally resolved by surgery after he lay in extreme agony for three days, before developing a secondary problem which was also very serious before he finally got better enough to come home. Thank goodness that week is behind us.

So, during all this I've been playing with my new toy - an iPhone. MY iPhone. I'd been interested in getting one so Princess could have something to access and play with. The touchscreen really is quite fab, and Princess does have some fun with it. I'm scouring for applications all the time that are useful for her and the boys. It's so easy!

What caught me by surprise is how much fun I'm having with it! It's great! Not so much as a mobile phone, but as a hand-held touchscreen computer it's beaut.

Little Man likes to borrow MY iPhone to play games on every now and then. Sometimes he gives it back to me with a maniacal laugh, and it took me a while to work out why. I recently opened the 'shopping list' application (daggy but handy) - you may have already guessed, this post's title is what I read on my shopping list...
Poo.
Fart.
Chips. for me.

Ahh, eight-year-olds...don't you just love 'em?! Can't wait to discover what else lurks in there.

Belated and Brief Update

2009-07-17T23:14:00.034+10:00

It seems I’ve been missing for a bit. Life has a tiresome habit of getting in the way of regular blogging! So here's a simplified update on what we've been up to - the very ordinary lives of, well, us.

We had an active time leading up to the end of term at school, with school Sports Day and Under Eights Day, and lots of other things besides. Phew. Sports Day was great fun - Little Man got 2nd place in a relay, having run strategically and come up from behind to surprise another team. We were still hearing about his brilliant tactic days later :) Despite lacking in confidence at the start of the day, I think he thoroughly enjoyed himself.

Princess particularly enjoyed getting 1st place in the wheelchair race (between her and one other boy who'd recently had complex surgery on his foot) - it helped that her 'pusher' was a fit young student teacher, keen and raring to go!

She also had fun in the Prep Relay race, the Jumping Ball race (with the ball between her legs while one of her friends pushed her chair, jumping), the Egg and Spoon race (holding the spoon ever-so-tightly!), Throw the Bean-bag in the Bucket, and of course cheering on her team for other events. She took a keen interest in the tallying of house points and was keen to scorn the other houses at any opportunity - we will teach her about good sportsmanship for next year!

Princess also ended Term 2 of school by receiving a Student of the Week award at her mainstream school! She was awarded for speaking up and answering questions loudly and clearly without the pregnant pause we've come to expect from her. Or, as her teacher put it "Patient [Princess] perceived the perils of Prep, prudently, quelling a penchant for prattle and proceeding with precision" (apparently the preppers really dig alliteration). Yay for Princess!

We were present at the whole school assembly at which she received her award. We were worried how Little "everyone in the WHOLE school knows HER, and nobody even knows I'm her brother!" Man would feel about it. So it was really extra special when Mr C, the school principal, invited Little Man up to the front of assembly as Princess' Important Older Brother, to assist her in receiving her award. I couldn't really see what was going on for the tears in my eyes, but I could tell Little Man was happy and proud to receive the acknowledgement he's craved all year, and Princess was genuinely surprised and thrilled. Of course, it was right at that time that my camera battery failed, but thanks to my good friend Merc, we have a picture to show...

During the school holidays, Little Man finally got a haircut (never thought it would happen, thank goodness he's open to bribes!), but even better than that, we celebrated his eighth birthday! We took him and a bunch of his good friends to the movies, followed by a feast of sushi, chips, vegie sticks, cake and lollies (all his faves). I've never heard the "you look like a monkey" version of Happy Birthday sung in such spontaneous unison before, and with such gusto! Little Man couldn't have been prouder. Awww. Here he is opening presents...

He has a talent for hamming things up, among many other things. These pics deserve to see light of day somewhere, may as well be here...

Happy Birthday Little Man. Here's looking to a fantastic year of being 8!

And finally a mention for wee Chuckles. Well, not so wee any more. Chuckles is bounding along - he's a happy fellow who adores his older brother at all the worst possible times, reveres his older sister but not enough to not steal toys/food/mummy's cuddles from her, and has the audacity to yell back at her when she yells at him for these misdemeanors! He often gets shuttled around from one commitment to the next, and it turns out he is a great companion throughout the day. And he is soooo adorably cheeky, he just always puts a smile on my face.

So that's a very small bit about us for now. Will try and post more often - easy to say, harder to do...

People First

2009-06-16T22:41:00.010+10:00

Those that know me know that one of my pet hates is the way a person with a disability can be so poorly described by (most of) the media.

Here's a classic case in point, from a New Zealand TV Program. It's a great, hopeful story(for the most part). So it makes me wonder WHY did the headline have to read "Cerebral palsy patient gains, then loses, her voice". What's wrong with saying "Girl with cerebral palsy gains, then loses, her voice"? The girl in question was not ill, so she's not a patient. She's a GIRL.

People with disabilities are PEOPLE first. All with individual abilities, interests and needs. There's no need to stereotype anyone into being a condition that they may have - the CP boy, the autistic girl, the mentally ill man. Instead, the boy with CP, the girl with autism, the man with a mental illness.

This is called People First language. Sounds like common sense to me.

The I've Been Corrected Blues

2009-05-25T23:11:00.008+10:00

Driving with the whole family in the car, listening to Jazztrack, a favourite program of ours on ABC FM radio. A bluesy number came on and I decided to take the opportunity to educate the kids as to the sound and form of The Blues. Chuckles, the two year old, interrupted me.

"No Mum" he said, removing his dummy from his mouth and adopting a posture of authority. "Dis NOT boooos. Dis JAZZ."

And with more coolness than Miles Davis himself, Chuckles popped his dummy back in his mouth and continued staring out the window as if he hadn't spoken at all.

I wish I had even a little of that confidence.

EDITED TO ADD: This morning Darling Husband remarked upon some clever little thing Chuckles had done. "You're a cool dude!" he said. Chuckles hit back with "No, I'm AWESOME!".

Hmph.

Confidence.

He is pretty awesome though : )

Pain logic

2009-05-21T21:23:00.008+10:00

Princess, we know, has a high tolerance to physical pain. The poking and prodding she has sometimes had to endure would bring tears to the eyes of the most stoic individual (and often has to mine). Princess, however, seems to be made of very tough stuff and though I know she does feel pain, sometimes it's hard to know to what degree. She really doesn't seem to like giving much away.

Last Friday afternoon she had an inexplicably swollen ankle, but was tight-lipped as to how or when the cause of it happened, or even if it was hurting her. Finally, after a discussion about going to the doctor for an x-ray she blurted out that it DID hurt but she didn't want to go to the hospital (which we unfortunately ended up doing because no other x-ray places were open).

She then told us it had happened the night before (I remember the likely incident - had no idea she had actually HURT herself!). In hindsight, she had been teary that morning, but I couldn't pin-point why. All day at school she had quietly endured the pain, and after school she remained tight-lipped - all because she didn't want to go to the doctor. And who can blame her?

Sigh. A child's logic can be so heartbreakingly logical.

End result: No broken bones. Probably stretched ligaments. Definitely a much wiser mother. And Princess is all smiles again.

(PS. I know I'm not the only parent of a child who thinks things through...)

Happy Mothers' Day

2009-05-09T23:37:00.006+10:00

At the risk of sounding like I'm having a bit of a whinge, I didn't know it was possible to be as busy as I feel I've been over the last several weeks. Maybe it's just me, maybe it's the universe - I'm convinced that time is speeding up and 24hrs ain't as long as it used to be!

Naturally, most of what has been taking up my time is kid-related. The school-day routine, the taxi-ing around. Dealing daily with what goes on inside a child's mind (it's never predictable). Appointments with schools, doctors, therapists, squeezing in the odd playdate, a brief moment of respite at the park with Chuckles. Every couple of days there's the '8-hr break' I call paid work. (That's a joke, actually. Not much of a break at all, though coming home to bathed children and a cooked dinner is a huge plus!). And then of course dealing with things coming out of nowhere that have to be dealt with asap! And they seem to happen more and more frequently.

Phew. I admit I had no idea this was what it would be to be A Mother.

But I'm not alone - I'm supported by my Darling Husband, who knows I know he does more than his fair share. He keeps me afloat. Save him for Father's Day.

I'm also lucky enough to have the support of my own Mum. My Mum, who has been there for me, always. Who, in addition to all the normal expectations of a grandparent (ie, loving, fun and caring towards grandchildren), has once again added routine child-care, taxi-ing, important appointment accompanying and provision not only of meals and baths (see comment above), but also provision of occasional family holidays and child-free weekends, to her formidable repertoire of skills. And there's so much more I haven't mentioned. What a woman. Mum, thankyou.

And while I'm at it, I must also add the support from my sister, Aunty T. She too is always there for us - a fun and reliable child carer, and quite often a saving grace. Definitely gets an honourable mention for Mothers' Day!

I've already been quite spoilt by the kids - Little Man and Princess have been busy beavering away at their gifts for me - not to mention Mothers' morning teas put on by Princess' Prep class and Little Man's Scouts troop. More homemade chocolates and coconut balls than you could poke a stick at!

I feel very blessed indeed.

And so to all the mums out there reading this, especially mine, I wish you a very happy Mothers' Day.

Long time

2009-04-16T23:58:00.004+10:00

..between posts. Have been way too busy with Easter break/school holidays and working on something quite special - all will be revealed soon enough on this blog!

In the meantime, some food for thought (and a bit of reading):

Some weeks ago, Sue Corrigan, journalist and mother of a teenage son with Cerebral Palsy, wrote an article for The Australian about the sorry state of disability services across Australia.

A few days later, Bill Shorten MP, (federal) Parliamentary Secretary for Disabilities and Children's Services gave this speech at a Press Club lunch in Canberra.

It's time for action.

A Feel Good Moment

2009-03-25T23:11:00.009+10:00

This is the front of a home-made birthday card given to Princess by one of her new best friends, Miss J. They're in the same Prep class at the mainstream school. Here, Miss J is on the left, Princess on the right, obviously.

What I love most about this picture is the HUGE smile on Princess' face - Miss J nailed the portrait right there, pigtails and all.

And the sheer acceptance of it.

Love it.

Happy Birthday Princess!

2009-03-10T11:19:00.008+10:00

Our Princess is having a birthday today. She's 5 years old now!

I can't believe how the time since she was born has flown by. What a beautiful little grown-up girl we have now. And the ups and downs we've had in those five years. The many moments of Princess's life that I replay over and over again in my mind, whether I want to or not. The guilt I feel that because of circumstances in my body before and during her very premature birth, she has permanent physical impairment and there's not a damn thing I can do about it. Life-changing for us, and for her, in a way she will never fully be able to appreciate the way we do.

To be honest, I sometimes feel I'm as much in shock now as I was five years ago. When we first learned that not only did we have an extremely premature baby, but that she would have 'special' needs. That 'special' is a pretty big word.

And special she is. Princess is a delightfully cheeky kid, a happy little girl who loves imagining big stories, yelling at or with her brothers, playing with her school friends... And all the friends she has, child and adult, who delight in her achievements and enjoy her wry observations.

I've often wondered what she thinks about having a disability. There have been hairy questions from her in the past, and no doubt there'll be many more in the future. But she surprised me recently...

We were driving out to go shopping when I remarked that I'd forgotten to put our blue 'disability parking' sticker back in the car, having removed it earlier. Quick as a flash, Princess asked "Mummy, if we don't have the sticker, does that mean I don't have a disability anymore?"

My mind raced into panic. This was another of those moments, like the time she wanted to dance like her baby brother all by herself without anyone helping or any equipment near her, all by herself and wouldn't take "let's do something else" for an answer. I had to have a well-worded response. Be gentle but honest. Think...Think!

Then I heard a giggly chortle from the back seat. Looking in the rear view mirror, I could see a broad grin on Princess's face. Oh good one, honey. You got me. Phew. "What do you think?" I asked her. Smiling her broad smile, she said "No, of course not! That would be silly!" Giggle. Oh bless you, my wonderful, understanding and well-grounded daughter. Until the next hairy question anyway.

So, like our darling boys, Princess has her life and we help her live it. She is quite truly one of the most delightful little souls that ever came onto this earth, and for all the ups and downs, I cannot imagine my life without her. We truly are so very lucky.

Happy birthday my oh so SPECIAL little girl.

All's well that ends...

2009-02-26T23:43:00.007+10:00

I have previously alluded to the fact that Little Man wasn't an entirely happy camper when he started the new year at school. He's in a different class to most of his friends, he's suspicious of his teacher's motives and worst of all, suddenly everyone at his school knows his little sister and he's "just a nobody". Ouch. Life just is not fair.

So, after his first week at school, and a weekend jam-packed with fun, Little Man succumbed to Sunday night-itis, and gee whiz, he's only seven. Sigh. He announced he didn't want to go to school anymore. The next logical step was to pack his bags and run away. This was at dinner time on a Sunday night - I asked if he wanted to eat before he left, and he told me no, he'd get something on the road. Oh, okay, if you're sure then.

We watched him go, laden down with his gear. We had hesitatingly kissed him goodbye, then spied through the front windows, hoping against hope this was going to play out in our favour.

It did. He got as far as the end of our driveway (about 20 metres from the front door) and stood there watching the sunset for a few minutes, no doubt contemplating the un-fairness of life. Then he shrugged to no-one in particular, trudged back across the front yard, rang the doorbell and greeted us with a huge sheepish smile. Well, maybe he might have dinner with us after all, and leave tomorrow when it was lighter. Good idea, Little Man, we all agreed. It's good to have you home. (Of course, by next morning, the whole thing was forgotten, and it turns out he had a great time at school. Phew!).

I'm pleased to say that the kid knows how to pack well - every contingency covered - clothes for all kinds of weather, spare undies and socks, a torch, a book (on science experiments - go figure), sunscreen and a hat, even a pen and paper to write home!

On that note (no pun intended!), Princess had been getting increasingly upset as Little Man had begun packing. She was in awe that he was attempting such a feat, but getting chin wobbles at the thought of him going too. Until, that is, he told her not to worry about him - he would write a letter to her every day, maybe even twice a day! "Really?" She was getting excited. "Well, off you go then! Don't forget to write!" She was yelling with excitement now. "Mummy, Little Man's running away from home and he's going to write me a letter every day! I'm going to get lots of letters!" (This actually comes out as "wots of wetters'. Very cute). She simply could not contain her excitement. Not exactly the support I was hoping for.

Lucky for us, Little Man's internal compass still points to home, no matter what.

And (completely unrelated) he makes a dapper Qui-Gon Jinn, I reckon. The ensemble below was put together for a 'space' themed costume day at Joey Scouts. Every child there turned up in a Star Wars themed costume. The Force is strong indeed.

ABR

2009-02-17T23:41:00.014+10:00

We recently returned from a brief and very busy trip to Sydney, where we attended a therapy clinic for Princess (apologies to our family members there, we simply didn't have time to try for a catch-up!).

The clinic was another chapter in a long journey we began two years ago - that of ABR. Put very simply, ABR or 'Advanced Biomechanical Rehabilitation' is a unique therapy which improves tone, strength and volume of the musculo-skeletal structure in children who have moderate-severe physical impairment due to brain injury.

We began it with Princess when she was just 3yrs old. We travelled to Singapore to learn the therapy technique, which is like a form of compression massage, and since then have been striving to complete many hours per week of hands-on therapy. We also use what's known in ABR circles as 'the machine' (actually a small compressor with bladders attached which are wrapped onto Princess's body while she sleeps) to help deliver the therapy to her in every spare moment!

It sounds whacky, and we were a little sceptical when we first heard of the therapy a good eighteen months before we decided to give it a go. But we wanted to be in the driving seat where our daughter's future was concerned, not at the behest of doctors, or relying on intermittent therapy from over-worked and under-funded service providers. We knew it would be completely up to us to carry out the therapy. We knew it would take time, years even, before we saw results.

And guess what? ABR works. Simple as that. We can say this now, two years in, because we have seen positive changes in Princess' body that were hitherto unpredicted by our 'mainstream' therapists, and certainly never expected by us.

For example, in 2007, just before we started ABR, we had been warned by doctors, surgeons and other therapists that Princess' hips were misaligned to the point of being in grave danger of severe dislocation - this would no doubt cause scoliosis in her spine (which could already be detected) and other stresses on the rest of her body. We were urged to consider radical boney surgery, sooner rather than later. If we hadn't resisted, this painful surgery would have taken place in Jan 2008.

We did resist the surgery. And at an orthopedic hip review last month, Princess' hips, although still misaligned, were not as bad as they had previously been. There's no worsening of the scoliosis. We don't need to go for another review for six months!

In addition to this, until eighteen months ago Princess had a track record of being hospitalized with bronchiolitis a few times a year. Any virus going around would go straight to her chest and bam!, hello hospital. Again. Well, without wishing to jinx anything, I'm pleased to report that Princess has had nary an issue with her respiratory system, or anything else for that matter. She is more robust than ever, her body is filling out, her muscles are gaining bulk where there was none previously. She's a healthy, happy kid!

All this is great, and we believe we can thank ABR for much of it. However, it does come at a price. The clinic fees aren't cheap, not to mention the cost of travelling to the clinics (thankfully we are able to attend clinics in Australia now, rather than having to travel to other parts of the world). Most of all though, it's the investment with our precious time that is the hardest one to make. But we do try hard. And thankfully, we think it's worth it.

NOTE: I feel I need to add that although we have chosen ABR as an on-going therapy for our daughter, we do not by any means discount the work of other therapists/therapies that may also have benefits for her. We willingly accept advice from all our therapists (unless they mention surgery!!), knowing that Princess is constantly learning and growing from their contributions.

Unspeakable

2009-02-10T22:26:00.002+10:00

I have lots to post about, but just can't get away from the horror of the bushfires ravinging Victoria.

It's an unbelievable tragedy, still being played out. Our hearts go out to the victims who are left with nothing - who are still seeking loved ones, have lost loved ones, who have lost all their possessions, their homes, their communities. The nation is grieving with you.

Only twelve more years to go!

2009-02-04T21:57:00.014+10:00

Well it's been more than a week - a long and interesting and fairly exciting week - since school began.

I am pleased to report that things are going well. For Princess, things are going better than expected (so far!). Maybe not so much for Little Man, but we're working on it. He didn't really want to participate in our first day photos and was pretty cool about going up to his new classroom and just getting on with things, but we all know still waters run deep, and that's a whole other post... Overall though, they've both had a good start to the school year.

For her Prep year, Princess is actually attending two schools - three days a week our local state school, and two days at a nearby special school (officially an ECDP, but don't ask me what that stands for!). We're hoping this combination will cater for her needs socially, intellectually, physically, etc. By the time she begins Grade One next year, she'll be ready to hold her own in the mainstream world!

Anyway, Princess's first ever school day began at home like this...

The excitement was palpable...

...and she wasn't let down. As we all arrived at our local school and began walking/wheeling up the path to her classroom, we were joined quite coincidentally by one of Princess's 'best friends' from her old kindy. Instant relaxation. It was just like old times! On entering her classroom, although busy, a lovely sense of excited calm pervaded. Princess had her factory default face on, but she was clearly happy to be there.

We met her teacher, the fantastic Mrs A, and her new teacher aide, the lovely Ms L. We are really pleased that Ms L is a full-time aide to Princess (as well as another little girl in the class), for the three days she's at that school. Ms L has many years experience working with kids with extra needs, and they've been getting along well.

Thankfully, her teachers already knew lots about Princess before we arrived. The previous week, our OT, AVT:PI (that's Occupational Therapist and Advisory Visiting Teacher:Physical Impairment, respectively) and myself had given a powerpoint presentation all about her to the entire school staff, taking up a fair amount of their pupil-free day too. (Now staff come up and say hi to me all the time, and I haven't a clue who they are! This happens a lot around Princess).

Her OT and AVT:PI were also there on the first day, making adjustments as necessary to the two posture chairs and corner seat acquired for the classroom. A tradesman had been putting the finishing touches onto the purpose-built cubicle in the adjacent bathroom, big enough to accommodate a toilet chair for Princess, with an accessible sink, and we managed to put together a makeshift change table in there as well.

Parents were welcome to hang out for as long as they needed. I stayed quite some time, not because Princess wanted me there - she couldn't have given two hoots! - but it took a while to get the equipment set up right and I was asked to give my input, so I did! I saw Princess happily listening to Mrs A during circle time on the floor (albeit in her wheelchair on the first day - now she sits in her corner chair on the floor with the other children).

After morning tea, Princess sat in her posture chair with a few other kids at the specially-acquired inclusion table to help make a batch of playdough. Another boy she knew from kindy held the bowl for her, unprompted, when it was her turn to stir. I was impressed.

As I finally left, Ms L was about to take her outside to do some easel painting standing up. I kissed Princess goodbye, she gaily said "Bye Mummy, see you when you pick me up!" and didn't look back. Yippee, I sung to myself. This is great. The school has been wonderfully supportive, and the effect has already been positive.

Long may it last.

Back home at the end of their first day the kids didn't feel like smiling for the camera anymore, preferring to ham it up. But truly, they'd had a good day...

Next instalment, First Day at The Other School, coming soon...

Looking Up

2009-01-26T00:50:00.021+10:00

I can hardly believe the school year is beginning again...we seem to have had a very busy time of it lately - birthday parties, roller-skating, playdates, movies, shopping for school supplies, a beach holiday, the list goes on. I'm exhausted.

And now I have not only my big Little Man going back to school, but our Princess begins Prep tomorrow too. She's very excited, though she admitted to me tonight that she was feeling "a little bit nervous about it". We're all prepared, her new teacher and teacher's aides are prepared, after two years of kindy I think Princess really is quite prepared. And yet I still have no idea what to expect. Lucky for me though, I know Princess will work it out.

...Stay tuned...

One of the best things that happened during the holidays - Princess finally got her first ever manual wheelchair, and of course, it's pink!

Until recently, Princess has been getting around in a supportive stroller, and while it's been very useful, there was no way she was going to go to big school in a stroller! That's for babies! So after several months of measurements, waiting for funding applications to process and of course the wheelchair to be custom made, we finally have it, just in time for the start of school.

I wondered if I might feel sad about the finality of Princess having a wheelchair - the fact is that she is unlikely to ever be able to walk, though we could kind of pretend when she was only in a stroller like so many other very young children...

But nope, I am actually excited about the wheelchair. A wheelchair means an instant explanation - yes, my daughter is special, yes, she uses a wheelchair, end of story. No need for sidelong glances from strangers wondering why does that child still use a stroller at her age?

She looks great in it too, don't you think? (The pics were taken when we were flying kites on our beach holiday on Queensland's Sunshine Coast).

And the company that made the wheelchair have only just introduced pink as a frame colour, and Princess has the first one out of the factory (they've got orders for at least 12 more so far). We've been told they've officially named the colour after her. How cool is that!

Finally

2009-01-09T23:42:00.003+10:00

I've finally done it. Added some photos (in the sidebar, anyhow). So now you too can see how gorgeous the kids are and put a face to the name.

There'll be plenty more to come too.

Bring It On

2009-01-02T22:44:00.004+10:00

Funny thing.

There we were, driving to a friend's New Year's Eve party, our three kids in the back seat, Darling Hubby at the wheel, and me texting felicitous messages from my mobile phone. I commented how quiet it seemed - we were the only car on a usually quite busy road. Suddenly, Darling Hubby slows the car.

And here's the funny bit. A sleek, JET BLACK CAT had decided to step out on the road right in front of us, slowly amble all the way across with its head held high and tail in the air, and having safely made it all the way across our bit of road, disappeared into the night.

Darling Hubby and I looked at each other. Not known for his optimism, DH stated "That's our year ahead, then."

Now, I don't consider myself a superstitious person in general (though I have been known to knock on wood on many occasions).

But I've decided I'm going to accept this Black Cat Crossing Our Path as gesture of goodwill. It's good luck. We didn't run it over, so that's got to be good. It looked happy enough, not sinister or ill-willed, and I've seen some terribly-mooded cats in my time. And in fact, this cat seemed to be so deliberately flaunting its black-cattedness as it crossed our path, I think it was actually saying to us, "Notice me, because I am a portent of all things good to happen for you on this eve of 2009 - a propitious future is coming your way".

And anyway, the next morning we were swimming in my mother's pool when the children noticed four butterflies dancing around us in the bright morning light. Princess rightly pointed out that having butterflies dancing around you is such very good luck, and would make any bad luck caused by any black cat go away. And Chuckles shrewdly followed up this sentiment with "Butterflies eat black cats" (well, it was more "buffwies eat bwack cat", but you get my drift).

So I'm looking forward to 2009.

2008 was a very challenging year for us. And I'm sure 2009 will be no less challenging. But I'm ready to face it with a spring in my step. That black cat didn't appear for nothing.

Not that I'm superstitious.

And I wish you all a propitious new year too.

What those Romans needed

2008-12-12T01:26:00.007+10:00

Okay, I know what I said, but promises are meant to be broken - or something like that. This is too good to keep to myself...

Still on the subject of Baby Jesus, myself, Little Man and Princess were having dinner, and once again discussing the concept of Christmas Day. Little Man went on to ask about how Jesus died - "Wasn't he killed? Who killed Jesus, Mum?"
"Well, it was the Romans" I replied.
"How did they do it again?' he asked. Princess pipes up, "And wasn't there a cross?", so I went on to give a very brief summary of crucifixion, to which Little Man commented "It's like torture, it must have been horrible", and happily skipped away.
I began to clear dinner. Princess was thinking.
After a minute or two, she said "Do you know what those Romans needed, Mummy?"
"No, what darling?"
"A good smack on the bum!"

Indeed.

All time favourite

2008-12-05T00:04:00.003+10:00

While I'm on the subject of cute things my kids have said (I promise this will be the last one for a while), I may as well tell you my all time favourite, to date...

It was the day after I had given birth to wee Chuckles, and the whole newly expanded family was quite ceremoniously, if somewhat chaotically, leaving the hospital. The large glass doors at the front of the main building glided open for us to make our exit into a glorious blue sky day.

Little Man, then aged 5, enthusiastically grabbed at my arm, rendering Chuckles at more or less his eye level, and with a flourish of his arm and all the worldly experience a five year old can muster exclaimed "Look Chuckles! This is the world!"

I still tear up at it, even now.

Xmas Cheer

2008-12-02T23:31:00.005+10:00

Naturally, Christmas is always cause for excitement in our household. The anticipation and festivity is consumed with gusto by my three kids.

We’ll be talking about shopping or fruit cakes or some such thing, and Princess pipes up with “Speaking of Christmas, let’s sing Jingle Bells” (or Rudolph, or Drummer Boy, etc).

In the lead-up to last Christmas we had a bit of a chuckle. Princess was going through the phase where she loved babies and anything to do with them. Was completely fascinated by the story of Baby Jesus, asking things like “Why did Baby Jesus have to be born in a stable?” or "Did Baby Jesus get cold?".

During one of these Q&A sessions, Little Man, hungry for a snack, was complaining for something to eat. I opened the fridge door and noticed a packet of Babybel cheeses.

“Darling why don’t you have one of your baby cheeses?”

There was a cheeky chortle from Princess.

“What are you laughing at, Miss?”

Princess, grinning wickedly, replied “Baby Cheesus!”.

What a giggle.

Someone call the Cute Police

2008-11-18T23:39:00.005+10:00

I have already mentioned that our little Chuckles is a particularly cute kid.

I don't think I've mentioned his obsession with trains, more particularly the trains from "Thomas the Tank Engine". Chuckles already has quite a collection of the little wooden ones, and he plays with them and only them, it seems. He refuses to call Thomas Thomas, insisting on calling him "Twain" instead. Lately, Chuckles has been taking his little Gordon the No.4 Engine and James the Red Engine everywhere with him - won't be seen without them!

He and I were dropping Princess off at kindy, saying our goodbyes to her as usual, when Chuckles suddenly burst out "Byyeee! I love you! And Twain and Gordon and James...(his voice petered out a little here)...and Mummy."

At least I got a mention.

Ticketyboo

2008-11-14T21:44:00.011+10:00

Princess' heart surgery went well. She now has a tiny little coil in her heart, plugging up the duct, and her heart beats as noiselessly as the next person's (if you'd heard the murmur she used to have, you'd know what I mean).

We are most relieved.

It all seems quite surreal now, almost like it was over in a heartbeat (oh, stop, my sides are aching!) - seriously, Princess was only in hospital for less than 30 hrs. She proved herself to be the brave, strong, stoic little soul she is - showed Darling Husband and I a thing or two about fortitude and patience, like she always does. She received excellent care and so did we for that matter. It all went like clockwork.

We owe so much to the expertise and care of the Queensland Paediatric Cardiac Services team, particularly Dr Robert Justo, Dr Bennett Sheridan and Susannne our care co-ordinator. Great job, and thank you.

As a postscript, I have to mention Little Man and Chuckles were so sweet when they visited the hospital. Little Man especially has a lot of room in his heart for Princess - he's not afraid to tell her or show her he loves her. 'Swonderful.

Lifeless? I don't think so.

2008-11-11T16:06:00.015+10:00

I was carrying Princess through a particularly busy area at a special event at Little Man's school today - there was quite a crush of kids and parents, so I had Princess against my chest and was supporting her with my arms, with her facing forward.

Because of the amount of activity around us, Princess had no doubt gone to her 'factory default setting' as I call it, of having a slightly stunned, almost disconnected expression on her face. (Some background - if there's an expectation placed on her to show interest in something, and she's too busy listening and keenly observing it all, she will get this disinterested look on her face, and the effect can be easy to misinterpret. But don't be fooled - she's got a mind like a steel trap and a sharp tongue when she wants to use it!)

A dad we know only as a slight aquaintance walked towards us, looked at Princess, commented "Whoa. Lifeless!", and kept on walking. A little stunned, I asked Princess "Was he talking to us?" - apparently he must have been. And I wonder, what on earth made that man think it was okay to make such a comment at, and within earshot of, my daughter?

I try not to get indignant at stupid comments or ignorant people - why waste my time being worried about their problem? - but can't help wondering would this guy have made that comment if Princess had had a less stunned look on her face, if she'd looked like she was as alert and engaged as every other child in the room, which she in fact was?

What is it about kids with 'special needs' that seems to give anyone the right to comment or judge when they wouldn't do it to anyone else?

This dad missed an opportunity to learn something today. If he'd stopped to say hello, and if he took the time to get to know her, he would learn that our Princess is many many things, but certainly never lifeless.

Identity Theft

2008-11-10T13:23:00.003+10:00

Some folks have been asking me why I haven't posted any pictures of my kids or why I'm not using their real names.

Well, call me paranoid (I'm actually probably more naive than anything else), but... I know a few people who HAVE posted photos of their families on their blogs, only to later discover the same photos of THEIR children are on someone else's blog, being masqueraded as someone else's children. And I find that worrying.

I can't work out what would motivate someone to 'make up' a family to blog about, and I can't work out why I feel so un-nerved by this, but I do.

So I won't be posting any photos of my kids until I work out a way of watermarking/theft-proofing them. But believe me, the wait will be worth it. They really are quite gorgeous - you'll just have to take my word for it for now ; ) .

Heart ache

2008-11-05T22:42:00.003+10:00

Princess will be having heart surgery in a week. I've been mentioning it to people occasionally, flippantly, like it's no big deal. And on the sliding scale of heart surgeries, it is a comparitively small thing.

And yet...

The reason she's having the surgery is this - when we're born, we all have a little duct in our hearts that usually closes by the time we're 5 days old. In our Princess's case, as is the case with many premmie babies, the duct didn't close. It hasn't been a major health issue for her, but it has been recommended that we get the duct closed up nonetheless.

We were offered the option of surgery through her chest - cutting through skin and muscle, prying open her fragile little 4-yr-old's ribcage, finding the wee little duct INSIDE HER HEART and then clamping it closed with a metal clip. Oh yeah, and a painful two-week recovery period. We politely declined that option - well, I think my response was something like "You WHAT?? Over my dead body!!!".

No, we have taken the less eye-watering option of having a thin tube (catheter) inserted into a blood vessel in her groin and threaded up to her heart, where, through the catheter, a plug will be inserted into the duct rendering it closed. And home the next day.

See? Simple.

Let's hope so.

(Princess isn't so keen on going to hospital. But really it's amazing what a good bribe will do. She even announced to her friends today "I'm having my heart fixed, so instead of going boom swish boom swish, it will go boom boom boom boom properly!". Bless.)

Star of My Life

2008-11-04T21:56:00.004+10:00

Little Man got a 'Star of the Week' award at his school assembly today!

This means a lot. He has been wanting to earn it all year. There have been times when he has felt his good work and behaviour has gone unnoticed at school, though he's dryly observed that his less-than-acceptable behaviour never goes unnoticed! Anyway, he's finally done it. And his chest is puffed out and he's smiling and he's proud.

Good on you, Little Man. You've certainly made your mother proud. You're so much more than a Star of the Week to me.

DON'T PANIC!!!

2008-10-21T22:44:00.004+10:00

There's been a lot of to-ing and fro-ing going on with the bathroom building. It's reached nightmare-ish proportions. I don't want to exhaust myself or anyone reading this with all the details, but just wanted to give myself a little reminder to keep the big picture in mind.

Big picture.

Sigh.

A fresh approach

2008-10-18T15:37:00.008+10:00

Okay, here it is. I'm making a commitment right here, right now, to TRY and post at least once a week from this point on. Even if I've got nothing terribly interesting to say. So there. It's all about keeping things fresh. Keeping the blog alive. I don't want it to die before it's even begun!

Right.

So, at the moment we are having our bathroom demolished and re-built. We have to make our home more accessible for our Princess, so starting with the bathroom seemed like a good idea. It's going to make washing, toileting, toothbrushing etc so much easier for her and certainly less back breaking for us. We can't wait!

Now, the people I know who have had their bathrooms renovated in the past have all said it took a week to ten days to have it done. But that sounds waaaay too quick and easy for us. Only ten days? Yeah, sure! No, our builder has assured us that we can expect to not have a usable bathroom (the only one in our house, mind) for a good three to four weeks. Let's make that five weeks to be safe. I don't know about you, kids, but I'm going to Grandma's for a little while...

The port-a-loo was delivered last week. It was plonked squarely in the most public part of our already very-open-to-the-street front yard. Our neighbors have been laughing at it ever since. Even people I barely know have been stopping me at the local supermarket or at Little Man's school saying they've noticed the port-a-loo in our front yard (how do all these people know where we live?) - are we having renos done?, then given me a grave and sympathetic nod or squeeze of the arm.

Should I be that worried?

Everything seems to have gone pretty much as expected so far, bearing in mind that my Darling Husband expects things to go wrong just about all the time. But to be fair, we seem to have a good team of builders on board, and they are doing their best even though communications have been going awry. But that will improve, I just know it.

My favourite bathroom building moment so far has to be meeting David the Chippie. David the Chippie reminds me strongly of the character Guy Pearce played in the hit Aussie movie"Priscilla, Queen of the Desert". Very strongly, if you get my drift. Except that he wears oversized 'VB' t-shirts, stubbies and Blundstone boots. He is so on top of everything that is happening with our bathroom, he keeps the lines of communication open beautifully. Even to the point of phoning me on Day Two of construction to let me know that they were about to turn the water off, but he'd noticed that I had a bucket of clothes soaking in the laundry and he didn't want me to forget about them, because they would get very stinky. ...I ask you, how many carpenters do you know that would even notice such a thing?

Bless David the Chippie. He's looking after us.

Off to a slow start

2008-08-18T23:04:00.007+10:00

So the blogging hasn't happened as regularly as I'd hoped it would. Time is not my friend.

But let me tell you about the kids. They take up most of my time, so it's natural they should have even more of it here.

Little Man, he's 7. He's the one that coined the phrase that is this blog's title. He's a brilliant thinker, and to quote his Grade Two teacher, he "could talk under wet cement". Not exactly what you want to hear from your kid's schoolteacher. He's gorgeous, he's loud, he's annoying, he's sweet, he's compassionate, he's strong, he's serious. He came into this world quite literally with his eyes open, and he knows where he's going. I just wish he'd tell me sometime!

Then there's our precious Princess. Beautiful. Funny. Wickedly hilarious actually. Eloquent. Poetic. Patient. So patient. Sulky too, sometimes. I could write about her for days on end, and probably will, but in a nutshell... 4 years ago, Princess was born 12 weeks before she was due. She was born so early probably because I had an undetected Group B Strep infection in utero, and things were getting ugly for her. As a result, Princess has a brain injury resulting in Cerebral Palsy. For her, this manifests as a physical disability - severe quadriplegia - she has very little controlled movement and relies on another person to help her with every aspect of daily life. For us, we are so very very lucky to have her. Like all our children, she is a blessing in so many ways.

Finally there's Chuckles. He's the comic relief. Really. We didn't know we were ever going to have Chuckles until suddenly he was just here and making his presence felt. He'll be turning 2 soon, and he is without a doubt the cutesiest kid we have. Loud, belligerent, tender, chubby, insistent. Cute, and very funny.

Hurrah.

2008-07-26T15:16:00.009+10:00

Finally.

My first own blog post.

I've been thinking about this for a long time. Not what I'm going to post about, but just the idea of having my own blog. It's been a long time coming. I have a lot to say after all, or should I say, a lot to share.

I think I need to blog because so much happens in my head on a day to day basis, and I need to get all those thoughts out of there. My head, that is. So what better than to tell the whole entire world (well, the blogosphere at least) the piffling goings on in my life... read on at your peril (of being mind-numbingly bored)...

Let me begin by telling you a bit about me.

I'm a mother of three incredible and wonderful-most-of-the-time children. Unlike me, they are very young - 7yrs, 4yrs and 21mths. And my beautiful step-daughter who has recently celebrated her 20th birthday. My darling children ensure that my head spins from way too much stimuli, from the moment they rise to the moment they sleep. They're very thoughtful in that way.

I have a lovely and doting, and sometimes slightly neurotic, husband (sorry Darling, but I know you won't disagree). Being married to a neat-freak definitely has it's good points.

Apart from raising a family, I have a quite interesting job in a field I enjoy, but I feel I'm getting way too old for it, and don't really have any training to do anything else (this has been bugging me quite a bit lately). Hmm.

I sing. Once upon a time, BC (Before Children of course), I could say I had a teeny-tiny career as a performer, actually making money out of singing professionally. Ah, they were heady days...

Oh and of course there's a cat. Tilly. She's the longest-lasting one we've had, over 11 years old now. That's incredibly good going for a cat belonging to me. She used to get a hell of a lot more of my attention in the old days.

BC.

Of course.