Pain logic

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

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

..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

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!

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 unknown 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...

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

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.