Inspiration

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!

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.

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.

The I've Been Corrected Blues

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

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...)

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.

Looking Up

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!

What those Romans needed

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

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

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

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

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.

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.

Heart ache

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

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.

Off to a slow start

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.