Archive | April, 2008

Back to the pool!

29 Apr

I love swimming. Both my boys love the water too. Unfortunately though, their dad isn’t that keen. This means family trips to the pool are a rarity. And since Bean’s separation anxiety has kicked in, I don’t really fancy him staying in the creche. When he gets angry or upset, he bites. I am HOPING this phase will pass. In the meantime, I don’t really want to risk him biting the carers or other children (I like the creche too much to be blackballed!)

So we haven’t been swimming much. I really miss it. I used to take BC to hydrotherapy until the classes stopped operating and I couldn’t find another suitable class nearby. So then we went to to pool on our own. And when I was pregnant with Bean, I swam 60 laps of a 25m pool 3 times a week, every week without missing one session – right up until the day before I went into labour. It was my sanity. I convinced myself that IF I swam, I would be so physically fit there would be no way anything could go wrong in the labour. It’s only now, in hindsight, I realise that’s a pretty flimsy argument, but it did what nothing else seemed to do, and that was fill me with positive energy and got me through the pregnancy and the labour without freaking out – well not too much. If you’ve had one really terrible labour and birth experience, it’s hard not to worry too much.

This morning, we went swimming. It was great! I swam my 60 laps for the first time in months and I feel exhilarated but exhausted. Half way through I found myself panting, shocked to realise that I was more fit when I was 8 months pregnant than I am now.

And then BC and I had a play in the pool. I miss taking him to the pool as much as I miss going myself. I know it’s great for him. I can feel the freedom of his movement in the water. He laughs and bounces and splashes and TRIES and TRIES to kick and paddle.

Going to the pool again after so long reminded me of the story of Susie Maroney, Australian Olympic long distance swimmer who recently declared she has a mild form of cerebral palsy. She said of her mother “She knew the water was the best place for us: people can’t see you limp.” Maroney’s CP must be pretty mild given that she was able to keep it a secret until into her 30s, but it has stayed in my mind since I read about it, because it confirmed what I knew about the value of being in the water.

So we’re going to be heading back to the pool more often now. I am looking into one-on-one swimming lessons for BC starting soon and I want to get back into my 60 lap regime again.

It’s not that I see us swimming across the English channel, but I’d love to see him swimming to the other end of the pool and me having the energy and fitness to support him in whatever way he needs.

Giving Thanks

25 Apr

It’s Anzac Day here today.

We could have almost made the dawn service because both the boys were up at 5am. We should have. I hesitated because Bean woke with a cough. I think though, in all honesty, I was grateful to have an excuse to not go, because it was cold.

We did though head to the park on a rare early morning family outing at about 7am. It was a beautiful, crisp Autumn morning. Still cold, but the sun was peaking through the trees, dappling the leaves in their autumnal glory.

The park is adjacent to the local RSL and from there we heard laughter and mirth, the sounds of glasses clinking together, chairs being moved about, constant cheerful chatter. It was a lovely sound, full of celebration, odd for this time of the morning but very welcome. It made the morning seem so special.

We stopped by the War Memorial and looked at the wreathes, told the boys it was a place to remember. BC was more interested in finding the source of the laughter. Bean liked the colours of the flowers. As much as I wish they could appreciate the graveness of what all that means and the sacrifices that were made, I am glad that war means nothing to them. They can learn later from school books, films, visits to museums. That’s as close as I hope they’ll ever need to get.

We went to play in the playground. We were the only ones there. BC giggled uncontrollably being pushed on the swing. Bean prefered to push BC’s walker along the wet grass, around and around in wide circles -leaving a ring of flattened grass behind him. Their contentment was so calming, so soothing. We all laughed. My husband and I promised to not be grumpy anymore, to get up and go for walks in the morning, to spend more time doing fun things together.

This afternoon I heard a radio interview. A war veteran of the Kokoda trail was asked if he’d been scared at the peak of battle. He said no. He said that he’d been too busy concentrating on surviving.

Our morning walk to the park and that one comment suddenly mean so much to me. We have so much to be grateful for. So much to celebrate.BC’s challenges are indeed a challenge, but he’s happy, he’s healthy, he’s safe. We all are. And we are lucky.

The kindness of strangers.

23 Apr

People often focus on the things that strangers can say or do that are ignorant or show a lack consideration towards people with a disability.

And it’s true that happens.

But it’s also true that there are lots of people who choose to not be ignorant and who give a lot of consideration into the needs of people with a disability.

So from me, a huge thank-you to the volunteers who help with the Riding for the Disabled Association each week so that BC can enjoy his horse riding. A thank-you to the people who donate money towards CPEC where BC attends early intervention. A huge thank-you to my friend’s boss who has been letting her leave work early so she can help look after Bean while BC has his therapy.

Also a thank-you to the mums and dads who give simple and sensible responses when their children ask about BC and his walker when we’re out out and about.

And a massive thank-you to the total stranger who donated the money for BC to get a second skin suit. She had a minimal connection with CPEC. She knew a child who had been there and had helped raise funds for HIS second skin. And now, seeing what great benefits it had given him, she wanted to donate money for another child to get one. And BC was the lucky recipient.

We’ve got a lot to learn about the suit and how it’s going to help him. But as you can see, BC already really loves it.

And we wanted to say ‘thank-you’.

My little lamb

19 Apr

BC’s hair grows very quickly and it’s thick (that’s the Indonesian in him). But he also gets eczema on his scalp.

And so every 6 weeks or so, I get out the trusty clippers and lop off his locks.

The first time we cut his hair I was really sad because when his hair is long he has lovely kinky curls. But we didn’t have much choice. The only way we could get the itching to stop was to lather his scalp in the most wonderful product on the planet ‘Dermeze’ -an ultra moisturiser designed by the Royal Children’s Hospital. And with long hair, or with pretty much any hair it just gets too messy and too hard to apply.

So we shear him.

I thought he’d hate getting his hair cut with the clippers. The clippers are loud and I thought the feel of it would irritate him. But he LOVES it.

Today was shearing day.

I went to the garage to fetch the clippers and unravel the extension lead we use. When I returned a few minutes later I couldn’t believe what I saw. There was BC, sitting outside on our back verandah, in his little chair, waiting for me, with a big grin on his face.

This might not sound unbelievable to you, but for me it was staggering and wonderful.

Here’s why.

This means that in the 5 or so minutes that I was in the garage, he opened the back sliding door, dragged his little chair from the kitchen out onto the verandah and then climbed himself into the chair and into a perfect sitting position, with his bottom against the back of the chair, his feet out in front and no sign of a slouch.

Still not impressed?

This is a boy who can’t walk independently, can only stand on his own for a few seconds and who really takes his time to move about. So this was unprecedented, amazing, brilliant.

My little lamb is now shorn, slathered up with Dermeze and sleeping peacefully. And I am one proud old mummy sheep who will now stop gushing – or should I say bleating on ;-).

The tipping of the scales

16 Apr

I have two boys. One is 3 and a half, and the other turned 1 two weeks ago.

And now, one of my boys has learnt to walk independently. This is great. It’s a wonderful milestone to have achieved. I am thrilled, excited and proud.

But yet.

It also makes me a little sad.

My walking boy is 1. He has been trying for weeks to move off on his own, away from the furniture and his little trolley full of blocks. So yes, he’s worked hard to figure it out and build up those little leg muscles and his confidence. And well done!

BUT then there’s his big brother. He is hard working, enthusiastic and energetic. He embraces physical activity and relishes any chance that he can get to help get his body doing what he wants it to do.

But his body just won’t – yet.

And me, the mum who like any mum just wants the very best for her children just thinks it’s not fair.

It’s not fair that the scales have now tipped.

They’ve only tipped a little. There’s still lots and lots of things that the big brother can do that his little brother can’t. And we will of course continue to celebrate each of their own unique milestones and achievements. And I know that how long it takes to do something isn’t really that important – nor is it the be all and end all if some achievements are never made – but now the scales have tipped I’m learning of a new challenge I need to face as a mother of a child with a disability – one which I’m not quite sure I can put into words.

Is it because I am now waiting for the big brother to ask me why he can’t do things that his little brother can?

Is it because I now can see how easy it is for a ‘normal’ child to achieve goals – does that make me frustrated that the big brother has to work so hard to and we have to put so many hours, money and effort into therapy?

Is it because I am frustrated that any sadness should be twinged with the joy I feel for my baby boy’s achievements?

Or is it because I know that I just can’t, shouldn’t, musn’t make comparisons between the two of them but that I don’t know how to not?

Whatever the case, we’ll muddle through. And as always, look at the bright side. At least the big brother won’t have to fight with his little brother any more for rights to his Kaye Walker.

And as soon as I can figure out how to do it, I will just throw the scales away. And get back to just unreservedly enjoying both my wonderful boys ;-).

MSG and nightmares

12 Apr

Whenever I eat a decent dose of MSG (monosodium glutamate, flavour enhancer 621) I have nightmares.

Naturally, I avoid it whenever I can. But last night I was caught unawares by a particularly delicious batter on a piece of flake. I should have guessed it was laden with MSG because it just tasted so good.

That’s the problem with MSG. It DOES taste so good.

I have done a little research (not very thoroughly I’ll admit) to see if anyone else has nightmares after eating MSG, but haven’t found out much about it. I wonder if it’s just me.

Nightmares are so awful. Even when I wake up and know the scenario was ridiculous and would never actually happen, I still feel anxious.

Last night my nightmare was that I was in the backseat of the car with the boys, when I should have been in the front seat driving. We started going down a hill, heading towards a red light. I tried to dive into the front seat to push down the brake, but we were going so fast that every time I tried to sit up, I was pushed back into the rear seat. The thought kept going through my head – THIS IS REAL, THIS IS REAL. As we sped the last few metres towards the red light, I woke with a gasp.

My boys were asleep on either side of me as they are every night. They were both snoring gently. BC had pushed off all his covers as usual and Bean’s hands were curled into sweet little fists against his chest.

They were fine. We were all fine. But yet, I still felt the imminent fear of hurtling towards a red light, in an out of control vehicle, unable to stop .

Luckily, I have found a homeopathic remedy that helps ease the anxiety causing effects of the MSG. That helped once I got up and took it, but I wish I’d realised before I went to bed that I needed it, because I really do hate having nightmares. It ruins my whole night sleep.

I know that some people always believe dreams have a meaning or even a message. It’s not a great leap to see the meaning could be that I fear something happening to the boys. But was there also a message – Life’s moving too fast? Protect the children? Don’t sit in the back seat when you’re supposed to be driving?

I dunno, but I certainly will be back on full alert avoiding the MSG. I have enough of the reality to occupy the part of my brain that deals with worrying about the future to be wasting precious energy and brain space on the inanity of dumb old nightmares…

Books we love

11 Apr

We read books a LOT. I mean seriously, a LOT.

In fact, if it were up to BC we wouldn’t do much else.

So it’s in my very best interest to choose books that I like as much as he does. Because once he’s found a book that he likes, we will pretty much read nothing else until the pages are worn out and I can pretty much read it with my eyes closed.

Thank goodness for libraries.

And for my super aunts who taught me a love of good books when I was a child and are now wonderfully still buying books for my children too.

We read a lot of Maisy books, Bananas in Pyjamas and Noddy books but the books we really love at the moment are -

In The Night Kitchen – Maurice Sendak.

Actually, I have loved this book too since I was a child and we read my old very well thumbed copy of the text. We should really buy another copy. I was a brotherless child and therefore a little shocked at the sight of Mickey’s naked body and drew some clothes on him. I wasn’t the only one who did this. I was interested recently to read that the book when it was first published in 1970 was actually quite controversial and librarians also gave him some clothes. I really must get to the shops and buy my boys their own, uncensored version – but I’m torn because I also love the fact that I am reading to them the exact same copy of the book that was once read to me. I think that’s special.

BC loves the artwork and thinks the fact he loses his clothes, nearly gets baked into a cake and turns the batter into an aeroplane is fantastic. It’s always a winner and I could honestly read it over and over again.

‘Harriet, you’ll drive me wild’, by Mem Fox

Mem Fox is awesome. The usual favourite is “Where is the Green Sheep’, which is great, but I love this one more.

Whenever BC frustrates me (which ok, I’ll admit is often, he is 3 after all!) my catchcry has now become a borrowed line from the book ‘BC, my darling child. BC, you’ll drive me wild’ which he just loves. It diffuses even the most tense of moments into giggles…..

You really do need to read this book and, as we do, interpose your own child’s name in place of Harriet, who ‘was a pesky child. She didn’t mean to be. She just was.’ It’s so gorgeous and so true. And I love that if I DO lose my cool, we can venture back to this book to talk about how sometimes mummy’s do get cross, ‘just like that’….

‘The Story of Growl’ by Judith Horacek

Judith Horacek is actually the illustrator of Where is the Green Sheep. This book, which she wrote and illustrated is gorgeous. It was an Easter gift and our new favourite. Little Growl the monster is different and his growling not very socially acceptable to his neighbours. I love that rather than Growl being forced to change, his difference is ultimately celebrated. The text is sparing and beautiful and the illustrations are gorgeous. AND BC now LOVES to practice his growl (or ‘gow’ at least ;-)).

I wish I could say I am reading something of my own, ie. a ‘grown up book’, that is equally impressing me. I haven’t read a book since we got back from our holiday overseas. Sad, but true ;-(. I have however, just picked up a copy of Tibor Fishcer’s ‘Don’t Read This If you’re stupid‘ from the library. Reviews I’ve read are mixed, but any collection of short stories with such a title must be worth a look. And apparently one of his other books ‘Under The Frog’ is brilliant. The library didn’t have that one, so I am starting out with a ‘taster’. I haven’t read a collection of short stories for ages, so I am looking forward to getting into it…..soon.

And we rest our case (for good)

10 Apr

I went to see a lawyer about a month ago to see if we possibly had a medical negligence case against the hospital where BC was born.

I hadn’t ever considered doing this until I met Dr Derek (the troppodoc) while travelling in the Sumatran jungle a few months ago. I told him a little of BC’s birth and he urged me to look into it. If a doctor down the road had said the same thing, I wouldn’t have really listened I don’t think. But this is a doctor who is working in a part of Sumatra where there are NO doctors. Where people die of totally preventable causes – or often causes unknown. Here we are, in a developed country with a supposedly first class medical system and 3 years on, I still didn’t really know WHY our boy’s birth went so badly and IF it could have been avoided.

I was wary that I could get angry if there WAS a case against the hospital. Wary too because I honestly think I have accepted BC’s condition and don’t hold any grudges or regrets about my choice of hospitals etc. I also wasn’t sure I wanted to be involved in a long litigious process. BUT thanks to Dr Derek, I did want a few answers. Realised I actually needed them.

Looking online for a medical negligence lawyer is a real eye opener. It is a real ‘business’ for lots of lawyers. I didn’t want that. I didn’t like their websites. They didn’t include the lawyers’ names and some even provided false and misleading information about cerebral palsy (one claimed that a very high percentage of people with CP have limited intellect). So I chose a well reputed law firm and spoke with a lawyer whose questions indicated pretty clearly that she knew exactly what she was talking about.

The lawyer was brisk but friendly during the appointment. I liked her. She read through the medical records and asked a lot of questions about the birth, paying particular attention to the timing of certain events. We spent about 45 minutes reviewing the birth. And weirdly, I didn’t feel upset or angry at all. I was just really curious to hear what she had to say.

She said that we had causation absolutely. That athetoid cerebral palsy most often is caused by trauma in the final stage of labour. But negiligence? Her overall observation was that there wasn’t a strong case. If a case at all. But she wanted to run it by an obstetrician to see if he could “see” anything further in the report.

She was very apologetic. Even more so today when she rang to say that the obstetrician agreed with her and they didn’t think we would win a case. She apologised profusely. But she didn’t need to.

I know it’s her job and this meant she wasn’t getting work, but I I don’t think she was disappointed for that reason alone. She’s one of the good guys. I think she was more sorry that she wouldn’t be able to help secure us funds to help with BC’s future.

But me? Yes, a tiny little disappointed that we won’t have the chance to get much needed funds that we could put towards caring for BC and towards him having a worry free and independent future. But we will do our best to provide for him and prepare him for the future.

The most overwhelming emotion that I felt was absolute relief. Relief that we had no-one to blame. Relief that we wouldn’t be going through a long legal process. And most of all relief that we had no reason to be angry. That things just are the way the way they are.

We are blessed that our wonderful little boy is alive. I will be giving him an extra big hug and kiss at bedtime tonight.

Case closed.

Gemma the horse.

9 Apr

After a long time languishing on a waiting list, we have started taking BC horseriding with the Riding for Disabled Association (RDA).

We have met Gemma the horse twice now. Before the first ‘assessment’ ride I warned the coach of BC’s fear of sitting/lying in high places. I warned that he would cry, scream, cling on to coach or helper and would probably want to get off straight away. So of course, I ended up looking like an overprotective melodramatic mama when BC grinned wildly and barely flinched about being sat ON HIS OWN on a HORSE by a total stranger. And there he sat, without any hesitation while I walked alongside the horse waiting for the meltdown, which didn’t come….

Yesterday, the coach told me to just ‘relax’ and watch from the sidelines. I watched from my banished seat for nervous mums, as BC balanced himself brilliantly on Gemma as she was led slowly around the small course, holding on to the saddle handles with one person walking either side of him, but no-one supporting him. Then when they stopped Gemma, BC followed all the coach’s instruction like an old pro – he stood, leaned forward to touch her mane, leaned backwards and pulled himself up to sitting again, let go of the saddle handles and raised both hands in the air and threw a ball back and forwards to one of the helpers. ALL on the top of a horse and ALL with the hugest grin you could ever imagine. By the end of the ride, he was elated, but exhausted.

BC LOVES Gemma and can’t wait until next week. He tells me he wants to be a cowboy now rather than a train driver. So, because I always have to something to worry about, it’s thinking forward to the day when he’ll ask me if he can ride in a rodeo….

One of the kids

6 Apr

BC attends child care very Friday. He’s been in the kinder room for about 6 weeks. It’s a combined 3-4 year old room. He’s 3 and a half. Nervous Nelly that I am, I was worried how he would settle in – with the bigger kids, less staff and more structure. But BC wasn’t worried at all. First day in the kinder room, he walked in (in his Kayer Walker) and joined the circle of sitting children as if he’d been going there his whole life! He barely even turned to wave goodbye to me ;-).

Fast forward to this week – when we arrived on Friday, one of the bigger girls had “saved” him a spot sitting next to her and it was his turn to be a ‘helper’. He was beaming. But it gets better. When I went to pick him up, he was chasing another child around the outside play area. CHASING. The child being chased by my son (wow he can move when excited!) was squealing in delight. All the kids were playing too. It was a wonderfully chaotic scene of squeals, flailing hands and flushed cheeks.

What was so great about this scene was that no-one was treating BC differently. He was just another kid playing chasy. The walking frame was irrelevent to them, as it is to us. It’s just a means to an end.

As I watched them play and enjoy themselves I wished I could bottle the scene and share it with the world. I wish that the people who stare at, or sometimes point, or even comment about BC when he’s walking in his frame when we are at the shops or the park could take a leaf out of those kids books and just not see the frame at all either. Just another kid. Because that’s all he is – just one of the kids. And I couldn’t be happier about that!

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