I wish.

Actually, there’s a much more boring reason for my absence from the blogosphere.

Suddenly, there are just less hours in the day.

It started when my husband was in Indonesia for a couple of weeks. I thought when he returned that I’d get the hours back, but turns out that being almost 7 months pregnant, I’m needing to sleep most nights by 7pm so I’m losing my evenings that I usually use for doing all those things that I ran out of time to do during the day. Of which there are many.

And of the hours that I do have, I just seem to be doing everything less efficiently than usual. Everything is taking far, far too long!

It didn’t help that a yukky tummy bug came to visit the house for a week. We’ve all been ill to various degrees – BC worst of all. We lost a lot of sleep (and he lost a lot of weight!).

And there are lot of things on for us right now.

At the moment, I am trying to sort out funding for a Voice Output device for BC, gather documents for visa applications for both my sister-in-law (long term visa) AND my brother-in-law (short term visa),  attend all the usual appointments, therapy sessions and reviews necessary for BC AND……

OMG, we’ve bought a house!!!!

I had NO IDEA how many fiddly little jobs that would involve and with my husband on night shift, most of those jobs are coming down to me.

Feeling like I need to either clone myself or find a clock that stops time for a day or two just so I can catch up .

Promise to be back on the regular blogging mill soon.

VERY VERY excited about the house, but equally terrified. Never been in debt before and with house prices so high here, it’s not a teensy tiny debt either….

Here’s a pic of the front of the house. Will post more ONCE we secure our finance. Fingers crossed that will happen in the next week!!!

As many of you know, we’ve been lucky enough to have the boys Aunty J from Indonesia staying with us for a while. Sadly, she needs to leave in 6 weeks.

I asked BC at dinner this evening if he was sad about Aunty J leaving.

He nodded vigorously.

‘Why’, I asked.

‘Well mum’ , he replied seriously, as he prepared to wolf down another mouthful of delicious Indonesian food prepared by Aunty J, ‘your cooking is really not very good’.

It’s the end of the school year here for year 12 students. That means that over the last week or so we’ve seen quite a few teens dressed up in funny costumes out and about. BC and Bean have enjoyed seeing them from the car and BC has told me he now ‘can’t wait’ to end year 12 so he can dress up. Good motivation .

It’s taken my back TWENTY YEARS (oh my God how could it really be that long????) to my end of year 12 celebrations.

Ending year 12 was a time of very mixed emotions for me. Of course I was excited to be ending school and heading off into the big wide world. But it had also been a very tough year for me. My mum passed away in Jan of that year. My results reflected that it wasn’t really the ideal way to start the year of study! I was however fortunate enough to have some a great family and some wonderful friends who rallied around me during the year.

Despite the difficult year, I will always remember this particular day as a fantastic celebration of not only finishing school but also of me feeling strong and resilient. We had a great day, starting with chicken and champagne breakfast in a park, hanging out with the teachers in the staffroom at lunch and then wandering the streets feeling invincible in the afternoon (yes, I know – me, the invincible milk maid ). Looking back at pics of the day always makes me smile.

It’s been a while since I’ve had a good old moan about something, so strap yourself in. Because I am cross about something today.

BC, Bean and I were at the shops. We wanted to buy something from one of those cheap $2 type shops – you know, the shops with cheap products of all description, often poking out of every corner and overflowing out the front door.

GREAT places to get a bargain, but not particularly good on the access front!

I was pushing Bean in his stroller (navigating my way AROUND all the items not stacked on shelves but on the floor) and BC was in his walker, following me down an aisle when he accidentally knocked something over – I should point out that it was something that was IN the aisle, not on a shelf. I pushed it out of the way and we kept walking.

A few minutes later he knocked something else over – again, an item NOT on a shelf, but in the aisle.

This time, the shop assistant came down the aisle and told me I needed my son to be more careful.

I told her that she needed to arrange her shop more carefully as there should be clear access to all aisles.

“We won’t be responsible if something falls on him” she said gruffly, “and you’ll need to pay for anything that gets broken”.

Now that got my ire up, totally.

I know that as a parent I need to be responsible for my children in a shop and I am. But it got me thinking about what THEIR responsibility is to provide access to everyone.

If it’s hard enough for a little boy in a small walking frame to access a shop set up like this, so I am sure it’s near on impossible for an adult in an adult sized wheelchair. And then there is the risk factor for someone with vision impairment trying to navigate their way around the obstacle course created…

This has got me thinking about just WHAT responsibilities a shop has to provide access.

I’m still learning, and getting my head around what requirements a shop has in this situation and that search has taken me to the “Disability Discrimination Act”.

I also found the Australian Human Rights Commission website which provides excellent easy to read summaries and info regarding this issue and many others. Here, it states:

Every area and facility open to the public should be open and available to people with a disability. They should expect to enter and make use of places used by the public if people without a disability can do so.

For example:

• Places used by the public should be accessible at the entrance and inside

It earlier lists ‘places use by the public’ to include ‘shops and department stores‘, so I am on the right track.

However, after a few other phone calls, I still haven’t been able to find out if there are any specific standards related to this issue or if it’s all just a matter of ‘guidelines’ – which aren’t of much use if a business doesn’t care to comply…

As I’ve said, I am still just gathering information, but I am realising that THIS ISSUE is going to be a CORE issue for BC as he gets older and needs to be able to navigate the world independently, so I am keen to find out more. I’d like to do what I can to allow for easier access for BC and to find out just whether I have any way of getting a store like that to at least ‘reconsider’ they way they display their products and make it accessible for everyone.

I am waiting for local council to call me back to find out what they have to say and will be speaking with a Disability discrimination consultant from a free legal service on Friday.

Anyone know more?

I will be back with more on this topic later…

There – moan over. I feel much better already

If I were to recommend one Australian author to a person of any age, Tim Winton would be right at the top of the list.

His adult novels are wonderful. His books for teenagers are fab (in my previous life as a secondary school teacher, the ‘Lockie Leonard’ books were always a winner).

Here I’d like to highlight 2 of his books for younger readers.

Firstly, good for school aged kids, is ‘The Bugalugs Bum Thief’. A brilliantly hilarious book about a town where all the bums are stolen. Causing great difficulty for people to keep their pants up.

A synopsis from the back cover:

Skeeta Anderson wakes up one summer morning to find that part of him is gone, something he thought he’d never miss – his bum. He discovers that almost every single backside in the town of Bugalugs has been stolen – and 496 bums is a lot of bums to go missing without a trace.

I could read the book over and over again. It’s great. I have tried it on BC, but he’s not quite up to that many words yet, but I am 100% sure both he and Bean will love it when they are older.

Secondly, BC’s current favourite book, a picture book called ‘The Deep’ about a young girl who loves the beach but is too afraid to go in the deeper water. As with all Tim Winton books, the text is beautiful to read – especially out loud – and the illustrations, by Karen Louise, are perfect.

Every morning, Alice’s family went down to the jetty for a swim. Her mum dived in and scooted along like a torpedo. Her dad made huge bellyflops that wet everyone, even the seagulls in the air.

Happy reading

On Thursday, BC had a review appointment for his Second Skin body suit.

As I’ve written before, we love this suit. MUCH more so than his first suit (as in his first Second Skin suit, compared to his second Second Skin suit )

The first suit had too many zips, took longer to put on, was a pain to take off for nappy changes etc and BC HATED the way it restricted his movement.

The restrictions were deliberate, as one of the aims of the suit is to promote CORRECT movement as opposed to the EASIEST ways of moving – but that’s difficult to explain to a little boy who suddenly found he couldn’t crawl or walk the way he wanted to…

Within minutes of putting the first suit on, BC would be begging to take it off. AND what’s more, he grew out of it very quickly.

Given the price tag attached to the suits, we were not sure we would try for a second time.

However, as we had already been incredibly fortunate enough to secure some funding AND as we had seen the potential of the first suit, we decided to give it a go.

We’ve had this second suit for 6 months and the difference in BC’s balance, coordination and strength has really been astounding. It’s difficult, of course, to know how much we can put this down to the Second Skin suit, but I am 100% sure it has made some difference.

He is now able to take up to 20 independent steps (only on a flat indoor surface and still very wobbly and not always really well controlled, but definitely independent – woohoo!). He can sit on a regular chair with much better balance and control. He can literally RUN in his kaye walker and his endurance has increased dramatically.

In short, it’s been a very GOOD 6 months.

The review was to see how the suit is going fitting wise and also to check that it’s doing all the things it should be doing.

It was the first time we’d met the lovely lady who conducted the review, so she was relying only on the notes given to her to see the difference in BC’s movement, but even based only on that, she was impressed.

She was also very satisfied (as we are) that the suit is still fitting well and will hopefully have much more life in it. We have been tentatively been placed on the list for another review in Feb, but we’ll only take that up if we see that BC has had a real growth spurt.

If all is still going well, then we’ll skip that appointment and have a further review in May next year.

As we’ve yet to make use of the inserts that we’ve been given to ‘expand’ the suit (and there’s a few seams that can also be unstitched to make it bigger), I am confident that we won’t be needing to go back until May.

We are really happy with the suit and while BC continues to really dislike ‘putting on’ the suit, once it IS on, he is very happy to be wearing it and I think is really able to feel the benefits of the support that it provides – and yes, he still loves being Spiderboy .

Most people who read here will know that I have close connections with Indonesia, especially Sumatra. My husband is from North Sumatra and this is where we met, while I was living there some years back.

In recent weeks, I’ve been thinking a LOT about Sumatra, partly because my husband has been back to visit his family, but also because of the terrible earthquake that struck West Sumatra on September 30th.

I travelled through this area of West Sumatra in Jan 2001 and it’s a beautiful part of the world. The photo below was taken at Lake Maninjau, not far from the city of Padang which was badly damaged in the quake.

I was travelling with a friend who I discovered not far into the trip had far different expectations from travel that I do. The mudslide on the road to West Sumatra from North Sumatra that kept us stuck in our bus overnight until they cleared the road terrified her, the typical Asian squat toilets horrified her and when we arrived at the gorgeous, yet primitive lake side huts that we were to stay in at Lake Maninjau, she promptly burst into tears and insisted we relocated to the much more upmarket guesthouse further along.

All the time that she struggled with the less ‘luxury’ travel that she had been used to, the locals were so sweet. Always smiling and encouraging and finally close to the end of the journey I think she’d adapted somewhat and finally relaxed into the location and the adventure.

Lake Maninjau has a particularly special place in my heart. It’s a beautiful and mysterious place with wonderfully friendly locals and the most spectacular views you are ever likely to see. I hope to go back there some day.

My heart goes out to the people of West Sumatra. I hope that the experts are wrong and that there IS NOT a bigger earthquake to come. There’s already been too much loss and devastation in this wonderful part of the world.

This year was the third year that we’ve taken part in the 5km walk as part of the Melbourne Marathon.

We’ve been involved because CPEC – the early intervention centre that BC attends – is the official charity.

The highlight of this walk is that it ends with a lap of the MCG.

Both boys have had colds this week so I wasn’t expecting either boy to be up for lots of walking, and I was right. Bean was happy to sit as long as we were providing him with a constant source of food.

BC took it easy most of the way in his stroller but he enjoyed starting the race in his walker and walking over the bridge that crosses the Yarra River (stopping of course to take in the views!).

But, the whole way he kept asking me ‘When do we get to the MCG??’ And as I suspected, as soon as we DID reached the MCG he couldn’t wait to get back into his walker and he really did ‘race’ his way to the finish line.

We were all VERY pleased when we crossed the finishing line – especially me. I had underestimated how much of an effort a 5km walk would be being nearly 6 months pregnant. I was well and truly exhausted!

The walk raised an astonishinly large sum for CPEC (close to $300,000). Wow!

After sitting in the stands and eating some lunch, we trekked back to the train station and had a very quiet evening. We were all asleep by 7pm. BC insisted in sleeping with his medal on the pillow beside him. He’s always a winner in my books !

This week, I’ve been thinking a LONG way back.

It was my mum’s birthday on Tuesday. She passed away when I was 17. She would have been 62 this week.

I miss her a lot.

This photo was taken in June 1974. The baby my mum is holding is my little sister, L. It’s me with my back to the camera (always been camera shy!) and my older sister S is standing next to me.

I love this photo – despite it being a bit worse for the wear at the bottom right corner!

I was 2 and a half in this photo. I don’t really remember my baby sister coming home from hospital, but I love the way this photo captures this moment.

The photo means so much to me on so many levels. Because I love my sisters and value this little flashback to our first meeting. Because I miss my mum and love this reminder of her. Seeing her face always makes me smile and brings back so many great memories. And finally because in just a few months I imagine my two boys meeting their little brother and I am really excited thinking about us being a family together.

Of course the photo also makes me a little sad, reminding me what a wonderful grandmother my mother would have been and wishing that my children had the chance to meet her.

Happy birthday mum. Thinking of you always! xo

I had my appointment with the specialist this morning to get the results of the biopsies done on the lumps in my breast.

I’ve been doing my best not to think about it all much, wanting to avoid any further panic attacks AND I’d done a pretty good job. So I arrived at the appointment feeling very relaxed and confident and prepared for anything.

The doctor, who I’ve now seen on several occasions is a lovely guy with a generally very good manner.

However, today he seemed a little aloof. He asked me how the biopsy had gone (a weird question I thought) and I told him that they’d had a little trouble locating the lumps, to which he replied ‘Well, they certainly found something’…..

He then proceeded to look through his notes for what seemed like forever (but was probably all of 30 seconds) before he said anything further – long enough for me to be totally freaked out and convinced I was about to hear a very negative prognosis.

BUT when he finally spoke it was to say that they were in fact ‘lactating adenomas’, benign as he had predicted and nothing to really worry about.

That’s the PHEW!!! I can’t tell you how relieved I was!!

BUT I went home feeling quite angry with him for his manner, for not having come straight out and told me what he knew. I was already mentally planning a blog post about doctors who think they are on reality TV shows and need to draw out the suspense…I was also mentally composing a letter of complaint.

However, it all makes sense now and the doctor is totally off the hook.

This evening, I was clearing old messages from the answering machine and there, crisp and clear from last THURSDAY was a brief message from the doctor confirming that the lumps were indeed benign and that I could give him a call rather than coming in for the appointment.

LAST THURSDAY.

My usually on the ball DH had heard the message, not really paid any attention to the content and COMPLTELY forgotten to tell me.

AAAHHHGGG!!

In my husband’s defence, this particular doctor refers to himself as ‘Mr’ instead of ‘Dr’ and as English is not my husband’s first language, he tends to gloss over calls when there’s technical or medical type jargon involved. AND we do get our fair share of calls from specialists/therapists etc with an array of messages regarding appointments/results etc with relation to BC that are generally my domain and which he doesn’t bother much with (which is fine with me).

BUT still AAAHHHGGG!

It totally explains why this doctor was a bit weird today – probably trying to figure out why on earth I was there at all given that he’d left a message saying I needn’t come in. And of course he was blase about the results – he’d assumed I already had them….

My husband apologised, but was for the most part unrepentant saying that I shouldn’t have worried anyway until AFTER I had any results and been told there WAS something to worry about – it’s a good point, I know, but still. I will be checking the answering machine VERY regularly from now on!

And I am relieved, very relieved. And very grateful that I have nothing more to worry about than a husband who can be a little vague about passing on messages. In the bigger scheme of things, that’s not such a terrible thing .