Late as usual! Happy New Year!

 

We have a wonderful time with the house filled with family and friends, tables filled with laughter, chatter and beautiful food, the kitchen filled with everyone contributing to  long lunches followed by nightly feasts, card games and other games keeping us up late, the occasional  evening watching DVDs, days of long walks and sailing on our beautiful harbour, floating in the pool, walking on the beach at Pearl Beach, wondering at the wonder of the star-filled skies. It has, as ever, gone all too quickly and the first to leave will be Simon tomorrow, heading back to Peterborough and Arrowsmith. Not really rested with all the mayhem going on, as he puts it, but certainly refreshed! I think he is looking forward to more routine and his quieter life for a a while but he is also looking forward to being home later in the year and putting down roots and moving into a new phase of his life. It has been so good to hear from many people of the changes/progress they see in him (I have to remind some people that improvements is not a good way to describe his changes, at least I don’t think so, the negative connotation being that he was less before).

I am heading out to an Art gallery shortly and just quickly want to wish each and everyone of you the happiest of New Years, and may 2016 be filled with joy, laughter and much love.

I leave you with the words of Neil Gaiman:

May your coming year be filled with magic and dreams and good madness. I hope you read some fine books and kiss someone who thinks you’re wonderful, and don’t forget to make some art — write or draw or build or sing or live as only you can. And I hope, somewhere in the next year, you surprise yourself.
...I hope you will have a wonderful year, that you’ll dream dangerously and outrageously, that you’ll make something that didn’t exist before you made it, that you will be loved and that you will be liked, and that you will have people to love and to like in return. And, most importantly (because I think there should be more kindness and more wisdom in the world right now), that you will, when you need to be, be wise, and that you will always be kind.
And for this year, my wish for each of us is small and very simple.
And it’s this.
I hope that in this year to come, you make mistakes.
Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re Doing Something.
So that’s my wish for you, and all of us, and my wish for myself. Make New Mistakes. Make glorious, amazing mistakes. Make mistakes nobody’s ever made before. Don’t freeze, don’t stop, don’t worry that it isn’t good enough, or it isn’t perfect, whatever it is: art, or love, or work or family or life.
Whatever it is you’re scared of doing, Do it.
Make your mistakes, next year and forever.

– See more at: http://journal.neilgaiman.com/2011/12/my-new-year-wish.html#sthash.a7vl1Z39.dpufIMG_0867

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An exciting surprise for me and Simon!

The gorgeous Nancy from her inspiring and humbling blog, Alzheimer’s Wife, has nominated our blog for an award – The Quintet of Radiance award (Richard, I know you will be laughing at this point) but it is a wonderful feeling to know that our blog is being enjoyed by people we haven’t even met (other than online). Our blog was started as a means to share our adventure in Canada with our family and friends and has extended to include so many and so much more and given such a lot back to us.

This is what Nancy said in nominating us:

I also want to nominate fiona and simon who tell their story of moving from Australia to  Peterborough, Canada, so that Simon  could go to a special school where  his learning difficulties could be treated in the Arrowsmith program.  Their daily experiences, travels,  Simon’s progress — all of it is shared with us.

In accepting the award, we have to thank our nominator, so a big thank you to Nancy, I love reading your blog, it is so beautifully written, your love, warmth and humour shine through no matter how stressful or difficult the situation you find yourself in whilst caring for Bo. You are truly inspiring and I feel honoured that you have nominated our blog.

We also have to write something about ourselves in 26 words (and a few more!), so following Nancy’s lead, I asked Lara to do this – this is what she came up with (and I have added some in too):

A true friend no matter the distance
Beautiful/brave
Clever
Diplomatic/dog lover
Ever welcoming
Full of smiles/fun
Glutton for life
Helpful to any in need
Inspiring/insightful
Jolly good fun to party with
Keen to learn new things
Loving/long haired
Mum
Nature loving
Optimistic
Patient/ potato-master!
Quirky
Reader
Simply wonderful/Son
Teacher/traveller
Understanding
Very determined
Wise/walker
Xenodochial
Youthful
Zen

I’d like to nominate Stephen Liddell for his blog where he writes with insight, humour and compassion on a wide range of subjects from World War I to the best complaint letter ever – he makes me laugh as well as to think about things I might not otherwise have thought about (and I usually read his blogs with Simon too).

And also Colour the Moment written by a clearly wonderful Mum  – this is what she says about herself  – This is the home of The Outstanding Wife. It is a blog about the ups and downs of daily life. It covers topics from parenting, to people, to pelvic floors and happiness. And a whole lot of other, everyday things in between.  Warm and witty insights into her world, sometimes heartbreaking as she describes other people’s reactions to her autistic son and sometimes the most beautiful poems – all compulsive reading.

 

So proud of you, Simon!

It has been a few days since we got home but now we are back, no longer feeling like zombies, back to the glorious harbour in a house that is colder than our apartment in Peterbrough! Back to walking Rusty through our beautiful suburb of Balmain, back to shopping in familiar shops – it feels very comfortable and easy. Back to Pearl Beach, log fires and unusually rough seas, long walks through the National Park to Patonga and back.

Back again to Sydney, rounds of appointments, dentist, optometrist and more, but TODAY was a special day – Simon was awarded his Gold Duke of Edinburgh award, an award that is earnt only through persistence and dedication, months of volunteering, learning a new skill, doing a sport regularly, going on a trip away from home, in his case going to Cape York to help set up a community garden in a very remote Aboriginal community and as a cultural experience interacting with the people thereimage (1) and going on a journey, a hike in New Zealand, both the Northern and Southern Tongariro circuit, unfortunately in the most terrible conditions, but he did it! We are so proud of him! Not that many students make it through to Gold, most stopping after Bronze and more after their Silver which makes Simon’s achievement all the more remarkable.

We are off to celebrate now!
And I don’t know why this didn’t get published but here it is now, rather later than planned! And no time to write anything after that but I will start writing soon!

Sun and a swim

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Our 3.15am start yesterday was somewhat challenging!  Worthwhile however once we saw Dubrovnik from the bus. We made it through the chaos of the busy square outside the old town to catch the bus to our hotel in Ladal a little way away. We spent the afternoon by the pool, napping and swimming, watching Roger Federer loose the Men’s Final at Wimbledon, despite our best efforts to encourage him! Down to the beach side for a beautiful dinner with beautiful views.

off to explore Dubrovnik now!

Time is at a premium!

Just a quick, quick post as I have to get to the bank and do lots of other not so exciting things! We are currently in London, with a seemingly endless list of purchases to be made, shopping to be done, furniture to make and sorting all those things that need to be sorted with a new home and no internet for a week! I appreciate that is very much a first world problem but having no instant internet access makes life so complicated nowadays, which only serves to make me realise how addictive the internet is! Not an addiction that is possible to overcome, I fear!

Anyway, apart from all of the above we have had some respite, with Victor cooking us all a magnificent meal on Sunday evening – sending off Lara and Laura on their adventure around Greece and Turkey in great style! I also had a lovely lunch in King’s Road on Monday, in between buying mattress protectors and looking at garden furniture! Simon and Jean took themselves to Hamleys and Fortnum and Mason’s for afternoon tea!  And yesterday, Vicky treated Jean and me to a special day – tickets for Court number 2 at Wimbledon, where we watched some fabulous tennis, enjoyed a Pimms, Moet and strawberries and cream!

I have a moment to catch up with myself whilst everyone else has gone to “Wicked” – Simon’s favourite musical! I am sure they will have a fabulous time. Must dash now but I will post again soon – hopefully the internet will be connected before too long. To those friends I haven’t contacted I apologise but this move has been far more hectic than I ever imagined it might be, and that, despite everyone working so hard. To all our packers,lifters, shoppers, furniture makers, box unpackers, home organisers, you know who you are and a big thank you to each and everyone of you! Arrowsmith seems a long time ago now, even though It has only been two weeks!

 

The usual blog plus Writing 101 – day 12

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The usual blog plus Writing 101 - day 12

The only constant in life is change – so the saying goes. I believe it’s true. Times change, people change, circumstances change and we are moving on. Next year will be a different year in Peterborough, new house, new students and new cognitive improvement exercises for Simon!
I had a great meeting with Mr Coppins (Matt) today reviewing Simon’s year – the hard work he has put in has resulted in great progress – one day I will do a post about the changes I and others have observed throughout the year and those that Simon has seen, if he approves of that idea! In the meantime I am just putting this out there – I am very proud of you, Simon! Which neatly brings me to Writing 101 – (Virtual) dark clouds on the horizon – write about a real conversation and the dark clouds alluded to in it. This conversation happened almost 19 years ago to this day and I can remember it so very clearly as I have rarely been so shocked and hope never to be so again.

It had been a long road and perhaps we should have seen the dark clouds on the horizon. I know the exact moment they came into being. When we were called into the back room to talk with the Professor of Neurology just as we had been told we could take Simon home the following day. Taking him home – those words were so thrilling to hear after the trauma of 18 days of our tiny boy in intensive care and 10 days in the recovery ward. 18 days with tubes everywhere, infusion pumps with medications trying to get his newly repaired walnut-sixed heart to pump regularly, so many things that could go wrong and did go wrong, a new and terrifying experience to us, spending hours by his bedside, such a little body on the big bed, willing him to stay alive. Taking him home – sheer joy dashed away only moments later.
The professor of neurology was clearly disturbed about having to have this conversation with us, indeed I would go so far as to say, if he could have avoided it, he would have. That probably would have been negligent so he didn’t. The CAT scan, of Simon’s brain, showed some profound changes – areas of white opacity all over the place, probably as a result of his prolonged low blood pressure post-operatively. The implication of this was completely lost on me, but not so for my husband, given that he is medical, though in another field entirely, I suppose that is not surprising. He had been researching the neurological signs that Simon was displaying, quietly terrified by what he found but not saying a word to me. The professor started out by showing us the CAT scan which meant nothing to me. He went on to say that whatever he said we should take with a large grain of salt as “cardiac babies” usually do better than he predicted – I still hadn’t really grasped that anything was untoward. He stated that the white opacities may have damaged Simon’s brain though to what extent he couldn’t say, they may lead in a moderate disability, say a difficulty with maths, or planning or maybe something more … hedging, hedging, not daring to say what he didn’t want to say, until my husband challenged him. “Ok, will he walk or talk by the time he is 5?”. Well, you could have knocked me over with a feather, I had been so focussed, pouring all my energy into keeping this tiny boy alive It had never occurred to me that there would anything more once we had got him through those rocky days in intensive care. “I can’t say” he answered. “Remember the grain of salt” – it wasn’t much consolation at the time.
Those dark clouds looked so forbidding, coming straight towards us over the horizon. We had no idea what was in store for us, for Simon, for our family. But, you know, we have dispelled them. the sun shines brightly! I know because I just had a call from Simon “Mum, you’ll never guess! It’s hysterical, we are stuck in a tunnel in Canada’s Wonderland because there is such a massive storm outside! I’ll see you when it finishes!” Such excitement in his voice, such joy in my heart. There may be a storm out there but I see sunshine and rainbows.
We’ve all come a long way together, since that dark day in the back room with the professor of neurology. Slow and steady wins the race, we are still racing but we are almost there at the finish line.

Writing 101 – day 11 – my home when I was 12 (and the usual blog too)

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Writing 101 - day 11 - my home when I was 12 (and the usual blog too)

Not only my stolen bike but also the rain thwarted my plans for today – I really wanted to bike to the zoo at least, and if the weather was cool, and if Simon was cool (I’m so funny!), to Lakefield but no! So, instead we sorted, packed and moved the last of our things, did bits and pieces, changing our address at the bank, took a picture of the stolen bike to the police station (they weren’t in the least bit interested, even though they asked me to bring one in). That was enough, we had a Lion King movie marathon in the afternoon! Great animation, great lyrics and great escapism!
The Ashburnham Ale House was our choice for dinner, taking Andrea and Jonathan to thank them for all the Friday nights and good times we have had at their house this year. My smokin’ trout salad was delicious as was the beer! Simon enjoyed his ribs – anything eaten with fingers is good as far as he is concerned!
Walking back into our apartment with nothing on the walls to make it our own is quite shocking – so bland, as Simon observed. The photo illustrates our card wall, all the cards we brought with us and have been sent whilst we were here. That decoration for us was the difference between a home and a house.
Which leads me straight to
Writing 101 – day 11. Describe your house when you were 12 – vary your sentence lengths.
It is so clear to me although, funnily enough, I am not sure what time of year it was when we moved there. A very modern square, townhouses, seventies. Our house was on the outside of the square, overlooking the road and on the other side of the road the beautiful large detached Victorian houses, with their semi-circular drive in and out drives, sash bay windows on the ground floor with, I was sure, magnificent drawing and dining rooms, Upstairs, Downstairs basements where the kitchens were full of kitchen maids and a fiercesome housekeeper cooking whatever was fancied Upstairs, gracious bedrooms on the first floor and on the second floor, attic bedrooms for the servants, although in reality more likely for the children, and a huge garden behind the house, hidden from our view. Our modern house was so unromantic by comparison, straight up and down, a front door by the garage door was the façade to the world, into a narrow hall, stairs to the right, study to the left, which lead through to a small garden and a laundry at the end of the hallway. I had no idea how luxurious it was to have a separate laundry. let alone a garage! Upstairs to the kitchen, all mod-cons. A Sink-erator which we thought was brilliant – no smelly rubbish, it was all gobbled up and disappeared into the pipes below, although the occasional teaspoon wreaked havoc. There was a hatch from the kitchen to the dining room – so seventies! It seemed the height of convenience to have a hatch to pass the dishes through and not have to walk the few feet to the dining room. Another modern feature – the dining room and sitting room interconnected! We didn’t sit much in the sitting room, other than to watch television, at that point we only had one television and we all watched it together, which is entirely unimaginable for today’s 12 year old! But that was the way it was. The velvet sofa and armchairs, the dark coffee table and the nest of tables, all so clear in my mind, opposite an alcove in which there was the built in unit with cupboards on the bottom, a fake fireplace in the middle, above a beautiful mirror with shelves on each side, the Meissen shepherd and sherpherdess which my mother most treasured being in pride of place. Upstairs again, first coming to the spare room with another seventies feature, the sink in the bedroom, along the landing past the airing cupboard, then the main bedroom, with its white carpet, flowery curtains and ensuite bathroom, it seemed to me the epitome of elegance and sophistication, Would that I could ever have such a room! Upstairs again, into a square landing, four doors leading from it, one to my bedroom, one to my sister’s long narrow room, one to the “playroom” – I’m not sure that we ever played in there, I know I spent a lot of time studying at my small desk and probably almost as much time looking out of the window into the square below, and one in the bathroom. A fairly typical house of it’s time, our home. Who Knew? A home. A house. A killer design.