Sally's World

I cannot believe that I have actually written 500 posts. Okay, okay, some some weren't mine, some were e-mails or quotes or videos that I couldn't resist sharing. But 500 times I have clicked on that publish button and something that says something about me is out there on the world wide web.

Looking back, what makes me smile is how different my blog is to what I expected.

Originally, I was going to do a weekly update, talking about life as a parent with special needs children, about how to live with the loss of a child...I thought I was going to be giving support and advice to other parents like me.

And to a certain degree I think I have, sharing information is the best way to deal with many aspects of special needs and disability. But I have received just as much information back.

But what I didn't expect was to get into it and write about everything and anything that's on my mind, and what is even more amazing is the love and support I have received from my fellow bloggers. I didn't expect to love reading about the lives of people from all over the world, I didn't expect to be able to relate quite so much.

I feel less alone, I have an outlet, I can share the little things that make me laugh (or cry), things that otherwise go unsaid. I can have a bad day, rant, scream, cry, swear, and all I get back is support.

My biggest thanks has to be to Trojan of Trojan's Corner, he is the one that believed in me and what I had to say enough to encourage me to blog in the first place.

Here's to the next 500 if you can stand me for that long!!!!

Trojan of Trojans corner videoed a review that inspired me to take the kids to see this film. And I'm glad it did, we all really enjoyed, it, lots of fighting and chase action, some humour, a love interest. What I loved is the fact that it wasn't just one main character, they all had their own Little story, even the baddies....

Definitely worth going to see

I know you have all heard me talk of my good friend Trojan, well, his mum has started a blog too, it is definitely worth reading, Gloria speaks of uprooting her life in London to live in Spain, she talks lovingly and with humour of her husband, her dogs and her new home...go here to see her new blog.... http://gloriacarringtonferrira.blogspot.com/

My favourite posts are 'the day I met my prince' (I actually barked with laughter and made the kids jump) and the poem 'every time I see your face'... it's simply beautiful.

I've known Gloria for a few years, mainly through conversations with Trojan, and I feel that I know quite alot about her, her strength and how she raised her sons alone, she certainly didn't have an easy life. What I love about her blog is that you get to see a softer side of her, a playful side...

welcome to the world of blogging Gloria.

I hope you are all impressed with the new background. I'd like to be able to take the credit, but I won't, mainly because it would be a big fib.

My good good friend Trojan of Trojan's Corner did it for me.

Trojan's a star, and I hardly had to hint at all, I made one comment about liking something on his blog, and it was done, on mine the same day. Then he updated the background for me with one of my favourite flowers....

Most men (especially my darling husband) needs to be hinted to death, nothing less subtle than a sledge hammer over the head will do it. Birthdays and Anniversaries have to be mentioned on the hour every hour weeks in advance, and its still hit and miss if he remembers...

But mention something to Trojan and he takes it on board...a man that pays attention (not a myth after all ladies).

This is why Trojan introduced me to blogging, video blogs, and promoting the charity together. And also how we ended up salsa partners.

So Trojan thank you for your ideas, support, friendship and enthusiasm.

I bet he's blushing now lol!!!!

As you know by now Trojan (Trojans Corner) and I have been taking salsa classes for a while, we love it, and we go to a really small, friendly club to learn. It’s a great place to begin as everyone is learning and no-one makes you feel bad if you mess up…

As we have progressed, we tried a different club this week. I loved the class, the instructor broke down the steps, it was harder, more of a challenge and I think we’ll learn a lot…but unlike our usual class…there was an underlying bitchy element.

But Trojan said he didn’t notice, he thought everyone was friendly…how little does he know? Of course, the women were friendly TO HIM!!!! Trojan’s about six foot three and bloody gorgeous, not that he thinks of himself that way, and there is soooo much more to him, he’s the sweetest, most supportive guy… but he is a good looking guy, its okay, he knows, he must do, he has a mirror right?

So yes, of course the women were friendly (and for friendly read flirting outrageously) with him. Me…not so much, I got looked up and down, I got thrown looks, snubbed a bit and disliked a bit…but only by a few of the women, everyone else was fine.

Why are women like this with each other???

Sorry for my short and slightly depressing post last night, it’s just been a couple of days of ‘one thing after another’

We thought Deion’s school hygiene room was sorted, but when I went to check on the work, the education department have it all so tied up in red tape, they don’t know if it will be done in time…another day on the phone and writing letters, just making sure they understand what their duty of care is.

We have builders in making a suitable place for us all to live and to give Deion his own self contained space….total nightmare, we just seems to be throwing money (we don’t have) at it and it seems like progress is going backwards.

I had a puncture, and had to wait for ever for the AA man and then pay roughly a weeks wages for a new tyre!

My tooth is killing me, I have to go and have oral surgery next Wednesday…I only care because it means I’ll probably have to miss salsa.

Money went missing from my account, and it took me a couple of hours and a few more grey hairs to get it straight.

The hospital have lost my test results, so I need to go back and redo them.

Deion has been getting tummy ache, so we went to see the bowel and bladder specialist yesterday afternoon, his bladder is hanging onto it, so he has to have tablets, if that doesn’t work he’ll need catheterising…I think he’ll hate this, but its another waiting game. And a full bladder study, poor little guy. I do feel like I am failing to protect him from ANYTHING these days.

My husband has probably worked about 60 out of the last 80 hours!

I’ve put on four pounds, and I don’t know how!!! I HAVE NOT been overeating, I guess it seems shallow to worry about it with everything else going on, but it pisses me off none the less…and I am in full self pitying mode now…

Right, I better had go, I am going to salsa tonight with Trojan Trojan's Corner and I am soooo looking forward to switching off for an hour or two…having said that I’ll probably get run over, struck by lightening or mugged the way my days have been going!!!

1. What’s your current obsession? Salsa

2. What’s your weirdest obsession? Uh oh! towels being folded properly, socks have to match, bottles have to be lined up in order of size...have a certain order for books...I'm scaring you now aren't I???

3. What are you wearing today? White linen trousers, a purple t-shirt and fluffy slippers…what, I’m indoors, I’m comfy!

4. Why is today special? I am grateful for all my babies, the son is shining, I am over my bug…mostly, I love my friends!

5. What would you like to learn to do? Definitely salsa better…I’d love to parachute jump (doing one this year) and fly, hand glide..something thrilling!

6. What’s the last thing you bought? A loaf of bread….does that count, if not, it was some summer clothes for Robyn!

7. What are you listening to right now? UB40 and the traffic a couple of roads away.

8. What’s your favorite weather? Sunny, hot and sunny, sunshine, with a little extra sun, and hot!

9. What’s your most challenging goal right now? Oh god…too many, getting Deion all he needs for secondary school, getting Deion’s hospital results, making Jordan realize that he has to change his socks every day…making everyone else in the house realize the housework, cooking, cleaning and ironing does NOT do itself!!!

10. What do you think about the person who tagged you? She is sweet and funny and I love her blog, I’m honored she thinks I’m worth getting to know!


11. What's your favorite guilty pleasure? Chocolate cake, with chocolate chips, chocolate icing, chocolate cream, on a chocolate plate, with a chocolate fork…

12. Favorite vacation spot? Bimini Bahamas..

13. What would you like to have in your hands right now? Oops, can’t tell you what sprang to mind then…back to the chocolate cake……

14. What would you like to get rid of? Guilt, feeling inadequate at times, most of the government, most of the people than make decisions regarding the health system, the education system and roughly half the legal system!!!

15. If you could go anywhere in the world for the next hour, where would you go? Ooh, a hour floating in a warm sea!

16.Which language do you want to learn? Italian fluently…I only know enough to get by!

17.What super power would you like to possess? Invisibility!

18. What’s your favorite thing about the city you live in? it has an eclectic mix of people, some beautiful buildings, and you can get all your minerals in one breath!!!

19.What’s your favorite piece of clothing in your own closet? I have an oriental style dress which I love, it’s classy, pretty and hardly worn unfortunately!

20. What’s your dream job? Running my own dolphin program.

21. If you had $150 now what would you spend it on? Bills probably.

22. Do you admire anyone’s style? Oh, yes, Audrey Hepburn, her clothes, her attitude, her beauty…her minute size!

23.Describe your personal style. Oh dear, I don’t have one, jeans and sweats mostly, if I go out I like to dress up, but it usually ends up as black trousers with a fancy top, I love oriental style ones.

24. Who’s fashion show would you want tickets to? I have no idea, not one springs to mind…sorry!

25. If you had to slap one person with no repercussions, who would it be and why? Oh, there are so many lol! Definitely Russell Brand, he has to be one of the most annoying people on the planet!

26. What are you most proud of? My kids.

27. If you could choose one person who has passed to have lunch with who would it be and why? Aaron, Aaron, Aaron I’d give anything for some time with him!

Now the rules of this tag:

1. Respond and rework: answer the questions on your blog, replace one question you dislike with a question of your own invention

2. Tag 7 other people you would love to learn more about. Here’s mine:


Trojan's Corner Trojans a really lovely guy, you should all get to know him better.
Despair, Devastation & Dysfunction always something here to make me think or reflect...whether I want to or not LOL!!!
Is It Just Me? Missy makes me smile every day.
Mysterious Creature a strong determined woman who I admire.
Smelling The Roses And Dodgeing The Thorns always a great blog, always great advice.
darling dialogues a lovely blog, look forward to it every day!
The World According To J... started following JJ recently, and so glad I did, love her attitude to life.

I went over Trojans yesterday, and we decided to do a video blog…we’ve been following some stuff going on in the media, and of course the Rihanna and Chris Brown debacle…and it got us talking about people in the public eye, shouldn’t they be entitled to have a relationship without it being ripped apart by the media…

Trojan and I had somewhat different views… and to make matters worse, we decided it had to be short, so for some inexplicable reason set ourselves a sixty second time limit…I have absolutely no clue why we thought we could answer the question in 60 seconds, it just seemed like a good idea at the time.

Have a listen…its okay, we don’t come to blows…. well, not during filming!!!

Okay, so we see it differently, but as I said, with any job comes responsibility, if someone were to become a police officer or a teacher, it is accepted that they are going to be influencing children, therefore need to be responsible and set the right example…so in becoming rich an famous in an industry where you know young people will look upon you as a role model…you have a certain responsibility…

What you can’t see in the end shot there is me pulling on my boxing gloves…well, we had to have the debate…which roughly translates to ‘I need to go on and on until Trojan sees it my way!!!’ because, naturally, I couldn't possibly be wrong!!!

It is great that celebs are speaking out and raising awareness about disability...it is probably true that people seem to be able to relate more to high profile figures than members of their own community, so by talking about disability and how it affects families, is only going to help people understand and show compassion.

CEREBRAL PALSY FACTS

It is the most common form of disability in children

Around one in every 400 babies in Britain are born with it each year

The incidence rate increases to one in 20 for babies with a birth weight under 1500g

http://news.bbc.co.uk/1/hi/health/7988219.stm



High profile names can help raise awareness of a disease or condition, and bring it under the spotlight.

This video series talks to those in the public eye about their personal reasons for speaking out.

Football star Phil Neville speaks out about his daughter, Isabella's, cerebral palsy. He talks about the challenges and rewards of family life.

He shares his joy when she took her first steps, despite the doctor's odds.

Five years ago, Isabella was born ten weeks prematurely, weighing 3lb 3oz (1kg 445g). She spent her first few weeks of life fighting for life in a special care baby unit.

Isabella survived, but at 18 months she was diagnosed with cerebral palsy - a disability caused by damage to the brain before or during birth.

One of the reasons this is a great example is because it highlights the different levels of cerebral palsy quite well, here is a child with CP that can walk, obviously Deion has CP and is a wheelchair user, so even though the level of physical limitation may be different, what a family has to go through is largely similar.

Trojan from Trojans Corner has worked his magic again and made this beautiful short video album of our trip to the dolphins...it brings back memories so sweet it brings tears to my eyes.... Thanks Trojan, you are an angel...go to http://www.trojansgallery.blogspot.com/ to see his lovely post on the subject.



Why wild dolphins in the Bahamas? I know most of you have heard about swimming with dolphins in captivity in special centres, and I hear its incredible. We wanted a different experience though. Before we booked our trip I read about peoples experiences, and most importantly about how those people were afterwards.

One thing was obvious, no-one came away from their experiences with the dolphins without having had a life altering experience. But one thing became obvious the more I looked into it, and that was that the beneficial effects of swimming with wild dolphins seemed to outlast those of people who swam with captive dolphins.

There's lots of speculation as to why, some reports suggested that as wild dolphins are happier, they can give more. Others simply that the whole experience is freer, and therefore more therapeutic. But just as no one knows quite why dolphins are so beneficial, no one really knows the answers to that question either.

So we went off to look around on the Internet with Aaron on my lap, and he clicked off onto a group called Wild quest. We delved a little deeper and it seemed just what we were looking for.

Not only was this a group that took you out to swim with wild dolphins, it was actually a healing family week. Perfect. So off we went. I'm a bit of a water baby, so I couldn't wait to get there. Dave was a little apprehensive as he'd never swam in the sea before. The kids have no fear of anything, so they just wanted to dive right in and have an adventure.

When we got there, the size of the island was a surprise, it was tiny, and quite underdeveloped, and probably the most natural beautiful place I have ever seen. And the wild quest crew were fantastic with all the kids. They looked straight past Aaron and Deion's physical limitations and saw them for who they are as people. Total acceptance, as many of you know, is very rare indeed.

Although we initially thought we were going for Aaron, we all benefited. Deion, as you all now know has cerebral palsy, and we were not quite prepared for the effect the week would have on him either. All of our faces the first time we caught a glimpse of those magical dolphins gliding through the water must have been a picture. And the noises they make, I can't quite put it into words, but it's a sound that vibrates right through you and makes you feel totally peaceful. Like I said, words are inadequate here.

It wasn't all smooth sailing (pardon the pun). As I said, Dave isn't the best swimmer, I often tease him that he swims like a brick. He has a whole big excuse about his muscle being more dense than ours, closer to the surface, subcutaneous muscle he says, makes you heavier in the water. Whatever Dave!!! The day we saw a tiny baby tiger shark in the water though, his subcutaneous muscle didn't kick in, and he practically ran on water to get back to the boat. He shot past me quicker than I've ever seen anyone swim! Of course it would have been better if he hadn't left an eight year old Jordan in the water to fend for himself.

But before you ring social services, don't worry, there were plenty of other people in the water, and Jordan got back to the boat safely. We'll never let Dave live it down though.

Anyway, when we got back; friends, family, teachers and doctors couldn't quite believe the change in Aaron. He was more alert, his eyes were wide open and he had more energy than we knew what to do with. So we broke our necks and got back there every year, every time we touch down in Bimini it feels like coming home, wildquest crew have become family and it became our way of keeping Aaron strong. A sort of secret weapon, if he became week or ill, we booked a flight.

Thats why we scattered Aaron's ashes there, it was like taking him home, now we think of him flying through the waves with his dolphin friends. I know that's where I'd want to be.

xxx

I saw my good friend Trojan yesterday (http://www.trojansgallery.blogspot.com/) and we got into a rather heavy discussion about a very important issue.

Did we spend our time discussing the issues of world peace, famine, war, disease you may ask...NO! While the world is in the grip of this terrible recession, we discussed something on the tip of every ones tongue...yep! we discussed Time Travel!!...of course....

Now I love a good sci fi, I love watching films that make us wonder..but come on...its not really going to happen is it. There is one existence...and we are in it, surely its obvious that for time travel to be even remotely possible, there would have to be millions and gazillions of parallel universes happening simultaneously..nope, I just don't buy it....

Then Trojan came up with this Little gem!!!! time travel to the past is not possible, the past is gone, no going back...good, we agree on that then....but, nope, he thinks time travel to the future is the more probable to be possible...please, Trojan, I Love you dearly, but it is just too unreal...it's like visiting a house that isn't built yet...like the past, it doesn't exist...yes, the world may be heading in a certain direction, and there are many things beyond our control...but we can't nip in for a visit...

Besides, if time travel were possible, don't you think that all the superheroes (because of course, they ARE real, and if anyone could build a time machine it's them)would not have travelled into the future a few times, seen what a mess we'd made of things, then popped back and prevented the worst things from happening...honestly!

So you see...if Wonder Woman can't do it...it can't be done!!!

As you know my youngest son, Deion has Cerebral palsy, I was talking to Trojan the other day and he rightly pointed out that not everyone knows what that is exactly. After he did the amazing 'Yellow Lightning' comic book for Deion, one of his work colleagues asked him about Deion and Cerebral Palsy.

I'm not an expert...except on Deion's Cerebral Palsy and how it affects him... but here a few facts...

Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control. Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time.

Deion was born 12 weeks early, and had a severe brain hemorrhage at 4 days old, affecting a large part of his brain, and the ventricles in the centre of his brain also swelled leaving the rest badly scarred.

As the right side of Deions brain was affected the most, he has no use of his left side, but it affects both his legs and all his muscles. Its called triplegia.

Of course, there is so much more to it, and there is a huge range scale of how it affects children.I know lots of kids with Cerebral Palsy, and you would never know there was anything wrong, others are severely limited and speech, eating and even blinking can be affected. Deion is not affected intellectually, just physically, but this is not always the case.

Deion has the type of Cerebral Palsy that means his muscles are tight, so he has physiotherapy and a series of stretches and exercises to help lengthen and release the tight ones, and others to help strengthen the weak ones. Without them, Deion would find it hard to sit straight, hold his head or use his arms.

He has an occupational therapist to help with his hands, she makes him special splints to stop his hand bending over at the wrist, and gives us exercises to help him with his grip.

The speech and language therapist helps with...wait for it...no not speech LOL! chewing and swallowing...anything to do with the mouth and throat muscles. She tells us what he should and shouldn't eat, consistency, texture e.t.c so he doesn't cough and aspirate while eating.

So these are the main ways that cerebral palsy affects Deion, it is different for every child depending on what part of the brain is injured, and how extensively...it's sort of like asking 'how long is a piece of string?'

Personally, I think the brain is magical and can often find other ways to function. When Deion was six days old the doctors told us he would never smile, never sit up, never speak...I'm off for a refund now...because I can't get this child to shut up for five minutes!!!

Now, as you all know, one of my children is merely posing as a normal schoolboy to protect his superhero identity...Yellow lightning...

Deion had such a good day at school dressing up for red nose day, he loved the photos....so our very own computer expert, Trojan (Trojans Corner) worked his magic, and did this for Deion.

This has made Deions year, it is brilliant, he was so excited when he saw it, it bought tears to my eyes.

Thanks Trojan, you've made one superhero a very happy boy xxxxxxx

My good friend Trojan (Trojan's Corner) sent me this, knowing I would love it...if you are a woman, it will make you laugh, if you are a man...very useful information to follow!!!!

Fine: This is the word women use to end an argument when they are right and you need to shut up.

Five Minutes: If she is getting dressed, this means a half an hour. Five minutes is only five minutes if you have just been given five more minutes to watch the game before helping around the house.

Nothing: This is the calm before the storm. This means something, and you should be on your toes. Arguments that begin with nothing usually end in fine.

Go Ahead: This is a dare, not permission. Don't Do It!

Loud Sigh: This is actually a word, but is a non-verbal statement often misunderstood by men. A loud sigh means she thinks you are an idiot and wonders why she is wasting her time standing here and arguing with you about nothing. (Refer back to # 3 for the meaning of nothing.)

That's Okay: This is one of the most dangerous statements a woman can make to a man. That's okay means she wants to think long and hard before deciding how and when you will pay for your mistake.

Thanks: A woman is thanking you, do not question, or faint. Just say you're welcome.(I want to add in a clause here - This is true, unless she says 'Thanks a lot' - that is PURE sarcasm and she is not thanking you at all. DO NOT say 'you're welcome’. That will bring on a 'whatever').

Whatever: Is a woman's way of saying F-- YOU!

Don't worry about it, I got it: Another dangerous statement, meaning this is something that a woman has told a man to do several times, but is now doing it herself. This will later result in a man asking 'What's wrong?' For the woman's response refer to # 3.