Sally's World

Hello, remember me? I'm that person that used to blog every day, catch up with all your blogs and offer some sort of support (I hope).

For the first time in what seems like forever, I have accosted Dave's computer and have a few moments to catch up and let you know whats going on in our insane lives...

I'm working ridiculous night-time hours, which seems ideal for an insomniac...but I'm not sure when I am supposed to catch up.

Deion is finally getting his botox in his thigh muscles, this should ease the pain until his operation to put his knee caps back down in the right place... where the thigh muscles are tight, all the exercises he has to do are pulling the kneecaps up, rather than stretching the thigh muscle...ouch!

Deion has had some special tests to see how the swallowing is going, his swallow is now unsafe with bread/cakes, anything of that consistency as the tongue is not holding his food in his mouth, so it slips down and he aspirates...hence all the chest infections.

Also plain fluid goes down too fast with the same results...so he has to have thickened drinks.

The doctors are talking about giving him a gastosteomy feeding tube so he can have enough fluid and calories safely...although this terrifies me because its all a bit "de-ja-vu" I am obviously happy to do whats best for Deion. Deion however is refusing, because the only person he knew with a gastro tube was Aaron and no matter how much we are trying to reassure him its different, he is scared. He also, very intelligently pointed out that we wouldn't tell him if he had an illness like Aaron's anyway...which is probably true, not sure how to reassure him really, and that kills me.

We get Deion's neurology results on the 10th Feb...so wish us luck.

I am feeling a little under appreciated to be honest, this may seem selfish and shallow compared to Deions dilemmas... I wonder why everything I do goes unnoticed, yet I am supposed to celebrate everyone elses achievements with gusto... I don't really know how to keep up with all the housework, cooking, cleaning, appointments and work these stupid late night hours. Of course, everyone still expects dinner on the table, dry cleaning collected, food in the cupboards and ironed clothes!!!!

Maybe I can arrange for the fairies to come in and do it while everyone is asleep...well, everyone except me of course, because I shall either be sitting in a police station somewhere asking a twelve year old why he thinks its okay to be stealing cars at 2 am/thumping his mum/carrying knives/smoking cannabis...or else I'll be trying to catch up with the bloody ironing!!!

Enough about me!!!

Jordan and Robyn have just had a few weeks of intense studying and exams, I think they have come through it relatively unscathed, if somewhat tired....mind you, now they have less study...maybe they can help out more round the house....sorry....just a thought!

Deion had his first secondary school report....8 distinctions, 6 merits...way to go Deion...a total star, that's gonna cost us!!!

We were snowed in for Robyn's parent teacher meeting...but she was so keen for me to see her teacher and be impressed that we trudged about four miles through the snow, met with the teacher for about 5 minutes...because of course he has no worries and thinks Robyn's a star, then we trudged four miles home....tell me again why I couldn't have that conversation on the phone???

Jordan and I seem to be bickering a bit at the moment, I guess its because he is in that in-between stage, he thinks he knows it all and is a grown man at the ripe old age of 16... "I'll be able to drive next year you know mum"... (that'll keep me off the roads anyway!)... and I still think he's my little boy... I must learn how to let go. I just see so much scary stuff out there, its not that easy.

The house is slowly getting sorted, we are 'nearly there' on most things... bit of tiling, bit of painting, a few shelves to put up...we'll get there, I'm just glad to be in and that everyone has their own space.

Okay, I suppose I'd better go, I'm not sure when I shall get a minute to get back on the PC.

Thanks for your e-mails and comments checking I'm OK, I really appreciate it,

Love you all

Sal xxxxx

Seeing as it's after three o'clock in the morning and everyone else in the house is sound asleep. It seems like a good time to tackle the issue's surrounding insomnia. I have no hope of getting to sleep next to Dave's freight train like snoring anyhow. It wouldn't be so bad if there was something decent on the telly at this time of the morning...there never is, although I am now somewhat of an expert on African and Indian wild life.

Insomnia is something that I have suffered with for so long now, that I don't even think anything of it anymore. And this is a problem I share with several mums and dads I know. It seems to frequently go hand in hand with having special needs kids.

I know exactly why it began; Aaron had sleep disturbance from day one, he never slept more than 2 hours at a time no matter what, so I had to get used to having short bursts of sleep whenever he did. Of course the other children came along and it was no longer possible to do that, and Dave was working full time, so I never expected him to do the waking nights (besides it would have taken a small explosion to wake Dave once asleep) so I just got used to having less sleep.

Although this may be a major factor in my extreme clumsiness of course!I was always, stumbling out of bed, stubbing my toe, tripping down the stairs, and the kids learnt some rather choice words too.

I guess my body just trained itself to adjust, I got into a routine of four hours sleep and that was that. Of course when Aaron became oxygen dependant, he needed someone with him 24 hours a day. He needed suction, percussion physio, and of course he was tube fed, so it was an every minute job. A family support worker we had recently met did come and see us, and was clearly shocked at how shattered I looked ('you look shattered' I believe actually translates to 'good god woman you look rough')and so she arranged for a nurse to come and sit with Aaron three nights a week for six hours at a time.

So that's when I slept...from midnight to six am on Mondays, Wednesdays and Fridays. I was up every minute of every other day. I did doze of a couple of times, once while I was actually standing up doing the ironing would you believe and another time while I was in the middle of changing a nappy (just a wet one luckily). But I got used to it, and I valued those precious hours in bed.

So I guess my insomnia is self inflicted in some ways, and I now find it impossible to sleep normal hours. It's not my brain or my body's fault, I've deprived it of sleep for so long, it's getting it's own back now.

Besides, you don't really want to be in the same room as me if I've had more than four hours sleep, I'm a nightmare, I bounce off the walls and run around like a Tasmanian devil on acid. Dave and the kids joke about not sitting still for to long in case they get dusted, polished, painted or tidied.

But on the other hand, I don't think I'd get everything done if I had to take four hours out of my schedule. I need another three hours in the day as it is! Twenty hour days seem extreme, but I think my life's pretty extreme. There are too many things I want to achieve to spend too much time sleeping I suppose. of course, the odd lay in would be good.

Night night, sleep tight!

Sal x

I loved when the kids were small, and birthdays were all about cake and balloons.

Now they are all about the right dress and make overs.

Robyn was 15 at the weekend, and no, she didn't want a McDonald's party, or to go to the park or adventure playground, she wanted to shop til she dropped and to have a sophisticated lunch with her friends....

Where do the years go???

Don't worry, I don't mean my husband, although, that would be preferable to the heart wrenching agony I felt when Deion wheeled himself into his first day at secondary school.

I actually thought I was having a heart attack at one point, all the while Deion was saying "don't worry mum, I can handle it." I think I don't like realising I have to let go, and he's my baby, the youngest, the last one.... I don't like to believe I am not as needed as I think I am!

Deion had a great day, he looked so grown up, he made lots of new friends, reconnected with those from primary school. He was full of tales of having his own lift key, a classroom assistant that supports a 'like, totally, rubbish' football team and what he had for lunch.

It turns out that the nervous breakdown and the mild stroke I had were unwarranted.

The pictures make my heart melt, I am a proud mum....here's my 'not so' baby!!!

As I mentioned, we've spent the last few weeks getting organised for the imminent return to school, we've been to the school outfitters, the stationers, every shoe shop within a twenty mile radius, we've sewn on badges, labels, paired socks, sharpened pencils, packed bags, trimmed hair, organised timetables....

Of course, goes without saying Deions special bathroom, toilet chair, changing table, hoists, slings, tables, care workers, key workers, classroom assistants, storage, fire evacu chairs, care plan, physio plan, O.T. plan, is all in place (the usual!!!)

But we are ready, two days to go and they are all abandoning me again... mixed emotions for me...I shall spend the first hour wandering around the house enjoying peace and quiet, then I shall clean and scrub for the next three, then I shall start missing them and counting down to four o clock, where they will all stampede through the house like a herd of elephants, or in Deion's case a demon driver....then I shall start counting down the hours until they leave for school again the next morning.

Hard to please...who me???

Deion had a fidgety night to say the least, I spent half the night cooling him down, and the other half warming him up, his temperature was up and down like a Yo Yo. he went through four sets of bedding and five pairs of pyjamas and I have given up with trying to stay clean or dry myself!

Its lovely to see him laugh still, after yesterdays post we had a couple of other suggestions, like, playing this little piggy with his toes (thanks J.J) a few sayings like 'in the pink' and 'when pigs fly' (thanks Pam) or 'theres snowt wrong with you' from a friend up north...too funny.

All good, so keep coming with any suggestions, he's loving it! and as we know, laughter is the best medicine...well, along with tami-flu, antivirals, anti-biotics and pareceteomol. Not to mention mums undivided attention...oops, gotta go, I'm needed!

Poor old Deion seems to be having more than his fare share at the moment. He's been ill over the weekend, today the doctor confirmed he has Swine flu.

I am run ragged, knackered, I need a shower, some clean clothes and a hairbrush, its a good job I'm too tired to see straight, the sight of myself in a mirror may push me over the edge.

In my house, we don't really do sympathy, we do affectionate teasing so we are all doing our best to keep Deion cheered up and smiling.

This involves:

a) Frantically oinking and squeeling at him at regular intervals and asking if he can understand us,
b) Frequently checking for a curly tail,
c) Intermitently showing him pictures of Miss Piggy and asking him if he fancies her yet.
d) Asking if he needs help if holding his drink is hard with trotters.
e) Whenever he farts, asking if he can smell bacon.

Strange as it seems to all you functional families out there...but this is what he needs.

I'll blog when I can, in between the symptoms (believe me, you DON'T need details)

sal xxxx

Seeing as it's after three o'clock in the morning and everyone else in the house is sound asleep. It seems like a good time to tackle the issue's surrounding insomnia. I have no hope of getting to sleep next to Dave's freight train like snoring anyhow. It wouldn't be so bad if there was something decent on the telly at this time of the morning...there never is, although I am now somewhat of an expert on African and Indian wild life.

Insomnia is something that I have suffered with for so long now, that I don't even think anything of it anymore. And this is a problem I share with several mums and dads I know. It seems to frequently go hand in hand with having special needs kids.

I know exactly why it began; Aaron had sleep disturbance from day one, he never slept more than 2 hours at a time no matter what, so I had to get used to having short bursts of sleep whenever he did. Of course the other children came along and it was no longer possible to do that, and Dave was working full time, so I never expected him to do the waking nights (besides it would have taken a small explosion to wake Dave once asleep) so I just got used to having less sleep.

Although this may be a major factor in my extreme clumsiness of course!I was always, stumbling out of bed, stubbing my toe, tripping down the stairs, and the kids learnt some rather choice words too.

I guess my body just trained itself to adjust, I got into a routine of four hours sleep and that was that. Of course when Aaron became oxygen dependant, he needed someone with him 24 hours a day. He needed suction, percussion physio, and of course he was tube fed, so it was an every minute job. A family support worker we had recently met did come and see us, and was clearly shocked at how shattered I looked ('you look shattered' I believe actually translates to 'good god woman you look rough')and so she arranged for a nurse to come and sit with Aaron three nights a week for six hours at a time.

So that's when I slept...from midnight to six am on Mondays, Wednesdays and Fridays. I was up every minute of every other day. I did doze of a couple of times, once while I was actually standing up doing the ironing would you believe and another time while I was in the middle of changing a nappy (just a wet one luckily). But I got used to it, and I valued those precious hours in bed.

So I guess my insomnia is self inflicted in some ways, and I now find it impossible to sleep normal hours. It's not my brain or my body's fault, I've deprived it of sleep for so long, it's getting it's own back now.

Besides, you don't really want to be in the same room as me if I've had more than four hours sleep, I'm a nightmare, I bounce off the walls and run around like a Tasmanian devil on acid. Dave and the kids joke about not sitting still for to long in case they get dusted, polished, painted or tidied.

But on the other hand, I don't think I'd get everything done if I had to take four hours out of my schedule. I need another three hours in the day as it is! Twenty hour days seem extreme, but I think my life's pretty extreme. There are too many things I want to achieve to spend too much time sleeping I suppose. of course, the odd lay in would be good.

Night night, sleep tight!

Sal x

I’ve noticed that there is a trend in the e-mails I’m receiving from some of the mums who are following the blogs. That is that many seem to be angry that it is their child who was born with a disability. While I totally understand it, and know it is a perfectly natural reaction to finding out your child has special needs, you cannot allow it to affect your lives.

You have been given the most amazing opportunity. You get to take care of a most precious child, an extra special child. You need to feel blessed and grateful for that. Whilst it is a very different life than many parents and families will experience, it is incredibly rewarding and fulfilling as long as you embrace it wholeheartedly.

So by all means get angry, but direct it at the right people (which definitely is not yourself as some mums feel). My anger is not at having children with disabilities, it is at the system that makes getting my kids what they need so hard. So that anger can be productive, it is the fight and determination that means you will achieve what you need to for yourself and your child.

You cannot let the anger get to you, because it will affect the life you have with your child. If anger is the focus, fun and laughter won’t be, not all the time. And what matters, especially to kids, is fun and laughter. Live life, make it fun, make it count and make sure there are no regrets and ‘should haves’ when you look back.

Of course, you may not see it that same way as I do, not everyone has my views and ways of coping, and I respect that. So please, please feel free to comment and give me your opinion. Also, if I can give you any advice on the practical issues surrounding disability, then you just need to ask, if I can’t help, I bet I know someone who can.

So, word for the day…Gratitude!

Sal xx

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 and while we fund raised, I did a lot of reading, (no change there then), I read about the dolphins themselves, and I read about peoples experiences, and most importantly I read about how those people were afterwards.

Now 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.

Take care, see you soon. xxx

I saw a new TV show advertised yesterday, I don't watch much TV, so don't know if its an old or new thing. Basically, the show is about a family who go back to living how they did in the seventies when the parents were growing up.

My kids were horrified at the thought of it, but I thought what a great experiment it would be. Imagine, no video games, no DVDs, video films, three channels on the TV, no mobiles, no money for designer trainers and clothes...

On the advert a boy of about 15/16 actually cries his eyes out when his dad takes his TV and computer games away from him....

I think it would certainly teach kids about real life a bit more. Lets be honest, our kids are a tad spoilt...oh, I know we have no-one to blame but ourselves, but I for one would love to see how my kids react to being a kid in the seventies.

Paris 2008

Florida 2003

2005

Ah, children.

A woman knows all about her children. .........She knows about dentist appointments and romances, best friends, favourite foods, secret fears and hopes and dreams.

A man is vaguely aware of some short people living in the house.

The tattoist should have asked for proof of age!!!

Can't really see the problem with this one...Aaron was like this every morning/lunch time/dinner time/mid morning/bedtime/middle of the night...

Football hooligan!

Start 'em young!

This is pretty tempting!

Sadly, all mine have tried this very thing!

Yick!

Wish i'd thought of this!

Boys Show No Fear!

Okay, so I was over at ‘who says 8 is enough’ (http://bouffard11.blogspot.com/2009/04/out-of-mouths-of-babes.html) earlier and her interview with her son was fantastic, it inspired me. I’ve been tagged on this one several times…so I got the kids to interview Deion on how he feels about me…(doing the sign of the cross and looking heavenwards as we speak) well, we were already on the subject or Deion embarassing me...so better to get it out of the way!!!

1. What is something mom always says to you?
“You can be anything you want to be” oh, and “do you need to do a poo before we go?”

2. What makes mom happy?
She likes cuddles and when I do well at school, she is very happy when someone wins a lot of money in deal or no deal.

3. What makes mom sad?
If we argue, if people drive like total idiots and if we fart or burp in a restaurant (making stabbing motions in my chest now)

4. How does your mom make you laugh?
By tickling, or pulling silly faces, or when she tells me something silly we saw in a film.

5. What was your mom like as a child?
I think she was very tidy and never answered her mum back, cos she tells us she would never have been able to get away with those things, and she always ate all her vegetables, even if she didn’t like them so she wasn’t ungrateful.

6. How old is your mom?
She’s 40 this year, but doesn’t want a party cos then she won’t be able to lie about her age.

7. How tall is your mom?
Very tall for a girl, but not as tall as dad.

8. What is her favorite thing to do?
She likes going to the park and she reads a lot of books, she writes on the computer, her favorite thing is to go on holiday and swim in the sea.

9. What does your mom do when you're not around?
She drinks tea I think. (???)

10. If your mom becomes famous, what will it be for?
For writing a book and for killing plants. (huh?????)

11. What is your mom really good at?
Cooking, cleaning, shopping, making superhero costumes, and I think driving fast.

12. What is your mom not very good at?
Football, basketball, cricket, baseball, running, jumping, riding a bike, hoola hoop, skipping, rugby, high jump, long jump, skateboarding ice skating, roller blading, she has a bad aim, netball, volley ball, tennis, badminton (I had to shut him up at this point, I was getting depressed)

13. What does your mom do for a job?
She sells t-shirts and helps children go to the dolphins, but I don’t think she gets paid for that, she looks after us all, and she cooks a lot, I think she gets paid by my dad.

14. What is your mom's favorite food?
Chocolate cake (oh yeah!!!)

15. What makes you proud of your mom?
Ermm, she lets my friends come round and gives us lots to eat.

16. if your mom were a cartoon character, who would she be?
Mum would want to be wonder woman but I don’t think so. (thanks Dee)

17. What do you and your mom do together?
We go swimming, watch films, play computer, she takes me to the park and visiting, we have to go to the bank sometimes, and shopping, we go to a lot of appointments and have picnics in the waiting rooms so I don’t get bored or hungry.

18. How are you and your mom the same?
We’re not really, she says I’m mad like dad!

19. How are you and your mom different?
She’s a girl silly, and, like, old! (thanks Dee)

20. How do you know your mom loves you?
She tells me every day, and she didn’t come to school dressed like wonder woman when I asked her not to. She makes me my favorite food.

21. What does your mom like most about your dad?
She beats him at scrabble (okay, this one’s true)

22. Where is your mom's favorite place to go?
Bimini to swim with dolphins.

You may laugh...you think its easy...but its not...I set you a challenge!!! if you're nerves are up to it, ask your child and let us know what they say lol!

My daughter came home from school today telling me how a boy had come to her school and threatened a girl with a knife…

Was the world such a violent place when we were growing up, or where we just shielded from it, was there just less media courage?

All I know is that when I was younger my parents felt safe when we left the house. But for me, now, it’s getting to the point where I’m frightened to let the kids go to school, every time we turn on the TV or open a newspaper, another teenager has been shot or stabbed. And it seems to be getting closer to home.

Should I really have to say to my fifteen year old, “if someone threatens you for you phone or money…give it to them, don’t fight back.” After all, phones are replaceable, my kids aren’t, but kids are getting stabbed at an alarming rate for mobile phones, i-pods, or anything come to that.

I’m sick of opening the paper to headlines about knife culture, gun culture, gang culture. Gangs are on the rise, and apparently it seems to depend largely on you school and postcode…quite frankly I’m terrified. I ask Jordan and Robyn what they see or hear about, and they seem quite matter of fact about knowing it goes on. They tell stories about one gang member turning up at school to fight another every now and then and it terrifies me.

I know there were fights when I was at school, but never more than fists…or a bit of bitch slapping or hair pulling if you were lucky!

When I pick the kids up from school, there are always police around, dozens of them, they want to put metal detectors in schools to stop kids carrying weapons…it was never like this when I was young, I don’t know a single person that carried a knife. And these are the GOOD schools!

What frightened me a few weeks ago was, as part of the crack down on knife crime, the police stopped a bus in the morning, it had nothing but school kids on it, the police searched and they found no less than 23 weapons…23 weapons amongst a bus full of 12 to 15 year olds.

What are we supposed to do, wrap our kids up in cotton wool, keep them home, tell them to run, what about Deion, he can’t run, there’s a big increase in disabled people getting mugged and robbed too, its a bloody mine field…

And opening the paper to this…is why…

29th December 2008 - New Knife Crime Statistics
The new figures indicate that in the year 2007-8 there were some 277 deaths from stabbings in England & Wales alone (the highest recorded figure for 30 years). This represents an average death toll as a direct result of stabbings of over 5 for every week of the year!

Was it always this unsafe? Do you remember anyone you know getting stabbed?…every kid I know, knows someone that has either been stabbed or been affected by it…love to know if it’s the same for you and your kids!

As today is mothers’ day in the UK, I am naturally going to dedicate today’s post to my mum.

What to say about Mum… my mum is one of the most amazing people I know, selfless, honest, generous, helpful, never overbearing, never pushy, just right. I never realised when I was growing up, all the things she went without to make sure we had everything we needed. Only looking back did I realise I was too busy doing the spoilt teenager thing and asking for the latest ‘can’t live without’ fashion item, to realise that mum wore the same boots year after year, or never treated herself …

My mum and dad always worked hard, always made sure we were comfortable and taught us about morals, honesty and decency….my mum showed me how to be a mum, how to love nurture and support.

And you know, my mum has no clue how special she is. When someone tells her she is great, she looks genuinely surprised and says she is just doing what mums do, she says she is just an ordinary mum, and she is so very much more than that. When people wonder where my strength comes from, you need look no further than my mum. I am from a long line of strong/determined…okay, yes… stubborn…women. Even mum in the past has wondered where Aaron got his determined streak from, or I get my fight from…I just look at her like she’s mad and ask her if she knows herself at all!!!

I can’t imagine how I would have gotten through losing Aaron without my mum, she came, she supported, let me do and say whatever I needed to, got me dressed on the day of the funeral, held me up when the carriage came....

So I may not have appreciated her so much when I was growing up, may not have realised how hard she fought for us, worked for us, but I’d walk through fire for her now, just like she would for me.

When I first started blogging, I wrote about my mum, you can read that post here….

http://sallyannestephenson.blogspot.com/2008/10/wonder-woman.html

I love you mum xxxxxxxxxxxxxxxxxxxx

Finally, Deion has revealed his well protected 'secret superhero identity'….Yellow Lightning!

Never heard of him you may say…no…me neither, because he is merely a figment of Deion’s rather over active imagination.

Today is Red Nose Day, and the kids schools always do something to raise money for Comic Relief…it always involves dressing up, which means I always end up with pretty horrifically scarred fingertips, as I am far from the handiest person with a needle and thread.

So Jordan and Robyn were easy, they are older and in secondary school, so they just had to pay some money and wear their own clothes (preferably red) and wear a red nose!

But Deion’s school decided on a superhero theme, and get this….they encouraged the children to use their imagination and come up with a superhero of their own…about ten mums groaned…I was one of them…I am all for a good cause and I love dress up…but prefer the type you can buy off the shelf and something that doesn’t involve me bleeding profusely from the fingertips.

So Deion wanted to be ‘Yellow Lightning’, a superhero who has the power to shoot lightning bolts from his fingers, he’s faster than a bolt of lightning and can channel electricity and use it for good…

I’ve posted some pictures of Deion all ready for school, he was so excited, he could barely sleep last night, he refused to wear a coat because it would ruin the look of his costume. He certainly drew a few glances as we went out to the bus…it was the lightning bolts on the customised wheelchair (oops ,sorry, lightningmobile) that did it.

One poor lady walked into the lamppost outside as Deion shot down the ramp at high speed (not his fault, it was his lightningmobile…it can’t go slow!!!)

So he’s off protecting civilians at school, while I bandage my fingers….

Totally adorable!

Thank you everyone for your support, for the messages/cards/e-mails/comments sent in honour of Aaron. I gained so much strength from your words.

I sent a big red heart balloon up to Aaron yesterday (red was his favourite colour).

We had a balloon release on the day we celebrated his life, it was incredible. No-one wore black, and we didn’t have flowers, we had balloons, and seeing literally hundreds of balloons of all his favourite characters, colours and of course dolphins float up into the sky, was breath taking. I’m sure some people though it was a little mad, with his white horse drawn carriage, his casket hand painted with dolphins, everyone in their brightest clothes and craziest hats (another thing he loved…mad hats), and dozens of cars following with balloons hanging out the windows…but he would have loved that. We even finished the night with fireworks, a huge dolphin shaped Aaron which stopped traffic and caused chaos!!! Perfect.

And for those of you who didn’t know Aaron you are right, he is an incredible child, and an amazing spirit.

I don’t know if you all know but I did write a book about Aaron and our lives together, the fights, the struggles, the love, the laughter, the madness!!!

It started off as just me sitting at the computer for hours on end because I couldn't sleep and writing everything down, it was as if I was terrified to forget the tiniest thing about our lives together..and it just grew, and the more people that read it and were inspired, or laughed, the more I realised it was a way of leaving a legacy for Aaron. He taught us so many lessons, there was a chance for him to teach more and more people.

If you would like to know more about Aaron and what we all went through, then please let me know, I’d be more than happy to send you a copy of Aaron’s book. Although it may be hard to get through in places, I can promise it will still inspire, and still make you laugh in places. Aaron’s spirit shines through and really teaches us all something about love and determination!


You can e-mail me through my profile, I look forward to hearing from you.

Here are a few or Aaron's favourite hats...

The Jester (perfect for Aaron)..not everyone can pull off a hat like this!

AH, not quite a hat...but Aaron tried it on for size anyway!

His absolute favourite..Aaron the Viking, this always drew a few looks as cars pulled along side us!

He even fashioned a few of his own!

A more sophisticated look!