Sally's World

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???

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!

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

My son Jordan is 15 and a bit of a brain box, I'd like to be able to say he gets it from me, but it would just be a big fat lie!!!

He's been able to do 500 piece puzzles form the age of 4 and has been able to annihilate the most ardent chess player since he was about six!

When he was 5 and got his first connex construction set, I proudly made a cube, turned to show him and he humoured my creation while showing me the racing car, complete with a working steering wheel he'd built in the same amount of time.

He's taken most of his exams early, is doing 5 A levels, and is going to be an architect...I have no doubt he will do it, he seems to be able to swan through his school terms and exams with relative ease.

As Jordan's intelligence is common knowledge, one of his uncles bought him a Mensa challenge calendar for Christmas.

Great idea, it has a difficult mental challenge each day to 'give your Brain a morning work out' and they range in difficulty from 1 to 5. On the difficulty 1 and 2 days I breathe a sigh of relief, because after that, they really are hard.

Jordan loves them and always, tests me on them after he's completed them without too much trouble.

And I have to say, I hate feeling stupid compared to my own child. Oh, he left me way behind in his maths class work and stuff years ago but on something like this, I want to feel like I am keeping up! I consider myself an intelligent woman (most of the time), so I refuse to back down.

I have now officially lost the plot...when did I realise this, at five o'clock this morning, when I got up extra early (and on a Sunday too!), so I could sneak a peak at today's Mensa challenge and figure out the answer before Jordan was awake!

Ha! This'll show him...now when he gets up to do it, he'll test me and I'll be able to give the answer really quickly!!!

competetive...who me???

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!

Our Angel!

Today is the third anniversary of the day that our angel Aaron passed away.

I have purposely tried to stay extra busy for the last few days, and this is really saying something for someone who’s already so hyper they make coffee nervous!!

I’ve just tried to keep my mind off of the date and the significance of the day. Of course, it doesn’t really work all that well and my heart slams into the pit of my stomach every now and then when my mind wanders back to that moment three years ago, the very moment when I knew we’d lost Aaron and I thought the world would end.

I know we’ve come a very long way in three years. When I think back to the first few days when I had to remind myself to breathe even, then the first few weeks when I couldn’t function or get my clothes on the right way round, and the first few months when I couldn’t shut my eyes because of the image imprinted there, for fear of that first second of waking when the loss hit me all over again, from the nights just sobbing quietly into my pillow so I didn’t wake anyone else…to slowly learning to function, even to smile and eventually laugh….laugh for real, not just putting on a front for the sake of everyone else.

Yes, we’ve all come a huge way, I still have bad days where the longing is so great I can’t catch my breath, but for the most part I cannot help but smile and feel gratitude for Aaron and the amazing time we had together. I doubt as long as I live will I ever meet another person as incredible as Aaron. I have never seen his determination and zest for life matched. How can we regret being part of that!

But it is on days like today, the anniversaries, the birthdays’, Christmas… that those tears are so close to the surface, it is unavoidable. It will probably always be that way.

But even if I knew back then what it was going to be like, even if I knew back then that we would one day lose Aaron, if I knew the pain we’d have to go through, I’d still have done it, and I wouldn’t have done it any differently.

I don’t have a single regret. There are too many years of love, days of fun, too many moments of laughter and madness for us to hold on to, to have any regrets!

How privileged I am to be a mummy to such an incredible boy!!!

As always Aaron, I love you more and more each passing day, I’ll send a special balloon up to heaven for you today, so look out for it.

Mummy xxxxx

I’ve heard it all now, I already knew that there were many ignorant people out there, but this takes the biscuit.

On Cbeebies there is a new presenter, she’s a pretty girl, bubbly, good at her job, but dare I say it…she has a disability, she only has one hand. I have to say, I didn’t even notice at first, and I expect most kids didn’t…but parents actually started making complaints, hundreds of them flooded in apparently.

What a joke!

Some insensitive 'idiot' (for want of a better word) actually said… "Is it just me, or does anyone else think the new woman presenter on Cbeebies (Cerrie Burnell) may scare the kids because of her disability?

"I didn't want to let my children watch the filler bits on the bedtime hour last night because I know it would have played on my eldest daughter's mind and possibly caused sleep problems... and yes, this is a serious post."

Amazing! and sadly..no, it wasn't just him!

I truly cannot believe that so many people would discriminate so freely, perhaps if he was more sensitive, his kids would be too. Kids really don’t care about disabilities, until they are taught to do so, they may be curious, which is natural, but scared…I doubt it very much???

Other people accused the BBC of employing her to score points, actually accused the BBC of positive discrimination can someone explain this term to me please?

Cerrie Burnell rose above it, and even though she was said to be disappointed by the criticism she still welcomed the discussion…

"It can only be a good thing that parents are using me as a chance to talk disability with their children," she said.

"It just goes to show how important it is to have positive disabled role models on CBeebies and television in general."

Good for her.

This young lady has a child herself, is her child going to grow up frightened…NO! Because her child will be brought up in a household where differences make no difference to what a person can achieve.

To read the full report go to http://news.sky.com/skynews/Home/UK-News/Disabled-CBeebies-TV-Presenter-Cerrie-Burnell-Accused-Of-Scaring-Children-After-Complaints/Article/200902415227818?lpos=UK_News_Third_UK_News_Article_Teaser_Region__0&lid=ARTICLE_15227818_Disabled_CBeebies_TV_Presenter_Cerrie_Burnell_Accused_Of_Scaring_Children_After_Complaints_

When you look at me what do you see,
A woman, a wife, a mum of four, now a mum of three?
When you look at me what do you see,
A person full of possibility?

When you look me what do you see,
Someone kind, loving, carefree?
When you look at me what do you see,
The inspiration to my children I need to be?

When you look at me what do you see,
Someone who wonders how good she can be?
When you look at me what do you see,
The loving daughter, sister, auntie, friend in me?

When you look at me what do you see,
The writer, the author I aspire to be?
When you look at me what do you see,
Honesty, kindness, generosity?

Of course not, not at all, that’s not what you see,
Tattoos, a black husband, a piercing or three.
A stereotype is what you see,
Of the person who you think is me!

Sally-Anne Stephenson

Heartwarming!

So Gentle!

Blissfully happy!

Loving and nurturing!


Kind!

???????????

What do you say to your child when he asks you when he’ll be able to walk?

How do you explain to an eleven year old wheelchair user that he won’t ever be able to play football with his friends or for his favourite club?

Then what do you say when he asks what’s the point in doing all the exercises then?

We’ve just been doing Deion’s physiotherapy exercises, about half an hour into the stretches; Deion asked me when they were going to start working.

I told him they were already working, its these exercises that make it easy for him to sit up straight, to take his weight a little when we transfer him from his wheelchair or equipment, it’s the exercises that make him comfortable, not tight, pain free. I told him the exercises are building his muscles to make him strong, strong so he could stand up and use a walking frame.

Of course, Deion wasn’t impressed; he wanted to know when he was going to be walking by himself.

Certainly a heartbreaking moment.


I wondered for a moment if perhaps we’ve done Deion an injustice, we’ve been so busy telling him that his disability won’t stop him doing anything, we’ve been so busy telling him he can achieve anything he wants; I guess he thought that the exercises were working towards far more than just building enough strength to do standing transfers, to sit up straight and use his left arm a bit more.

I have been told by professionals in the past, that I raise Deion’s hopes too high, but surely, to do any less would be encouraging him to settle.

Of course Deion works hard, and we push him as hard as he allows, he has a special walking frame which he can propel himself around in, he can pull himself to stand for a few seconds holding onto a bar, and if you are holding him up just right, he can take a few shaky steps.

I guess you never know if you’re doing the right thing, its not like there’s a manual that comes with being a parent!


But we teach the kids to be the best they can, and whatever that is, is fine, as long as they don’t sell themselves short. Surely aiming high is the way to go?

So I’ve told Deion that he has to work towards what he wants, if he gets a little closer, a little stronger each day, then who can tell where he will end up?

He is now contemplating what I said, and when he’s ready he’ll want to talk about it.

I’m not exactly sure what I’m going to say to Deion about all of this when he brings it up again, but I guess I’ll make it up as I go along as usual…because that’s life…and Deion will take it on board and make up his own mind anyway!


xxxxxx