Sally's World

We went looking for a new kitchen over the weekend, I walked into the showroom, knew what I wanted, knew what would work for me...simple.

I was shocked at the amount of input everyone else in the family had...especially as they all spend about...ooh...ZERO percent of their time in the kitchen!!!

Even Deion decided he didn't like my cabinet choice, he prefered the black and orange ones (I kid you not!)Dave was critical over my double oven choice, ridiculous, seeing as he would know how to turn the old one on if I asked him.

Do I really need a dishwasher? "NO," I said, "but everyone else will have to chip in with the washing up."

Silence.

okay, it now appears dishwasher is at the top of the list.

It was ridiculous, a 30 minute job turned into two hours of everyone else deciding what I should have to cook with.

Jordan and Robyn do like to chip in with the cooking, they haven't got to the clearing up after themselves bit yet, so invariably when they emerge with a masterpiece, the kitchen looks like a tornado has passed through, but they are trying.

So in the end we left with nothing, I'm going to go back all by myself, I shall chose what I want.

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.

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!

The sad loss of David Cameron’s six year old son Ivan has been all over the news and papers since he passed away on Wednesday morning. When I hear something like this I just feel sick, panicky almost. And I guess it’s just because I know what the family has to go through.

Before Aaron passed away, I was always saddened on hearing of someone passing, especially when that person was a child, but I know I didn’t feel it as deeply as I do now.

When Aaron passed away, we were touched, and even surprised by the amount of support we had, and support from strangers too, friends of friends, or people we hardly knew. So many people who had also experienced losing a child were offering their support. It moved us beyond words.

It all makes sense to me now. As a parent who has lost a child, I feel the pain of parents like David and Samantha Cameron. I want to reach out and say something to ease their pain, which is even more bizarre in a way, because, I know for a fact that nothing anyone says at the moment will ease that pain.

I guess all I know is, that although losing a child is the hardest thing they will ever have to go through in their entire lives, it is something they can survive, even though it may not seem like it now. And no, time will not heal, but it will bring them acceptance. They have to accept that their lives will be different, and that their time with their son no less precious just because he is not physically with them now.

I know their will be some feelings of guilt at whether they did enough, gave their son a happy enough life, some anger at the loss, anger that everything else, and everyone else seems to be carrying on a normal life, and certainly some numbness at times, because I think that’s how the body copes, you can’t possibly feel it all at once, because your heart and mind could never take it.

They are now also realising that their loss is a very physical pain, that is something I never knew before, I never knew that the pain in your heart is real, tangible, I always imagined that it was an emotional pain only.

What they will learn with time though, is that their lives have to carry on and grow around the memory of their son. For a long time I felt that in letting go of all the grief and the anger, I was somehow letting go of Aaron. But I know that would be making him crazy as he watched me struggle with that. So all the love and memory, all the special stuff, is all there, life has just grown around it making it less of a focus for us all. I will miss Aaron every minute of every day, I will ache for him at times, I will cry and rant at times too. But I would never go back and change a minute; I can never regret the amazing adventure of our lives together. David, Samantha and their children too will realise this in time, and I hope they get there soon. But grief is not something you can time, or put conditions on, there are no rules, no rights and wrongs.

I have no regrets, and I'm sure Aaron is as proud of us as we are of him. I hope the Camerons' feel the same.

Sleep tight little angel, god bless!

Goldilocks and The Three Bears was one fo my favourite fairy tales as a child.

Here is what I believe to be a far more accurate account of the events of that
fateful morning...

Baby bear goes downstairs, sits in his small chair at the table. He looks into his small bowl. It is empty. 'Who's been eating my porridge?' he squeaks.

Daddy Bear arrives at the big table and sits in his big chair. He looks into his big bowl and it is also empty. 'Who's been eating my porridge?!?' he roars.

Mummy Bear puts her head through the serving hatch from the kitchen and yells, 'For God's sake, how many times do I have to go through this with you idiots?
It was Mummy Bear who got up first.
It was Mummy Bear who woke everyone in the house.
It was Mummy Bear who made the coffee.
It was Mummy Bear who unloaded the dishwasher from last night and put everything away.
It was Mummy Bear who swept the floor in the kitchen.
It was Mummy Bear who went out in the cold early morning air to fetch The newspaper and croissants.
It was Mummy Bear who set the damn table.
It was Mummy Bear who walked the bloody dog, cleaned the cat's litter tray, gave them their food, and refilled their water.''
And now that you've decided to drag your sorry bear-asses downstairs and grace Mummy Bear with your grumpy presence, listen carefully, because I'm only
going to say this once....
'I HAVEN'T MADE THE F***ING PORRIDGE YET!!!'

It would certainly be more like this in my house!!!

We all have them don’t we, people in our lives, that no matter how busy you are, no matter what you have going on, they’ll ask for a favour. They ask how you are first, not really wanted to know of course. So we shoot ourselves in the foot by saying “fine.” when we’re anything but…and they take it as an invitation to say, “can you just …….(fill in the blank) for me, I just don’t have the time/know how/energy?”

And I mean to say “NO!” I honestly do, I mean to say; “look at me, I’ve had two hours sleep, my sweater’s on backwards, I haven’t brushed my hair, I barely know what day it is, do it yourself!”
But somehow; “sure, no problem, leave it with me,” flies out of my mouth instead.

I’m just one of those people who can’t stand to see someone go without if I can do something about it.

I’m getting better, I’m focussing my energy more on people who really need my help, it doesn’t stop people asking, I’m just trying to be better at saying “NO!”

Exhausted!

Sal xxxx

Well it looks like another busy week for me, the post has just arrived and in it are no less than seven appointments for Deion, I’ll have to rearrange at least one of them, unless I can figure out a way of being in two places at once!!! Haven’t managed that yet!

Here is an interesting article that was posted on the Telegraph web-site last November By Julie Henry, the education correspondent for the Sunday telegraph.

Special needs children failed by the system

I have just received a call from the worried grandfather of an autistic boy whose parents are being forced down the route of a special educational needs tribunal in a bid to secure the right school for him.
The boy had, up until now, received one-to-one support in his mainstream school. He is at the high achieving end of the autism spectrum and seems to have a special aptitude for maths.
Because of cut backs however, that support has been withdrawn, making it very difficult for him to cope in a run-of-the-mill school. Yet the special school that the council is proposing for him is totally unsuitable. Children there have a range of profound needs and what they are taught has only a passing resemblance to the national curriculum.
The boy's parents are convinced their child would go backwards in such a school and they are probably right. The grandfather is paying for legal representation, which is increasingly vital if families are to have any chance of success at a special needs tribunal.
It is a heartbreaking case, highlighting many of the frustrations felt by thousands of parents with special needs children.
Inclusion in mainstream schools, while a laudable aim, has been seriously underfunded, leaving many children feeling lost and isolated. Special needs schools have been closed, with the loss of thousands of places. In some areas special needs provision has been merged, bringing together children with a wide range of learning difficulties and disabilities, making it more difficult for teachers to deliver lessons that meet children's needs.
The human cost is evident. Parents worried sick by the prospect of a child regressing after so much hard-won progress has been made and a grandfather spending his life savings trying to ensure that does not happen.

To see the article itself and a response it received from a reader, click on

http://blogs.telegraph.co.uk/julie_henry/blog/2008/11/26/special_needs_children_failed_by_the_system

This is a direct example of how the system is getting it so very wrong…again!

No-one is considering the child or their families when they make the decisions with regards to special schools.

This story is only too familiar to me.

My son Deion is 11, and he has done very well in a mainstream primary school. Mostly due to the fact that is an excellent school and the teachers and staff go that extra mile for all their pupils. Deion is a child with very obvious difficulties. He is a wheelchair user, triplegic, has little trunk control and is incontinent. Yet it was still a struggle to get him the (very obvious) support he needed.

Now we are going through the secondary transfer process and are embroiled in an even bigger fight.

Inclusion may be the 'catch word' for education at the moment, but unfortunately the concept has not filtered down to the people designing our ‘mainstream, special needs inclusive schools.’ The toilets are inadequate, the classroom sizes, though big enough have not allowed the right access, the lifts are small and the corridors too narrow in most cases.

It is going to involve a lot of work to make it possible for children like Deion to attend.

And as the response above states, it is far too much to expect a teacher to take on the role of special needs teacher on top of already teaching their oversized classes. But at the same time, this should not be the parents concern, parents cannot be expected to allow the system to just ‘dump’ their kids in a ‘special’ school’ simply because they have a child with a 'special needs' label.

And that’s one of the things that is failing. The term ‘special needs’ to someone in the education department just means ‘disability’ it seems to be a blanket term for everything ranging from mild autism to severe cerebral palsy, and everything in between. They just do not seem interested in a child’s particular needs. To the family involved, special needs is a very personal term. Personal to the individual child.

Stop trying to lump all our children together as if one term fits all…we’re sick of it!

And sadly, what it all boils down to is money, the education department want to find the cheapest way possible to school our kids, but still be seen to be doing the right thing.

Well they can’t have it both ways!

What is needed is more money; but first, it’s the attitude that needs to change. Then the basics need to be taken care of with regards to suitable access and toileting facilities. Then there need to be key workers, one to one care enabling children with special needs to go into mainstream schools with the proper support.

And although it is true that there are parents who will manipulate the system, for reasons only they know, maybe it is for significance or to lessen their own responsibilities. But what I do know is, children and families who really need the support cannot be punished because of it.

Yet, all that appears to be happening, is education making cuts where the money is most desperately needed.

Regardless of disability or special needs, our children are this country’s future. Education needs to top trying to make out that disability or special needs are a burden and start looking at individual children, realise that they are productive and valuable members of society and give them all the education they have a right to.

Yes, I understand that the money has to come from somewhere, but investment in the future, is surely the way to go. And that means investing in our children…all of them.

And as much as I don’t wish to tell the government to do their job (well…!!!) perhaps the £10 million pounds recently allocated to training SENCO’S (special educational needs co-coordinators) to be teachers as this article from the guardian states, could be put to better use within the system!

http://www.guardian.co.uk/education/2009/jan/02/specialeducationneeds-schools

I'm just one parent, but I know I am not alone in the way I think.

Sal xxx

Well Trojan and I had our first salsa class since Christmas last night, and as usual it was brilliant.

At first I was a little worried that I might have forgotten some of the steps, but was thrilled when it all came back and we flew through the class with grace and finesse…well, sort of!!! I stepped on no-ones toes, I head butted no-one. Bloody hell, I must be getting good.

We did so well, that after our own class and our cool down session, Trojan and I though we’d take a leap into the advanced class…we were feeling good, we thought we could handle it. So we lined up for the warm up, our heads held high, proud that were were daring enough to try. It started with a few of the steps we already knew…cool! Then suddenly the teacher spun around, walked backwards across the floor with some complicated footwork, did a couple of complicates steps, a spinny thing (that’s a technical term) and somehow ended up back in the starting position.

Trojan and I stared at her dumbfounded for a minute, looked at each other in horror and then Trojan said “I don’t think we’re ready for this class,”…
“Maybe next week” I said.
To which Trojan nodded…
Of course we were both thinking ‘yeah right, maybe next millennium!’

We headed straight for the bar (this we’ve mastered the art of…no problem) and I don’t think anyone noticed us sneaking away from the group…although there were a group of people near by, and one of them had obviously just told a really funny joke judging by the way they were falling about laughing…

No, I’m joking, its not the sort of place where people judge you, or laugh if you go wrong, they are very kind, and very patient.

We are going out to a family dinner on Friday, and have sort of dared each other to do a few salsa moves!!! Oh well, lets just hoped we’re not disowned by the end of the night!!!

What I did do today was watch our salsa video blog and realise we have already come a long way from this, but if you fancy a giggle, then feel free to watch!

Maybe we should take a camera on Friday and do a before and after shoot!!!

Take care

Sal & Trojanxxx

Tony Robbins

Something Dave and I did while we were away was to go to an Anthony Robbins seminar. It was brilliant, insightful and exhausting. And it allowed me to let go of some of the guilt I feel over losing Aaron, even though I didn’t know I was carrying it…if that makes any sense.

We went to our first Anthony Robbins seminar a few months after Aaron passed away. I was still at that angry stage of loss and grief when I wanted to punch out complete strangers for looking even slightly happy…because how could anyone be happy, did they not realise that Aaron was gone??? Going to the seminar, helped me let go of some of that anger, and I will be eternally grateful for that. Of course at the time, I didn’t realise there was too much more to it that anger, as that was all encompassing at the time!

I know that motivational speakers, life coaches e.t.c. are not everyone cup of tea, and I respect that. I also believe that whatever will help someone, give someone some peace of mind, some motivation, is a good thing. If I decided that to help with the grief, I wanted to spray myself pink and run around the block naked, there are those that would talk me out of it, laugh even. And those who would ask me what shade of pink I wanted and help me get an even coat as not to embarrass myself with a streaky paint job! I of course would be in the later category for any of my friends.

So while we were talking about life, what drives us, what makes us happy, sad e.t.c. I realised that I had some feelings of guilt about losing Aaron. I guess as a mum I felt that my main job was to keep my children safe. So I also felt like I’d failed because I didn’t do that. Of course any intelligent person knows that at some point in our lives, we will lose someone we love…but intelligence doesn’t come into the grieving process all that much!

I know, I know… using logic, I understand that things were totally out of my control, Aarons condition was nothing I could have done anything about, and I kept on telling myself I did all I could, and I know in my heart that I did, we all did, we kept Aaron fighting as long as he could, I know this in my mind…again, logic, intelligence…of no use to us here!!!

The reality is, is that Aaron still passed away and deep down, I think I should have been able to do something about that.

I know that anyone I know and love, anyone who knows Aaron will be reading this and may be a little surprised. And for that reason, I considered what I was going to write. But the best thing I can do, the most honest thing, the thing that may be able to help anyone else coping with loss, is to just tell it as it is, to put my feeling out there and let you make of them what you will.

For a long time I felt like I had failed Aaron, Dave, the kids in some way by not keeping Aaron safe..here, and in coping with that I began to control everything else in my life, Dave and the kids mainly, but also the housework, the amount of work I did, the writing, the company, the charity. I had to over achieve in every way to satisfy to myself that I wasn’t a failure. I failed in one thing, the most important thing, so I could allow myself another failure, no matter how small. It was a mixture of fear of losing everyone and the need to be in charge, to make myself indispensible, to make sure I was the most important and significant thing…that was my own way of insuring I kept everyone close and safe.

The insomnia, the two hours a night, were in some way a self punishment for me. It was me feeling like I didn’t deserve to get lots of lovely sleep. After all, if I failed Aaron, why would I be sleeping soundly at night? It is really amazing what our subconscious mind talks our body into isn’t it. That’s another reason I never spent time on myself, never allowed myself to relax and just do something for me.

Of course in doing this, not only was it hard to keep up for everyone around me, it wasn’t helping. In fact in acting so possessively, being so shattered, I was shutting off a part of myself to everyone. In my quest not to feel the loss, not to ever have to feel the loss again, I was shutting of the fun, spontaneous part of me that makes me the ‘kick arse’ mum and wife/friend/sister/daughter that I am. (Modest…who me???)

Someone called Alex at the seminar (a grief councillor), gave me the best analogy, it helped me more than I can say and helped me get things into perspective.

I’m going to share it, and if it helps one person in some small way, it will be worth it.

Alex drew me three glass jars, all the same size…each jar depicting my life.
He drew a big red balloon in the first one, completely filling the jar. The red balloon depicted all that is Aaron, his love, his life, the grief…all mixed up together, as it inevitably is. My life as it is now!
In the second jar, he drew a smaller balloon, depicting time passing, the balloon getting smaller.
In the third jar a tiny balloon in the bottom of the jar.
This was exactly what I was afraid off. I had somehow got mixed up, that in feeling the pain and grief less acutely, I was letting all the good stuff go too, that everything about Aaron would diminish.
Then Alex drew me three red balloons in a row, all the same size, all depicting Aaron and all that is Aaron.
Then he drew a jar so the first balloon filled it. My life as it is now!
The second jar was bigger, the third bigger still.
The jars were now depicting MY life and the life of all of us being bigger and richer and more.
Our love and feelings for Aaron and the loss didn’t have to diminish; of course that’s why the balloons were all the same size. Our lives just had to grow around them.

This simple analogy allowed me to foresee a different and better future.

This seems over simple, but it does explain how I feel. I am so terrified that by letting go of the grief, I let go of it all. But I don’t need to, I need to understand that to feel the grief means that I must have loved and been loved fully and undeniably. We all need to know that Aaron and everything that goes with him, the love, the laughter, the adventures, and yes, the grief, stays, it always will, I don’t have to set myself goals of the pain easing, instead I need to embrace life, love, adventures and in doing that, the grief wont be so all consuming.

But I also don’t feel like I have to work to a timescale, live by a set of rules that tell me how to go on with life. Really I just need to let life go on around me, embrace it, and allow myself to feel whatever I need. Feeling grief is what makes us human, if we didn’t care, we didn’t love, we wouldn’t grieve. So I for one am glad I can grieve, because it is the measure of my love.

I have no idea if this makes sense to anyone, if it will help anyone. But it has helped me, Dave and the kids. I guess its how we associate with grief. I will miss Aaron every single day for the rest of my life, but, I will not allow that grief to diminish Aaron’s memory. Aaron would not want me to be miserable, to turn our lives into a military run exercise, rather than the adventure we used to treat it as.

So I learned a lot, whether I wanted to or not. I feel like I and move forward in a different way now, allowing to love and to be loved, allowing the children to grow and let out their own personalities. We are planning our next adventure, and I know Aaron would be very proud; in fact I can almost hearing laughing in my head now (but not in a hearing voices, need to be committed way, I hastily add).

I also have been sleeping six, even seven hours some nights…incredible. I’ll be taking the piss next and having a lay in! and Dave tells me off every time I moan about there really being less hours in the day “poor, poor you,” he whines back at me, “fancy getting some sleep, its terrible.” to which I kindly reply “naff off.” but he has a point.

Well, for anyone who ever has the chance, Anthony Robbins is an experience and a half. It’s not for everyone, but it certainly helped us. So if you want to know more, just ask, I’d be happy to point you in the right direction, even recommend some of his books. He doesn’t sell himself as some mystical guru. He’s just an ordinary guy who has seen a lot, learned a lot and has found some great ways of making people achieve their potential. We’ll be going back and taking as many people with us as we can.

Better go, it must be nap time!!!

Take care

Sal xxxx

I’m so proud!!! Deion went to bed tonight, but he didn’t just waste his time daydreaming about computer games and his Christmas presents. He used his time productively to do maths sums. He was practicing his times tables and his adding up. What a genius.

How proud/smug I was when he announced that he ‘was doing maths sums mum!’ as I said goodnight on my way past his room. No way could I moan at him about still being awake now!

“What a good boy,” I said

“Yep!” I’ve figured out that in my life I’ve had approximately nine thousand seven hundred and forty two poops!!!”

What????

I was speechless, unsure of what to say, I just said, “well done Deion, what good maths.”

He went on to tell me that he timed the number of times he goes with the days, weeks, years e.t.c. then continued to tell me that as I am always telling him he is above average, he added a couple extra…ingenious!

“Do you want me to work out how many times you’ve been mum?” he asked.

“No thanks,” I said weakly.

Well Robyn and Jordan heard, and were falling about laughing, and proceeded to help Deion work out how many times various family members have used the toilet.

Its all maths I guess, but sometimes that’s just too much information. Let’s just hope they don’t announce their results to their Grandma, that should be a fun announcement.

Take care

Sal xxx

Sorry, I know I said I’d be back the other day, but I’m having trouble getting in the right time zone. I’ve been getting a bit more sleep lately too as I went and got all chilled out, so now there really are less hours in the day. Now, I hope that doesn’t sound like I’m complaining, and as Dave and my brothers said when I complained after feeling groggy from my first night of five hours sleep, “that’s how you’re supposed to feel when you wake up you dozy cow…you’re not supposed to go from sleep to wonder woman in a tenth of a second.” Well that was news to me.

I’ve loaded a few photos for you, this is my family, and we had a brilliant Christmas. But I mean it is us...so not all ran smoothly, my brother insisted on frying the turkey, not something I heard of, but big in America, and after all the fuss I made, it almost burnt me to admit that it was delicious, non-greasy and best of all only took and hour and a quarter to fry and twenty three pound bird. I wanted to raid the kitchen and see what else we could fry, veggies, chocolate, the toaster…but they wouldn’t let me. Such spoil sports.

By the time the kids had finished opening presents it looked like we lived in a toy shop, and I have to say, kids toys are getting better and better. My nephews got the guitar hero for the wii and Dave was the one on his back on the floor, spinning around in circles like a demented rock star….his excuse was that ‘you have to show the kids how its done’ I guess my brother was just grateful he didn’t smash it into the TV or set it alight.


We ate too much, drank too much, fell off of skateboards and almost ran Dave over in the golf cart, but generally it was great. We were sorry to leave, even if my brothers breathed a huge sigh of relief at our departure.

But joking aside, it is hard having family so far away. It’s not so bad because we have e-mail, phone, facebook and of course blogging, but it’s not the same as being able to give the kids cuddles when we like. Its lovely to go and stay and have quality time together, and the kids just slip right back into it as if they’ve never been apart. Everyone just gets so big while we’re gone.


So we are looking forward to getting back out there getting some sunshine and seeing our old friend Mickey Mouse…

Take care

Sal, Dave, Aaron, Jordan, Robyn, Deion, Garry, Claire, Zoe, harry, Connor, Lilly, Danny, Kelly, Rhys, Lewis and Tyler xxxxxxxxxxx

Well, we’re home after a lovely holiday in Orlando and some lovely family times together over Christmas and the lead up to it. We did a lot of swimming, said ‘Hi’ to Mickey Mouse (he never seems to age!) and ate our body weight in ice cream regularly!

It was a little harsh landing to the solitary stingy one degree weather though. To think ten hours previously we were all sitting by the pool sipping cool drinks in the ninety degree heat!!! (non-alcoholic…of course!!!)

I’m almost over the jet lag, and almost back on British time (if I ever was on such a thing in the first place!). And now the kids have finally let me on one of the computers after catching up with their friends/downloading ring tones/synchronising i-pods.

I’m not going to go into to much detail now, I have lots of news, lots of photos and one of the best things is that I got some great insight into some of the reasons about how I hold onto the grief about Aaron and all that surrounds that.

So I’m off to get some sleep now, tomorrow I’ll start posting some photos and blogging. I would have done more while we were away, but everywhere we went there were problems with the computers, so after the first couple of attempts, I gave up and decided it was a sign, so now you’ll be sick of me again in no time!

Take care

Sal xxx

Well, we jet off early in the morning, so keeping with the holiday theme, the video blog this week is about where we have been that we love, and where we would go if we had the chance. Look out for Trojans little jibe about me being past clubbing!! Hmmm!! And he cheated…he picked two places…

I’ll be keeping a ‘travel blog,’ while we’re away, and I’ll try to get on once or twice a week to talk about what we’ve been up to. Deion’s been getting chest infections and colds quite a lot lately, so we are hoping a bit of sunshine will put an end to that, then I may even be able to talk Dave into moving somewhere hot permanently…wouldn’t that be good.

I’ll be back as soon as I’m over the jet lag!

Take care

Sally and Trojan xxx

As I have mentioned already. Aaron would have been seventeen on Friday 5th December. Needless to say this is a rather emotional week for me. So rather than try to skim over it, or stick a bright smile on my face and say everything is fine, as is often the tendency. I have written about it and been as honest as I can.

In that vein, Trojan and I got together yesterday and did our weekly video blog about loss, coping with loss and the importance of remembering those we love. We ran over time, and that is why Trojan split it into two videos rather that edit, it isn't the sort of subject you can cut short.

Everyone who knows Aaron has their own way of remembering him, their own way of wishing him a happy birthday. The same way as we all have a way of remembering those who have passed on.

I know some people find it too painful to remember, and that is fine, there are no right and wrongs, no rule books, and grieving is a completely personal thing.

For me, it is the memories that keep me going, all the good stuff is mixed up in there with the bad stuff, the good memories far outweigh the bad. So for me, remembering Aaron’s smile, and the love in his eyes, his hugs, his cheeky laugh, that’s what makes me carry on, that’s what pushes me on to leave a legacy for him with the t-shirts, the charity and the books.

He will be in the hearts and minds of those who knew him forever, but I am determined that for generations to come, Aaron will be passing on his special love and generous spirit.

He is mummy’s Angel xxxxxxxxxxxxx

As today is World Aids Day Trojan and I were talking about it and what it means to people all around the world. And not just Aids, all terminal illnesses, and how those illnesses affect the family, friends and the carers as well as the sufferer.

So this is a video blog to acknowledge that suffering and to remind people to do all they can. It is too easy to get caught up in our own lives and our own problems, and to be oblivious to the fact that there are people suffering, families grieving and suffering, and in some cases whole communities and countries suffering.

Take care, do all you can,

Sal and Trojan xxx

Trojan and I did our third live radio blog yesterday afternoon, we spoke for 45 minutes about the lack or respect and appreciation full time mums/carers get from family, society and the government on the whole. Obviously it’s a subject very close to my heart, and one I am very passionate about. So please click on the radio blog to the right and have a listen, and let us know what you think. You may agree or disagree, we want to know either way.

As promised in that radio blog, I have a small list of agencies/support groups who may be able to help you get what you need and you are entitled to.

http://www.familyfund.org.uk/ A charity aiming to support, advise and possibly help with funds for families with severely disabled children.

http://www.carerslewisham.org.uk/ A charity providing advice for people looking after ill or disabled friends and relatives. Directory of support groups and meetings.

http://www.carers.org/ For support advice, information

http://www.direct.gov.uk/ For information on being a carer

If you contact your local borough council, you can find out lots of information on the groups you have in your area. I know first hand how isolating it is at times to be a carer; there is help and support out there for you. Not as much as there should be, and not as widely publicised, but it is there.

Also don’t forget to look up wish foundations, they are a lifeline for families who have children with life threatening and terminal illnesses, we had a foundation help us and it made a huge difference to us as a family.

And of course, I’m here if you think I can help you with anything, or point you in the right direction.

Take care xxx

Just a quick reminder to say don’t forget to tune in to our live radio show 5.30pm tonight. We are going to be talking about the issues surrounding being a full time mum and carer. There are so many issues on this subject that effect how we feel about ourselves and what we do, and what we feel we contribute to society and the family unit. You can phone in and have your say, agree, disagree, whatever you want, as always, we love getting your views too.

We will ask why it is predominantly women who end up filling this role? Is this another outdated tradition, or is it the way it should be? We will explore how we end up where we do in general, is it by spoken agreement, it is just presumed, has it just ended up that way? Who is it that decided these things? Has maternal instinct got a lot to answer for? And even if we chose it, are we happy where we are, can caring alone be fulfilling? What message are we sending our children? How do we feel about the stereotypes society has about our role in general?

Big breath!

So we will explore as many of these issues and feelings as we can.

Please also log on later tonight or tomorrow and see what we managed to produce in the way of video blogs, we’ll try to stick with the same subjects to a certain degree, and if we have time (if Trojan has time I should say) we’ll record another video advertisement, the last one was very popular, maybe I’ll try to tip Trojan off his chair or something, because everyone seemed to love the blooper…I’ll see what I can do.

See you later

Sal & Trojan xxx