Sally's World

Today is a painful day for me, 18 years ago today, I became a mum. Unfortunately Aaron isn't here for me to give a birthday hug, words can't express the ache I feel about that.

The last 3 years without Aaron have been the hardest I have ever had to face,I miss him more than I thought I was capable of. But I am still celebrating in his honour in my own quiet way.

I don't regret a minute, Aaron is responsible for the person I am today and for that, I am eternally grateful.

I know wherever he is, he'll be having cake!

It is now Dec, and like the last three Decembers I am getting nervous.

It used to be that December was my favourite month of all time, I became a mum on December the 5th, my birthday is the 11th and then of course there's Christmas.

We're big on Christmas, Aaron and I shared a love of all things tacky, if it jiggled, sang, glittered, we had to have it.

So now, I dread December, I don't get to celebrate Aarons birthday, not in the same way, so thinking about enjoying my own birthday a few days later falls flat, and Christmas is not the same without my Aaron.

I make sure we celebrate, and I do smile and love to see the kids faces light up, my fear is that I'm just going through the motions...or is that, in fact what I have to do until it comes naturally.

I just had to write and tell you about a recent experience.

A friend of mine has a distant aunt, they found each other on face book recently. It turns out that this aunt is a medium, a good one, she's been on TV, travelled all over the world doing this, some of her customers are famous people.

While she was talking to my friend, she told her that she could see a little boy, and told her to ask his mum to phone her...nothing else was said.

Well, I did phone, she arranged to phone me back another day at a quiet time...and I'm so glad she did. She knew things, that no-one else knew, she described my house, where I keep a box of Aaron's things, other mundane things he sees me doing. She named the names of his Friend's his favourite uncle, my grandparents...it was pretty special. She knew his favourite toys, teddy, food, games, it was amazing. There is not one thing she said that didn't mean something to me, even if it was confusing for her.

But most of all, the best thing, the thing that was indisputable was... when she described how she had had a mad day, was worn out, so she decided to go to leave me a message saying we would rearrange and go to bed instead...well, apparently she tried but Aaron wouldn't let her, she said he drove her crazy with his incessant 'ring my mum, ring my mum' she said it was like that scene out of Ghost when Patrick Swayze wants Whoopie Goldberg to phone Molly....

Of course, there isn't another person who ever existed as stubborn as Aaron, so this really made me smile. There are times when I feel Aaron, particular moments, and recently Dragon from mysterious creature told me how to contact aaron in dreams...this medium knew all about this and told me not to doubt it.

I feel calmer somehow, less worried that he is lost, or lonely, or not being looked after...and certainly there is no doubt he is with us all....

Big breath in, my heart feels joyful today!

I don't know who wrote this, but it was sent to me by a friend and I wanted to share it.

When I have no one to turn to
And I am feeling kind of low,
When there is no one to talk to
And nowhere I want to go,

I search deep within myself
It is the love inside my heart
That lets me know my Angels are there
Even though we are miles apart.

A smile then appears upon my face
And the sun begins to shine.
I hear a voice, so soft and sweet
Saying, 'Everything will be just fine'

It may seem that I am alone
But I am never by myself at all.
Whenever I need my Angels near
All I have to do is call.

An Angel's love is always true
On that you can depend.
They will always stand behind you
And will always be your friend.

Through darkest hours and brightest days
Our Angel's see us through
They smile when we are happy,
and will cry when we are blue..

Thanks for being my Angel my friend
I will be there for you until the end.

This is a song that always makes me think of Aaron, not just because R.Kelly was his favourite singer, but because the words (especially the chorus) are lovely.....and apt...

"I wish that I could hold you now
I wish that I could touch you now
I wish that I could talk to you
Be with you somehow
I know you're in a better place
Even though I can't see your face
I know you're smiling down on me
Saying everything's okay


And if i make it out this life
I'll see you again someday
I wish, I wish, I wish
I wish, I wish, I wish"

This is one of my all time favourite pictures of Aaron, it shows his cheeky smile off just right, this was my favourite outfit for him at the time. We booked him in for proper photos as a celebration, as he had just learnt to hold his head up.

I love to paint, but I never used to have time, I find that drawing and painting calms me, and recreating Aaron's smiles makes me smile too. so i tried to recreate this one onto canvas for Dave...he loves it and it hangs above his desk. He says he can't look at it without smiling...as he can see how much love has gone into this painting.


Just wanted to share this one with you all!

Many people are e-mailing and asking me about Aarons medical conditions. Especially my newer followers. I have tried to be informative here about the conditions themselves.

What is Smith-Magenis syndrome? (Aaron was born with this.)

Smith-Magenis syndrome is a developmental disorder that affects many parts of the body. The major features are mental retardation, distinctive facial features, sleep disturbances, and behavioural problems.

Disrupted sleep patterns are characteristic of Smith-Magenis syndrome, typically beginning early in life. Affected people have trouble falling asleep and awaken several times each night.

People with Smith-Magenis syndrome have endearing, engaging personalities, but also have behavioural problems. These include frequent temper tantrums and outbursts, aggression, anxiety, impulsiveness, and difficulty paying attention. Self-injury, including biting, hitting, head banging, and skin picking, is very common. Repetitive self-hugging is a behavioural trait that may be unique to Smith-Magenis syndrome.

Other signs and symptoms of Smith-Magenis syndrome include short stature, abnormal curvature of the spine (scoliosis), reduced sensitivity to pain and temperature, and a hoarse voice. Some people with this disorder have ear abnormalities that lead to hearing loss. Affected individuals may have eye abnormalities that cause nearsightedness (myopia) and other problems with vision. Heart and kidney defects also have been reported in people with Smith-Magenis syndrome, though they are less common.

To read more go to...
http://www.medic8.com/genetics/smith-magenis-syndrome.htm

What is Mitochondrial Myopathy? (Aaron was diagnosed with this when he was seven.)

Mitochondrial myopathies have many different faces. There are dozens of varieties of mitochondrial diseases, with a complex array of symptoms. Some symptoms are mild, while others are life-threatening. The mitochondrail cells are what give our muscles energy, when they don't work, the body over produces lactic acid, which along with the lack of energy, casues the muscles wither and die.

Aaron's strand of the disease caused muscle weakness, muscle cramping, fatigue, lack of endurance and poor balance, a wheel chair and then progressed so he couldn't swallow, chew and eventually breathing became hard and he was oxygen dependent. Each case is unique.

To read more go to....
http://www.mda.org/Publications/mitochondrial_myopathies.html

To everyone who asked to read a copy of Aaron’s book…thank you. xxx.

I put them in the post on Monday. For those people in the US, Canada and India, you may not be aware of the amazing thing we have called Royal Mail…it would probably be quicker to strap the book onto the back of a tortoise and let him make his way to you, but, as I had no tortoise to hand, I left your books safely in the hands of the Royal Mail system.

Of course, to all the British people who are waiting for a copy, they are well aware of the system and will not be expecting their books until the year 2011 anyway….

I’m kidding!

Actually, UK deliveries will be fairly quick, but the international deliveries may take up to 2 weeks.

But thank you so much for reading, I hope you love the book and enjoy getting to know Aaron, and remember, any aggressive behaviour on my part was only due to extreme stress in the face of professionals getting in my way!!! So please don’t judge me.

Take care

Sally & Aaron xxx

After losing my son Aaron I guess I had a need for answers, some sort of affirmation that it didn’t all end with our last breath. But even before that, I have always had a great interest in this type of information and have read dozens of books on the subjects of life after death and after death contact. They’ve ranged from feel good to scientific to wacky, with some truly imaginative theories offered for various experiences.

‘Love beyond life’ is a thoughtful piece of research for anyone wishing to explain a specific experience or just out of curiosity. I like the organisation of the work and the handling of the material. This book presents descriptions of the many experiences that people can have after the passing of a loved one. If you've lost a loved one and are wondering if that "weird" thing that happened to you means you've also lost your mind, you will be comforted to find that you are not only sane, but have lots of company in experiencing the Love Beyond Life of loved ones who have died. If you have not lost a loved one but are searching for answers; this book is also for you. It will make you examine what you already believe and explore new areas of thought.

Definitely worth a read.

I definitely got some piece of mind, I read ‘The Day I Died’ before this, and felt that there was some undeniable and beautiful experiences in that, but this book really depicted that feeling of love living beyond the physical.

Take care

sal xxxx

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

A couple of people asked me just how accurate the tattoo of Aaron is.

So I thought I'd let you see for yourself.

Here's the original cheeky grin!

What a star.

xxxxxxxxxxx

Hi everyone, Happy New Year. We hope you all had a great Christmas and the hangovers are all totally gone!

I apologise for my absence in all the blogs, we were away visiting family and everywhere we went there was some sort of computer problem, so after losing about twenty blogs…I sort of left it alone. It was lovely to get away, but I did miss the blogging, its become such a great way of getting my thoughts down and off my chest, and also getting some feedback and support for me too.

I went over Trojan's last night and we did our first three (yep, we got carried away after not doing one for so long) video blogs of 2009. Firstly there was a Happy New Year Message that we intended to talk about our hopes and aspirations for 2009, but sort of veered off into talking about new years resolutions and Trojan hinting at something very rude…my lips are sealed on the matter (unless the price is right!!)



We also spoke about my Anthony Robbins experience, as I was lucky enough to go to one of his seminars while we were away, you can find out more, and how helpful it is by watching the blog and reading the written blog too. Of course that was going to be an interview style thing, but it turns out I was still pretty fired up about it and all Trojan could do was step aside and let me rant (makes a change then!)



Thirdly we spoke about different messages we have received and how people who have passed let us know they are still about and watching over us. We chose this subject because a friend recently visited a medium and got a message from a very stubborn Aaron!!! Nice to know he hasn't changed!!!



So we hope you enjoy them, and again thank you for your support, your e-mails and comments. please, keep sending them.

Have a great week,

Sal and Trojan xxxx

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