Charity Wish Foundations  

Friday, 22 January 2010


I know I have briefly touched on the subject or Wish foundations in past blogs. Something that many people don’t think about or realise, is just how important wish foundations are for families like ours.

I cannot begin to explain to you how hard it is to hear that your child has a terminal illness; I’d say it was like having your heart ripped out, but it’s actually much more painful than that. The world stops spinning, your heart stops beating and you stop breathing as your child’s future is suddenly ripped out from under you. Then you want to punch someone or something, then you deflate like a balloon and try not to let the awful news sink in.

One of the first things you do is think about all the things that you never got to do together, all the things you wanted your child to see and achieve, you think about all the things you wanted to enjoy together. You think about how your other children will miss out on growing up with their sibling and having those memories together.

So this is why wish foundations are more important than I can put into a few paragraphs here. They enable families to go with their child and do something that will make whatever time they have left together special. And not just the child, their siblings and parents also get to experience something wonderful together. That’s something you can’t put a value on.

When we all think of Aaron, one of the first things we think about is the look on his face that first time he saw a dolphin. We have many magical memories, the dolphins, Lapland, Disney, that is what keeps us going now, knowing that we don’t regret not doing it; because we did it…and my goodness did we do it!

We had help from a wish foundation when we were fundraising and it helped create the most precious memories for all of us. There are no words to express that gratitude to the wonderful people that helped.

This is one of the reasons we want to have our own foundation in Aaron’s name. To be able to give other families like ours a chance to have those wonderful memories. We want to be able to give other families hope, hope to keep fighting, hope that their first memories for their child won’t be the illness, the hospitals, the pain, hope that they will have something joyful and precious to hold on to and remember.

It’s not all me, it’s a joint effort with another family and lots of friends and family are going to be involved (through choice or by force!). We are building a web-site now, with the help of an incredible web wizard who is offering his expertise for free…thanks Mark! It’s coming together with lots of information about us, about the dolphins, and about our own experiences. We may still be in our infancy now, but you have to start somewhere. In time we hope to be able to help countless families.

We’ll have an on-line shop selling the t-shirts and baseball caps with Heaven’s Special Child’s extra special slogans. 100% of all profits from the charity shop goes towards helping families realise their dreams of dolphin swims.

So even if you don’t have a child with a life threatening illness, if by some miracle you don’t know a single child with a life threatening illness, you can still make a difference. There are so many wish foundations out there to help and support, go to any of the folowing we sites to show your support.
Dreams come True, http://www.dct.org.uk/
The Starlight Wish Foundation http://www.starlight.org.uk/ ,
Make a Wish foundation http://www.makeawish.org.uk/ and
The HCPT Trust http://www.hcptpilgrimagetrust.org.uk/ to name but a few who are close to our hearts. And it doesn’t even have to be anything big, but by doing what you can, you are making a difference in the lives of families who need that hope and your help.

We all get bogged down with life, we all think we have it hard sometimes, but it is important to not get so wrapped up in what’s going on around you that you can’t see how lucky you are compared to many families. Besides, look at it as an investment, because when you do something good, it makes you feel good, by supporting someone else, you are investing in your own self, because it’s good to do a good thing.


Take care, and do what you can

Sal xxx

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blogger gone mad...help!  

Monday, 18 January 2010

okay, I'm having some problems in blog world, first if I try to open someone elses blog, it opens it over and over again until I shut the computer down, it hasn't let me on my own blog for a few days, and when I got in just now, stuff has moved around in my posts, also there are dozens of 'anonymous' comments that are just lots of japanese writing, often loads on the same post.

I tried to go into the settings and make it so I can no longer accept anonymous comments....it wont let me...help! anyone else had this problem, or know what to do ?

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Insomnia  

Friday, 15 January 2010

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

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Multi tasking....  

Friday, 8 January 2010

Who says men can't do two things at once, they can talk and piss you off at the same time!

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three minutes and counting  

Wednesday, 6 January 2010

I've managed to jump on the computer for a few minutes...since we've moved the only PC is the one in Dave's office, so I never get on it...my new years resolution (or one of them) is to get my own one sorted and back to blogging.

So i thought a small update....no-one was ill over Xmas, a record for my children, we all ate too much, drank too much and spent too much...the usual...

We are snowed in though, of course they are not complaining.

Work has been mad, I keep getting phone calls at 'stupid o'clock' to go out and see kids who are not deterred from crime even by the minus temperatures...fools. Although the custody sergeants are laughing at me, because when they get bailed/charged and get ready to leave, i keep forgetting to leave my mummy persona at home and tell said kids to stay inside where is warm and ask them where their scarf and gloves are...

The new house is great, of course everything is 'nearly finished' but we'll get there. But if i never see another paint brush, it will be too soon lol!

Deion has a ton of appointments this month, always the way after the Xmas break. I'll let you know how they go. we had a chuckle though as when we went to the wheelchair clinic, they said his back tyres were below the limit and they changed them. Now we keep teasing him about getting pulled over for bald tyres.

Deion will be 12 next week...how did THAT happen...my baby, but its impossible to know what to get right after Xmas.

It was my Mums birthday new years day (I know!!!) we all had a lovely day, we like Mum to know she is loved and treasured.

uh oh, gotta go, Dave's kicking me off the computer already...

Happy new year to you all

Sal xxxxxxxxxx

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One word...me????  

Tuesday, 29 December 2009

Thank you so much Decadent housewife, its an honour...



In accepting this bloggy award I had to answer a list of questions with one word only.

Here Goes:

1. Where is your cell phone? handbag.

2. Your hair? uurgghhh.

3. Your mother? love.

4. Your father? Warm.

5. Your favourite food? chocolate.

6. Your dream last night? scary.

7. Your favourite drink? cream-soda.

8. Your dream/goal? Happiness.

9. What room are you in? office.

10. Your hobby? Salsa.

11. Your fear? Loneliness.

12. Where do you want to be in 6 years? Beach.

13. Where were you last night? Working.

14. Something that you aren't? Thin.

15. Muffins? yum.

16. Wish list item? chocolate.

17. Where did you grow up? Kent.

18. Last thing you did? Ate.

19. What are you wearing? Pyjamas.

20. Your TV? Big.

21. Your pets? Cats.

22. Friends? Lifelines.

23. Your life? Hectic.

24. Your mood? Contemplative.

25. Missing someone? Aaron.

26. Vehicle? Blah.

27. Something you're not wearing? A thong.

28. Your favourite store? TK Max.

29. Your favourite colour? Red.

30. When was the last time you laughed? Today.

31. Last time you cried? Today.

32. Your best friend? Me.

33. One place that I go to over and over? Supermarket.

34. One person who emails me regularly? Wendy.

35. Favourite place to eat? Mums.

Okay, that was fun...so I can now pass this along to six more bloggers I regularly visit.

Gloria's Spanish View
Trojan's Corner Wishes You A
Is It Just Me?
Beauty Be Good
Grandma's Page
http://jjinla.blogspot.com/

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The Dolphin  

Sunday, 27 December 2009


I've honestly never heard the experience of swimming with dolphins put so eloquently and accurately...love this, made me feel peaceful just reading it.


The Dolphin
by Kate Carr


Have you swum with a friendly dolphin
When the day dawns clear and bright,
And seen his welcoming leap of joy,
As you leave the harbour and pass the buoy?
That's pure delight.
Have you swum with a friendly dolphin,
Dozing under the noonday sun,
and stroked his belly so smooth and strong,
Or felt yourself being towed along
In elfin fun?
Have you swum with a friendly dolphin
In the sunset's fiery glow,
When every wavelet is tinged with gold,
And his silhouette, so huge and bold,
Is a graceful bow?
Have you swum with a friendly dolphin
As the silvery moon rides high,
And ocean and earth are bathed in white,
And the dolphin's aglow with a phosphorous light,
As he glides by?
Have you swum with a friendly dolphin
In the North Sea's rolling swell?
Or a choppy squall, as a cloud passed by,
And a leaden greyness darkened the sky,
And raindrops fell?
Have you swum with a friendly dolphin
And a boatload of friends of a kind?
The harmony linking you all, and him,
As you tumble out of the boat for a swim -
It blows your mind.
Have you swum with a friendly dolphin
And known your panic allayed?
Be it ladders or snorkels - whatever your fear -
Perhaps the oceans depth; once the dolphin's near
You're not afraid.
Yes, I've swum with a friendly dolphin
In the moonlight, the sun and the rain;
And the varying moods of the ocean swell
And my life will never - I know full well -
Be the same again.

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Merry Christmas Everyone  

Thursday, 24 December 2009


Hi Everyone, I hope you all have a wonderful Christmas, I know I have been absent lately, I've been going through a bit of a hard time, obviously missing Aaron at this time of year is a given, but there are a few other things going on that I'm trying to figure out.

I'm hoping to make the new year a bit of a fresh start...emotionally certainly.

I miss my blogging, but thank you all for being there for me still.

Have a lovely Christmas,

Sal xxxxxxxxxx

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Just for today xxxx and just because this made me smile xxx  

Tuesday, 22 December 2009


Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.

Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.

Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles..

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys..

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just for this evening, I will let you splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss my favourite TV shows.

Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.

I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

And when I kiss you goodnight I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing, except one more day...

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I wasn't speeding mum...honest.  

Monday, 14 December 2009


We all hate getting the dreaded phone call from school saying one of the kids has hurt themselves dont we.

I had to rush down to Deions school today as he had hurt his foot....

He swore to me that he was not speeding as he drove down the school corridoor and crashed through the fire doors...and I'd like to believe him, but the three hours in A & E and the x-ray showing a broken toe tells a whole different story!

Luckily, Deion is fine and resting his foot, me...I aged another ten years in the ten minutes it took me to get to him...and I really don't need that now I am...dare I say it...in my forties!!!

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The big four OH!!!  

Friday, 11 December 2009


How did it happen, i don't feel any different to when i was in my teens, i am the same...well, until i look in the mirror and think 'bloody Hell who's that old hag looking back at me !!!'

Oh well, they say life begins at forty, luckily it didn't end for one person in my house who suggested i was now middle aged.

"I AM NOT MIDDLE AGED!" I gently bellowed.
"sorry, but forty is middle aged" said the perpetrator
"I guess it depends on how long you intend to live" I said "say it again and your middle age would have been twenty one years ago!"

Whats wrong with people?????


well, life/the house/work, is totally, insanely hectic, but i have insisted on a night off, I might even get to leave the house for recreational purposes...you never know xxxx

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Happy Birthday Aaron.  

Saturday, 5 December 2009

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!


I thought it would be fitting to share the opening passage in his book with you.

The day I met Aaron!

It’s 3.17 am on Thursday the 5th December 1991 In Greenwich District hospital, London. After Twenty three and a half hours of labour, lots of kicking and screaming (me, not Aaron) the midwife finally bundled a tiny baby on my chest and I felt a rush of love like I never knew existed, fireworks went off in my chest, I’d just discovered the meaning of life. My son was here!

I knew something wasn’t right straight away, Aaron was very grey and he hadn’t cried yet, just as soon as I’d got my hands on him it seemed, the nurses whisked him back off me. There were people everywhere, doctors and nurses coming in and out of the room, lots of shouting, alarms going off. Not to mention the man at the end of the bed giving me so many stitches that I thought he was knitting a jumper. I thought he’d at least emerge with a pair of booties for the baby...nothing.

This isn’t what was supposed to be happening, we should all be crying with joy now, going all googly eyed over the top of our new babies head, meeting our new baby boy and counting his fingers and toes. Not hearing doctors saying that they couldn’t get him breathing, and asking each other how long he’d been down.

We waited for the longest seventeen minutes of our lives, Dave looked so scared, and I think I held my breath for the whole time, then; at last we heard a cry, it was the determined cry of the fighter my baby was about to have to become; and I just knew in my heart that everything was going to be o.k.

SCBU Special Care Baby Unit

The next couple of days were a blur of Special Care, wires, tubes and alarms. We were young, first time parents and completely bewildered by all the equipment, bleeps, and nurses. There were blood tests and brain scans and we couldn’t do a single thing. We used to sit there holding Aaron’s hands through the incubator doors, telling him how much we loved him, telling him how special he was, and willing him to be strong. He wasn’t a premature baby, like all the tiny ones in the other incubators, he was 9lb 1oz, he looked so healthy and chubby, so why was he here? What was going on?

Aaron had drips going into both his little arms, a tube going down his nose, a tube coming from his umbilical cord; he had a plastic box over his head with oxygen pumping into it, there were pads on his chest and probes of some sort on his finger and his toe. I had never even seen a baby in an incubator before, except on television. I didn’t really even know what all the wires and monitors were for, I just new my little boy was in there, in this plastic box, having things done to him that must have been hurting him. I was his Mum, he was mine, but I was powerless to stop it all. He must have been desperate for a cuddle, I know I was.

The doctors came round four or five times a day, whispering amongst themselves about our baby and the treatment he needed, us in our naivety not really realising we had the right to ask them exactly what they were saying, what they were going to do to make our baby well. Then they’d turn to us and tell us that he’d had a rough start and they would wait for him to improve, then they would all scuttle off again, move on to the next incubator, whisper about the next baby. We just thought that’s how it was.

My First Cuddle

I first held Aaron when he was two days old. A nurse had to take him out of the incubator and pass him to me, and we had to be careful of all the tubes and wires attached to him, I couldn’t quite believe that someone else had held my baby before I had, but as soon as he was in my arms, it didn’t matter. That was the most intense moment of my life, I fell in love with Aaron before he was even born, but this was the moment he tried to open his eyes and look at me, I made him a promise then and there that I would love him forever and keep him safe.

Before long I understood what all the monitors were for, the nurses were so lovely and explained everything as they were doing it. After the first couple of days, I was changing Aaron’s nappy and washing him, brushing his hair, none of it an easy task through the two small incubator doors! I got to cuddle him two or three times a day, we bonded just like any other mother and her first baby. It wasn’t quite how I imagined it, but things never always are.


Happy Birthday Aaron xxxxxx

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its getting to that time of year  

Friday, 4 December 2009


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.

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we may be upside down, but we're in!  

Tuesday, 1 December 2009

i have not given up my beloved blogging, i promise..but we are off line until British telecom pull their fingers out from their butts and get us on line, we are climbing the walls and i feel very cut off, but the good news is the house is great...or it will be when i clear enough boxes to be able to actually see it...

back v. soon...

hope you are all well, i will catch up with all your blogs as soon as i can xxxxx

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from mad to worse!  

Sunday, 15 November 2009


As you know, we have been waiting and chasing some of Deions hospital results for a while now. I am continually told that 'when there is something to tell, I shall be the first to know'...apparently not...

I rang up today to find out the results of a test Deion had in May...yes, do not adjust your screens, that was MAY! six whole months.

I demanded to speak to someone today, and with a sigh, they pulled Deions notes up on the computer...

"Oh," she said
"What???" I said, I went cold, broke out in a sweat and I think my heart stopped beating...
"Oh, well, we've had them back for a while, they were normal."

Of course, my relief that the result was normal meant I forgot to have a moan about someone actually neglecting to tell us this bit of information.

Wouldn't it be nice if just once, someone thought the parents had a right to know some vital piece of information about their child???

I guess I had better now phone up for the other four sets of results, they may be back too!!!!!

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me....discriminatory???  

Saturday, 14 November 2009

For the first time ever, I have been accused of discriminating...

Oh yes, the man who was trying to book our new phone line accused me of discriminating against 'able bodied people' when I explained to him that we could not be without our own number, and certainly not without a land line for a month due to Deion currently waiting for several hospital appointments, and the fact that we are waiting for about ten sets of result e.t.c

He told me I should not expect special treatment.

I did explain to him about the Disability discrimination Act and how companies have to make reasonable adjustments for those with disabilities, but to be honest, my heart wasn't in it, I'm so sick of it, all I wanted was to not be without a phone for any length of time so we don't miss an appointment and go back to the end of the queue. If it was just me, it wouldn't matter.

Of course, Mr sensitive on the other end sarcastically said 'I can't believe you don't have a mobile'

'I do arse wipe,' I said nicely, 'but that doesn't help much, when not all hospital departments won't actually ring them, they need a land line.'

Even after speaking to his manager, and her supervisor, I still don't know how quick it will be, I guess I need to spend the day phoning all the hospital departments, physios' e.t.c.and giving them a land line of someone, then, that person can get me on the mobile.....oh well...such is life, well, my life lol!

What I wonder is, if an elderly person needs a new phone line, a disabled person living alone....is there no priority service? Its a really bad system, I shall write a letter to head office when I get a minute.

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can you really let superstition run your life  

Thursday, 12 November 2009


I got a phone call today, offering Deion a cancellation appointment for tomorrow...of course, I was thrilled, it hardly ever happens that you get an appointment earlier than you expect.

The woman did double check that I didn't mind coming, and repeated the date 'Friday the thirteenth.'

"Ermm, no, no problem," I said a Little confused.

It turns out that the person who cancelled, did so because of the date and the other person who has been waiting longer than us, didn't want the appointment because of the date.

I don't know about you, but this seems a bit ridiculous to me, what do some people do, sit indoors wrapped in cotton wool that day.

My view is 'superstitions only have power if you believe in them'

I don't believe in them.

But, hey, I guess, for Deion's sake, I should be glad some people do!

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truisms 3  

Wednesday, 11 November 2009


"I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God's business."
Michael J. Fox

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looks familiar....  

Monday, 9 November 2009

The kids loved this, but all parents will love it for a different reason, this is too cute xxx

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Excuses I've heard from people wishing to avoid helping with packing!!!  

Sunday, 8 November 2009

But I didn't know what you wanted to keep. (Ermmm...ask me then)

I don't know what needs to go where. (See above)

You're so much quicker/better at it than me. (Only through necessity and forced practice at it)

I thought YOU'D like to organise it. (Derrr...)

But you are so good at organising. (Again...necessity)

You wrap things better than me/us. (Horse shit)

I know how you love that, I'd hate to break it. (Then don't)

You did it last time. (Not through choice)

I had no boxes. (Yes, like I have them hidden about my person on a daily basis)

Can't I do it later. (If only later ever arrived)

But I have loads of homework. (Okay, hard to argue with that)

I was going to go out with my friends. (Easy to argue with that)

And my all time favourite...

But I've been busy. (Of course, I sit on my arse drinking tea all day, so it gives me something to fill my empty days)

And also, how come every time I put something in the trash/recycle pile, one of you suddenly remembers its your favourite thing in the world...surely if it was, I would have seen you wear it/use it/play with it in the last decade???


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