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,
The Starlight Wish Foundation ,
Make a Wish foundation and
The HCPT Trust 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!  

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 wont let! anyone else had this problem, or know what to do ?

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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 new years resolution (or one of them) is to get my own one sorted and back to blogging.

So i thought a small 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 did THAT 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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