Sally's World

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

Well, they let us home from the hospital today, I’m a little concerned that is was more to do with the fact that Deion was constantly demanding food and chatting the ears off the nurses than that he was actually alert enough from the anaesthetic to come home.

I was up late last night packing his bag…and don’t think I’m talking about pyjamas, reading books and slippers, I’m talking about chicken drumsticks, Doritos, chocolate chip cookies, Haribo and a Satsuma…the Satsuma was for me.

Sadly, I underestimated, and in the last four hours, he still needed two hospital meals, one of the nurses lunches and a constant supply of drinks…with chipped ice if you don’t mind, not the cubed kind!

I’m not sure he was totally ‘with it’ as we left the ward and he drove his chair down to the car park. After taking out a potted plant, a chair and a doctor, I realised, he might not be fit to drive after all.

Is driving a wheelchair under the influence the same thing as drink driving, I’m not sure. It may seem less dangerous, but if you’ve ever been run over by an electric wheelchair, you know it’s no joke!

But in all seriousness, Deion was a star, he hated the starving part, but he was great when they do the blood tests and put the drip in and stuff. He had a muscle biopsy, a lumbar puncture, and an arterial blood test. All went well, and apart from feeling a bit sore, he is fine. He’s gone to bed now and I expect he’ll be using his sore back as shamelessly as he can, and we’ll all be charging around catering to his every need all weekend.

I also had to explain to Jordan, Robyn and Dave that Deion was not halucinating, as they presumed on hearing about it. And we did actually see a storm trooper in the lift at the hospital. It was a little surreal, I got a fit of the giggles, and the stormtrooper looked at me as if to say 'grow up' which made it worse. But he didn't shoot me!!! so that was okay!

We’ll be getting the test results in a week or two, so fingers crossed for good news.

And I just want to thank everyone for your messages of support. Family and friends obviously texted, phone, e-mailed and sent their love. But we also had many good luck messages from people who only know us through the blogs. So thank you, we are touched and everyone’s messages of support were much appreciated.

I need to go and get some rest now, Deion’s going to have me on my toes tomorrow.

Take care

Sally and Deion (Demon Driver) xxx

After I wrote about Dave yesterday, a few people e-mailed and asked me if I thought that Dave being black and me being white created problems with regards to marriage, family and parenting.

I guess we did meet with a lot of prejudice when we were first together. Still do on some level, but society as a whole is far less concerned with mixed race relationships now I think.

I used to get stereotyped A LOT…… When I was pregnant with our third child, I was at an antenatal appointment with my eldest 2, the midwife asked me if all the children were by the same father, and when I replied in the affirmative she said “oh, well done,” as if it was shocking. I resisted the urge to batter her with the baby heart monitor and said nothing.

I guess there are always going to be issues with any mixed race or religion relationship. But if it’s right, it’s worth the fight. And you really need to not care what other people think. All married couples have differences; the racial ones are just more obvious to the naked eye. No, I don’t know what it was like to experience racism on a daily basis while growing up, but on the same note, Dave has no idea what it was like to be a girl growing up. He’s not experienced sexism in any way either. So we are all different, there are always things that we cannot of experienced in the same way our partner did. But that’s one of the things that makes a relationship interesting.

I for one do not want a husband who is exactly the same as me (we’d kill each other within the week!) And I believe that children of a mixed parentage have the best of both worlds, mine do because they can be enriched in both mine and their dad’s cultures. As long as we have the same values, as long as we want the same things for our children, as long as we love each other…that’s what counts. I guess we’ll just work the rest out as we go along; it’s worked for us so far.

We fall in love with a persons heart and soul, not their skin colour.

And no, don’t worry, two people asked, but I promise I was not offended in any way, if you want to know anything about me, I will answer as openly and honestly as I can (within reason) and after all, its only my opinion, and what I believe. Although it may be different to what anyone else thinks, I am more than happy to share my thoughts with you.

Take care

Sal xxx

My day so far has led me to question whether we are a nation of people who are so self absorbed in our own lives, that we don’t stop and give a second thought to what someone else may be going through. Or is it that we realise the difficulties, but we just choose to ignore them.

Deion had a hospital appointment this morning, and the sheer amount of doors that got slammed in our faces, and the number of people walking in front of us had me looking down at us both and questioning whether we were actually invisible.

Then I had to go to Tesco’s to do some food shopping, there was a lady selling the big issue outside, I said hi and told her she could have my trolley pound on the way out, my usual small contribution. But as usual I was surprised at the number of people who not only ignored her, but shot her a look as if she was something they scraped off their shoe. Not like she was someone, down on their luck and trying to do something to help themselves at all.

Inside the entrance was a blind man and his dog with a collection box. I had some change in my pocket, and heard it hit the plastic at the bottom as it went in. On the way out, after an hour and ten minutes in the store, I put my newly acquired change in his collection box…and I was surprised that I still heard it hit the plastic. “How long have you been here?” I asked him. “Three hours,” he said. “and how many people have put change in your box?” I said. “Four,” he answered.

This is surprising isn’t it, that a man can stand collecting for people who are missing, in my opinion, one of the most precious things of all, their sight, and no-one stops to put their small change in the collection box. Surely, it’s just a few sweets, or half a pint down the pub even, but still hardly anyone bothered.

Are we not able to see that we can do some good, is it possible that we care so little of the plight of others that we cannot spare a few pence, or a pound to help. Then of course, if you can’t spare the change, holding a door open costs nothing!!!

Of the thousands and thousands of pounds that got spent in Tesco’s yesterday, a few pounds for a good cause doesn’t seem so much to ask does it?

Maybe I’m feeling a little emotional in my weakened post viral state, maybe I’m sick of people nicking all the disabled parking spaces, slamming doors in Deion’s face or ignoring any person who needs help. Whatever it is, it has really got to me today.

Take care, think of the needs of others and be generous when you can.

Sal xxx

We’ve been getting such a positive reaction from the video and written blogs, that Trojan has had another great idea…he’s on fire at the moment. He’s a one man marketing/advertising/promotions team!

So now we are adding radio blogs into the mix. This means we’ll be able to have more in-depth chats about the issues that the blogs are raising for all of you and hopefully we’ll be able to help more people and give more advice.

We got together yesterday and had a practice run, it was a lot of fun, although I don’t think it actually make much sense. I introduced the show, introduced Trojan and we proceeded to have a chat about everything from amateur dramatics to how Trojans ears pop when he’s on an airplane. That’s if you could make anything out amongst our laughter and the kids playing in the background.

As you know from the video blogs, Trojan is quite expressive with his hands, and the fact that he had his phone in his hand while he was talking only meant I had to practically leap around the room to talk into it. Of course afterwards, he told me it was on loudspeaker and would have picked my voice up anyway, but I’m not all that good at this stuff, so I didn’t know that.

Afterward we listened back to it and laughed even harder, I, apparently say ‘really, yes’ or ‘absolutely’ every ten seconds when someone else is talking…why has no-one ever pointed this out to me and told me how annoying it is? I also realised how fast I talk and how I get louder and louder the more animated I get.

Then we listened to a couple of other pre recorded shows from more experienced broadcasters, and Trojan got quite cross with me because I didn’t introduce him as ‘my fabulous co-host’ like the other broadcaster did. For this I apologise…you are totally fabulous Trojan.

So on Sunday we will be broadcasting our first live radio show at 5pm, you can go to the link on the blog page to listen in. And all joking aside, it is a very serious topic we’ve chosen to talk about a topic inspired by the e-mails we’ve been receiving in reaction to the blogs. It is about how disabled children are viewed by family, the education system, the health system, society and the government. So the title of this show will be “Disabled Children Precious Gift or Extra Burden.” we know its controversial, but we also know its important not to shy away from the issues just in case people find them uncomfortable.

We hope you join us and give us your views, it is important to get lots of people points of views on the issues, not just our own. So we’ll sign in and see where it takes us.

We will be recording another short video blog too, we’ve decided not to choose a subject, and to be spontaneous…oh goody!

See you Sunday

Sal & Trojan xxx

Today, I thought I’d tell you what we have achieved so far in such a short space of time. The video and written blogs have been raising awareness, and lots of people are e-mailing to say they are finding them very helpful. One of our main aims was to be able to reach out to people in need, and that seems to be working, so we are very proud.

The T-shirt and book sales are up by over 40% which means we have been able to put more money towards the charity.

As well as the UK, we have got readers and viewers from the USA, Spain, Greece, India, Saudi Arabia, Belize, St Lucia, Grenada, Ghana and Gambia.

What would be really good, is if you felt like you could tell your stories too, tell others what you’ve been through and how you dealt with it and coped. It’s really therapeutic, I promise you.

It would be helpful to get other peoples takes on things, for me also. So far you’ve just heard my point of view and how we’ve coped as a family, but we all have different ways of doing things, there are no rules, no rights and wrongs, but if one thing you say helps someone else, then it will be worth it.

Also it would be very interesting to see how having special needs and disabilities affects people who live in other countries with regards to education, equipment, hospital care, physio care…. the list goes on.

So if you feel you are able to share you stories or experiences, then please e-mail, or comment here. It would be great to get a sort of support network going where we can all help each other and give advice on what we know, and get advice on what we still need to learn. You can comment anonymously if you like, so you don’t have to feel any pressure.

So please feel free, and be as honest as you like (I think!!!).

Look forward to hearing from you.

Sal & Trojan x

One of my daughters friends e-mailed me last night to ask how she can help with fundraising. I was touched and very proud of her. I guess Trojan and I are getting something right, it's lovely to know that we are inspiring people to think of others. Although she may regret her kind offer in time...I fully intend to rope her right in now.

We have done alot of fund raising in the past. We started small with jumble sales, raffles and auctions, then we quickly progressed onto head shaving (not a good look for me),nor was it the right time of year...note to self...only shave head while residing in a tropical climate. We did some bungee jumping, which frightened the life out of my poor mum, and we reigned it in a bit with the occasional pub crawl...all in the name of a good cause of course, the hardships we endure. Next time though we'll rethink the St Trinians outfits.

There are tons of things other people can do to help, a friend of ours did a the great north run...madness if you ask me...I'd rather throw myself off of a crane from 300 feet up in the air attached to nothing more than a glorified elastic band...oh yeah, did that! In fact did it twice it was so much fun.

I have now decided to do a parachute jump, and I can't wait, my mum's not quite so happy about it though. She says I give her grey hairs, which is not entirely fair, my brothers and sisters have to take at least some of the responsibility on that one. Although, to be fair, I did promise no more bungee jumps...and as far as I'm concerned I'm keeping that promise...sky diving...much better. Dave is desperately trying to find comprehensive life insurance that covers jumping out of a plane from 20,000 feet up...good luck with that one Dave. Even the kids questions on what will happen should my parachute fail to open, aren't putting me off.

We have lots of ideas for future fundraising events. Via the blogs and You Tube we aim to keep you posted, and of course the charity site will be up and running soon with all upcoming events listed. There are always things you can do to help, even if it's just spreading the word. We have been overwhelmed so far by the response and the compassion of others. We rope in family and friends all the time,and are eternally grateful for their unwavering support, but it is often the random act of kindness from a stranger that amazes us.

If you want to know of ways you can help, then please e-mail me. And I promise, I'm not expecting anyone else to jump out of airplanes or to get straight down the barbers for a number one. Unless you really want to that is. I bet I get inundated with people offering to do pub crawls though!!!

Take care

Sal x