To think this has happened in a 2 year period when our emotions are at rock bottom anyway, is something you rarely find. Even worse when you consider we have lost Sophie (as we knew her) as well! What one has to remember, even though as an adult you deal with these things and can prepare somewhat for any event like this, the minds of a 13 yr. old and 10 yr. old are irreparably damaged. How do you deal with questions like, “When will you die Daddy”?  Any answer I may give is immediately shot down in flames with a quick concise history lesson of the last 24 months.

Life is about living and learning, and coping with grief – but there are limits to what one can safely explain!

One can also recite many areas of the world where tragedies and disasters are a daily occurrence, and that poverty is rife in our modern economy, but explanation is difficult when the event is closer to home. The questions are more searching, demanding, and inquisitive. It remains to be seen what questions will evolve from the funeral, and people they have never met walk up to them and give them their sympathies.

I worry about what my girls minds are like and what worries they harbour and how best to deal with them. Particularly this year as the hope of bringing Sophie home looms ever nearer and defence solicitors continue to pound on the fact that Sophie will only live 5 years. It makes questions ever so much harder to deal with in light of their current loss.

The Apple Tablet (apparently) is announced tonight at 6pm.

What can I say, but if everything is as they say it will be, such as an enlarged iPod Touch, then this could have serious positive consequences for my eldest daughter Sophie.

Imagine a touch screen computer that only requires one touch to open something, resizeable icons, large screen, portable and you probably have one of THE most advanced disability aids ever announced!

I wait with bated breath.. more to follow . . .

Bono

When you look at the various wheelchairs that the majority of disabled people use, you think ‘oh, look the other way’ don’t you!

When you look at a car you think Mustang, Ford, Peugeot, Ferrari. The car industry looks sexy, as does the modern technology gadgets we all use from Mr Jobs at Apple, with the iPhone, MacBook and the sexy iMac.

Bono wrote in the New York Times about how the car industry should get ’sexy’ again and look at the cars of the 40’s, 50’s and 60’s. If we need to relook at the car industry again as Bono suggests then we are really in serious trouble for the people who need the help the most.

When I look at the equipment on offer, I have to laugh to myself. Yes the equipment is great but not sexy. Does it need to be?  Well, put yourselves behind the eyes of a teenager evolving out of a coma, minimally aware. You remember all the things that you loved but you cannot say or understand why. Your a teenager, you know that, but you don’t know why. It’s difficult isn’t it!

I smile at the gadgets donated, to the homes and hospitals. The PC’s for example – bottom of the pile, slow effectively useless. Is that because they think, they’ll do? I don’t know prove me wrong!

I say these kids, more than you or I, deserve the best. Mr Jobs, give these kids the latest Apple gadgets that look cool. Manufacturers, develop wheelchairs that look sexy not just for those that can afford it. And equipment advisors to the disabled, get your heads out of the sand do what you do, but pass it to a designer, let them make it sexy and let the kids smile when they get it, let them use it, and let them explore and show off what they have.

The balls in your court now…

Had a family forum meeting with the home on Wednesday, which was OK, we were the new kids on the block, didn’t really like our ideas but I suppose the other parents (who have been there a long time) are in a comfort zone.

One thing that came up was security and got me a bit heated. they operate a closed door system where you have to wait for permission to be let in, which I personally think is great. the others wanted the key codes so they could let themselves in. I didn’t agree because of a number of reasons which are:

1. Who is responsible if a patient accidentally wanders out.
2. Who will monitor the coming and going of potential strangers.
3. If someone comes in and says they are going to see Sophie, who monitors that, and can we be assured that they are monitored whilst they re with Sophie?

For those three reasons we said a resounding NO, but we were not well liked after that. Reason being, why should Sophie get special treatment, I replied “What special treatment,  is not the basic premise of a parent to ensure your child is safe and secure?” The problem being is Sophie is the youngest patient they have had, and I think that is half the problem. To us she is still our baby and we will wrap her up in cotton wool until she comes home and then we will wrap her up some more. I think a lot of them think we are strange as they have left their youngsters (23+) in the home, and there maybe perfectly good reasons for this, but we can’t!

On another note we have made contact with Putney Hospital and the consultant there in charge of SMART, and we are going to try and get together to take Wake Up forward. It is really difficult to know what the right thing to do is, but I am sure we will develop a plan. The website is coming on and we should have a beta up and running soon. The celebrities are very responsive at the moment so I will attempt to not go into name dropping mode, but Kylie is fab…

Another person that brings a smile to my face every now and again is Mary Lamont, read her blog and follow her @m4rylamont, she can drive you nuts but does make you laugh, which is all you can ask really.

A stranger walks into the room, with Sophies Nurse, the Home manager, Sophies Occupational therapist, and then for the next 2 1/2 hrs proceeds to ask questions about her medication, care, night routines, equipment, what she can do and cannot. She religiously writes all this down, says thank you, and then says I must meet my client (Sophie). She walks upstairs with me into Sophies room and says “Hello Sophie”, I have come to write a report on you and all your needs for the future. She then tenderley strokes Sophies hand with one outstretched finger and has a look at the wheelchair and leaves. “I’ll send the report to your solicitor”.

Sophies old horse - Bert

Sophie looked decidedly unsure but smiled. I mean we don’t mention these things in front of her, and she was probably thinking, what wheelchair?, what hoist? why do I need a wet room?

You have to restrain yourself, but you do end up thinking “What the hell do you know”? This person now carries Sophies whole future in what she writes in her report, how does she know what Sophie wants, what her likes are? Why should she tell us that we HAVE to have 2 carers when we think we only need one or vice versa?

To have your daughters future life being taken care of by a bunch of people who have letters after their name does call into question a few ethics, as knowing the client your supposed to be looking after, and having their best interests at the forefront of any future planning.

How can you have those best interests at heart if you met them for 5 mins, is this the new speed dating for client/partner privilege?

All Sophie wants is home and her old horse – Bert

Started watching “the day the earth stood still” before the Disney Channel was thrust into my viewing triangle, went to get a coffee – no milk. WTF!

So decided to go and see Sophie again, pick my mum up on route and as the sun was out go out for a walk. What a lovely walk down to Boscombe seafront, then along the promenade. then I went and did it. I suggested something!! “Lets go on a bit, I am sure there is a ramp where we can get back up about half way down. What a good idea they all suggested between gritted teeth”.

You see everyone was trying to keep me happy – and I knew it!

Found the ramp, but crikey did not take into account the incline. Worse still sun going down and getting cold, and needed to get Sophie back. Even worse, I heard the question, “Andy, where’s the power pack for Sophies chair?”. Oh SHIT!

Just climbed a hill

“You can bloody push her up there then you stupid t*****”

Boy, that was some push, half way up they relented and helped, but had to stop for a rest. Everyone smiled for the camera.

What was worse was that on getting back to the home, one of the HCA’s said that a further 100yrds down was a lift!

As ever Sophie was on form, laughing, very alert. She had another puree’d roast dinner and enjoyed it very much. She seems to love having us around, and the more we are around her the better she gets, and that was proven when we had her home over Christmas.

My mum saw some big improvements in her and its always nice to hear that, because at times we don’t always get to see them unless they are pointed out to us, as we take them for granted some times.

Boscombe Sunset

On leaving I managed to grab a few pictures on the iPhone, and getting quite impressed with this little camera it has.

Yesterday we were down with Sophie with lil’ Lucie, and Lucie tried to play Connect 4 with Sophie.

This is what Sisters mean

It was very successful and you can see what sisters mean in this photo, as Sophie loves having her two sisters, Lucie and Ella around her at all times.

Alison spent all morning and most of the afternoon with her mother who is not very well, and arrived home extremely tired. Unfortunately with the kids run due at 3:00pm, it mean’t yet another day not being able to see Sophie. this in itself is extremely stressfull. Everyone believes Alison can do everything, and if you moan you get an ‘Oh well” response. Anyway, I will take her (force won’t be necessary) down to see our lovely daughter tomorrow. Hopefully, will be able to post a picture.

Trying to sort out care for her was easier than I thought, only because we have links into the system because of Sophie. Our OT was absolutely fab and came to see Ali’s mum yesterday and am sure she will sort everything out – wanted or not.

Kids quite happy today, Tom I think is partying, but no sure – can never tell these days.

We have a number for plans for 2010, and will update these on the main site as and when they happen. To stay up to date please register on sophies gift and you will be kept up-to-date.

We all know how hard it is to reach a celebrity or to get an autograph, but just bear a thought for those desperate to get a message or something from an idol whilst their loved one is fighting for their lives in a hospital. Just to hear the voice of an idol is enough to bring a smile, but to trigger a response from a child in a Coma or Vegetative State can be life saving at best and at worse progressively enhance a “Quality of Life”.

Sophie Wilkinson was in just such a “disorder of consciousness” after being in a coma. Her parents contacted Johnny Depp who rapidly sent a video to Sophie. On hearing that video, a smile grew across her face that was almost unbearable to watch. Her recovery had started.

If Mr Johnny Depp can do this at such short notice then the millions of celebrities around the world can also do it, and so the project was born.