B meets Simon Cowell

Yesterday a fab day. In the morning, my first appointment to try on wedding dresses with B, my friend Sarah and Julie Beths godmum and in afternoon B and Julie and I went to her children's hospice - Chase at Christophers in Guildford - to meet a secret celebrity.

The clues were there when we arrived, lots of X Factor signs and pictures. But was it Simon, Louis, Danni or Cheryl?

After a while, he arrived......lots of cheers and B whispered to me - "he is quite handsome". One parent was a bit over enthusiastic about his presence so much as we were quite sure why she had bought her children! Simon sat and answered questions from the children and parents (I asked would he ever go on Im a celebrity get me out of here to which he replied no because he hated creepy crawlies!). Other questions included - who did he think would win X Factor, down to a cheeky do you wear boxers or y-fronts! and one boy asked him why he was so evil..lol

After half an hour he went off to do some tea drinking and press interviews and B and Julie had cake. He then returned and did individual pictures with the children and signed a photo of him for them. B got introduced as the girl who was recently in Hello and got two kisses!

On sky news on the tv, you can see B getting a kiss and me in the background. On this clip, you see her with him when she is getting her photo taken.

A fabulous day. Marred only by the fact I forgot my camera! But got a couple of ones on Julie's camera which I will share when I get them.

He really was a nice guy by the way (and ok, a bit handsome........)

Today is the first day of the rest of their lives

For confidentiality reasons I cannot go into much detail but today I met a very newborn baby who potentially (and very likely has) a disabling condition. His parents did not know about his potential condition when he was in utero. To say it was a shock to them is an understatement. He came to our unit where I am on placement initially this morning for some blood tests to be taken and then later again when he got a bit cold. I cared for him and gave him lots of cuddles and fed him from a special cup.

I told the nurses that I saw the baby with potentially X and not the X baby. I felt sad for what the parents will go through with this discovery, for their possible losses of dreams and for all the hard things that come with having a child with special needs - things I do not need to spell out. But...I also felt that I was holding something very special in my arms.....he was beautiful...He would bring his own uniqueness to the world and the world should be honoured to have him.

Good luck little man

International Ataxia Awareness Day

Friday (25th September) was International Ataxia Awareness Day. I wore my t-shirt to university and B wore hers the day before and on the way home (she had to wear uniform most of the day friday because they were having their school specialist status launch and as head girl she had to have pictures taken). She wanted to raise money. She raised over £17! How fab is that.

I stood up at the beginning of our first lecture that day and told my fellow students a little about ataxia and also how it effected our lives. Perhaps I have made at least 33 nurses to be think a little and maybe recognise the name if they ever come across someone with an Ataxia.

every little word of mouth helps.....not a cure but one day maybe they can find something that helps

Nursing the special needs/life limiting child

This semester at Uni during the final year of my childrens nursing training, is about nursing in specialist settings. The four weeks we are in Uni this month until we go out on placement for 15 weeks is all about complex needs/special needs/critical care.

To the normal student, this is about learning about disability. About what the parents may go through. On how to deal with these situations. On how to help them best.

For me without a visual escapism, its about getting through the lecture without sobbing loudly. It is about sharing my knowledge, my experiences, your anonymous experiences so that they can perhaps FEEL what it feels like. It is about trying not to visualise my daughter in that cold room. To close my ears when the Lecturer talks about lose of hope or dreams. To try and find a professional branch of my emotional tree when we practice in the skills lab dealing with a child that has passed away and then I see so many of my friend's children in the topics we discuss and I feel blessed to know and to have known so many wonderful children.....that make me smile when I think of them and sometimes sharing a little story about them.

Last week we had life limiting conditions, tThis monday we had last offices. Friday we have dying and bereavement. Next Monday we have end of life dilemmas. Through each day my friends at university hold my hand.

I know that when I am out there I will be able to divert my thoughts from what has been or what may be with B, to the child in front of me. To help those that have gone through what we have gone through - through a waiting game, a devastating diagnosis and the struggles that happen after - emotionally and practically. I know I can help those people. I know I can give some support to those whose child is desperately ill. I have stroked that dying child's hand. I have massaged their feet whilst the other nurses have shyed away. I will be that person who talks to that child who can or cannot hear. I will be that person who hugs the sobbing mum or dad.

Because that is what I would want if it was my child.

and for now, I just need to get through these weeks and visualise that beautiful smile my beautiful girl has.

"This seems like a good location........"

"for what"

"to ask you to marry me"................................

I have waited many years to hear this. We have been through so much together. Through B's illness, looking for answers, dealing with the diagnosis, losing our way for many years, searching for ourselves again, finding the couple we used to be..... just months ago and now -we are going to be married.

I don't think I can love someone as much as I do you M. (well maybe except B of course)....I am so proud of you. For what you do, for all you give, for what you are. Most of all you are a wonderful father to B and a loving, caring and supporting "Fiance" to me.

I can't wait to spend the rest of my life with you and B. I love you both so much. You are my world. The top of my mountain......

Letting it out

This past week has been a real whirlwind of emotions for me. A week ago I came back from our annual charity camp where we spend a week with many families of children with special needs centred around our fun day on the saturday. I think alot of my emotions are to do with the fact I spend so much of my time preparing for the day and then its gone and I am left with "did it go ok?". We start planning in January. We have a team of people who help source facilities and activities. Towards the end of July my house looks like a jumble sale full of boxes and stuff from the loft and I love it. The weeks before I don't sleep because I am anxious. The week of I wear out the grass between my tent, the marquee and the area where new campers arrive. The day of I rise early to prepare, a bag of nerves and adrenalin. The day always goes well. This year in particular I think it shone (even though the rain made a slight appearance at lunchtime). The team rallied round. The kids had fun. The adults had some pampering and opportunity to check out some wares. Everyone has fun bar a few wasps and I am glad.

and then its done. For another year. (except the clearing up and the exhaustion of course!)

and then my feelings take over. This year big time. People perceive me to be this strong, outgoing person who is able to stand up in front a of a big crowd and speak. Makes me brave right? No.

Every single day I wonder how I am being perceived. Am I filling a suitable role? Am I boring? I will sit here and hope someone finds me interesting. I can't be that social butterfly because inside I feel I am not. Give me a couple of glasses of wine and out that fun person pops. But before that I worry...just worry. Is that person whispering about me? Does she/he really care about me? Am I just an organiser? Will it matter if I am not here?

and then my daughter. She completely turned around this year. From the child who sits in the background, she showed her real self. The self I see at home. Her fantastic humour and her laughter and it made me so proud of her. She did better than me this year. For that I am glad.

and I am supposed to be pleased by the fact she has a crush on a friends teenage son. But all I can think of is it will never be and then those dreams for her get a little more crushed. I want to be happy for her but I don't want her to be hurt either by wanting things she cannot have. But then I suppose thats life right? Disabilities or not?

By the end of the week I feel battered by my emotions. I cannot tell whether I have had a good week or not. The "I am not worthy" feelings take over time and time again. Am worried about everyone else and whether they were ok. No matter how much I tell myself I cannot control their feelings or ensure they have a 100% good time.

and I get home and these feelings really take over. I have been feeling very down about it. Only a previously planned trip to a friends has helped. Hours of talking through all these feelings has given me some hope and some ways to perhaps deal with them a bit. Thank you.

and then....

Yesterday I get a text from my M. He is in hospital, had an accident on his motorbike. Text?! Yes. Then I am in floods of tears because I cannot get to him because I am alone with B and I cannot take her to A&E. I am stuck with no carers available. A friend saves the day (but still I have massive feelings of guilt about that...???) and I am able to go see. I arrive and he is not in his cubicle..He is having a scan they say...what kind of scan??? He returns, all is well. He is not badly injured...doctor returns and advises not the case, he has suffered a tear that may need repairing. and so it goes on. By 6pm they advise they will monitor overnight instead. He gets grumpy about staying at home, telling me I should have fought his corner about going home. I try to sweep away those feelings of hurt and think its ok.

But it isnt. I could have lost him. I kept in my tears because I always have to be the strong one. The one who appears ok. Who doesnt need that cuddle or doesnt need that reassurance. But I do. He went head on into a large jeep and went over the bonnet. He is VERY lucky. I could have lost him. I didn't. But I am allowed to feel...

I go home and B is beside herself because I have been away all day and she is worried about her dad. I have got her into the hospice because I have no clue what is happening with M and she dissolves into hysterical crying about that. I want to comfort her but I also want to say I CANT COPE WITH THIS, please just be ok or I will burst. I tell her I just need her to be grown up about it and I need her help and she calms. I feel so much guilt when it comes to her. I can never do enough or do it right.

So what's the point of all this? I am not ok. I cannot just switch off. Inside I am battling with alot of emotions and feelings of inadequacies. I need to find coping techniques to deal with situations that scare or hurt me. Otherwise I just can't keep putting myself in those places..its too damaging. This isn't a pity party. This is me.

Perhaps this will help some who may feel similar. I don't know. But my friend's advice:"Rationalise. What is the worst that could happen. Which choice of action would give you the better feeling - for you.....".....just need to keep remembering that.

July and August in a nutshell

I became 38. The second eldest.

I finished uni for my second year and in terms of all my exams and assignments and

I PASSED. Celebrated end of term by going to Thorpe Park with my uni friends.....we liked the water rides.

Beth started a youth play scheme for kids with disabilities and enjoyed it. She will now go one saturday a month.

I spent alot of time with this little girl

and did alot of preparation for our annual charity fun day

which was a big success.

and camped with old and new friends.

and having fun - day

and night.

and August isn't over yet.