Say no more.....

From girl to woman

When my daughter turn from this?

to this?

I don't remember the transition. Did I wake up one day and suddenly she was so grown up, so beautiful? Or was she always so beautiful but I was so centred on her disabilities and changes that I couldn't see it? Did I miss the what felt like sudden change from sullen, frustrated 9 year old to placid, happy 11 year old? To a funny 14 year old?

When she was little for many years, she showed "character" (so much as I had to leave the house several times to keep calm). Not always negative but enough to challenge the sanest person. At times she would make me laugh so hard though that we would collapse in a wobbly heap on the floor as she lost her balance and I lost my footing trying to catch her. Those days were both hard and something to treasure.

Today she is nearly a woman. Her body, her face, her smile say one thing. Her body, her face, her smile say another. As in, behind that beauty is an immaturity that is often hidden. A courage that shows its face sometimes and hides away another.

This is why I worry. I worry about the proposal she should go to college with her classmates next year. A year earlier. This is why when today we spent many hours on an assessment day at the college, I cried a few tears when asked how I really feel about her going. How I fear the mismatch of her care versus independence and I guess....the fear she will no longer need me.

I am not ready to let her go but most importantly I cannot see a day when she will not need me. To what level she will I guess we will find out.

It's just hard to say goodbye to her childhood.....always my baby

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......