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......