Raising money

Friends at University want to try to raise some money towards Beth's Balder chair. We are doing a 3 legged mile walk called A Taxing Mile on the 12th May. Details on

http://i66.photobucket.com/albums/h244/RobynUK/postercopy.jpg

If anyone wishes to sponsor me or my friend who will be my partner so I guess it will be both of us!!! then please email me at vroomrobyn@hotmail.com with your name, your address/email and your sponsorship amount.

If we get half the funding from a charity that is interested, we have around £8000 to raise. The chair in question is the one on the left on this link - http://www.balder.co.uk/home/default.asp

Thanks
Robyn

ARGGHHHHH

My to do list is getting longer and longer and i have notes all over the place to remind me. This weekend and next weekend we are away and in between I have uni.

At least the decorator finished. Just need to clean his building dust away now...

pass the broom, mop and an extra four pairs of hands and three of me, please

In awe of all of you who have more than one child and are able to keep sane and on top of things!

I'm drowning in paperwork and return phone calls to make.

Good news? I think I may have lost a couple of pounds so Cinders may not look so fat in her ballgown on saturday after all. We will see.

Pat your stomach, and rub your head..

I love those type of lists but don't you just hate those kind of days. I am finding it amusing so am going to record my day today.

Today I

Got up, moved electrical stuff out of the living room ready for painter.
Printed off some charity stuff to post and posted said items
Drove to Uni
Studied for 1 hour over yucky coffee before first lecture
Learnt about care pathways in a lecture
Had break, amidst studying the immune system, eating lunch and socialising with uni friends, my mobile phone which was on silent kept being called by various people whom I had to call back.
Then afternoon lecture was cancelled so studied more in the library and left at 3
Came home and needed to phone back more people. (I hate 1571 btw!)
Went to the gym to exert myself and burn a few calories before going out to eat tonight.

Phone calls today - all not short ones!

2 to wheelchair services to discuss wheelchair voucher scheme
2 to B's school to discuss visit on Friday plus taking Beth home early
d1 to B's physiotherapist to discuss the need for supporting reports from her for funding opportunities for the Balder w/chair
2 to one of B's carers with whom I am having tax code issues
1 to the payroll company that provides payslips for me to give to said carer.
1 to a charity that is waiting for an end of grant report from me for several weeks..eek
1 to my mum who wanted to know what time to come on Friday as she is B sitting for the weekend.
and various received too which i answered of course. In addition, alot of emails to and frooing on various things including wheelchair related items and a wedding oop north in two weeks of which time must be found for lunch beforehand along the way and a toilet to change in!

May not seem like much but each of the above conversations resulted in an action required after. Sometimes it feels like I spend my life sorting, sending emails, putting stamps on letters and printing, printing and more printing. Oh and I forgot CHASING! How could I forget that one....its a job role for many of us...chasing the professionals.....

oh and get this.....B's new recently part purchased/part funded manual wheelchair....no head rest....I didn't notice it wasn't ordered, her physio didn't think about it....no head rest = no rest...no head rest = no travelling in it in an adapted vehicle.......DUH!!!!!!!!!!!!!!!!!!..

oh but hey it was 18 degrees centigrade here today...woo hoo....not quite time to get the white legs out though I don't think

Anyway off to go lick an envelope

byeeeeeeeeeeee

It's been a while

So the fact I haven't blogged in over a week may give you an indication of the fact, things have been a bit hectic and also a bit overwhelming. My B is on school holiday and I am not so have been mixing care with the odd hour here or there with her. Not very good but not alot I can do about it. She went to the hospice Sunday night til Wednesday morning. I went after university on Tuesday to spend the night with her. We had a really lovely evening. Chilled out, watched the Lion King whilst munching crisps.

Wednesday it kinda all went to pot for me. I had a crying day. I cried during a back massage given by the hospice complimentary therapist when she said relax and close your eyes and things just flew at me in my head. I cried during my counselling session after with the hospice counsellor. In fact I sobbed the whole way through that one. I cried in the afternoon during a visit from a charity to see whether they will help fund B's expensive wheelchair (why does it feel that we work hard and have worked hard, and that they have to know the ins and outs of my knicker drawer to get her something she needs!) and then I cried in the evening during a meeting that M and I attended.

Today I cried during a lecture at uni when I found out that in some countries and cultures, they leave a baby alone to die if it is disabled (and even in some cases, purely if its a girl). How awful is that. that poor child left on its own to die slowly? Surely not. My reaction took me by surprise let alone my friends. But I couldn't help it, I just sobbed for the injustice of it.

and to be honest I am just shutting myself away and hiding from everyone. I cannot handle pretending I am fine when I am not and in many ways other people's issues right now. Not because I do not care. Not at all, I hope those that know me , know this. I just cannot admit some of the stuff going on right now because it will make it too much of a reality. I don't understand myself half the time, let alone expecting others to understand me. I am grappling with some stuff that really is testing my sanity. That's all I can say. Sorry if that sounds dramatic. It's not mean't to be. Actually I shouldn't apologise. It seems I do that too much. I am allowed to have feelings. I have alot on my plate right now. That is ok for me to admit. Right?

I just would like to feel in control of those feelings sometimes.

Steps being taken, things have to change. I know.

Love to all

p.s. I just came back here to edit because it feels so self-indulgent writing what I did. But I should leave it really. My counsellor says no-one will know how I feel if I don't say. So, consider it said, I suppose, in summary version anyway.

Opposite ends of the emotional scale

Today I found out that I had passed my first nursing exam and first assignment. And that I got Grade A for both. A surprise!! a nice one.

Tonight I found out that my sisters long term boyfriend found his dad dead in a chair today. I have known Trevor for many years and he beat cancer a couple of years ago. He was a gentle lovely man and I feel so sad that he lost his life so suddenly - they think maybe heart attack - and for his son G, who has lost his uncle, his sister and his dad within 18 months of each other. His mum died years ago. Trevor was only in his seventies.

Tonight I dedicate my tears to Trevor and I hope that he is at peace wherever he may be. His gentle soul will be missed and to G, I send my love and strength. Finding your dad that way has to be so hard and losing the sole remaining member of your family bar your children, must be devastating.

{{}}

The things they say

"My Dad is called Daddy". My friends little boy said today.

Favourite recent Bethism was in the van on way to M&S. She suddenly starts talking about a boy she used to know years ago. I asked her what made her think of him. She said "it just popped my head up". !!

When she was about five or six and had real bladder urgency issues, she used to say "but I'm separate" instead of "desperate". Now at 13, she still gets Melon and Lemon mixed up. Presumably that's all to do with her processing issues...but hey it makes me laugh every time! (wicked me!).

and now she is starting to wind people up (in a nice way). An interesting development because it shows some imagination. For someone with severe expressive language issues, this is a breakthrough. It actually took me by surprise. At a hospital appointment this week, the nurse took her blood pressure and asked her whether she painted her golf ball silver on her wheelchair controller. "Yes" she said. and "did you stick it on there" "yes" she said again. Big sly grin comes across her face. Of course she didn't but the nurse believed her for a minute.

I love the things that kids, of all ages, come out with. They can bring on a real belly laugh or just a big grin from those who say it, and those who hear it.

You are the wind beneath my wings

I saw Beth today. She had a paediatrician appointment at our local hospital so I drove down to school to get her. It was just the therapy I needed. She was in the dining room so I walked up and plonked myself next to her and said Hi...lovely great big smile back at me...I don't really need anything more than that. I am aware I can sound quite morose sometimes and I don't mean to be but I think its important I let my feelings out otherwise I will just curl up and cry all the time.

I look at her face and I sometimes can't believe this beautiful girl is mine. And then I want to cry for the injustice of it all as she drools or her eyes roll back. Appearances are not what I mean here. Those things don't make me sad. Its what is causing them that does. I want to grab her curling hands and pull them straight. I want to get a flock of birds to pick up her shoulders by their beaks and pull her upper body up straight. I want to use glue to make her eyes stay where they should. I want to banish those nasty headaches. Most of all I want to shout about how much I love her and I just want it all to stay still for her.

She has understanding of much but so little too. Sometimes her thoughts are for things that are just important for that moment.

Some people would think it rude that the first thing she said to me (after giving me a big smile) was "mummy, my phone needs topping up". That is the most important thing to her right then. Nothing else. No bad brain or nervous system. No doctors prodding. Not the fact she is in a wheelchair..

Just the fact her phone is running out of credit........that's my girl

Lycra rules

I joined a gym

Enough said.