Life

oooo i could cry or i could laugh...I just typed my heart out and then decided to copy it in case I lost it..when i did that...i lost it...so should I cry? no perhaps i will try again

Life is supposed to be about joy..about discovery..about challenges...about finding the strength to cope with all the things that do challenge you. The challenge is life...and life is supposed to be treasured.....

Well I do treasure my life but I don't treasure my challenges...i think Life is challenging me right now...or maybe its just my brain...the turmoil inside and the inability to rationalise those turmoils....

Isn't it about strength? outwardly people think I am strong...they are so wrong. I struggle so much with what people think of me...sometimes I am a target and I don't know how to fight back...Right now I am struggling with a few things that just are in danger of breaking me..

Can you associate? Can you? Do you love your child so much that it hurts? I love my child...I am grieving for what should have been and what is. At the same time I admire her ability to carry on whilst hurt for her fears....then I am at a push pull junction....I love her so much...but I resent her too...Her inability to cope with her emotions so that I cannot treat her as a normal teenager..any small reprimand becomes a melodrama and the guilt I feel is immense...her need for me to care...her reliance on me as her main carer....my need to make sure she is ok so much as switching off is just a dream...my anger at life's hurts....the person who parks in a disabled spot, the person who gives me a hard time, the love I miss from others who maybe dont feel I need it..the empty cat bowl when i get home from a 12 hour shift...the washing still on the floor...the dirty pads in her bathroom when i have been away for a couple of days.. Why don't they know how it makes it harder? Why????

Someone I know said they wished their son was able to get up, go to school on his own etc etc...I wish too...I wish simple things like B being able to wear her hair down without it getting stuck in her mouth and food when she eats...I would like her to be able to express herself...shout at me with words that make sense..to be able to answer my questions with a full sentance..to say exactly what is bothering her in words rather than in tears.

how can i feel normal? why should I? i feel selfish sometimes...what my friends go through/are going through...u feel unique in what you feel but i know that others struggle as much as i do sometimes. But then I feel - what gives me the right to feel so bad and to voice it when others are going through harder times or have lost loved ones. Hey at least she can talk huh? At least she can do some things (or alot of things....if you want to compare) and how grateful should I be..

well I am not grateful at all...

There is something wrong inside my head..I know there is...I live in a continuous swirl of fuzziness... I turn to food...i turn to a glass or two of wine. I try and hide and it isn't working...I love to give but I find it so hard to take back. I want things that I cannot have and then not sure if it would be a good idea anyway...

I want to say thank you to my friends and family who put up with me and my swings.....and especially to R who recently had to deal with the worst day of my life for a while.

I have had to take some time out because too much has been demanding my sanity and it isnt there right now...I may smile outwardly to you but inside I am flat and hurting. If I owe you a mail/call, please forgive me..

All I want for christmas

Dear Santa, here is my christmas list. I understand it may be a little difficult to fulfil all my wishes but if you are able to find a way to fulfil at least one, I (and my family) would really appreciate it.

For Christmas I would like.......
1) For someone to find a cure for my daughters devastating condition to keep her here for a long time and allow her to be self-sufficient in her adult life so she can have some independence
2) For my daughter to fall in love and have what other young girls experience, time and time again and for me to be able to pick up the pieces of a naturally broken heart if the need arises.
3) For the pain in my heart to be at a level that I really can manage and not feel like I am going to fall into a hundred pieces at every one of my daughter's appointment, negative development, birthday, milestone.
4) Some strength to stand up for myself when the going gets tough
5) To believe in myself and that I can't be everything I expect myself to be
6) To always be able to tell my friends that I love them so much and for them to know even if I cannot always tell them or be with them, I feel it in my heart so very very much.
7) A never ending pot of money for the never ending amount of equipment my daughter needs
8) Some help in making a decision on my nursing career that will be the right one
9) Please look after my friend's children. Some of them are so medically fragile and I love them so much.
10) To always keep my daughters face in the forefront of my mind when it feels so desperately hard to carry on.
10) and lastly, I would really really really like it if you could fix it so that my cat stops playing with the baubles on my christmas tree!!!!

Thank you in advance
x

Once you were little, and now you are 15

My gosh...... Happy Birthday my beautiful girl.

When you were little, you liked Tellytubbies and Disney. Now you like Twilight and X-Factor.

When you were little, you wouldnt wear patterns nor dresses. Now you love purple of any design.

When you were little, you drew me pictures. Today you print me images off the internet

When you were little, you loved to sing to Fun Song Factory. Now you sing to Westlife and the latest hits.

When you were little, you captured my heart. Today you still do.

I love you precious girl.

Today I am thinking music....

for our wedding. It seems you need music for

Background whilst guests arrive
When the bridesmaids and parents arrive
When the bride arrives
During signing of the register
When the procession leaves
During drinks
During reception
and then all night long.......

For my arrival, a few weeks ago I came across a busker in Kingston town centre who was playing his violin. The music he was playing was beautiful but I have no idea what it is and I cannot find it. Some of the music is so beautiful though that it makes me cry just listening to it. I told Martijn today that I will need extreme waterproof mascara that day......and he is having to listen to lots of different sound clips....sometimes his face says it all....NO!......sometimes he has a slight wistful look...so maybe thats a maybe....

So I am trailing through itunes, google and youtube trying to find the right pieces.....and I am loving it....

We booked our wedding photographer today.....and I allowed myself some feelings of excitement.....this is happening...it really is..

I cant wait to share our day with the people we love...because they know how much this day means to us..

Something has to give

Today I had a small panic attack. I couldn't catch my breath. I felt dizzy and faint. This was after I sat and poured my heart out to my friend and told her all the things that were making me feel bad right now. The attack caught me by surprise and it came after I voiced some fears...fears that have lived with me for nearly 15 years and drain my emotional cup all the time. The fear of the future takes my breath away...literally....it just tears at my heart so badly...at the what if's, the how will's...I don't mean to be negative but its so painful sometimes.

I talked about how I feel like I am in demand all the time from so many different angles, how I give myself too freely and how I reach for solace in a way that perhaps I shouldn't.

She told me that I do not give myself reward. That I do and do and do. My solace is my reward but it is not a reward that is good for me. She told me it is ok to let it be for now. To let myself have that reward until I am at a point I am stronger to deal with it.

I don't mean to be cryptic but I can't share fully. It is too painful. sorry.

Something has to give. I like to give, its not in my nature to be selfish (define that) but I am damaging myself with worry and anxiety because of it.

I am such a non-judgemental person but I am struggling with something where i work....especially since today we found out that another one of our special kids passed away....from a progressive disease...he was six years old. {{}} to them all....

Something has to give cos I just can't take it.

My week, my feelings

tired
scared
anxious
paranoid
clumsy
down
angry
grumpy
did I say tired? scared? anxious? ..........

Fed up....of demands, of not being able to say no, of not having control over certain parts of my life, of having to shout for things I shouldn't have to, not being strong enough to shout louder at things that make me unhappy or to change it. Being scared of (some) people. Thinking about beautiful things that make me smile and sad at the same time.

Just really tired this week...of stuff that makes me tired mentally and/or physically. Tired of feeling like I am always looking over my shoulder

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......

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.

Ironmo!

M, my other half, did the Ironman Switzerland last weekend. A very gruelling task that took a lot of training but he did it and I am hugely proud. M's parents were there to watch the event and took some video. The video can be watched at

www.abspmtiny.com/ironman09/ .

We are raising money for the children's hospice B goes to so if anyone would like to donate the link is www.justgiving.com/ironmanch

xx

Head Girl

Today elections took place. There wasn't mass media coverage. Polling stations weren't set up all around the country. Instead several students from a school for children with disabilities, all voted for the person they would like to be their head boy and girl.

My daughter came through our door this afternoon with a red badge on. It said "Head Girl". I screamed, cried and hugged.

She did it. She is Head Girl. For me, it makes me so proud. For her, its going to help her with her confidence in speaking to people she doesn't know and to have a place in Treloar History too.

Most of all, in mainstream its very unlikely she would have ever achieved this. Her serious response to my statement on "You will need to wear that all the time" was "What even in bed?" demonstrates her cognitive needs....but to us, it makes me laugh and weall know her little ways.

I often pine for things I think she may not have but she gives me so much to be proud of that those moments slip into the background and more importantly she should be absolutely so proud of herself. Well done B

We love you

xxx

Update on B

Just to let you know B is responding well to the anti-viral for Swine Flu. She has had no side effects and is ok so far.

Swine Flu

I have no idea why I am so remarkably calm about it since its at her school. Lots of people are panicking. I have a child who is vulnerable (chronic neurological conditions are part of the list and what happened at Christmas also is an indicator of how she finds it harder to fight these things) but I don't feel necessarily anxious. This isn't me! lol... B is now on Tamiflu, the antiviral, for prophylatic use as yesterday a member of her boarding house staff was confirmed as having swine flu. Personally I am glad she is having it because at least for the next 10 days she will be less at risk of getting the full blown version and then after that she will be at home. Of course, she may get it after but at least she will be with me.

In the meantime my thoughts are with those whose children I know who do have it and whose body systems will have a harder time fighting it. Keep strong xxxx

We made it

through the crap times, me and my man. Things are good. Looking forward, together now...

xxx

Still here!

Sorry, have had three people in the past 24 hours ask me if I am ok mainly cos so quiet and cos haven't done my blog for a while.

I am fine, just some major stuff going on for my closest friend which means in between my recent nursing placement (which was really not that great but finished so that's ok) and stuff here, I have been helping out with her six week old baby as much as possible.

I am so relieved my end of year nursing exams are done. They were a bit of a bugger though so we will see what happens there. Have assignment due this week and practical exam on the 14th and then that's it for 7-8 weeks. Phew.

B is ok. Had a couple of days of ickiness whilst on holiday recently but seizure activity has gone quieter again which is a relief because I do not want to use that emergency medication stuff! Had her prom this week, she looked beautiful. Most of you will have seen a pic but here's one anyway! and if anyone fancies a holiday in the Isle of Wight, I recommend the house we stayed in. Can be rented in two halves but we had all of it. Has a wet room. Nice and spacious. Its called Orchard Lee and near Yarmouth in West Wight. Fantastic week, including the weather.

So what other news:

Martijn is going to do the long trained for Ironman in Switzerland next weekend. swimming, cycling and marathon.....i wish him and his friend the best of luck and am very proud of them both.

B finishes school on the 15th for the summer and will be moving into a different boarding house when she returns. Unfortunately she will also be returning on Monday mornings not Sunday nights from then too as her school want to charge £200 for Sunday nights and Social Services will not pay that. What it means is we will have to get a carer in to do Monday morning routine and wait for the bus whilst M and I are at uni/work. Be nice to have her home on Sunday nights though. We recently saw a demo with Canine Partners with regards to her having an assistance dog in the future. We have decided to pursue it. It may be when she is 17,18 or when she leaves college, unsure at this stage. But the dogs give some independence whilst still having the need for carers. Any bit of independence will be a good thing I think...plus what a wonderful companion.

Lots of other stuff going on but won't bore you. I am sorry I haven't been able to keep in touch with everyone I wanted to. It's just been so manic. Hopefully the summer holidays will give me and B some time to have some fun together and relax a bit.

Take care all

xx

Reality

is when someone gives you some medicine that should be used in emergency, to stop your child from fitting for a continued period and before her brain ceases not able to compensate due to the mismatch of activity caused by the seizures. When the nurse tells you to phone an ambulance the first time you give it...."just in case"..... I am fortunate to know lots of people who give this to their child regularly, who can reassure me that its ok to give, that its ok to call the men in green etc etc....but it still feels yucky to know that we are at this point that it may need to be given.

Yesterday she had at least six seizures in a 3 hour period. The most I have ever seen. The past few weeks there are increasing? Why? Because we have moved her from one epilepsy medication to another? perhaps, or maybe her threshold is being breached again due to the time of year. Who knows..

What I do know is I am really scared now and couldnt sleep for fear of what this increase in episodes could lead to....With all the stuff we had to deal with in beths life, this is the one that scares me the most.

I have stopped writing my feelings down so much the past few months for a particular reason but this week has been really traumatic with this and a friend in need that I need to be able to open up somewhere.

Letting that aggression out whilst.....

having a laugh!

Access All Areas.....part of Kidz Stuff in Horsham West Sussex, a kids festival. On the friday (today) they open it up to children with special needs and their families, making it the least crowded event I have ever been to with B! Great...

then Lauren and I decided to do the Gladiator thing...........:)

Pictures say it all

Friends

I am fortunate. I really am. Having a child with special needs brings you into contact with many parents/carers with children. Children with additional needs and their siblings too. In the past 6 years since we got diagnosis I have made some really good friends. None of them live near me but still I know where they are. Sometimes we meet, sometimes we don't but when we speak its like yesterday since we spoke last. We help each other through the hard times and shout loud for the good times. I would say I was blessed. I am not blessed for my daughter to have a serious condition but I am blessed to have found people I love and whom love me and my daughter because of it. So thank you.

And then....I have a friend whom has no children with special needs. My girl soulmate she called me. and she needs me right now. I love you S...you will be ok xxxxxxxx

Vulnerability

Today I had an insight into how vulnerable my daughter is. How events could turn out differently if things are not handled the right way. I went to her school at 10.30 to pick her up for an exciting day. We were going to visit the college. I got there and walked into the duty room and asked the carers present if B was around. They said no, she should have been here at 10 but we haven't seen her. They then proceeded to ring up the school reception to find out why she hadn't come down. Whilst they were doing this, I decided to walk the 10 metres to her bedroom to drop something off. As I got near to her room I could hear hysterical crying and her door was shut. SHE WAS IN THERE! I opened it to find her in a right state. Apparently she had come back 15 minutes earlier and gone in to change her t-shirt and shut the door. Why she didn't call someone I don't know but she was distraught at being there on her own for so long.

I walked back to the duty room, noticeably angry. They were apologetic and said she normally says she is back. Well this time she obviously didn't. I got her calm and took her to the college where we had a fabulous day.

Upon return I spoke to the care co-ordinator and expressed my concern that no-one could account for her whereabouts from the time she left her class at around 10 to when i arrived at 10.30. Anything could have happened. She could have had a seizure, she could have been driven off by some stranger (cos believe me if they said they knew me she would go!) or anything. And why the care staff didn't ring to see where she was when she didn't arrive by 10.10 I do not know.

So a message left on my ansaphone when I get in by the Care Manager. Its unacceptable what happened, she is investigating why no-one followed up where she was etc. I should think so too. I trust the care manager and coordinator to find out and action accordingly.

People think she is more independent than she is. They look at her and think she can cope. Well clearly she cannot. I entrust them with her care and they have to realise her vulnerabilities. It breaks my heart to think of her sitting there crying, isolated for 15 minutes without anyone coming or hearing her! But the fact it only takes minutes for someone to be taken advantage of just makes me feel sick.

The talk of gaining independence when they get to college worries me silly...I hope she can find some ways of coping but I know she will never be able to live alone even if her condition didnt continue to degenerate. And that in itself makes me feel so sad.

and off to Cornwall they went...

Year 10 (half of - about 8 of them) Residential trip to Churchtown Cornwall. An organisation called Vitalise that specialises in outdoor and indoor activities for people with disabilities.

http://www.vitalise.org.uk/Vitalise-Centres-and-Services/Group-Activity-Breaks.aspx

B had a fabulous time and did things she has never done before...watch the video for pictures. It has music if you like that!

Juggling

I'm sorry if you are a regular follower of my blog and haven't had much to read lately. Life has taken over big time and I have very little time right now for much. So if I owe you a phone call or an email too, I am not ignoring you I promise!. B is doing ok. Her kidneys have the all clear, she is now completed her transition to her new epilepsy medication - Lamotrigine and is reducing her old one - Topiramate- but will remain on a small dose to help with her headaches. Despite having a 3 minute partial seizure in the garden centre the week before, she had no seizures on her residential trip and had a fab time! She even went to bed early when she was tired!!! Will get some photos to upload. Apparently she went canoeing, wheelchair abseiling, archery, problem solving, campfire marshmallow melting etc etc. She loved it. She is doing ok.

I started my new nursing placement 10 days ago and haven't stopped since. Working every other day mostly 12 hour shifts and visiting a very poorly friend in hospital in between. Thankfully she is home now. Found out two days ago that I have in fact worked far too many hours in one week so now have four days off! Yippee...i need it, I am so exhausted. My feet hurt too! lol.....the placement is ok. I'm trying to get used to the people. It's not been easy...I wont say anymore but hopefully it will get better. The children coming in are a variety of respiratory issues, fractures etc, special needs, teenage ODs, and much more so lots of good practice I am getting (when I am allowed.....). Right now I am scared and a bit stressed about the next couple of months. 5 weeks of placement to do, a 2000 word assignment, revising for a 3 hour written exam and practicals. This semester is supposed to be the hardest of the 3 year course....so I hope i can get through it....So if I am quiet, its mainly because of that. If anything happens with B, I will let people know.

Take care of you and yours xxx

Whats in the bag?

.

.

.

.

.

.

.

Yep its Beths new Hippocampe All Terrain wheelchair. Makes going through mud, sand and off road a whole lot easier! Thanks to the A-T Society for giving us £1000 towards it.

I think M was having more fun with it then B though!

Vibes needed

Small ones maybe. B is going on a residential school trip thursday for a week to Vitalise, Churchtown, Cornwall. A fantastic trip with lots of outdoor activities including abseiling, kayaking etc and alot of fun to be had. So why I am so worried? Because since last augusts onset of seizure activity, if she gets slightly exhausted or unwell, the seizure monster rears its ugly head and I just know she will be getting less sleep/rest when she is there and doing far more than normal. Ok, nursing staff on hand. Its fine, really...it needs to happen, first trip away without me since these bu**ers started..has to happen...
I just hope she will be ok...everytime i think she is doing ok, it happens again, slightly unwell in the holidays and she has a complex partial seizure in the garden centre...

anyway fun takes precedence right? she needs to have fun...and i have no doubt she will...just keep her safe all those miles away from me please. If it happens, please let someone give her lots of cuddles and tell her its ok.

me and my girl

Little things

make me cry....sometimes when I am feeling proud, happy or sad.

Today it is the fact my darling daughter who probably in another body with another (healthier)brain would not be asking me

"Are you picking me up after lunch or before lunch friday?"
" about 2.30" was my response
"Is that after lunch or before lunch?" is hers......

14, not able to tell the time...

sometimes little things...

Touch wood

I haven't been able to post a post like this for as long as I can remember BUT right now I feel I need to share. Although I still am seeing small signs of degeneration physically, for the first time in a long time B is WELL. I haven't seen any seizures for a few weeks, she has energy for the first time in a long time -she just doesn't seem so tired all the time and her headaches have been few and far between. No vomiting either. Proof is in the fact she isn't going to the GP at school every week like she was.

I am right now just holding on to that because it is really precious to us.

Keep it up babe
xxx

She makes me laugh

B occasionally sends me emails from school. They are usually short, sweet and a bit abstract if you know what i mean. Yesterday she asked me how I was. I replied with "not too bad but feeling sick". She said in her response - "do i have to look after you then". I responded with "yes, you have to feed me grapes :)"

her email response tonight was

" i wont feed u grapes no way man"

:)

For you

Oh how I laughed at this

and laughed and laughed...in fact I still laugh when I think about it...

Watch a couple of times, with sound up...you need to look at the baby but its the mum's reaction that just gets me every time

Love it!

One more exam done

I passed my Year 2 Semester 1 Nursing exam today. It was the one we were supposed to have the day it snowed. Approximately 200 presentation slides on child development from every week of gestation through infancy, pre-school, school age and up til adolescence, throwing in a lot of psychological theories.....It was a lot of information to learn. Considering the amount of stress we had been under recently I was quite surprised I did as well as I did and best of all - my B+ may become an A. The online exam system can't cope with reading typed in answers if they aren't showing exactly as they expect so my ones with commas, etc will hopefully give me the few marks to get an A- at least. Otherwise B+ is great anyway!

Now that two things on my stress list are more or less ok I am going to drink mucho wine tonight and enjoy it!

Well done to all my fellow nursing students who passed also and commiserations to those who didn't which I don't think was many thankfully.

I don't think you ever get used to that feeling of pre-exam fear or the extreme feelings of relief once its over. It takes me way back!

You just gotta laugh right?

Ten Things I would like to do before I am 40

(which is in 2.4 years btw)

In no particular order.

1. Get hitched to M cos I love him v much
2. Qualify as a registered children's nurse (hopefully in 2010) and
3. Get a job as a children's nurse
4. See B safely finish secondary school
5. Reach a glass half full status
6. See my big sis become 40 before me ..tick tock..:)
7. See three of my closest friends have one (or two) babies or at least be pregnant.......
8. See the rest of the Twilight saga films...mmmmmm
9. See all of my friend's children who have special needs age by two (.4) more years.
10. Become a tidy person...ok that one is just WAY OUT THERE!

x

Update

So paediatrician thinks that the spots on B's legs are unusual and doesn't know what they are so sending to the dermatologist. Been there for 5 weeks. Just turned up one day and haven't gone since! Note the purply legs too.

and she believes that the protein in her urine is nothing to worry about and is orthostatic proteinuria which basically means you get protein in your wee when you stand up and sit down?!

But is going to do a 24 hour urine collection to check..

Tuesday B tried out the hippocampe all-terrain wheelchair..This nifty chair can go on sand, off road and will make it alot easier for us to go out and about. Don't get me wrong it still requires some strength but it will be easier than our current resources. It even has a little ski that goes on the front for snow! Fingers crossed we can get the £3000 funding required for it. Will open us some new doors for us.

The beast and the beauty

The beast - B's condition, her never ending list of symptoms and mysteries.

B's weekly urinary dipsticks show protein. Have done most weeks since her Christmas hospital admission. Week before half term, it didn't. Yeah! Then yesterday it did. I think its about time I pushed for someone to look at that. What with that and her strange leg rash, it feels a bit like something is brewing and I am scared. My intuition has not let me down before and that's why I feel a bit scared. and just tired of the worry and second guessing.

Hey ho....on the bright side - the beauty: my wonderful gorgeous daughter with her new (and expensive) beautiful hair colour/cut.

Douze, mon cher, douze

Beaucoup d'années, beaucoup de souvenirs.

Je t'aime de tout mon coeur

x

Special Needs Cat?

Monty in B's Convaid Cruiser....

He is "cruising" for a bruising

Parents day

Every half term, B's school has parent/therapist/teacher day where you get 15 minutes with any of the forementioned you wish. It is also a great opportunity to catch up, get progress reports and see how B is doing generally.

Today the main feedback was "she is lovely your daughter". "really starting to come out of herself" "lovely sense of humour, still a bit shy in group situations but getting better" "a pleasure to teach" " a lovely girl" " she will do well in her ICT entry level" etc etc....

and best of all: " a real credit to you"

When we found out about her condition and what was to come, I lost alot of my dreams and hopes for her. But 6 years later she is still able to show me that dreams and hopes can come in different forms and I have every reason to be proud of who she has become and is becoming.

well done B

Inclusion at its finest

Found this picture in the goodbye book made by B's old mainstream school class before she left to go to Treloar, her special school..every page had a special message from each of her classmates and the last page had an A4 size pic of this...This is her last sports day there when she was 10...the year she became a full-time wheelchair user. Look at how well they included her. They were fantastic.

It was the end of an era and the start of something that would make her into the beautiful, calm, brave and funny young lady she is today.

I cried when I saw this - for what was but I am actually my feelings are more like pride right now.

and my daughter is one of them

World Rare Diseases Day - February 28th 2009
http://www.rarediseaseday.org/

New meaning of hoody

I just love this picture, taken yesterday. To me she is always beautiful.

My other child

People think that because B is at school in the week that I am child free. But then some of them haven't met my maine coon cat Monty and those that know me well know I am a bit besotted with him.

Monty does not like to get wet and therefore absolutely hated the snow yesterday.

So mid afternoon he decides that he needs to go and go badly and believes this to be an effective litter tray:

ok so as we are missing an actual litter tray, I decided to succumb to his needs by becoming blue peter and making him one:

It obviously wasn't right........at bedtime he starts to go mad making his almost yelping noise consistently indicating something is wrong and in this case i figured he needs to go and go BADLY!.

So in my nighty, and wellies at 10.30pm , I went out into the garden and did this for him:

all the way to some earth..coaxed him out the back door....he gingerly made his way to the patch, sniffed it then promptly walked back in the house again.

I went back to bed.

5 minutes later more yelping, running around and cat calls of I'M DESPERATE

So after my BF refuses to help, I get a moment of inspiration and get my wellies on and my coat again and find some soil in a bag under tons of snow and fill an old tray with it....TADA!

I go back to bed hoping he will use it now...to be followed 30 seconds later by him.....

I guess he had just lost the urge........PAH!

never mind, today it still looks like this.......so today he may be comforted by my efforts

Whitewash

Today I woke up to this:

Good timing, was supposed to be having an exam this morning at Uni 17 miles away. Roads are a standstill as well as public transport so its been cancelled. Oh dear.....

and then my snowy white cat went out and we found her like this - in her snow cave aka a snow covered stool.

Hope B is having fun at her school too!

Off for a pub lunch soon...snow = SUCH a pain :)

A touch of Burgundy

Today I received something in the post which made me smile. I have had a bit of a yucky week with one thing or another and one day involved a very weepy phone call with a friend of a child with special needs whom I don't see very often. That one chat showed me I wasn't alone with my raging emotions and helped me alot.

She knows that I am trying to cut down my wine drinking and M and I are not drinking at home unless entertaining. So today a little box smelling lovely comes through the post. She has sent me a candle. It is called Burgundy - with lovely words including "maybe a candle named after a wine might be a good substitute. It will last longer". Bless her.

Thank you to you xxx

a peep into the future

Today on my placement I looked after a young girl who had developed sudden leg weakness and needle like pains in her feet and hands. It was discovered she had a peripheral neuropathy. Hers can be treated. My B's cant. What I glimpsed was a view into my daughters future as this is what she has to come and it scared me.

Pain at touch of the feet and legs, not being able to bear clothes and super sensitive. Shooting pains like needles. Not being able to weight bear at all. This is all coming for her. It is not me being pessimistic, this is me being realistic. The tingling in her feet has already started, she is sensitive to temperature especially water. Yes I cling to hope that the little known about her condition will be wrong, yes I do, but I see the changes and I am learning more about the brain and the nervous system and in my heart I know its not wrong. I am glad it slow progressing because it has allowed her to adapt more easily to the changes. I just don't want her to be in pain.

Today she tells me she has been having headaches this week and feeling sick but has not told anyone. The problem with working on a neurology ward is you just know too much sometimes.
At least now its over and perhaps I can have a bit of head in sand again for a while.

One less balloon

A few years ago someone once told me that they did an exercise with a group of parents who had children with special needs asking them to hold a balloon for every professional involved in their child's care. Most had over 10, some had over 20 or more. When I held my virtual balloons for B we had 30.

This week for the first time ever, we have been able to (partially) pop a balloon. B saw her orthopaedic consultant about her spine. She has postural scoliosis (spine curvature) and kyphosis (shoulder hump)and we have been working hard on her seating and support the past couple of years to prevent it becoming structural and therefore permanent.

So this week her lovely consultant has advised that he really feels that B's spine will not get worse and that he no longer needs to see her on a regular basis but will be available for open access if anything arrives.

A big WOOO HOOO from us here! and can you hear that???........

POP!

She always makes me smile

Yesterday I had a 12 hour shift at my nursing placement. M asked me the day before if I had to do normal shift hours at a weekend. My reply was there is no such thing as weekends in nursing. Unfortunately it means that I do not see B much and that is hard and I feel guilty for it. I know she will be lying awake waiting for me to come home before going to sleep so I try and get my handovers done first so I can get home quickly.

Last night I got home and walked into her room. She got all excited about something, doing her semi-screech that she does and knocking everything off her bedside table with her ataxic hands trying to find something.

Then she found it and it was this:

If you cannot read it, it says " To mummy, well done for working so hard love Beth"

and she had bought me a costume ring from the shops too.

It made me well up and showed me she doesn't hold it against me for the things I have to do which take me away from her.

Love her

x