Missing you

I miss B today. I missed her as soon as she left yesterday. I felt guilty for going away although most of it she was at school anyway. I miss her even before she has gone. She has that quality that makes it that way. When she goes, the house is quiet with no singing coming from her room, no abstract questions from her and no one word answers to mine. I walk past her room and my heart lurches because it is empty. For a fleeting moment, I feel scared of the future and a permanently empty room and I feel sick with grief.

Sometimes I just turn on her music to take some of the quiet and those thoughts away.

Roll on Fridays when my B comes back.

and a thanks

to those people who help us as a family and in particular this week - My mum and B's godparents. Thank you for looking after B and for wanting to. We love you.

Mind over Matter

Okay so Skiing isn't my thing. I tried desperately hard to overcome my fear but as soon as I got a little higher or it got a little steeper, I couldn't cling hard enough to the nearest person. Most of the week I seemed to be in tears. A twisted knee also put paid to multiple attempts at bravery. The final straw was taking M out and then both of us taking a beginner out whilst hurtling down the slope. She was shaken, I ended up with a six inch bruise on my elbow and a few frustrated expletives. and that was that.

Will I try again? I would hope so. I just don't know right now. Sometimes I think inflicting more grief and stress on an already full life is just plain silly. Do I want to keep up with the Jones? No but I did want to do something that I know M wanted me to do so much. But I also promised myself I would not get miserable. And I was.

The rest of the time was mostly lovely. The snow, the night-time lights, the horses and sleighs, even studying in a quiet moment in the catered chalet we were staying. An emergency situation where my basic student nursing skills were put to the test also helped my sometimes low feelings of self-worth. (the wine given to me in thanks helped too! )

What I did learn though is something that hurt more than my knee and my elbow. That one of the most precious people in my life needs me more than I have been giving. To you I promise to give more because I love you.

Eye Report

Attached is the report from the Professor. Alot of it wont make sense to you all but have a read and have a look at the picture at the bottom if you can (also below). The top reading is where the object was that beth was looking at, the next two are her left and right eye. If she no eye movement issues, the reading would look like the top one. As you can see, they are very ziggy zaggy which shows how her eyes are really ping ponging.

Great data for me to review and her neurologist.

http://docs.google.com/Doc?id=dgk2q6v9_2289s9sqcj

Eye Eye

Today B and I went up to Great Ormond Street Hospital by train to see a retired professor of neuro-ophthalmology (eyes) who has an interest in oculomotor apraxia -the eye movement disorder part of B's disease. He didn't need to see us, I emailed him last year and he was delighted to make a one off for us. The idea being that after so many years of people saying - I am sorry I don't know that we actually spend time with someone who does and log a baseline for someone to take on and monitor regularly.

Today he has told me he has met many children who were born with oculomotor apraxia but B is the first one with a degenerative disorder and of her kind - AOA1. B's vision was tested by the Orthoptist, her movements measured electronically by an eye movements research fellow and examined by the Professor. The report will tell us more but from what they could see, B has limited ability to look to the left and right seamlessly and up and down. It was quite interesting seeing him trying to get her to follow a pen. However he thinks she is adapting well.

He also told me that B has a very unusual thing happening. Those with oculomotor apraxia move their head to compensate their inability to move their eyes so well and the eyes follow. If you are looking to the left your iris/pupil are in the corner of your eye and stay there. B's do not. She has a rare problem by the looks of it with her "oculomotor neural integration". Which means her eyes will move in their slow steppy way but rather than stay in the corner they bounce back. He said how that will effect her in the future, they don't know. Its all tied up with the brain stem apparently.

I will share the key parts of the report when it arrives but as he is retired now, he wanted to ensure that we had a regular Opthalmologist to go to as her experiences with another hospital have been poor due to lack of knowledge on her disease. So B will now be seen by one of the Opthalmologists there - Isabelle Russell-Eggitt - who incidentally a few of my friends and one member of my family has seen. We will see her annually. Better than nothing. They took video of B's eye movements (in a proper recording studio it felt like) in order to compare with next time we go.

B was absolutely brillant there, we were there for 2.5 hours. She did everything they asked her to do without a fuss. The only complaint she had was on a list of rules she wrote to me on the train on the way up - 1) I don't like getting up late. (she means early).

And have I gained anything? Yes, the report will show more and I will post it. Most importantly, somebody is actually interested in helping her and monitoring change and in her extremely rare condition. Apparently they will share the video etc with a doctor in the US who also specialises and is interested in oculomotor apraxia.

So I was worried we would be wasting their time but I don't think we did.

And the good mood continues

I think this is a pretty unique experience for me. Feeling good for two days in a row. I actually feel quite positive today. I know that may seem a silly thing to say but honestly most days I struggle with something or another. If that makes me sound weak or pathetic, sorry but its the truth. Anyway today was good.

I spent a day with 20 adults and 21 kids at a special needs centre that our charity hires out for our members and their friends every now and again. I really really enjoyed playing with the kids and catching up with the parents. I had the opportunity to cuddle, feed and help with a 5 month old who weighs just over 2 kg and be a child again with some of the kids. I have to say it was just a really good day.

I made a decision yesterday. That I wanted to spend some time overseas in a deprived country helping children and families in need using my acquired nursing skills. Just for a couple of weeks when B is back at school after the summer holidays and before I have to go back to uni. Why not? I have some skills, at the very least I can learn quickly. And I just feel its the right thing for me to do. Let's see how that one pans out.

I really feel that the change I have made to my career path has been the right one. I know its early days yet but it feels so wonderful to be able to help those who need it or to hand out the knowledge I have so far and make a difference. I feel it enhances what I currently do for the charity.

Or maybe I am just getting more soppy in my old age!!!

Feeling good today

Today has been a good day. I had a upper body massage to try and keep my neck pain at bay. Then had a really beneficial chat with a friend about somethings which made me feel so much better about stuff that is really hard to cope with. After that I attended a St Johns Ambulance Basic First Aid Course.

You may ask, why does a student nurse need to do that. Well I was advised that it may be useful. I couldn't say it was a complete waste of time but we didn't do what i thought we would - learn how to apply bandages, dressings and slings, that kind of thing. We did have to lie on the floor alot pretending to have fainted or to be unconscious though. I don't think I make a good unconscious patient. I keep laughing. I guess its nervous laughter (back to the church thing here). The rest of the class were in surprising awe at the way i just slipped my non latex gloves on (and then off) easily whilst they struggled. I guess there is some benefit from a) having a child with disabilities and b) having to wear gloves within a clinical setting as appropriate. And I am a dab hand at the recovery position. Some things from Uni training are obviously sticking in my brain somewhere.

So anyway, I know know how to deal with an insect sting, an animal bite, minor burns, cuts, grazes and bruises,fainting and choking etc. Just need to find some guinea pigs to try them out on...squeak squeak

Good friends coming round tonight, making a salmon nicoise and Beth has had a headache free day.

All in all, a good day

P.S. Thoughts going out to my cousin's 7 year old who had eye surgery yesterday at Great Ormond Street. Things didnt go as expected and he now has to spend five days with his head tilted forward to avoid permenant eye damage. Love to him and his mum xx

Is bingeing on cottage cheese strictly classed as binge eating?

Ok so in order to stop my salopettes popping open on the ski slopes, I am having two weeks of being good. No takeaways, reduced amounts of alcohol (boring), and monitoring of all other items. By the way thanks to Carol for providing me with some inspiration and tips to help me succeed on my quest.
So I am doing fine as long as I don't think about food which isn't easy when you are a food addict. Once I open the fridge door, that's it, I keep going back for more - a handful of ham, a baby bel, a dairylea light, a carrot, a jar of cockles (my fav) and cottage cheese with chives. The apples in the bowl just don't have that je ne sais quoi about them like the stuff in my fridge. Let's face it, its not exactly chocolate eclair and extra mature finest cheddar is it? So surely it can't be wrong to eat copious amounts of it?
Whatever happened to my extra fast metabolism I used to have as a girl in my twenties. It is terribly unfair to be such a big fan of food and not be able to eat alot of it! Some one made a mistake in that genetic set up.

I think it would be quite good to be a cat actually. No choice except for tuna, rabbit with peas or beef in gravy and perhaps a few catnip drops every now and again to make you feel "happy".

Sounds good to me.

Jigsaw Puzzles

Yesterday I discovered the therapeutic benefits of jigsaw puzzles. My mum has done them for years (in fact she told me yesterday that shes still struggling with one I got her for christmas!) but its been a long while since I have dabbled. Whilst browsing through a charity shop I found two, 500 pieces, ok manageable and bought them. I am so glad I did. I had a horrible afternoon with a lot of tears and distress because of something and I just needed to switch off from it all. So I sat and started my puzzle. Gradually the border developed and then the little golden retriever puppy's paws. After several hours (back and forth I hasten to add!), I must have only put in about 50 pieces. Never the less, it is really comforting to see something build up from nothing and gradually come together. When you pick up a piece of the puzzle and it easily falls into place.

Doesn't happen that often in life. Usually it takes several attempts to find the right way. But when you do, the feeling is a teensy moment of great satisfaction and of joy. So yesterday I had 50 teensy moments and I truly needed them.

I see dead giant turtles

Ok, I know I am losing the plot now. I am afraid of the dark, I admit it and I have to have a light on somewhere upstairs so I am not in complete blackness. But I had got better. However the past year or so, I keep freaking out in my sleep/semi-consciousness. Usually its when M comes to bed and I am asleep. I must feel his body movement subconsciously in the room or getting into bed, and think he is a monster and start screaming. But sometimes it is the middle of the night and it scares him, let alone me. Last night I woke screaming because something was next to my bed talking fast to me. It was lying next to my bed and had a giant turtle body and a persons head. How random is that!? Previously I have seen a face less man and a ragamuffin girl, both standing next to my bed.

I didn't have cheese the night before I promise. It just makes me wonder what goes on inside my head. I am a vivid dreamer. In fact I could write a whole separate blog about my dreams. But these are not dreams, they are almost like hallucinations.

M just pats me on the back and rolls over whilst I lie and try to get my breathing back under control whilst hiding under the covers. It can sometimes take me hours.

So if anyone has any idea where this turtle man thing comes from, please do post in my comments! Or at least tell me I'm not a complete loon!

Just found out someone I know through the charity I help to run gave their new baby my name as their middle name because of me. The reasons why have me bawling. I wish I had belief in myself like they have in me. Nevertheless I feel honoured. I hope I have made a difference in this baby's mums life by some of the things I have done through the charity. She deserves it. All of them do.

Wipppppppppppe Out

Tell my knees and calves if was worth it please. Well I did it. I spent six hours on the slopes learning to ski yesterday at the snow dome in Milton Keynes -with real snow - and I did much better than I thought. I was up there with the twenty something lads keeping up with them whilst we learnt to ski traversely and turn so doing some nice S shapes down the slope. Hardest thing was getting off the conveyor belt at first, I ended up in many a weird position trying to do that! Getting up from falling down is really hard if your ski's are crossed and you have no poles to lean on and your tennis elbow won't let you put pressure on the bindings to release the ski boot.

So all was going well, my fear was under control and so were my skis. And then.....

I got on the stupid button lift.

and didn't manage to get off very well. The second time the instructor took us to the top of the slope. Timing is crucial - flip right ski out to right hand side before letting go of the button thing between your legs = FAILURE to get out of way of upcoming next person. I had to flip my self to one side and scuttle on my bum like a baby before it crawls! and then, off you go guys down this very steep slope doing what you have been doing. Ok, by then I am back to being petrified and succeeded in losing all control and skiing sitting on my skis downwards fast and wondering if I would stop. End result = one weepy scared woman who had lost her nerve. One glass of water later, I stuck to middle slope and practiced my turns for the rest of the day. The others went up to the slope from hell (in my opinion) and it was quite gratifying to see them losing it alot of the time!

Anyway I reached my goal. The last time I ski-ed I couldn't even step on a flat without freaking out. This time I pushed myself, kept up with the boys and went for it. And best of all, I was one of the good ones and not two of the worst. That felt great. Two weeks time will be real slopes. I can see myself back and forth on a little stretch for quite a while.

That's absolutely fine by me!

Now I need to stop hobbling.

Break a leg, well hopefully not

Tomorrow I am going to a learn to ski day in readiness for my ski-ing holiday in 3 weeks. I have been ski-ing before but have a massive fear of the slopes. So this is my last attempt at getting courage and becoming an extra on Ski Sunday.

Today I had a wonderful day. I met a friend in John Lewis whom I haven't seen for quite a while. We chatted and shopped and tried out a bum wobbling machine. It was nice to do something normal. Afterwards I went to see another friend and her little daughter who is 2 nearly 3, A, who has spina bifida and is in a wheelchair. I had such a nice time. T and I had chats and A and I enjoyed many cups of plastic tea with lots of milk and much sugar! A showed me her bedroom and her sisters bedroom which has been beautifully decorated since the last time I had been and we had great fun playing with various bits and bobs. I felt happy. Happy to be there and really loving spending time with T and A. It's days like today that enforces my feelings I have made the right choice in career change. Seeing A's wonderful smile and giggles as we played and knowing even if its different, that I had made a little bit of a difference to her day. It felt good especially since I have had moments seriously doubting my ability to be with children - can I cut it? Hopefully I can. I realise how much I love their company. I hope that comes across in the way its meant. I dont see A as a clinical case. I see her as a wonderful little girl with a lot of personality.

I may just buy myself a plastic tea set. I am sure it has great therapeutic qualities.

My 2008 To Do List

On the 31st December, I will look back and see exactly how many I have or haven't done of these things. Let's face it, with all good intentions, we never get through our whole to do list in our life. Each day, things get added and a few get crossed off if we are lucky. Priorities change and often to do lists get lost.

So here is my long-term list for 2008, I apologise if it seems boring.

• Completely blitz B's bedroom and try to convince her that she doesn't really need Baby Annabel anymore. We have managed to tear some of her large teddies away from her so also need to move on to some of the smaller ones. Luckily MacDonald's toys no longer frequent her plastic draws but a whole host of other small items do that require good fine motor skills which she does not have. So out they go!
• Sort out my "days before digital" photos and put them all into nice albums in chronological order. No doubt having a little weep at some and groans at others (of me with 80s clothes but 2 stone lighter)
• Clear out my larders and destroy all foods with an expiry date of 2002.
• Find a better filing system for my SK, B and personal stuff. It drives me nuts all that paper!
• Groom my cats at least once a week to avoid big clumpy knots that require sneaking up with a pair of scissors behind back and cutting quickly before they have time to miaow in protest. Easier with one than the other!
• Sorting out and tidying the upstairs Garage. OK so this is M's manly oilcan littered domain and I have access to the washing machine and tumble dryer but more often than not, my route is littered with DIY or Bike bit obstacles and frankly I think some organisation is required in there. Don't worry M, it will be a joint effort. And yes its upstairs if others are wondering if I meant that. When B took over the Garage to have a bedroom, I had to sacrifice one of our spare rooms so that M could still have his area to flex his spanners. Bless.
• Getting a new tent that allows us to sit inside with space around us if the weather turns horrible like it did last year. I want large but then with only three of us, is that ostentatious? Who cares, I have a need for wheelchair space and more!
• Improving my coping mechanisms. An ongoing exercise for me.
• Losing weight. YAWN. No ongoing exercise causes this problem!!!
• Getting to the 31st December with one years nursing training under my belt and a feeling that I am getting there

Right, off to tackle the penultimate one by having a large lunch.

See ya

I don't like mondays

Yesterday was an interesting day. At 9.30 I had my first nursing exam consisting of 2 hours sitting in a church in exam settings - you know the type - no talking, single desks, big clock in front with the second hand seeming to glare. I felt like I was 18 again. The exam was harder than I thought and the person who wrote it was obviously quite fixated with bones and sociology. And no disrespect to anyone but churches make me want to giggle. Its a nervous habit that I have since being a wee lass. I think its the quiet not the place. Well I know it is. I have a lot of respect for those who attend church regularly and get comfort and more from this. Sometimes I wish I was like them. Anyway the exam was hard but I think I should have passed.

Later that day I went to the hospice that B goes to. A lovely place where they really give family centred care. Reason for my visit? To see the counsellor. I saw her for several weeks two years ago when I had a breakdown. She was really helpful in helping me come to terms with my grief over B's disease and some of the feelings I was having. This time, its different and the need stems from something deeper which has been exaggerated for the past few months. A few hurts to heal and feelings to get in control. Sometimes it feels like I am still a child in a grown ups body. I expect we all feel this as we get older. The feelings may mature as you mature but some things don't. And these things I need to address.

Then my last event of the day was to have a steroid injection in my elbow to try and heal my tennis elbow which I have had since December and many weeks of seeing the osteopath has not fixed it. IT HURT! but only for a minute. I tried to watch because giving injections is part of my training but boy it was hard and I admit, I was a wuss. I felt faint.

Then I drank a bottle of wine - to celebrate my exam being over, to commiserate for my mixed up feelings and to reward myself for being brave!

Yes, I am currently ignoring the food intolerance test results that say I am VERY intolerant to brewer's yeast. Ignorance is bliss. It's true.

Phantom calling

The strange concept that your child is actually here when they are not. I hear her calling me from her room for days after she has gone back to school. It is so clear that I often find myself moving towards her room to see what she needs. If I analyse it too much, I wonder if she is okay where she is, if she is calling me, needing me and I am hearing her. Maybe. Hopefully not.
Perhaps it means I miss her. Which of course I do. Or I just come to expect it for a continuous period over weekends and holidays so when she is no longer here, it is a habit my sub-concious needs to break.

Whatever. I hope I continue to hear her for as long as possible. I like it especially when she sings.

When she gets off that bus

When B gets off the bus that brings her back from school on a friday evening, I wait with bated breath to see the state of her. A big B smile is a good sign, meaning she is feeling well, she is happy and glad to be home. Others can be variations of paleness, big bags under eyes, and a slumped body. I know within seconds of seeing her whether she has had a good week or whether her body is just plain exhausted. She isn't able to explain to me like you or I could how things are, how things have been and when she hasn't been great.

Last night, she drove towards the ramp on the bus and all I could see was a deathly pale face, slumped shoulders and a smile that was an effort to do. Inside we chat for a few minutes before she disappears to her room and puts on her music and computer. In her home communication book, B has been very tired in the mornings this week, B had her first horse riding lesson but had to finish early because she was so tired and got upset, B says she forgot to go to Physio to do some mey walking....I think B has had enough this week personally.

Then today, she wakes up with one of her headaches. After a few minutes she says its better, then half an hour later, its come back with a vengeance and requires migraine medication.
Her knees are weak, she cannot weight bear. An hour later, her headache is worse, the tablets aren't touching it. I have serious doubts about whether they are migraines or not but am going with the flow at present. Give her two ibuprofen and hope they work. What else can I do?

Her headaches continue to worry me. Her condition continues to distress me and I have to keep a light and cheery voice and treat her symptoms. Inside I just want to scream with the injustice for her and worry of it all.

My wish is that one day, she comes off that bus and says to me " Mum, I feel great today." She won't because she can't put her sentances together that way and express those emotions. She won't because I think we have got past the time when she felt great. I think on a good day she is just managing, on a bad day she just wants to lie down and sleep. And sometimes I want to join her.