03Dec07 - Changing Rooms

Adaption of your home is something that all families in our position have to face at some point and initially it was very difficult for me to accept. We are now at the stage where builders are coming round to do their site visits before they submit there bids for the work. This has made it very real and it is only going to be a matter of months before the work starts. Having had some time to get used to the idea we have decided that we are going to make the most of it and do as much as we can to make it a lovely place for Lucy to be. Of course we will probably decorate it with a nice girly theme, probably pink because all little girls want pink bedrooms (I think), but we have started to think about more specific sensory ideas. Sensory equipment is not cheap as you will find out if you look through the various catalogues, however it is likely that Lucy is going to spend a lot of time in her new room and it will be really good if we can have a proper sensory room in the house for her. Most of Lucy's vision is in the upper right quadrant so when she is lying in bed she is looking back and to the right. We would like to create a starry night affect with fibre optics on the ceiling and a wall behind her bed which she can enjoy while she is waiting to fall asleep. At the moment she spends an hour or two every other night staring into the darkness and if she had nice twinkly lights to look at I think she would really like it. We have also thought about rotating mirror balls and also a projector which projects slowly rotating images onto the walls and ceiling. If we can also use black-out blinds on the windows then Lucy could use this during the day well. Normally you save up for when your children leave home, go to university or maybe even need their first car, but with Lucy it is more important to provide stimulation and enjoyment for her now. We are still at the ideas stage and are not really sure what we can and can't do. It would be really good if there was someone that could come and show us different options or even design the room for us but I don't even know if such people exist. We will probably just have to use that universal consultant, "Google" and work it out ourselves. Its no big deal, we have been ICU specialists, Physiotherapists, Care Workers, Paramedics, we can deal with epileptic fits and know what dozens of medicines do, so why not Sensory Room Designers as well. At least it has given us something positive to think about and I really can't wait to see what we manage to do with Lucy's room and especially watch her little face when she sees it all for the first time. Any ideas would be gratefully received!!

02Dec07 - Family Sunday

Lucy has been struggling with a phlegmy cough for the last week. It has been worse during feeds and when she has her medicine. It is difficult not to get frustrated when something like feeding, which has recently become quite easy, suddenly gets difficult again. It has been like stepping back 2 years when every feed was a marathon battle of will and endurance. There has definitely been some improvement over the last day or 2 and at least her appetite is still fairly healthy. The worry with all the coughing is that she develops another chest infection which would not be good at all. I suppose that this may be a seasonal problem that we will just have to get used to.

For the second Sunday in a row we jumped into the car and made the short trip to my parents for Sunday lunch. Lucy's Aunty Nicky and cousins, Emily and Ashley were also visiting so she was due some extra cuddles. I sometimes think Lucy just moves through life from one cuddle to the next.Emily has always been especially eager to cuddle Lucy and Lucy would sit happily with Emily for as long as she could get away with it.
It is so good for Lucy to have regular contact with all her extended family because it gives her the chance to form lots of different kinds of relationships. She will definitely behave differently with different people. It is almost predictable that if Lucy's girl cousins pick her up and play with her she will play happily for as long as they want to. Lucy is a people person and just loves the noise and chaos of a family get together. It is also great for us because Lucy is always entertained and we get a break for a few hours.

29Nov07 - The Badge

Following the many requests for pictures of "The Badge", this blog is for Joshua, the 2007/2008 Head Boy of St.Saviours Junior School. Lucy could not have a better big brother, she absolutely dotes on Joshua and just loves it when he plays with her. I am so pleased that Joshua has been made to feel special in this way, especially as the whole school voted.

Congratulations Joshua (Head Boy), you do deserve this!

These are just some of the comments and messages for Joshua:

"Well done Josh!"

"Well done Josh - you are a star !!!"

"Congratulations to Josh....what a feather in his cap and well deserved I am sure. From what you write he sounds a most extraordinarily responsible and thoughtful boy for his age."

"Well done on being selected Head Boy at your School. You are obviously a popular and respected boy.
Your Great Uncle thinks you are a star.
Well Done!!"

"Congratulations Josh!!!Well done on being head boy, I hope you have lots of fun in year 6 because it's a really good year before high school!"

"Well done Josh. Head Boy my my what an achievement. Feel Proud, feel very Proud. You deserve it."

Too often at home Joshua is left on his own or simply neglected but he never complains or blames Lucy. In fact he always manages to put a positive spin on everything. He has always accepted Lucy unconditionally and it is clear that he loves his little sister very much.Lucy told me tonight that she thinks her big brother is brilliant and she is so proud of him.

27Nov07 - Grandparents

I had to leave early this morning to catch the train to London so my parents were on hand to take over and sort out Joshua and Lucy. They are so good at just stepping in whenever we need them. They have heard a lot about Lucy's school but it was the first time that they had actually been inside. I told them the routine and made sure that they knew to wait until 9:00 to take Lucy in. Their first impressions were the same as mine, what a fantastic, friendly place. They were welcomed by an "extremely nice man" at the door who greeted Lucy by name and ushered them into the school. They thought he was one of the bus drivers but when they described him to me there was only one person it could have been, Richard the headmaster. I think Fairfield School must be the only school where the headmaster of the school walks around with a beaming smile on his face welcoming the children into school. When they got to Lucy's classroom they were welcomed by Jane, Lucy's teacher ("Isn't she nice" they said) and got to meet some of Lucy's classmates. They were really taken with one little boy who toddled in with his walking frame and actually said hello to them. Jane offered to show them round the school tomorrow if they go in a little early which is so nice. Nothing is too much effort at Fairfields. I am glad that they have had the opportunity to see where Lucy spends so much time and experience the brilliant atmosphere that Fairfields provides.

I didn't arrive home until about 20:00 and Lucy was already falling asleep. There was a hot meal waiting for me which was so nice and I decided that it was too late to start Lucy's exercises, so today she and I have had a day off. It is a shame because I am really keen to keep up with the therapy every day, even if there is not enough time to fit in the whole program. Today I guess it just didn't work out, but then if we start to treat it like too much of a regime it will become a burden. Sometimes there are just not enough hours in the day and I am not going to feel guilty about that. I do feel like I have missed a day but work had to come first unfortunately. Joshua still had his school uniform on when I got home and I quickly realised why. At school this morning he had been presented with his Head Boy badge in front of the whole school. At the end of last term he was voted Head boy by the all children at the school. I am so proud of him and he could not be more pleased or proud of himself than he was tonight. He deserves it and it is so nice that he can now feel a little bit special for the rest of the school year. It was a long day away from home but at least I didn't miss seeing Joshua and Lucy before they went to bed. I am just thankful that my parents were around to do what they do best.

26Nov07 - Time

It was about 22:00 today before it struck me that there has been no time at all today. How many days pass that merely consist of moving from one task to another? Whole weeks can go by like this and at the end of it you look back and realise that you can't remember having any time at all. Today started at 6:00am getting Joshua and Lucy ready for school. Well actually getting Lucy ready for school because Joshua pretty much takes care of himself these days. About 5 minutes before it was time to leave I realised that I had not shaved, brushed my hair or teeth, I had no time. I arrived home after the school run at about 9:30 already late to start work (luckily I was working from home today). The next time I looked at my watch it was time to think about picking them up again. 18:30 back at home, medicine, bath, supper and then exercises. Again Joshua took care of himself. I had to get him to do some maths homework while I gave Lucy her supper. I finished feeding her at about 19:30 and gave her 20mins before starting her exercises. My parents arrived as they are looking after things tomorrow as I have to go to London to work and my mother offered to cook which was nice. While she did I started the exercises and finished them after we had eaten. I didn't quite manage the whole program and finished at 21:00 so I could put Lucy to bed. Joshua made his own way to bed and was waiting to have his light turned off. There were a few minor arrangements to sort out for tomorrow like the car seat and pram etc which were still left to do before having a sit down and a cup of coffee to end the day. Now it is late but I feel like I need some time to just sit and unwind although probably I should be in bed recharging for tomorrow.

I can remember a time when I used to enjoy just sitting doing nothing and thinking but this just seems like a waste of time now. Only when it is late and quiet do I allow myself this luxury. It is so easy to get consumed by the constant race from one duty/job/chore/obligation to the next that you forget why you are doing it and when this happens you find yourself questioning what you are doing. Life becomes a bit like a job and I don't care what anybody says, jobs can be enjoyable but they are not about having fun. We work so that when we are not working we can have fun. The problem is is that when work takes all your time you are too exhausted to be bothered with fun. I am probably the worst culprit for taking life a bit too seriously and not making enough time to have fun. I guess that makes me a bit grumpy sometimes and leads to rambles like this. Listen to me moaning, I have only been left alone for a few days, Dawn has been doing this for 3 1/2 years!

25Nov07 - Dad's Sunday

With the promise of a good Sunday feed we piled in to the car this morning and went to visit my parents. Lucy had to eat first so I took the splattering while Granny finished off the Sunday lunch. Feeding Lucy at the moment is like it was a couple of years ago, there always seems to be more food coming out her mouth than you put in.I eventually managed to shovel it all in and as soon as I finished she stopped the arching and coughing and settled down on an improvised bed in front of the TV. She watched it for a while before closing her eyes for a Sunday afternoon nap.She has been a bit constipated for the last 24-36 hours and I am sure she has been in some discomfort. It always makes her a bit grumpy. Sometimes we have to help her out which is not the most pleasant job in the world but up until this afternoon we were still expecting. After lunch I took Joshua to the cinema to see Stardust while Granny looked after Lucy and when we got back we received the happy news that Lucy had managed to part with her discomfort or at least some of it. This should make her slightly better company particularly at feeding time. I still had not had any time to do Lucy's therapy exercises so decided to get home and do them after bath and supper time. She actually behaved quite well and I managed to get through the whole set while Joshua played Buzz on his playstation.She must have been tired because 15 minutes into the exercises she fell asleep and stayed asleep for at least half the time.By the time I finished it was nearly 9 o'clock. Now Joshua and Lucy are both in bed I can start on the ironing and maybe even empty the dishwasher. This single parent life is no picnic.

24Nov07 - Back to it

Lucy has just about got over the fun and games of the last 2 weeks apart from a niggling cough that is taking some shaking. I decided that today would be a good day to start on Lucy's new Scotson Technique therapy exercises. It has already been over a week since we were at the clinic and I had to sit and study the therapy sheets for 10 minutes before it all came back. There are two separate patterns of exercises to do for the first two months. This first set of exercises combines many different hand postions which then repeat for different locations on Lucy's chest and abdomen. Once I started I didn't find it too difficult and soon got into the swing of it. Lucy was quite relaxed and eventually fell asleep which made it very easy.It is always difficult to do very gentle movements when Lucy is squirming and arching like a snake on hot coals. The whole set of exercise took approximately 1hr40mins which is acceptable although it is going to be tricky to fit the whole program in on school days. Today I did Lucy's front so tomorrow I will do her back which is not as straight forward because Lucy is not too happy about lying on her front. I will have to put up with the squirming and moaning until she gets used to it again.

Lucy has been more like her old self today which has made it a lovely relaxed Saturday. She has been making her little noises again and responding nicely to Joshua when he wanted to play with her. Lucy even responded to Dawn's voice on the phone when I put the handset to her ear, by making some cute little noises. She definitely recognises her mother's voice. Feeding has been a bit challenging......I think I am wearing more food in my hair than Lucy actually ate today. I am sure I saw her smirking at me at lunch time when I had fruity chicken casserole snaking down my neck into my T-shirt. Despite the cough and the spitting, not one of her best traits, she did actually eat well today, which gave me a sort of "job done" satisfied feeling. I put her in bed quite late at about 20:30 and then settled down to play Star Wars with Joshua. He has been brilliant today and I think he also enjoyed just having a quiet day at home. I did make him practice two test papers for a school entrance exam he has next week but apart from that he has pretty much pleased himself. So it was nice to spend some Dad time with him tonight flying star fighters in a galaxy far, far away. I probably let him stay up too late but he is fast asleep now in my bed, imitating a duvet hogging star fish with a nasty involuntary kicking reflex. Assuming that I make it through the night I am looking forward to another good day tomorrow.

23Nov07 - Home Alone

For the next few days I have got the children all to myself. I woke this morning to the normal school routine of kicking Joshua and Lucy out of bed, getting them dressed, making sure their teeth are brushed and sorting out breakfast. Typically I didn't give myself enough time, so it was all a bit of a rush but I actually enjoyed being around to do it. Lucy is such a darling in the mornings. When she wakes up, you wouldn't know that she had cerebral palsy at all. Just like anybody, she stretches her arms right over her head and has that look on her face that says, "Aah Dad do I really have to get up now, just give me a few more minutes". She is half asleep when you get her dressed and we have found that this is the best time to brush her hair because she hardly complains at all. It was all the usual panic, realising that she didn't have a school shirt and rushing downstairs to iron one, struggling to put clip in her hair to make her look respectable for school, running out of time to shave, but I am not always around in the mornings and I didn't mind a bit. Joshua was brilliant and was downstairs eating his breakfast before I had even got Lucy's ready. He always acts so responsibly when he knows it is important to help out. We had a good chat on the way to school about what video game would be the best to make and what it would be like. For the first time in ages I took Lucy to school on my own which was also nice. I always get such a good feeling walking into her school. It is just such a friendly, warm place where everyone is always glad to see you and never short of time to stop and chat. I explained that I had got Lucy ready and had done her hair and of course they said straight away that they could tell but were very nice about it. I guess I can only do my best. Lucy had been sleepy in the car and still looked like she wanted to go to sleep but I am sure that her teachers had other ideas. When I read her report from today she had been on the trampoline and then gone for a swim. In her book it said, "She set off with a kick, then got so relaxed that she had a snooze". She was still tired when I picked her up from nursery and it was a real struggle to keep her awake after her bath to give her supper. This is what I had to deal with after her bath!!I managed to be loud and jolly enough to keep her awake and she finished all her weetabix supper before passing out in my arms. I really love it when she does this not only because it makes bedtime so easy but it is just the feeling of her asleep, happy and content in the last cuddle of the day. I am looking forward to another good day tomorrow.

21Nov07 - Welcome Home Dad

I have been away from home for a long three days working in Holland and have really missed the children. Its funny, sometimes you are quite happy to get a break but as soon as you are away you miss it and want to be back.

In the early days it was a relief to escape from all the mess and I didn’t really want to be at home. It took such a long time to really get to know Lucy and at first it didn’t feel like I had another child. It was all give, give, give and it seemed like she was never going to give anything back. In fact the whole thing was hopeless. Trying every day to get some glimmer of a response, something that I could work on, some way of Lucy showing me that she knew I was there or something that would say to me, “Don’t give up, it’s not all as bad as you think”. For so long, I believed that Lucy would never know that I was her father or even know that she was part of our family. As I got to know Lucy and she developed she slowly started to respond with noises and movements that I learnt to recognise. When this happened it changed my whole outlook but something Lucy’s consultant said still played heavily on my mind. When Lucy was about 8 weeks old, I had asked the consultant what Lucy’s life expectancy was likely to be. She explained that children with Lucy’s complex problems were much more susceptible to all sorts of nasty things that I can’t really remember, particularly chest infections, and had gone on to state that Lucy may not live past 3 years old. I can remember not dwelling this too much at the time but afterwards and for the following three years I thought about it a lot. I could not look beyond her third birthday and in a way I wanted to skip this period of my life. I often pictured what her funeral would be like and how I would feel visiting her tiny little grave. I wondered how all of us would cope and how we would ever be able to move on. Sometimes it made me feel incredibly sad and other times I will be honest it was more a feeling of relief. I guess relief because everything seemed so futile, Lucy’s life was such a struggle to begin with and I just could not see past this 3 year brick wall. Of course thinking this way brought with it intense feelings of guilt because nobody should think this way about their own children. However Lucy grew stronger and stronger and it became clear to me that she was going to be healthy. I knew I shouldn’t put a limit on her life with us but the 3 year thing was still a mental barrier for me. I always half expected her to get sick and worried whenever she was that it would progress into something she would not be able to overcome. I suppose because I knew I couldn’t fix it, I retreated from the whole situation and found comfort in escaping from it. It was a horrible way to feel and I wish now that I had made more of that time. Lucy has proved everyone wrong many times over and I see her now as such a strong, happy little girl and I would not change her one bit. Her third birthday was a huge moment for me and when it came it brought an overwhelming sense of relief. I said a big thank you prayer and began to look forward to her next one. The future will bring whatever it brings with no limits or preconceptions. I will still worry like any parent would but I am just glad to be past that 3 year hurdle.

Now when I am away I really miss not being around to see those little smiles and half giggles that she gives me. I know now that she definitely knows who her father is and we have got such a very special relationship, which I never expected to have. I sneaked into her bedroom at about 22:30 when I got home because I knew she was still awake. As soon as I spoke to her she moved her arms and I could tell she was listening. I gave her a little kiss and she gave me the biggest smiles. My heart melted and I had to get her out and have a big cuddle. It will certainly go down in my memory as one of the best welcomes I have ever had. Standing there in the dark, with Lucy in my arms, I knew it was good to be home.

16Nov07 – Back to Reality

Lucy is still not very well and so we booked an appointment at the doctors this afternoon. Before the appointment Lucy had a coughing fit which rally upset her. You could tell that she felt panicked by all the coughing and this upset her even more. By the time we got to see the doctor she was inconsolable which made it quite difficult for the doctor to listen to her chest properly. She began to talk about referring Lucy to the hospital which we thought unnecessary but she was obviously influenced by how upset Lucy was at the time. In the end she changed Lucy’s antibiotics to cefalaxin which has worked in the past when Lucy has had chest problems and hopefully it will work again. It is still to early to start the therapy exercises and we will probably wait another few days until Lucy has fully recovered.
After a long week in the south of England it was nice to go to my local pub tonight, talk rubbish, play darts and unwind. There is a group of guys who normally turn up on a Friday night for some man therapy and escapism. As it was Children in Need night tonight we were playing darts for money and all the winnings were going to Children in Need. It came to the end of the night and the landlord asked if we were having another game. The next thing that happened took me completely by surprise and spoilt the whole evening. There was a guy who is not normally part of the Friday night group and he said when asked to put his money into the pot for the next game, “Why not, its for the spackers anyway”. I am afraid I could not hold my tongue and told him how offensive that sounded and that actually my daughter is “one of them”. Rather than back down and apologise he brushed it off saying it was just a generalisation. I had to tell him that it was a very offensive generalisation but realised that there was no point taking it any further because idiots like that have their own opinions and there is no point trying to change them. By this time the atmosphere had completely changed and I just felt uncomfortable and isolated. It saddens me to know that there are people out there that feel comfortable using language like this in the company of others. Maybe they think it is “big” or that they will get a laugh by saying it, but it took all my energy not to punch him in the mouth. Knowing what kind of person xxxx xxxxxxx is, it would have made no difference at all to his point of view, but maybe I should have done it anyway because it would have made me feel a whole lot better. I could hear Dawn saying to me, “Don’t try to change the world one person at a time”, and she is right. People like this will always be part of our lives and we just have to rise above it in the knowledge that they are missing out on the amazing experiences that are now part of our every day life. They will never know the joy of having somebody like Lucy in their lives and in a way I pity their narrow minded, self centred view on life.