29Jan08 - Stepping In

These days if I want to spend a day with the kids during the week I need some sort of excuse or take holiday which is no different to a lot of people. However this means I hardly ever get to do the everyday things that Dawn has to do, including taking Lucy to all her appointments. Today I had an excuse because Dawn was ill and needed to spend the day in bed, so I cancelled my trip to London to sort out Joshua and Lucy. I actually got an extra hour in bed which was nice. Today was a typical day as far as routine goes. Up at 6:00-6:30 and wake up Joshua and Lucy, get Lucy dressed, brush her teeth and brush her hair (can be the worst job of the whole day). Sometimes the first bit can be quite pleasant but it all depends on what mood Lucy is in when she wakes up. Occasionally I can get her dressed before she even realises that she has woken up. Breakfast is usually a challenge however and it is never advisable to get dressed before this unless you want weetabix all over your clean clothes. Today went pretty well and I actually had time for a shave before we had to leave for school. There was a last minute panic when Joshua remembered that he needed fancy dress for an after school club but apart that everything went smoothly. It was quite nice when I dropped Joshua off at school because when he opened Lucy's door to say good bye, she immediately started making little noises as if she was saying good bye back. She then gave him a great big smile but I was just too late to catch it with the camera.I dropped Lucy off at school at the usual time but only for an hour because I had to take her for an orthotics appointment at the hospital. By the time I returned to pick her up her hands were already covered in paint and she was waiting in her chair with her coat on. Lucy fell asleep while we waited for the appointment, although for a change we didn't have to wait too long. Today's appointment was to take casts of Lucy's legs and feet so that they can make her some new splints as she has outgrown the ones she has. Lucy wears splints to help keep her feet and ankles in the correct position.She has a tendency to extend her legs and point her feet down. If this were to continue uncontrolled there would be little chance of her ever weight bearing in any way. So the idea is to keep her feet flat by using the splints and train her feet to stay in the correct position. In order for the splints to have an affect Lucy has to wear them for 8 hours a day. It will probably be a permanent battle because of Lucy's high muscle tone but we will try anything that might help her in the future. Lucy slept all through the casting which must have felt cold and wet but I wasn't complaining because they did the whole thing with Lucy sitting on my knee.The hardest thing for me was having to choose which pattern to have on the splints. The choice was quite overwhelming, everything from leopard skin to butterflies. I knew that Dawn would be less than pleased if I chose the wrong ones. The safe option would have been to stick with the same ones as last time but that was too easy. The splints will be ready in a couple of weeks, watch this space to see if I made the right choice!!!

For the rest of the day I juggled work and children. Lucy seemed to know that I was trying to work because she wanted more attention than usual. I didn't mind because it is not often that I have her all to myself. In a lot of ways I enjoyed today, especially going to an appointment where I did not just feel like a "hanger-on". I know if Dawn had been there, all the conversation would have been targeted at her whether she wanted it to or not, simply because she is the mother. Today also made me think a lot about having to do this every day. For me it is unusual, a kind of novelty, but for Dawn this has been her life for the last three and a half years. It is nice for me to step in occasionally as it is no effort and I don't really see it as a chore but I know I would if I did it all the time. I guess it is healthy to step into one another's shoes every now and again.

27Jan08 - Busy Busy

It has been one of those weeks that just seem to pass without you realising it. I had a few days working away from home so the blog has suffered a little. Lucy has shown good signs that she is getting back to her normal self and we have been spoilt with smiles. We managed to get this picture of Lucy amusing herself with her impression of Princess Leia from Star Wars.Even her eating has been intermittently good although she still throws a bad one in now and again. We had a lovely day out on Saturday for my parents wedding anniversary with a trip into Sheffield for a Chinese buffet lunch. We caught the tram into the centre of Sheffield which I think is a first for Lucy.It was surprisingly easy, especially getting on and off the tram itself. As Lucy didn't complain I took it that she enjoyed the ride. We had managed to time it so that we fed her just before we left which meant she lasted until we got back home again. Lucy sat happily at the table in the restaurant and it was nice to sit down and eat without having to juggle her in my arms for a change. She did manage to persuade her Granny to get her out of her chair towards the end. Joshua had a great time and impressed us with trying most of the dishes and his use of chop sticks. He was the only one to try the chicken feet which was unnecessarily brave but scored him some points with his cousins.Lucy behaved herself all afternoon and enjoyed the ride back on the tram.Saturday was a good reminder that with a little effort we can enjoy going out just like we used to and that sometimes our life seems more complicated than it actually is. Joshua is already asking when we can do it again.

21Jan08 - Normal Party

Yesterday we took Lucy to a party for one of her school friends and for a change we had a great time. It was fancy dress so we got Lucy dressed up in her angel costume. I was still little apprehensive about going because it was at a children's fun house and I knew that I would have to climb around with Lucy so that she could enjoy the slides and soft play stuff. I didn't want to be the centre of attention or have to put up with the sympathetic looks from other parents. I should not have worried about it because most of the children there were from Lucy's school and so there was none of that pressure at all. It was like a breath of fresh air not to constantly feel like all the eyes are on you (even when they are not) and just to enjoy the party as you are supposed to. So when it came to 'pass the parcel' I had no problem sitting down in the little circle with Lucy to join in with the fun. I think Joshua also felt it although he didn't say anything at the time.After 'pass the parcel' the disco lights came and Lucy sat for a long time with me just taking it all in.When she got bored of that Joshua and I decided that it was time to take her on the slide. The were a few Mums and Dads taking turns at giving their children rides just like me so we went up and down quite a few times. It just felt natural which is how it is supposed to be.We even had a climb around but I think Lucy enjoyed the slide more. It was nice for Joshua because he is at that funny age where he wants to play but needs a push to get going. When Lucy and I had had enough Joshua carried on playing until it was time to go.It was just a normal party for us and a few of the other parents said the same thing. A lovely relaxing atmosphere (not forgetting that it was a children's party) where the children were just children and the parents were just parents. It would be lovely if all the parties we go to could be like this one.

19Jan08 - Looking Back 04 & 05

I have posted a link in the sidebar to a second video slideshow which covers from the time Lucy came home in July 2004 to the end of 2005.
You can also watch it by clicking here "Lucy May - The First 18 Months". Looking back it is hard remembering exactly how difficult life was during this time. There were so many changes and so many difficult situations that we had to get used to. In a lot of ways it was the most forgettable time of my life. The shock of Lucy's arrival and the aftermath of hospitalisation took a long time to come to terms with. Even harder was coming home and trying to establish some kind of normality in all our lives. I lost all sense of future and could only look forward as far as the next day because I just did not know what to expect or what to hope for. There were so many unanswerable questions; what was Lucy going to be like when she gets older; just how severe will her disabilities be; will she ever respond in any way; will she see; how long will she live; will she be able to eat normally; etc, etc. We are a little wiser now and I am glad we are passed all of that. Of course all is still not certain but we are now better equipped for the life we have been given. The funny thing is that when I was choosing the photos and putting the slide show together I had a completely different memory of that time with Lucy which took me by surprise. I was expecting it to be quite emotional and for it to conjure up all sorts of negative thoughts. As I began to play it back, I started to realise that it was not all doom and gloom, there is actually a lot of good to look back on. The main thing that hit me was just how much Lucy developed and grew. Just looking at how long her hair is at the end of the video says it all. The video also reminded me that there were happy memories that have been hidden by my own negativity. The first time I watched the whole video from start to finish I will admit that my eyes were a little wet but not because it made me sad, it made me proud to see my little girl grow up and happy that I could watch and enjoy remembering, that although it was unpleasant at times there were also a lot of good times too. I asked my Mother to watch the video and give me her opinion. She said that the yes she did cry and it was emotional but in an uplifting way and that is exactly how I feel about it. Every time I watch it now it gives me a lovely warm feeling. It is easy to concentrate on all the negatives and also easy to forget the good, but it is the good memories that I want to keep like this photo of Lucy which is one of my favorites.

15Jan08 - Social Services

We had a visit today from Social Services. There is still a stigma attached to having a social worker which associates them with social problems, broken families and abused children. I guess I felt that in some way we were going to be judged on how we were coping and if Lucy was receiving adequate care. I am proud of what we have achieved so far as a family and the thought of somebody scrutinising that and/or giving advice when they have no experience of it themselves made me apprehensive. We have had a couple of previous visits and the questions asked we felt at the time probed unnecessarily deeply into Lucy's start in life, the causes and her condition. Dawn was made to yet again recount in traumatic detail the first days and weeks of Lucy's life when really all this information should have been available in Lucy's notes. At the time I felt that the only relevant information was Lucy's current condition and requirements. With hindsight I realise that it was important for Lucy's history to be recorded by this service to enable them to fully appreciate our circumstances. It is unfortunate that there is not more coordination between all the services as this could save parents having to retell their story over and over again to an ever growing list of proffessionals. The original assessment was to establish if there was any help we needed that social services could provide to us as a family. We stressed that we were OK with the every day care side of things but we needed support to allow us some respite, particularly to give Joshua more of our time. We explained that we do not have a large family and friends support network and that particularly as Lucy gets older we will struggle to find anybody to look after her. As a result of this we were given the equivalent of three hours a week direct payments. This means that money is paid into a separate bank account to enable us to employ somebody to come and help out with Lucy for three hours a week. Although three hours isn't a lot it was a start but as yet we have not done anything about it because we don't really know what to do with the three hours or how to find somebody that we trust with Lucy and would be willing to work for such a short time.
Todays visit was from a different social worker who has had Lucy added to her case load. She just wanted to introduce herself and follow up on the previous meetings we have had. We had a long chat about Lucy but it was focused on how she could help us as a family. She was quite sensitive to the fact that a lot of people are reluctant to ask for help, especially from social services. We told her that what we really need was a regular break and going forward more help with Lucy especially at times when I am away from home. We discussed how Joshua has had to accept his different role and regularly has to entertain himself because we do not have the time for him. Also he has no regular social life becuase we do not live near his friends and are not able to commit to involve him with any regular pastimes like swimming or football clubs becuase of Lucy's strict timetable. She explained that in addition to the direct payments there are a lot of services out there that we, including Joshua are not benefitting from. She accepted that it was important for Joshua to have his own time both with us and on his own. Up to present Joshua has been brilliant but that is not to say that at some point in the future his personal won't get on top of him. I found it quite refreshing to be able to talk openly about what we feel we need at the moment and the areas of our life that we find difficult. Perhaps we are simply ready now to talk about it whereas previously it may have been too early. Whatever it is, it was good to have had that meeting and to know that there are ways that we can get help if we need to.

Following that meeting we have been contacted by Crossroads ( www.crossroads.org.uk ) which is a volunteer organisation that as far as I understand provide respite by coming into your home for a few hours a week to give you time to do normal stuff like shopping, going out or simply getting the ironing done. Also our direct payments have been increased to five hours per week which is excellent and really gives us the opportunity to make good use of it. We have booked an appointment in a couple of weeks to discuss how we will go about sorting the direct payments out and getting somebody in to help us. For the first time I feel quite positive about social services and don't feel like a social outcast just because we have a social worker.

12Jan08 - At the Seaside

We took Lucy and Joshua for a chilly trip to the seaside today. The weather wasn't too good but we decided that we all needed a day out. We had a bracing walk on the beach to blow away the cobwebs, but didn't walk too far because there was an icy wind and we were concerned about Lucy getting too cold.To get out of the cold we found an amusement arcade with lots of two penny games to play. Joshua had a great time with his tub full of two pence coins while Lucy was mesmerised by all the flashing lights and arcade noises.We must have been in there for an hour and it was really good fun for all of us. We even found some amusements for Lucy. I am sure she wanted me to try and win her a cuddly toy but she was out of luck. Instead she had a few rides in a little car. She didn't quite know what to make of it and just sat quietly while it gently rocked her backwards and forwards.We eventually tore ourselves away and made our way back. Lucy has been a little angel today and I think the fresh air has done her good. It was good to get Joshua out as well because he has been a bit neglected this week and was in need of some attention. We ended the day with a nice pub meal before getting Lucy home for bed. It has been nice to get a break from the normal routine and not be ruled by Lucy's usual timetable. Apart from breakfast we fed Lucy out all day long and for a change it wasn't too difficult or messy which helped keep the stress levels down. In fact today has just been easy and relaxed which is fantastic. Maybe sea air is good for Lucy or maybe she was just pleased to find a boat with her name on it!!

11Jan08 - Long Week

I have just returned from a few days working in Germany and have tried to catch up with everything that has been going on at home. Thursday is always a difficult day for Dawn because it is the day she works so when I am not here she has to get up very early to sort Lucy out and get herself ready for work. After work she has to go to nursery to pick up Lucy and then pick up Joshua. By the time she gets home it is pretty late and she still has to sort Lucy out with her bath and supper. It must be really hard for all the single parents that have to cope on their own all the time.Lucy has been eating well over the last couple of days but was still struggling a little bit with her cough today. As long as we are getting the food into her we don't have to worry too much apart from all the washing and ironing.

Dawn took Lucy to a party this afternoon. I really admire Dawn for going because it was a "mainstream party" for children Lucy's age. I would have probably made a polite excuse. Children's parties usually involve lots of playing, shouting and running around while the parents sit and chat. Lucy of course can't join in with anything without help so Dawn had to take Lucy on the play gym and the trampoline while trying to ignore the sympathetic looks from all the other mothers.You stand out like a sore thumb and you can't help feeling that eyes are on you all the time. It is a conscious choice you make, either to avoid putting yourself in these situations and stay away, or just say "stuff it" and get on with it regardless for Lucy's sake. Dawn has a very strong character and is brave enough to do the latter. She makes sure that Lucy does not miss out because she knows Lucy gets a lot out of being with other children. As it turns out this is exactly what happened. There was a little boy at the party who also goes to Lucy's nursery. He was all over Lucy at the party, playing with her in a very gentle way. He kept on coming up to Lucy to talk to her and I am sure that Lucy loved the attention.I am so proud of Dawn for her determination to get on with life regardless. Yes it is hard, but we cannot hide away like lepers for the rest of our lives. Lucy needs a normal life with normal experiences and largely thanks to Dawn that is what she is going to get.

08Jan08 - Back to School

It was back to early mornings and the school run routine this week. I think everybody was looking forward to school again although not the 6 o'clock starts. At least we have passed the shortest day of the year but the mornings this time of the year are always dark, cold and usually wet. We have to fight with Lucy to get her coat on and then fight to get her in her car seat. Thats a little unfair because she is much better now than she used to be. Most mornings she will be happy to sit quietly in the car but every so often she likes to scream all the way to school. This week so far she has been a little gem.Over the last couple of days Lucy has shown some signs that she might finally be starting to shake the niggly cold and cough that has been getting her down for so long. She was definitely OK to go to school and it just shows how much she likes school because after not seeing any smiles for a couple of weeks the first thing Lucy did when she got to her classroom was break into a big smile.In fact she was all smiles. They made a big fuss of Lucy as soon as she arrived just to let her know that she was back and that it was good to see her. Back at school and loving every minute of it. Dawn is also now able to get a little of her own time back which is good. Today I was able to go on the school run as well and it was quite a good feeling dropping both the kids off at school and returning to a quiet and peaceful house.

Only one appointment today with Lucy's Occupational Therapist. She came to sort out Lucy's sleep system and to talk about a new chair for Lucy to use at school. It looks like we might be able to get one for home as well which will make a big difference. At the moment Lucy's chair has a push-chair frame and an indoor seating frame. We have no choice but to carry the seat between the car and the house. The seat is quite bulky and awkward and sometimes we end up just leaving it in the car, which of course is not ideal. So I was really pleased to hear that we can have a separate seat for home as it will make life a lot easier. These things usually take a while to get sorted out but at least we have got the ball rolling. I guess when it comes to things like this, for people like us, the National Health Service is pretty good.

05Jan08 - Colds and Cold

We have been cooped up indoors for a lot over the Christmas break so we made the effort today to go out for a short walk. We hoped that the fresh air might do Lucy some good and knew that Joshua needed it. It was fairly cold and damp but we wrapped up well and made sure Lucy was as snug as she could be in her chair.Joshua ran around the woods exploring and making things out of sticks and I had to join in while Dawn and Lucy stuck to the path. It was nice just to spend a little boy time with him for a change.About half way round the walk Lucy began coughing. Unfortunately we underestimated how the cold would affect her and she coughed on and off for the rest of the walk. It kind of took the shine off things a bit and we were just glad to get her back in the warm car, but not before she posed with a friendly swan.Not to be beaten we decided to call in for a pub meal on the way home. Lucy had a coughing fit in the car on the way there and we had to stop the car a few times to get her out and clear the saliva from her mouth. By the time we arrived at the pub she was exhausted from all the coughing and Dawn just managed to feed her, surprisingly easily, before she fell asleep. She slept for just long enough for us to eat in peace which is a luxury these days. She woke up coughing again and coughed just about all the way home. Joshua did his best in the back of the car to help Lucy but it was not until we got her out at home that we managed to calm her down. By the time I had bathed and fed her she was ready for bed and fell asleep straight away. That was until 20 minutes ago when she woke having yet another coughing fit. I went upstairs and found Joshua tending to her. He had Lucy sitting up in bed and was wiping her mouth with a tissue. He is such a brilliant big brother. I took over and had to give her a dose of paracetamol because she had developed a temperature again. Now it is 23:30 and Lucy is downstairs with me, so I can keep an eye on her until the paracetamol kicks in and it is safe to put her back to bed. I guess it has just been another normal day.

02Jan08 - Another Year

Lucy has started 2008 with an ongoing cold. Feeding her is still very difficult because of her nasty cough. In between meal times she is happiest when she is left alone lying on her back. When she is upright she is struggling with lots of mucus and saliva. It feels wrong to just leave her to entertain herself but at the moment that is what she wants. Lucy's best friend Laila came to visit on New Years Day. Laila was quite taken with Joshua and couldn't stop smiling at him.Lucy was happy to lie in her corner watching her new disco ball and mirror ball that she got for Christmas.
After feeding the girls we all shared a big bowl of chilli including Laila. I was really impressed that she was able to cope with it. It wasn't long ago that feeding was a huge problem for her and now she is eating chilli! We decided it wasn't a good idea to try Lucy with any especially at the moment. We tried to get Lucy and Laila to pose for a photo but they were feeling a little mischievous so this is the best of a bad lot.
Lucy went back to nursery today just for the afternoon which gave us the chance to take Joshua to the cinema for some rare Mum and Dad time. Lucy mostly slept at nursery and was also pretty lethargic when she came home. She made another big fuss over her supper and then fell fast asleep. She seems to have not been herself for so long now that it makes me wonder if we have just started another different phase. I hope I am wrong and that eventually we will get her back to normal.