13Sep07 - Another Busy Day

I got to take Lucy to school again today which was great. We arrived much too early because Joshua had to be at school early to go on a school trip to York. Lucy sat with me in the front of the car while we waited in the school car park. We sang and car danced to the radio for at least half an hour and she was really getting into it until she flopped forward and headbutted the steering wheel. Naughty Dad should have seen that coming. We had floods of tears for the next ten minutes but I don't think she was really hurt that much. Over the last couple of months she has really perfected the sympathy cry which soon develops into the angry, give me more attention cry if you don't offer enough sympathy. Dawn and me find it quite amusing because she has got such a "stamp your feet" temper when she gets going, I guess just like any other 3 year old girl. We finally made friends again just as Hayley arrived with Lucy's best friend Laila. We paraded them into school (it feels like that because of all the attention they both get) and they were the first to arrive in the classroom. They were straight out of their buggies and on to the resonance board. They lie on it to hear and feel amplified sounds made on the board by rattles, bells etc. and they both love it. We left them their safe in the knowledge that they would not have a dull moment for the next 3 or so hours. Lucy had a full day today as she was taken by the school bus from school to nursery for the afternoon for more fun and play. Today was the first day that we did not have to take a car seat for Lucy as the transport services have now got the right straps for her buggy and she can be wheeled onto the bus. Apparently she was awake and in a good mood most of the day so hopefully she will have a good nights sleep. When I took her up to bed, I picked her up and Dawn and Joshua both said goodnight and she gave as all some lovely smiles. A nice way to end the day.

11Sep07 - Fairfield School

Lucy's Peg

Just Arrived

Messy Play

Laila getting stuck in

Gorgeous Girls

It was lovely to be able to take Lucy into school again this morning. The school has this happy atmosphere and you know that the kids are going to have a lot of fun. I took a few pictures of Lucy and Laila who both look so cute in their little uniforms. It was also the first time I saw Lucy's little peg...big lump in my throat. So many people have said that Lucy and Laila could be twins, it is great that they are in the same class and probably will be for a long time. I am sure that they will really come on quickly with all the stimulation they are getting. We could never do the same at home. Every single teacher and member of staff seem to have boundless energy and I have not met anyone yet who isn't smiling. They really see the children as children which seems a funny thing to say but you get so worn down by the sympathetic looks and comments, that it is like a breath of fresh air to meet people who can genuinely see beyond the disabilities. These are beautiful little children with their own personalities, habits, likes and dislikes. They will grow and develop in their own ways just like any other child and have got so much to offer soceity if they are given the chance. At Fairfield School (www.fairfieldschool.co.uk) they are being given that chance. I wish more people from the outside could experience the schools approach to life and be educated to be more accepting of things which are not part of their normal experience.

10Sep09 - School Routine

Lucy is settling in nicely to her daily trips to school. She seems to have got into the habit of falling asleep on the bus home. Today she was dropped off at her nursery for the afternoon and because she was asleep the nursery staff decide they didn't want to wake her. As a result they didn't give her dinner until the middle of the afternoon and so missed her tea. Dawn has stressed numerous times how important feeding is but they still don't seem to get the message. From day one we knew that oral feeding for a child with Lucy's complications was unusual. More than once we have been threatened with a gastric tube and every time we have resisted and persevered with oral feeding. We regard Lucy's feeding which is now very good as a major success and hope to make it a permanent thing. It would be so easy to relax on the feeding which is probably the most time consuming thing we have to do but we know the consequences and can't let that happen. Needless to say she devoured her supper and is now sleeping soundly.

09Sep07 - Jemima's Christening

We had plenty of time this morning for a change. Dawn got up with Lucy so I got a rare lie in until about 9:00. We went to the christening of one of Lucy's friends from the child development centre which was at 12:00pm. The church was quite a forward thinking, modern setup with good music, lots of young faces and a scrolling slide show as a welcome. I quite liked it for a change from the usual Church of England dourness. Lucy attracted the normal unwanted attention but Dawn kept me from getting too mad about it. She always says to me, "Stop trying to educate the world one person at a time!" and she is probably right. It just makes me feel better when I know that they know that they have been caught at it. I must do those cards to hand out. I have to admit to being touched by the service though. As part of the sermon/speach/presentation (they call the sermon all sorts these days) they played a short film. The film was a story about a man going out for a walk around a lake with his 18 month old son, who he carried on his back with a kind of ruck sack. The walk starts well, its a beautiful sunny day strolling through the woods but at the half way point, as far from home as they could be, it begins to rain. The rain gradually falls harder and harder until they are walking unprotected through a torrential thunder storm. The child is now scared, wet and screaming, unable to protect himself from the rain. The father then carries the child in his arms to protect him as best he can and he keeps repeating to his son "I love you, Its OK, I will get you home". Eventually they reach safety and everything is OK again. The father reminiscing about this experience says the closeness and the love he felt for his son during their perilous journey home was a defining moment in his relationship with his son and he valued that experience above all others. The moral I quess of this story is that you should not expect all your days to be sunny because it is inevitable that some day it will rain, it always rains. It may rain on you or somebody you care very much for. Don't feel that it is not fair that you or somebody close to you got wet and scared, it may just be a wonderful opportunity to experience something different and amazing that you would not otherwise have done. After the rain comes the sun.

08Sep07 - Saturday

I haven't blogged for a couple of days due to being in Germany and yesterday when I got home we went away for the night to celebrate our 16th anniversary. It was the first time this year that we have had time just to ourselves. Lucy was in good hands with my parents who stayed the night at our house. Unfortunately they are the only real babysitters we have and we do call on them too much really. My parents have been a crutch that we could not have done without. I know it is getting more difficult for them but even so they are always willing to do whatever they can. Fortunately now that Lucy is at school life will be a little easier for a while and we won't need as much help. We are hopefully also going to look into the possibilities of respite care. There are people in the area who volunteer there help to look after special children and our community nurse can arrange for us to meet them. We will see what happens.

It was great to get away but it is difficult to detach from everyday life and completely relax. Also when you spend most of the time being carers, physiotherapists, parents, wife and husband it is difficult to be individuals, just Dawn and Neil. It was lovely though just to be able to do nothing for a few hours, no timetable, no feeds, no chores, just nothing. Hopefully we can make more opportunities to be just Dawn and Neil.

05Sep07 - Blog from Germany

I am away today working in Germany. I know where I would rather be. After speaking to Dawn I know Lucy had another good day at school. The bus did bring her home today but not until 13:15 which is quite a lot later than we were lead to believe. It looks like she is the last child to be dropped off. Today she slept all the way home. Dawn was meeting a friend she met recently through Lucy, so had quite a rush to get Lucy fed before she could go out. Tomorrow is the day Dawn works so tomorrow morning will be a bit hectic for her without me there to help. Joshua is never too upset when I work away because he gets to sleep in our bed which he loves doing. I get back on Friday which is our wedding anniversary (16 years!!!). My flight is due to land in Manchester at lunchtime. I only just managed to avoid having to be in Germany all Friday after using emotional blackmail on my boss. My parents are babysitting overnight and we have booked a very nice hotel that Dawn has always wanted to go to. It is a very long time since we have had any quality time just to ourselves and I can't wait. KLM better have no hold ups on Friday!!!!!

04Sep07 - First Day at School

Lucy and Josh getting ready for school


Lucy looking cute with her pigtails


Lucy and Laila with their matching buggies


Ready for some hard work on the computer


Josh and Lucy after a hard day

It was pretty hectic this morning as it was a new routine for us gettting two children ready for school. Lucy was as good as gold and didn't even complain too much when Dawn did her pigtails. We dropped Josh off first but he didn't want us to get out of the car (Its not cool to be walked into school by your parents anymore). We then waited at Lucy's school for her best friend Laila to arrive so that they could go in together. I have to admit to feeling slightly emotional. The school staff gave the children an amazing welcome and ushered us in to the school. After taking Lucy to her classroom and making sure she was ok (Don't know why she wouldn't have been) it was time to leave, childless. It was really quite strange.

We did have a minor hickup with transport. Lucy is supposed to be taken home by the school bus at lunchtime. We were concerned about her travelling on the bus but decided in the end that it would be ok and it will give Dawn at least an extra hour every day. However we got a phone call from the school at about 12:30 to say that the transport company had not realised that Lucy was in a chair and were expecting her to be in a car seat. This meant Dawn had to rush up to the school to pick her up and her teacher had to miss her lunch while she sat with Lucy. The excuse from the transport company was that they did not have any straps to strap Lucy's chair down. For a company that specialises in transporting people in wheel chairs you would think that they might carry spares.

They day still ended well. Lucy and Josh came home happy and Lucy especially looked worn out. Hope you like the photos.

03Sep07 - School Tomorrow

Lucy seemed a little better today although she must still be feeling a bit tender. She still went to Nursery all day without any problems. Joshua spent the last day of the holidays watching some dvd's that he bought with his holiday money. He is excited about school tomorrow as he will be head boy. It is Lucy's first day at school tommorow. Dawn has bought her a little grey dress, white shirt and a pink rucksack. I will put a photo on tomorrow's blog. Her best friend Laila Brown also starts tomorrow at the same school so it will be lovely to see them both together. Both Dawn and myself will take Joshua and Lucy to school tomorrow which has worked out really well. Lucy's school is a brand new state of the art special school. She has been attending nusery sessions there every Friday for a while and we have got to know the staff and teachers quite well. It must be a daunting prospect for many parents in our situation taking their children to special school for the first time. Fortunately Dawn got herself involved with the school very early and it is clear that there is no better place for Lucy. In fact we are fortunate that we have such a good school in our area. There is a link to the school's website under "Links". Lucy will just be going in the mornings for the first 18 months but will also be going to her old nusery for two afternoons as well. We don't want Lucy to lose the contact and interaction she gets from being around the children at her "mainstream" nursery. Dawn is looking forward to getting some of her own time back as she has been totally immersed in caring for Lucy, going to appointments, doing physio, listening to people tell her what to do with Lucy etc, etc for the last 3 years. People outside our very different world cannot appreciate what a drain the constant stream of hospital appointments and home visits is on your energy and emotions. I have been constantly guilty of overlooking the day to day stresses that Dawn has been under from my detached position as the father who goes out to work. It is not only the fact that there are so many people offering advice, from Physiotherapists, Doctors, Play Therapists, Occupational Therapists, Dieticians, Family, Friends and strangers, it is the feeling of guilt when there is not enough time or energy in the day to do all the things you are supposed to do. Dawn has coped brilliantly with all this and has carried more than her fair share of the burden. It is great that she can now look forward to getting some of her life back, having time to herself, going horse riding, having time to relax and think about herself for change. Lucy will also benefit from a little of her own independance. Tomorrow is a big day!

02Sep07 - Lazy Sunday

Lucy was still struggling today with pain in her neck or back. We had to be very careful handling her because once she gets upset she will cry for ages and nothing we do seems to calm her down. After a late start we set about unpacking, washing and other dreary jobs that always need doing after a holiday. Lucy was happy to be left alone and not handled. On holiday we actually fed her in her pram just about all the time because it was so hot and sticky. This could be a bit of a break through if we keep it up because up to present we have had to hold her to feed her. Really she is too heavy for that now and apart from giving us big biceps it can't be good for our backs. We have a Leckey Squiggle chair for Lucy which we switch between a sitting base for in the house and a buggy base for pushing her around. The problem is the buggy stays in the car and the sitting frame stays in the house which means having to always unclip the frame from which ever base and carry it bacwards and forwards to the car/house. The chair is not over heavy but with all the other stuff we carry it has been too easy just to feed Lucy on our knees and not bother with the seat. I wish we had two although we should now make the efffort to bring the chair inside.

01Sep07 - Travelling Home

Today was the worst day of the holiday, the trip home. We had to be out our villa by 10:00 but our flight didn't leave until 18:55. My sisters family were on an early flight so we pretty much had the day to ourselves. We gpt up fairly early to sort out final packing and cleaning. Lucy was very unhappy and screamed for a good 15 minutes. She seems to be in pain when handled. Joushua finally calmed her down and she went to sleep. Joshua and I then had a final swim in the pool before packing the car up to go. We only just squeezed everything in our Ford Focus, not helped by one bulky sky chair. We drove to Port De Soller which is a lovely small port surrounded by mountains, in fact you go through a 3km tunnel to get there. We killed some time looking at shops and strolling around the marina. We had lunch in a restaurant right on the edge of the marina which was stunning. It was Dawn's turn to feed Lucy which was a long drawn out affair as Lucy was pretty drowsy and so I don't think Dawn appreciated the location quite as much as I did. Lucy did her annoying trick of filling her nappy half way through having her lunch which didn't help either. We made our way to the airport, left the hire car and headed for check in. We were early so decided to feed Lucy (My turn). However as soon as we got her out her pram she started crying and was inconsolable. We all had turns at trying to settle her down but she just screamed and screamed. In the end we gave her some Calpol and it seemed to do the trick. We sailed through check in and security even with all Lucy's medicine, food and the sky chair. It was then a long wait as we were delayed 1hr 30mins. Lucy was fine and we had time to feed her twice so that we didn't have to do it on the plane. We got special assisstance on to the plane as we had to fit the sky chair before everyone else got on the plane. Luckily one of the stewards knew how to fit it although I probably could have managed. Lucy although seeming very tired only slept for half the flight but was settled. At Birmingham I had to carry Lucy all the way to baggage claim because they said they could not find Lucy's pram amongst all the others which was rubbish as there weren't many small children on the flight. However, we managed but we won't be able to to that for long. We finally got home about 01:30 and went straight to bed although Lucy did cry again when we dressed her for bed. We think she may have hurt her neck or back possibly in the pool or maybe mishandling.
I was a fantastic holiday made by having good company to share it with, especially for the children. Joshua and Lucy will have fantastic memories and we all look forward to the next one.