30Aug07

Our holiday is coming to an end. 1 week is never enough to completely relax and unwind. I didn't post yesterday because we had a great night last night. We all let our hair down and had a late night taliking by the pool. We went to the beach inthe afternoon and I took Josh snorkelling for over an hour. We saw loads of different fish and even saw a Cormorant diving to catch a fish right in front of us. It was the best afternoon of the holiday. I took Lucy in the sea afterwards and she loved it. She stayed in happily for at least an hour and never complained once. It was great to spend so much time with both of them in the same day. I am trying to ignore the starers after Dawn told me that I am giving them too much attention. The idea about making business cards is a really good one and I will get to work on that as soon as I get home.

Today I got up early to sort Lucy out and It was nice to spend some time alone with her before everybody sufaced. We drove to a different beach this afternoon which was beautiful but a little rough after the winds last night. Lucy has been really placid all week and has not craved attention although she has had more attention than usual from the other children. Samantha (Lucy's cousin) has been brilliant. Lucy sat with Samantha this morning for over an hour on her knee never complaining , just happy to be involved with the other children. It is so nice to see that and it reinforces our belief that Lucy is a normal 3 year old who thrives on the attention of other children. At theis time of the holiday it is time to think about coming home again. We will have another great day tomorrow but it never lasts long enough. Next year hopefully we can make it 2 weeks.

28Aug07 - Driving Day

We had a driving day today. Lucy was confined to her car seat and pram for most of the day but never complained. Our first stop was a lovely secluded cove (apart from the coach loads of tourists) and we bumped in to some people we met on the special lift off the plane. They had a lady with cerebral palsy with them and it was nice that she recognised Lucy and wanted to say hello. It was difficult not to get angry with all the ignorant people who wanted to stare at Lucy. My sister has suggested making business cards explaining about Lucy with a link to this blog to hand out to all the starers. I think it is a brilliant idea and it will be my first job when I get home. We stopped in Valldemossa which is a lovely village in the mountains. Whilst pushing Lucy round a small girl about 3 years old came up to Lucy and wanted to hold her hand. It was really nice to see her treat Lucy in the way that everybody should. No preconceptions, no prejudice, just genuine friendliness. I wish everybody could see Lucy through the eyes of that 3 year old.

27Aug07 - Tuesday

Had a late night last night after finally getting Lucy to bed. Lazed around the pool all morning but decided not to put Lucy in after she got so upset yesterday. In the afternoon we drove to a beach and on the way stopped at a viewing point. The temperature was very high and because of all the steps to the viewing point we had to carry Lucy between us. She is really getting too heavy to carry any distance now. It was worth it because the views were stunning and we got some nice photos. When we got to the beach we found that it was packed but eventually found a space. Lucy was happy to sit in her pram under her new umbrella for about an hour which gave me some time to swim with Joshua. As usual there where plenty of starers. I found a nice quiet and cool place to feed Lucy before it was time to head home. We put Lucy in the pool again but the water must have warmed up because she didn’t complain too much and stayed in for ages. She especially liked it when Samantha her 11 year old cousin took over from me in the pool. With me she is always pushing back and squirming. As soon as Samantha took her she completely relaxed and was happy to stay in as long as Samantha wanted. Children have always had a special effect on Lucy. They are so genuine and treat Lucy as another child not something alien.

26Aug07 - My Birthday

The first full day of our holiday and my birthday. I got a special breakfast made by my Brother in Law Johann with birthday candles in my toast. Dawn took care of all Lucy’s feeds today which was fantastic. That is the way we spoil each other on our birthdays. We spent the morning lazing around the pool. Unfortunately the pool is quite cool and Lucy took a while to get used to the water. The inflatable ring I bought for Lucy is not really adequate. She pushes back so hard and the back rest doesn’t cope with it. I wish there was a company that specialised in swimming aids for people with special needs. If there is please (email me). In the afternoon we drove to the local beach at Puerto Pollenca. We had to buy a sun umbrella for Lucy and she duly obliged by falling asleep on the beach. It was nice to spend some quality time with Joshua for a change. We went snorkelling and he saw lots of fish. We have noticed recently that Joshua has started attention seeking which is not surprising as Lucy seems to monopolise our time and energy. He never complains about that but we have noticed a change in him recently. Hopefully we can make a special effort this week and both give him some quality time.

25Aug07 - Travel Day

Today we left for our family holiday in Mallorca with my sisters family. All medicines were in the correct size bottles, we had the doctors letter to confirm what Lucy is taking and were ready for the usual looks and stares. The journey to Birmingham was easy and we paid extra to park in the multi storey new the terminal. Airports always bring out the starers though. Josh get very protective and usually stares right back at them. He must get it from me. The security officials were actually very good and let us through with everything we needed. We also got seats right at the front of the plane. Lucy behaved brilliantly. we had arranged a special air chair for her and after settling down she slept for the whole flight. We had to wait at Palma with the other wheelchair passengers for a special lift off the plane but all the staff where extremely nice. My sisters family arrived on an earlier flight so we phoned them when we had picked up the hire car and by the time we had arrived at our villa in Pollenca Johann my brother in law had already started the barbecue. The villa is fantastic, big pool, huge grounds and no neighbours, just what we hoped for. After a few glasses of wine it is time to go to bed.

24Aug07 - Packing Day

Today was the last day before our holiday to Majorca. We are staying in a lovely villa with my sisters family. Sadly only for a week. It is a bit of a mission these days because we have to contact the airline about Lucy, arrange a special "sky chair", get a note from the doctor to confirm what medication she is taking (so we can take it on the plane.....but we can't take too much which means buying special bottles to take it in), plan what food we need for her and tomorrow convince the customs officials that it is all legitimate. How simple life used to be. We spent most of the day rushing around trying to sort everything out and doing last minute shopping. Dawn had extra stress because it is my birthday on Sunday and she had not had time to shop for presents (hopefully) until today. It will all be worth it when we get there tomorrow. Lucy always seems more relaxed and happy when we go away but it is a worry going to places where you don't know exactly where the nearest doctor or hospital is. Since Lucy had a major fit a few weeks ago we carry a strong "rescue" drug with us just in case. As usual Dawn has arranged and planned for everything.
Dawn got the notes from one of the Local focus groups she has been involved in (Icarus - Kirklees Early Years Service) and was pleased to find that not only did they listen to her point of view but that she was quoted in their childcare assessment notes. This focus group asked parents to contribiute to there workshops and forums to share their experiences of looking after disabled children and of the care and service they receive. On the issue of varying standards in staffing Dawn was quoted saying "my little girl's been in the same private nursery for 2 years but the care has not always been up to scratch because I've been at the mercy of individuals. She went through a period where they just leave her in the corner on her wedge and they were not including her at all - i didn't know until afterwards". Dawn was also asked about her experiences of seeking the right care for Lucy and was quoted in the paper saying "you shouldn't have to put your energy into fighting, (........to receive the right care...) you should put your energy into taking care of your children like any parents wants to do". Dawn through Lucy has been a voice for all children and parents like us. The message is a strong one and hopefully will not fall on deaf ears and I know it is cliche but actions speak louder than words. Focus groups are a good thing but are only the first step towards changing attitudes and emphasis on providing valuable services. I think that because of the enormous burden that parents with disabled children carry they too often do not have the strength to stand up for themselves and their children. I am so proud of the way that Dawn has got involved with the wider issues surrounding Lucy and is making a difference not only for Lucy but for other similar families in the community. Dawn has been instrumental in saving the local Portage service which provides developmental ideas and therapy to Local children after funding to the service was stopped recently. Lucy was receiving Portage when it was stopped. Believing that it was not fair, Dawn contacted local councillors and as a direct result of this new funding has been secured for the next 3 years.
Mainstream people may question what people like Lucy have got to offer society but Lucy has already in her short life been the catalyst to make a difference to peoples lives. How many people can truly say "I have made a difference"?

23Aug07 - Nursery Day

Had to leave early this morning to go to London so left Dawn to do the morning routine. Dress, teeth, medicine, breakfast and the worst bit the dreaded hair brushing and thats all before dropping Lucy at Nusery and going to work herself. Just the usual Thursday start when I am working away. My parents came over from Sheffield to look after Josh as it is still school holidays. I got back this evening to find that my Dad has been sorting out our neglected garden with Joshuas help and my Mum has been at the ironing mountain that never seems to go away. Their support is brilliant. Joshua always has a good day with his grandparents. He beat them at monopoly again today!!! I did get home in time to see Lucy briefly but not quite in time to help Dawn with the bath, medicine and feeding routine. I just got a few quick cuddles before putting her to bed.

22Aug07 - First Post

The morning routine was not a particularly happy time today. Lucy is not quite herself and whimpered from getting up to leaving to go to the park with Dawn. We are going on holiday on Saturday so the last thing we need is a chest infection or worse. I got the dreaded job of brushing her hair which always makes her scream. Her hair has grown so long and it is really pretty but after a night of squirming it is usually like a birds nest. Its another busy day for Dawn. This morning the park with our new friends who we met recently at the local Champion Children Awards. They have two little girls, Eloise and Bethany. Bethany has a genetic liver disorder (Progressive Familial Intrahepatic Cholestasis type 2) and will need a liver transplant in the future. They have their own blog with daily posts (http://fairenuff-familypficblog.blogspot.com/) which gave me the incentive to finally start ours after setting it up in May. We (well mainly Dawn) have met so many people through Lucy. Lucy has been the catalyst that has changed our lives completely but three years on we are beginning to appreciate that actually she has brought so many good things into our lives. We certainly are living in a different world from the "Mainstreamers" (people who don't have disability in their lives) but its really not a bad place at all. This afternoon yet another home appointment. Lucy is getting a new bath seat which will help us lift her in and out of the bath. She is starting to get very heavy now and washing her hair has become a two person job. I think there is also someone coming to have a look at the house because we are going through the unpleasant process of talking about adaptions to the house for Lucy's needs. Lifting gear, special washing, changing and bed facilities. All these visits and appointments remind you how abnormal your life is now and unfortunately because I work Dawn has to deal with majority of them. On the other hand the support we get in the way of equipment is very good, you just can't help feeling like you don't want it.