06Sep08 - Back to Blog

It has been over a month since I last sat down and put my ramblings on Lucy's blog. I guess I was in need of a blog holiday. I have spent quite a bit of time working away over the last six weeks which has not been the best timing especially with school holidays and finishing off Lucy's new room. However in between working, Lucy's room was eventually decorated and furnished. There are still a few finishing touches left to do but Lucy has now moved in and is getting used to her new surroundings. She is also having to get used to the shower instead of a bath. I think she actually quite likes it. The shower tray has not been fitted yet so she is sitting on a Rifton bath seat on the floor in the shower room while she gets showered. It is certainly easier than lifting her in and out of the bath and washing her hair is a doddle. The end result of the adaption work is very good. Most of my worries proved to unfounded and now that I can see it finished I can appreciate how much we needed it. It is just one of the many things that you have to accept when you have a disabled child. The house without the adaptions just was not adequate to accomodate Lucy. The changes are also not too obtrusive and it does not feel like we have installed a hospital ward in the house. The room just feels like any other bedroom and Lucy will be very happy there. The next thing to think about will be the sensory equipment but the hard work is done.

During the school holidays Lucy's school ran several playdays. Lucy was fortunate to be able to go on most of them.The organisers had really gone to town arranging different activities each time. They had also arranged lots of young volunteer helpers so Lucy had plenty of attention which of course she loves. Lucy was in her element in the rebound therapy room.In fact she had so much fun she fell asleep.On one of the days Josh stayed with Lucy and was able to join in with his sister. He just loves being involved and had a ball.All school holidays end the same way and thats with the start of a new school term. It is Lucy's second year at Fairfield School and I could tell that she was glad to be back. It is Joshua's first year in senior school so the first day back was a huge day for him.They have both settled back in to the school routine very well. Back to early nights and homework for Joshua and back to fun filled days for Lucy.

27Jul08 - Adaptions Update

It is nearly a month since my last post about the adaptions we are having to our house for Lucy. It has been surprisingly painless and the work is almost complete. It was difficult to visualise how the room would look before hand and I had lots of little niggling concerns about size, space and if it would end up looking too clinical, especially with the ceiling hoist in place. On plan the layout looked alright although the area for Lucy's shower room did appear uneccessarily large. These days buiding regulations are very strict regarding access and turning space which dictates what you can and can't do with the space you have. I was also very concerned how the ramped access to the front door would affect the look of the house. The recommended approach is always to have railings at the side of a ramp for safety but in our case I didn't think it was necessary as the ramp did not need to be too steep and also it would make the front of our house look like the entrance to a clinic. To make matters worse we would no longer be able to use our front gate.It is fantastic that house adaptions like our are covered by local authority grants. I think adaption grants currently cover the cost of work up to £25,000. The work to our house was a long way below this threshold but it would certainly have been a struggle if we had had to cover the expense ourselves. People complain about goverment spending and public services but after all the help we have had over the last four years with Lucy and now this, I feel very fortunate to live in a country like ours.After approval has been granted for adaption works the local council sends the work out to tender. You have the choice to select which 3 contractors bid for the work. I decided this was the best option and selected small local contractors. It took about 6 months from tender to actually starting on site which I guess must be normal. Our contractor was a company call R A Berry & Sons of Holmfirth and I am naming them because they were brilliant and I would recommend them to anybody. They carried out the work efficiently and sensitively with very little disruption. There were a few things that we wanted changed during the works, like the position of the shower and there were also some extra jobs that we needed doing but they could not have been more helpful.The room has turned out very well and the concerns I had before hand prooved to be largely unfounded. The shower room is lovely and roomy and the bedroom is bigger than I thought it would be. The hoist is not too obtrusive and we have the option to store it out of the way in the shower room during the day.
The only slight hick up is the fact that we opted not to have a toilet in the shower room and with hindsight it would have been very useful. Originally it was thought that there wouldn't be space for it but there is plenty. Once it is all decorated it is going to look really nice. We have now got a lovely new front door with a lower threshold plate to make it easier to wheel Lucy in and out. We won the battle over the railings, or rather the builders did for us, and the ramp they have built actually looks really good. It does not look out of place with the front of the house and thankfully we will still be able to use our front gate as normal. So overall I am very happy with the outcome and it means that Lucy is properly catered for for the foreseeable future without adversely affecting the home.The next thing for us to do is to decorate which we have already started. Originally the room was going to be pink but after considering all the pink in the curtains, bedclothes and accessories that we have already chosen, and after some advice from our good friend Haley we now have a different colour scheme. I am quite excited about how it is going to look, I just need to find the time to paint which is not going to happen for the next week or so. All will be revealed.

15Jul08 - First Year at School

Lucy is now coming to the end of her first full year at Fairfield School. It has been a revelation for all of us. For a long time I could not imagine Lucy even going to school and even less what a school she would be able to go to would be like. Fairfield School could be in the running for the best school in the world I think. It has to be experienced to appreciate what a fun and positive place it is. Lucy has done more in a year than she could have anywhere else and you only have to watch the above video to see that (or click here to watch on Google Videos). I have had no experience of other similar schools but I am convinced that there could be no better place for her. I have written previously about how wonderful the people are but it cannot be said enough. The teachers, helpers and all the other staff have created an amazing, happy, welcoming atmosphere and I always enjoy taking Lucy into school when I get the chance. The school made a DVD from all the photos they took for each child which is a really nice touch. I could not use it on the blog though because it also included pictures of the other children. The school gladly provided most of the pictures of Lucy so that I could recreate it for the blog. I have to admit being a little weepy when I watched it the first few times but I wasn't sad. It is just so nice to see Lucy taking part in so many different activities and really enjoying herself. I am so proud of how far she came during the last year at Fairfields and I give them all the credit. Thank you Fairfield School for a fantastic year!

14Jul08 - This Life

I have been writing this blog for nearly a year now and I often feel like I can't really express what my life is like because of how it may be perceived. There are so many people out there who could legitimately say to me how lucky I am that my daughter is even alive. I have seen parents who have left the hospital with nothing but despair. I know parents who have lost and would gladly swap places with me. Does it help? No and it never will. No matter how hard or how tragic your life is there is always someone who is worse off. Whether it makes you feel guilty for your own feelings or not it will never make it any easier. We have been dealt a hand that thankfully the majority of parents will never receive and I just wish that I had the strength to appreciate what I could have lost. The problem is that I am weak and I cannot help thinking about what could and should have been. Nothing I believed in came true. The aftershocks four years on seem to gain in strength rather than diminish. The life changes continue and there is no way to stop it. I used to think that I was a strong person and that I could ride any storm. I realise now what a fool I have been and that I do not know how to. I wish there was a place you could go to find the answers, I wish I didn't have any to find but I do and there aren't any. You feel inside that you are still the same person, the same happy, hopeful, optimistic, easy going and lighthearted person that thought the world was a great place, but outwardly none of these traits are evident or seem significant. They have been suppressed so deeply that they only ever surface when you are off guard and forget reality. It worries me how much the changes affect every day life and how different I feel. Acceptance feels like an unattainable holy grail and the quest for it a fruitless challenge which can only deliver more guilt.

I want to be the type of person who can see through the injustice and the "normal world" perspective but at every turn the challenges are too great and I endlessly fail. The dissatisfaction in my own ability to rationalise is immense and my inability to recreate a normal life is ultimately destructive. It always comes down to the question of blame. It shouldn't but it does. Was it me? Is there something I could have done differently that would have changed the outcome? I could have realised sooner that all was not okay. I could have insisted that things were going wrong and I could have made people take me seriously. In reality I was a lemon, a spare part, a spectator that just watched from the sidelines and accepted that I could not change what was happening. Although when I look back I know that I knew it was wrong but I foolishly trusted the system and let what happened happen. I will pay for my own inadequacies for a lifetime both before the 30th May 2004 and after. I can draw no comfort from the fact that I could not have been prepared for what happened because presented with it I could have done something. Neither then, since or now have I been able to make it right and I don't suppose I ever can. Life is different now for all of us and in our own ways we continue to suffer. What I can't work out is are we the same people endlessly cursed with trying to come to terms with a single unacceptable moment or has that moment changed who we are and how we think forever!

07Jul08 - Brother and Sister

When I think back to how eagerly Joshua anticipated the birth of his new little sister I get a feeling of great sadness for him. He used to tell us all about the things they were going to do together and how brilliant it was going to be. He was going to be the best big brother in the world. He is definitely that in many more ways than I could have foreseen. The feelings of sadness are twofold. I feel for his loss in not being able to share his life in the way most brothers and sisters do, for not helping Lucy to crawl, walk and talk, for not being able to laugh and boast about all the cute little phrases she may have said for the first time and for the admiring eyes that would have made him feel so special.Maybe I understand that and feel it more than he does because I know what he has missed. I also have my own feelings of loss at not being able to enjoy their boisterous and comical interaction, their petty squabbles, the love of a big brother for a little toddler and the childlike brotherly guidance that Joshua would be so good at giving. I see all these things in Joshua's relationship with his little cousin who is just a few months younger than Lucy and at times this can be very difficult to watch. The guilt demon inside of me tells me that I should not compare with what could have been, that I should be grateful that Joshua has a sister and that it should not matter that things are so different from what they should have been. I am not sure what affects me more, the feelings of guilt or the sense of loss.

Every so often I get a slap in the face which pulls me out of the gloomy pit of self pity. Yesterday was such an occasion. A blatant reminder that although Joshua and Lucy share a special kind of relationship, it is no less loving and the bond that exists between them is a strong as any. They definitely still know how to have a good time enjoying each others company even if it relies on Joshua to instigate all they do together. There is no better than Joshua! He truly is a very special boy. The occasion was a mainstream party for a little 3 year old girl. As usual I was very apprehensive about going to this "normal party" especially as there was a children's entertainer who would have all the little children running, dancing and playing party games. Of course I expected that Lucy would be excluded by default as she would be unable to participate. I also expected us to attract the usual curious, sympathetic and blatant staring from the other parents. However we still went because Lucy would still enjoy being there, oblivious of her parents anxieties and insecurities. So we dressed her in her best party frock, put a new frilly bobble in her hair and arrived at the party with mixed feelings. To start with it was as I feared, lots of kids running around, screaming and shouting, playing with balloons, while Lucy sat on my knee. As I do automatically now, I kept scanning the room for starers, not to be disappointed. However within a few minutes the Entertainer had brought Lucy a special balloon which mellowed my mood a little. I am sure she liked it.It was not long before the party games started and I watched while all the children gathered, some eagerly, some hesitantly, to join in with the fun. I suppose I shouldn't have but I did not feel comfortable taking Lucy to sit in the middle of the other children and being the only parent. I suggested to Joshua that he might like to as he would also get the chance to join in. In true Joshua style he was more than willing and off they went. Lucy was immediately at ease with him and looked to be taking it all in.They had story time, played running, balloons and all sorts of noisy hysterical party games. Joshua made sure every time that Lucy was completely involved, especially with the pass the parcel.Best of all was the disco at the end. Joshua and Lucy were dancing around all over the dance floor. Joshua's arms must have been dropping off but he carried on right to the end.Lucy had an awesome time and I think Joshua did too. It was wonderful to see them like that and Joshua really showed everybody in the room how special his little sister is and how they can have just as much fun as everybody else. It was a good afternoon in the end and we all left happy.I received another lesson in how our life is not always as it seems, a reminder that I can still see in my beautiful children those things which I anticipated when I found out that Joshua would be having a little sister. I love my children with all my heart and I can not imagine them any other way. Together they bring so much joy. Watching them together is a daily treat that I could never tire of.

01Jul08 - Holding the Fort

I have been alone with the children for the last few days. Dawn has been in Spain having a break with her friends. I did have some help over the weekend from Helen (aka Mary Poppins) and my parents which was just as well because I had to finish clearing the house ready for the builders on Monday morning. I do quite enjoy these short spells alone with the kids. Fortunately I have been able to arrange it so that I could work from home otherwise it would have been awkward.

A new large "Wedge" arrived for Lucy on Monday. She has grown out of the one she has been using since birth but the new one is huge. That said she is not so small now and does need it. We are so lucky to have equipment like this provided for us.It feels like our home is gradually shrinking as new equipment arrives and especially now that the adaptions are happening. She was very happy with it though. It is quite easy to lie her on her side in it and this afternoon she had a good two hours nap on it.

We should have been at a wheelchair appointment this afternoon but it was cancelled at the last minute. Lucy is getting a new "Blade" wheelchair specifically for transit to and from school although we will also use it more generally. The Blade is a traditional looking chair and is one of the standard chairs offered by our Wheelchair Services. You do have the option to source your own chair and Wheelchair Services will part fund it. We did look at other options but in the end felt that it was not really worth the extra cost. Wheelchairs are certainly not cheap! Lucy did require quite a few modifications to the standard Blade to ensure she could keep the correct posture as much as possible including split foot rests to accommodate the fact that her legs are not developing at the same rate. Unfortunately I received a call just before the appointment to say that a standard chair had been delivered without any of the required modifications. We will now have to wait another month or so.

While waiting for the appointment I had decided to feed Lucy at her school as there was not enough time to go home in between. It was the first time Lucy had eaten lunch in the school canteen with the other children. Julie (I hope I spelt that right) who knows Lucy very well offered to feed Lucy just to see how she managed. I am getting much better at accepting offers these days and accepted the welcome break. Lucy was very tired and her eyes were drooping all the way through but Julie fed Lucy everything easily. I will admit it was quite a relief to know that when Lucy does start full days at school that we won't have to worry too much about her feeding.Lucy fell asleep on the way home which allowed me to actually get some work done this afternoon. Joshua went off to the "Young Carers" youth group this evening leaving me and Lucy to please ourselves. I fed Lucy nice and early and took her for a late walk in the park. The weather was so nice and Lucy is always happy being pushed around.I hope it isn't too naughty but we picked a poppy and Lucy held it all the way round. On the way home we stopped for a well earned drink at our local. Well a pint for me and a cuddle for Lucy.It was a nice way to end the day. As always Lucy is happiest when she is moving and soon tired of sitting around so we made our way home. Lucy is now fast asleep looking forward to seeing her Mum in the morning.

30Jun08 - House Adaptions

Back in November I wrote a blog about adaptions. At the time the idea of altering our home was an uncomfortable one. It forced me to confront future realities regarding quality of life and how we are going to manage Lucy as she grows. I also feared that the adaptions would mean turning part of our family home into a hospital ward with all the equipment that Lucy will need. However I have had plenty of time to get used to the idea since then. It is clear to me now that it is essential as it won't be too long before handling Lucy starts to become difficult. Dawn is already finding it difficult to bath her.So although it is still difficult emotionally to accept that Lucy needs a "Special" bedroom and "Special" equipment there really is no other option so we decided that we would make sure that the room is as pretty and girly as we can make it. Lucy will still have a proper bedroom rather than a ward. We have already chosen curtains and bedding and are planning to use some really good sensory equipment as well. Watch this space!

It took two weekends and a skip to clear the junk out of our house and move all Joshua's toys out of what was his playroom. It is sad that he is losing that space. Finally on Sunday afternoon the room was completely bare and ready for the builders to start this morning.Joshua was putting a brave face on this morning but I could tell that he too is sad that the playroom he has had for nearly five years is going. I am slightly worried that not having this room on the middle floor of the house will drive him upstairs into his bedroom but then I guess he is starting to reach that age anyway.After the first day we can already get an idea of size and it is going to be cozy although we always knew it would be. The most striking change for me was the cut out in the ceiling where the tracked hoist is going to be fitted. The room is split into a shower room at one end and a bedroom at the other.The plumber arrives tomorrow to start on the shower room basin and shower tray. Overall the whole job is going to take two to three weeks at the end of which we will have to contemplate moving Lucy downstairs. She currently sleeps in the bedroom right next to ours so this will be quite a difficult step.

19Jun08 - Is it really?

There are certain phrases that people use to explain their lives and why things turn out the way they do; "Everything happens for a reason", What will be will be" and "It is meant to be". I have been one of those people most of my life. My philosophy was always, "everything will work out in the end". I believed that, all the time Lucy was in hospital and unfortunately for the first time in my life it was not true. I can even remember relying on this in the delivery suite when everything was going wrong. I have had to re-evaluate my outlook and curb my optimism. I can appreciate better that when you open your eyes to the many terrible things that happen in life, the outcome is not always for the best, things don't always work out. You only have to watch the news or look around, bad things are happening all the time and there is often no sensible reason. I know that there are so many positives about Lucy's life and I also know how she is changing peoples perception and experience. In her own way she is educating the world and illustrating through her very existence that disability is not to be ridiculed but to be admired. She is also a beautiful little four year old girl who brings a lot of happiness. However I still struggle with my old normal self. The same old questions are ever present. Why...., why....., why.....? How could the outcome have been different? By asking these questions am I disrespecting disability and its origins? I guess what I battle with most is faith. Lucy has undoubtedly got a big part to play in our society and nobody could convince me otherwise. I would not be without her, she is such a massive part of my life and I love her more than anything. I just can't help feeling how unfair it is that she faces the challenges that she does. There are so many unanswered questions and no matter what happens they will always remain unanswered. Is it fair that she can't talk, is it right that she can't run around and play with her three year old cousin, is it ok that we can't help drawing comparisons between how she is and how she should be? The one question that concerns me more than any other is this, "Will I be asking these questions until I die?" The future is not somewhere that holds hope and expectation. It is a place very much like now, no changes, the same questions and no prospect of improvement. Motivating yourself to be different and to alter your outlook is a difficult thing.
All I know is that Lucy is my daughter and I will be there for her for as long as she needs me regardless of my own personal failings. Lucy plays a central role in our family almost by default but at the same time she is treated as normally as possible. The fact that life is different is circumstantial and I know we share this life with so many other people. I think that I will always feel that she deserved so much more and that we are all missing out in different ways. Lucy is amazing just as she is and will always carry on regardless. Maybe I need to take a leaf out of her book and open my eyes more to the different world around me. I simply can't help picturing what she would have been like, how she would have sounded and how nice it would have been to see her running around and talking. The question "Why" has no answer.

11Jun08 - A Life of Love

I often wonder who reads my rambling commentary and how it is received. It is a strange feeling knowing that Lucy's life and my own personal experience of it is available for the whole world to read about. At times it is an uncomfortable feeling which makes me question what I am doing but then every so often I get feedback which reassures me that Lucy's story should continue to be told.

I received this poem from a reader in America.

A Life Of Love
Written for Lucy May & Family

There is no handicap in anything that loves
they say what we do below, effects the stars above
sometimes life’s a test, sometimes it’s gentle as a dove
but there is no handicap within our acts of love

For what we see within is the way things truly are
we see the light above, but it’s the fire of the stars
when we hold another’s hand it’s the touching of the heart
there is no handicap when love holds all the parts

Yes we can learn to love from those who need us here
because maybe we need them to keep our life’s perspective clear
and only by giving of ourselves do we understand the lights above
handicap is an illusion within the perfect heart that loves

We can’t know the reason for all of this life’s pain
or why we are the ones to hold the burden of hardships reign
but we must remember, on earth, as up above
there is no handicap when your life’s a life a love
within our every action we create worlds dreamed of
because there is no handicap in a life that’s full of love

Remember, my friends, we see people by the way WE ARE not the way THEY ARE

written by Eric Sander Kingston

02Jun08 - Lucy in Scotland

We have just got back from a weeks holiday in Scotland. A week without a mobile phone signal or the internet which made a nice change. It was a great time for Lucy because there were nineteen of us including eight children which meant that there was usually something going on or somebody playing with her. The girls especially spent a lot of time sitting and cuddling Lucy. Even Grandad got in on the act.It also gave us more of a break than we would have had if we were on our own which worked out well. Lucy was struggling with yet another wet cough for most of the week which was unfortunate. She was also on yet another dose of antibiotics which didn't really seem to do much good although she is getting over it now. Not wishing to risk Lucy's cough developing into something more serious we were a little restricted as to taking Lucy out. The cold and the wet seem to have an adverse affect so we kept her in and wrapped up.Maybe we were a little over cautious but better safe than sorry. When the sun did come out Lucy enjoyed being pushed down the road listening to the birds and taking in the Sottish scenery. Not too sure what the wildlife made of the little pink four wheeled cough that disturbed their peace though.Joshua had a good time too. It was nice for him to have all his cousins to play with and we actually saw very little of him. We did manage to persuade him to go out with us a couple of times but he mostly preferred messing around at the house with the other kids.Lucy still got some quality time with her big brother and without him around I guess she would not get to do half the things she does.We also passed another major milestone while we were on holiday, Lucy had her fourth birthday. We had a little party with all the kids and Lucy tucked in to jelly and angel delight.Lucy's birthdays always bring back lot of memories but at the same time they are a celebration of her life and how much she has overcome. I think she knew it was a special occasion and enjoyed opening all her presents. With all the new clothes she got she will be the best dressed little girl for a long time.Lucy's birthday was a nice way to end the week but it all passed a little too quickly. On the way home Joshua wanted to see Hadrian's Wall so we made a slight detour via Housteads. It was a very strenuous push up to the roman fort but Lucy didn't mind and the sun was shining.The Romans might have built roads and sewers and brought lots of other technological advances but they definitely didn't consider disabled access! All the same we got to the top eventually and Lucy found a new hospital that she hadn't been to yet.Joshua loved it, standing on the wall imagining hoards of attacking barbarians.Lucy was happy just to take in the history and the views.The push back to the car was more of a free wheel but I am glad she is not much heavier.Well that was Scotland, a great week, wish it had been two weeks but then who doesn't say that after a good holiday!