Lucy May

06Sep08 - Back to Blog

noreply@blogger.com (Neil) — Sat, 06 Sep 2008 19:35:00 +0000

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

noreply@blogger.com (Neil) — Sun, 27 Jul 2008 12:57:00 +0000

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

noreply@blogger.com (Neil) — Tue, 15 Jul 2008 21:30:00 +0000

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

noreply@blogger.com (Neil) — Mon, 14 Jul 2008 00:33:00 +0000

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

noreply@blogger.com (Neil) — Mon, 07 Jul 2008 11:34:00 +0000

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

noreply@blogger.com (Neil) — Tue, 01 Jul 2008 20:49:00 +0000

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

noreply@blogger.com (Neil) — Mon, 30 Jun 2008 20:55:00 +0000

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?

noreply@blogger.com (Neil) — Thu, 19 Jun 2008 00:26:00 +0000

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

noreply@blogger.com (Neil) — Wed, 11 Jun 2008 09:16:00 +0000

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

noreply@blogger.com (Neil) — Mon, 02 Jun 2008 20:14:00 +0000

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!

23May08 - Why & How

noreply@blogger.com (Neil) — Fri, 23 May 2008 01:26:00 +0000

Why does this not get any easier? There are so many unanswered questions! I have been reluctant to write down my thoughts recently because I have felt that I would just be covering old ground but if that is the case then why is it in the forefront of my mind? I have just had the most unpleasant experience. For those that have been following the blog you will remember a post where I wrote about an incident in my local pub where the word "Spaca" had been used. Tonight the same individual approached me with what he thought was an apology. He maintains that he was unaware of my "situation" and did not "mean anything" by it. Well that's great but what exactly did he mean? I said that I was not offended by what he said because I know that it was not personal but asked him if he thought that using the word was acceptable. Unfortunately I heard what I expected. "its just a normal term"..."no offense but its just a general term". I cannot accept that!!!! Do people really think that disabled people are a valid target for verbal abuse and ridicule? What possible phrase or sentence which includes the word Spaca could be accepted in a positive light? The word "Spaca' is only ever used in a derogatory way. I could not accept this veiled apology, certainly not on the basis that he did not mean to offend but it is ok to use an offensive general term. Why don't we all agree that words like retard, joey, and spaca etc are not acceptable terms for every day language? Why is it so hard? Why do people judge the disabled? For pity's sake these people have not chosen to be like they are! They have had no choice! They have endured more suffering than any normal person! It makes me so angry that I know I can't change it. One thing is for sure and that is I will never accept that insulting the disabled is ever acceptable in any form. What those people who do think it normal to use those phrases and sayings don't realise is, is how much their words and actions affect the people they are targeted at. I just wish that I could convince these people I come across, to spend a day in my life. Spend a day with Lucy and see how you feel at the end of it.

In reality I know I am fighting generations of prejudice but a little awareness would go a long way. So many bigots and so many targets. Is society ever going to be a place for Lucy?

15May08 - Back to Blog

noreply@blogger.com (Neil) — Thu, 15 May 2008 21:26:00 +0000

For one reason or another it has been a while since the last blog. I am happy to say that there has been no reoccurrence of the incident at Joshua's school. It seems that the school was able to deal with the situation satisfactorily. Hopefully disability awareness within the school has improved and some good will come out of it.Lucy has been a little star over the last couple of weeks. She has been very content and has been eating extremely well. We think she must be having a growth spurt! It has been a pleasure knowing that feeding is going to be an easy job before you even start. It takes so much of the pressure off the daily regime and there is a sense of satisfaction from seeing empty bowls of food. We have noticed over the last few weeks maybe months that Lucy is mouthing when she knows it is meal time. We started to work on this and now almost invariably if you ask her if she is thirsty or wants some juice, she will start mouthing. This is a tremendous breakthrough and we are really excited about it. We are also starting to see that there are slight variations which may mean she is trying to tell us different things. So we are working on thirsty and hungry at the moment to try and establish a different command for each. If Lucy can start to tell us what she wants it could change her life completely. It is early days so we remain realistic but at the same time hopeful that in some small way we can improve Lucy's quality of life.Lucy has been enjoying plenty of days out over the last couple of weeks. We have been saving our direct payment hours and Helen has taken Lucy out for the last two Saturdays. She has taken Lucy all over. These pictures were at Golden Acre Park in Leeds. Lucy came home smelling very nice because she and Helen had been round the shops trying out perfume.The weather has helped a lot because it has been nice to be outside without the fear of Lucy getting too cold and wet. Lucy and I went for a walk in the park last Saturday morning and it was so nice I didn't want to go home. Lucy loves sitting in her chair looking up at the trees and just watching the world go by. I am sure I would get tired before Lucy became bored in her chair.There has definitely been a noticeable change in Lucy. There is no doubt she has grown, in fact I was amazed recently when I was shown a wall chart at her nursery showing just how tall she is. I just don't think of her that way because she is always sitting or lying. She is also generally more content and as I said before her feeding is simply excellent at the moment. I just hope that this good spell lasts for as long as possible. This Summer just might be a good one!

02May08 - Disabilism

noreply@blogger.com (Neil) — Fri, 02 May 2008 16:36:00 +0000

Disabilism n. Discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others. (You will not find this word in any dictionary)

Disabilism unfortunately is a fact of life for Lucy and people like her. We have seen this first hand time and time again in our every day lives. Lucy will have to face this for as long as she lives and we will have to protect her from it as much as we can. The sad fact is that disabilism has such a firm foundation in our society that without real effort from the authorities and a commitment to effective education, it will always exist. Few outside the experience of living with disability have any real appreciation of why disability exists or how difficult the lives of disabled people can be made by the thoughtless, uneducated views of the able bodied. Throw away comments made for laughs can have a profound affect on those they target and cause needless upset. Unfortunately it is true that disabilism is not only inherent in the adult population but is displayed by all ages including those young enough to be excused for knowing no better. However if young children are displaying the characteristics of disabilism the questions must be asked, "What is missing in their education?" and "Where do they get their opinions from?". It is also true that without proper education the young carry their prejudices into adulthood and the cycle of disabilism continues.

Once again disabilism has affected our lives this week. The saddest fact is that Joshua was the target and for the first time had to deal with this prejudice that up until now we have been able to protect him from. Joshua came home from school on Tuesday feeling very low. There had been some trouble in the playground involving himself and some other boys. He had been pushed and one of the boys had said something to him. When Joshua asked why, the reply was, "Because your sister is a spaz!" Joshua has only ever treated Lucy with love and care. He is very proud of his little sister and shows her off just like any sibling would. He was understandably upset and when retelling what had been said would not even say "that word" while Lucy was in earshot. This careless comment affected us all deeply and although we are not unrealistic and know what school playgrounds are like, for Joshua to be confronted by this at his age by boys of his age is extremely upsetting. Joshua asked us not to do anything about it because he did not want to create more trouble at school. We agreed that we would treat it as a "one-off" and not mention it to his teacher. We would have left it at that but the next day he left school under the same cloud. It was clear that the previous day's event had not been an isolated incident. The taunting had continued in the playground on Thursday both verbally and with those horrible hand gestures imitating spastic movements. The boys involved were doing this saying to Joshua, "This is your sister". It is utterly shocking knowing how helpless and lonely Joshua must have felt. It makes me so sad knowing that these boys don't understand the negative impact their actions have had on our lives this week. I don't believe they can even understand what they have said and done. I don't blame them, I blame society and I blame the lack of disability awareness education that allows such prejudices to grow and fester in the minds of young children. In ten or twenty years time these children will be responsible for making policy decisions and supporting the disabled community. If we are going to change attitudes then we must start with the young. We could not allow Joshua to deal with this on his own so we did see the Headmaster of the school who was horrified by what we told him. Hopefully he will be able to reappraise the attitude in the school towards disability awareness and protect Joshua and children like him in the future from the mindless taunts of the misinformed.

27Apr08 - Joining In

noreply@blogger.com (Neil) — Sun, 27 Apr 2008 21:01:00 +0000

We all piled in the car on Saturday morning and set off to spend the weekend with my sister’s family. It is great having Lucy’s big Motorbility car which easily holds all her stuff and we even had space for Joshua’s bike which he was really pleased about. Lucy is so much better in the car these days and she was calm and content for most of the 3 hour journey. In the past I can remember making the same journey when she cried and screamed for the entire duration. Thankfully those days seem to be over, although with Lucy I have learnt to never take anything for granted.Joshua and Lucy were not short of attention for the whole weekend. Lucy even made friends with their new cat who spent a long time trying to work out what Lucy was. Joshua spent the whole weekend outside playing on his bike and making new friends which was great for him. He so rarely gets the chance to “play out” at home. Lucy’s cousin, Samantha took her out for a walk in her buggy which was fine because they live in a relatively quiet and safe village. I was just happy for Lucy to be involved with the other kids. After they had been gone a while, I went to look for them and found them both at a small play ground near the house.There was a whole group of children playing and messing around. Lucy was right in the middle of it having the time of her life.It was wonderful to see how naturally they involved her in what they were doing. To me she had gained a certain amount of independence, out playing with her friends on her own without her parents or any adults. Of course we were keeping an eye on her but she didn’t know that. I thought about her dreaming about her day when I put her to bed in their newly converted attic.She complained a little because she wasn’t ready to go to bed and wanted the fun to continue. Is wasn’t long before Samantha, James and Joshua had dragged makeshift beds up into the attic so that they could keep Lucy company.Lucy had her first proper sleep over.
They all stayed up late chatting, giggling and generally carrying on and coincidently Lucy was completely content the whole time. Eventually all the excitement and fun took its toll and Lucy could not keep her eyes open.It was such a great day for her and for Joshua, it’s just a shame they don’t get the opportunity more often. For Lucy, children are some of the best therapists because they do all the right things so naturally, without thought and without prejudice. This weekend Lucy was accepted as just another kid.....brilliant!!

23Apr08 - On the Right Side

noreply@blogger.com (Neil) — Wed, 23 Apr 2008 21:25:00 +0000

Last week we had a visit from Rachel Lucy's Occupational Therapist. Rachel has just completed an eight week therapy course at The Bobath Centre (www.bobath.org.uk) in London and has returned with lots of fresh ideas. She was keen to review positioning with Lucy and in particular introduce side lying. Up until now Lucy has spent a lot of time simply lying on her back. When she goes to bed, because of the way her sleep system is, she can only lie on her back and it is not always the most comfortable or beneficial position. She struggles sometimes to clear her throat in this position especially when she has a cold and is producing a lot of mucus and saliva. I also think that lying on your back is not always the most comfortable way to sleep. We have known for a while that Lucy enjoys being on her side, it is just difficult to keep her in that position. Rachel brought with her another mat to use with the spare wedges from Lucy's sleep system so that we can introduce side lying on her wedge to get her used to it before we introduce it for sleeping.As far as I understand the Bobath therapy concentrates a lot on positioning and using different positions to stimulate movement and dexterity. Rachel explained to us that she thought Lucy was very clever and aware of her surroundings and that she wanted to build on that by challenging Lucy to use her body more. In the side lying position Lucy has much more freedom to use her arms because they are naturally brought forward to a position where we can easily stimulate her touch and feel.She is also free to use her legs in a different way and she showed us this immediately by kicking and moving them which she does not always do.It is also good for her head position. Lucy has always had a tendency to lean and push back which results in her head lolling backwards. On her side it is easier to position her with her head forward and we can give her things to look at which challenge her to look down as well as up.It is always nice to have such a positive visit but it was really important and moving to hear somebody describe Lucy as clever. We have always thought it of Lucy but there are not many people that can see past her disabilities. Probably without realising it Rachel gave both Dawn and myself a huge boost by what she said. It is just something we don't hear very often. Lucy has huge potential to progress and needs people like Rachel in her life to push her and challenge her, to see the bright little girl inside her disfunctional exterior and help her to express herself in new and different ways.Lucy has taken to side lying very well and has been happy to maintain the position for long periods of time. It is giving her a whole new perspective, allowing her to see things in a different way. As you can see from the photo above, I don't think she will have any problems sleeping in this position.

19Apr08 - Room to Breath

noreply@blogger.com (Neil) — Sat, 19 Apr 2008 20:06:00 +0000

It is about 6 weeks since we began to realise the benefits of receiving direct payments. We have been really lucky to find Helen who we can completely trust to look after Lucy and although the direct payments only provide 5 hours care per week, it is making a huge difference. We know now that we are regularly going to get time to do our own thing and to have a break from the usual routine. I think it is already having an affect on our attitudes and outlook as we are being allowed to relax. It is good that we can be flexible in the way we use the hours and we have Helen to thank for that. Some weeks Helen has done two evenings to cover bath and supper and other times we have used all the hours at once so that we can get out and spend time alone with Joshua.

On Saturday Helen took Lucy out for the whole afternoon which gave us the opportunity to have a day out with Joshua. Joshua found a place nearby on the internet called Diggerland (www.diggerland.com). As the name suggests it's theme is diggers and construction equipment, a real boy place.Joshua had the time of his life and really got his moneys worth. We would simply not have been able to do this in the same way if it was not for our direct payments and Helen. In the past everything would have been arranged around Lucy's timetable of feeding and Joshua would have had to accept that we would be stopping at regular intervals to sort her out.As it is now we have the time to give him our full attention and let him know that he is still very important. We have probably lost sight of that recently and have allowed ourselves to think that he copes very well and in reality this is not always the case. I asked Joshua to write a little bit about his day on Saturday and this is what he wrote:

"This morning we were looking for something to do when Helen/Mary took Lucy to Leeds. So I had a look on my computer for something to do, and I found a place called Diggerland, in Castleford. Helen arrived and we set off. Once we had arrived we took off around Diggerland. Even though it didn’t look much at first we ended up having a great time at Diggerland. It was really nice to have some quality time with my parents as I don’t usually have time with my mum and dad when Lucy is around, I sometimes feel as though I’m fading into the background and Lucy is standing out more, because I usually have to go and do my own thing whilst Lucy gets all the attention."

I asked him to be honest and I am glad he was. It is a constant balancing act and so difficult at times to get right. Joshua rarely shows his feelings but we know that he is a thinker. He carries a lot around in that young head of his and he shouldn't have to. I am just so pleased and relieved that we have the opportunity to concentrate on him more so that he doesn't feel excluded or sidelined because of Lucy.This is face that we need to ensure doesn't change.

15Apr08 - Accessorizing

noreply@blogger.com (Neil) — Tue, 15 Apr 2008 22:24:00 +0000

Back in January I had the uncomfortable task of choosing the design for Lucy's new splints ("Stepping In" Blog). The new splints have arrived and the verdict is yours.

These were the old ones.These are the new onesDid I make the right decision? Let me know by registering your vote in the poll on the right.

We also have just received Lucy's new covers for her Squiggle chair. It has transformed the chair into a vision in green.It is nice for the chair to be looking clean and new again because the pink covers have started to look a bit over used. To say that the chair is used for absolutely everything it has actually worn quite well. I think Lucy will like the change in covers, all girls need to accessorize! Changing the covers is a bit of a challenge but between us, Dawn and I eventually managed it. Today was the first day for Lucy to show off the new covers at school. I imagined her sitting in the car in excited anticipation of all her school friends seeing her with her shiny new green seat covers.I suppose we shouldn't encourage Lucy to show off but she was full of herself this morning.On the way to Lucy's classroom yesterday we stopped to chat with Sammi. Sammi is the the schools Family Liaison Officer as well as having a reputation of being an excellent cook.She always keeps me updated with photos from the school but has also just sent me a whole lot of her own curry recipes. I am thinking of trying them on Lucy as well. Helen (Mary Poppins) suggested that giving Lucy food with stronger/more spicy flavours may be more stimulating and help with her chewing and swallowing. Anything is worth a try plus it gives me an excuse to make Indian food more often.

After a long morning at school and a wheelchair assessment this afternoon Lucy was ready for a nap.She lay for a while smiling at herself in the mirror before finally dropping off to sleep. She had forty winks before it was time for bath, supper and bedtime. Joshua wanted to take Lucy up to bed and insisted on carrying her all the way upstairs.She is really getting a little heavy for him now but he is so careful with her and it is just lovely to see them together.Joshua tucked Lucy in and made sure she had her favourite cuddly toys within reach before giving her a cuddle and kissing her goodnight.

13Apr08 - Out of Africa

noreply@blogger.com (Neil) — Sun, 13 Apr 2008 22:14:00 +0000

I have just returned from a week working in South Africa which is why I have not blogged for a while. (Yes, I did fly BA and Yes they did leave my suitcase behind. Fortunately I did get it back 4 days later) I have got quite a bit of catching up to do.

It was school holidays the week before I went to SA and Lucy was involved in a school holiday play day. Sammi, the schools brilliant family liaison officer, sent some photos of the day while I was away. It is great that they always take photos so we can see what Lucy did. They went to a park in Leeds which has a "Tropical World". The children are always very well looked after and Lucy had a ball.I had a little chuckle to myself when I knew they were going there because the paths a quite narrow and I can just imagine what chaos a train of 13 or 14 wheelchairs would have caused. So what, I say, let the un-disabled people have access problems for a change.Helen was heavily involved in the day which was really good for me because we arranged for her to bring Lucy home at the end of the day which meant I could get a full days work in. I could tell that Lucy had had a good time because she was shattered at bedtime although it looks like she might have managed to get a little nap in during the day.Lucy went back to school while I was away. Dawn had bought her some new school clothes including a really cute cardigan.Not sure why she was in a deck chair but I am guessing they must have had a beach theme in the classroom last week. Lucy was also trying out a new chair for most of the week. The suppliers had brought it into school so she could get plenty of time in it, to really test it before we make the final decision on which she will have. The unique feature of this chair is that when Lucy pushes back, as she often does, the chair will give a little to allow the movement and then rebound back into position when she relaxes. Most chairs are simply fixed forcing a certain position. There are two schools of thinking on seating/support but we are going to go for the one which Lucy is most comfortable in because she will tolerate sitting in that for longer. She will need to spend more and more time in a chair as she grows and becomes less manageable.It has been a while since I have had to spend a whole week away. I guess it is just part of the job but I really missed Dawn and the kids. It was lovely to get back and find that Lucy still recognised who I was. I could just see it in her eyes. I wish I could bottle that feeling and take it with me.Dawn's mum was visiting from Portugal so when I got back on Saturday we all went out and spent a few hours eating and drinking, passing Lucy around while we finished our meals in turn. Lucy was very good but still much prefers sitting on knees rather than in her chair. In the end the socialising and cuddling were all a bit too much for Lucy and she succumbed to the sleep fairy.Not seeing Lucy for a whole week allowed me to see when I came back that she has changed. She is no longer a baby. I noticed it straight away and now I can't think when it happened, but what I saw when I came home was a little girl. She has grown up and is no longer that little baby that I have been so protective of. Its probably a normal feeling but it made me feel a little sad to realise that that first stage of her life has passed. At the same time I feel so proud of her, she overcame so much as a baby. Writing this down I realise that this is just the same way I would feel about Lucy if she had lead a normal life but because she hasn't, I believe the feelings are magnified and the developments become so much more significant.

31Mar08 - Single Dad

noreply@blogger.com (Neil) — Mon, 31 Mar 2008 21:06:00 +0000

Since last I have had Lucy mostly to myself. Dawn and Josh have been away for a long weekend in Portugal to make up for the holiday they missed when Lucy was in hospital there. I guess I have a single parent for the last four days. To my surprise it has actually been quite nice. I have had plenty of quality time to spend with Lucy and have also had my parents, cousins family to visit.Fortunately I was able to arrange it so that I could work from home. On Friday Lucy was in nursery all day and today she was on a play day arranged by her school. We didn't get the chance to do too much over the weekend because the weather was pretty horrible on Saturday and on Sunday I was showing off my culinary skills in the kitchen. It was just nice to relax at home and enjoy Lucy's company. I often think how difficult it must be for single parents with disabled children having to do everything themselves. I know at times we have struggled even though there are two of us, however being a single parent this weekend has been fine. Having the family here at the weekend was a help as Lucy was entertained most of Sunday. Also, Michelle from Crossroads came on Sunday afternoon for three hours to look after Lucy which gave me a chance to play host. I just found that I enjoyed being on my own and having Lucy with me. It was good to find the time to just sit and talk. Lucy really likes being spoken to and will sit and listen for ages. We even had time to fall asleep watching the boat race on Saturday afternoon which meant Lucy had a very late tea but so what!.

I suppose what I am trying to say is that a lot of the time it is too easy to look at our life as a journey from one task to another, having no energy or motivation to look beyond what we have to do next. That is when everything becomes a burden and the future becomes filled with more of the same. When this happens all the fun goes out of life and drudgery sets in. This weekend reminded me that it is important to take the time to enjoy each others company and to do normal everyday things together. Being a single Dad has been good for me and I think Lucy too.

24Mar08 - Eureka

noreply@blogger.com (Neil) — Mon, 24 Mar 2008 21:39:00 +0000

After being cooped up indoors for so long we decided that we needed to get out the house and do something today. We started with a nice pub lunch and even ordered Lucy a soup (curried parsnip) which we thickened up with some "Thick and Easy". She quite liked it and managed half the bowl. It was a bit of a break through and I don't know why we haven't thought of doing that before. We then decided to take the kids to Eureka ( http://www.eureka.org.uk ) mainly because it is indoors and it was freezing cold today. Eureka has lots of touchy feely displays which Joshua has always liked and we thought Lucy would be able to get something from it as well. Lots of people had the same idea and it was very busy but there was still plenty to do. As usual when we go to places like this Lucy was feeling sleepy and we had to poke her a bit to wake her up so that she could join in. I know it sounds cruel but we didn't want her to miss out. She enjoyed making music with Josh which seemed to wake her up for a while.We were pleasantly surprised that they allow one adult in for free as a designated carer which is worth baring in mind. It is not cheap to go in and it made us feel less aggrieved that Lucy was not going to be able join in with all the activities (over threes pay full price regardless). There was still plenty for her to do and Joshua certainly got his moneys worth.Even with all the excitement and noise we still could not stop Lucy dropping off every now and again.The best bits for Lucy were the dark areas where she loved looking at the lights. In this picture she is sitting in a sea anemone.She was also taken by the secret passage which is in complete darkness apart from lots of tiny pinhole lights. We had to go through there a couple of times before we could move on. It was a bit inconvenient for everyone else because her buggy took up the whole passage but I didn't worry about it and took my time.We then found a dark area with stars and images representing star constellations which was nice because you can sit down inside it. We spent about 10 minutes watching the lights going on and off while the narrator told us what we were looking at.It was a good afternoon and nice to be out the house doing something. Lucy must have enjoyed it because she was ready for bed tonight and I haven't heard a single noise from her since I put her to bed.

23Mar08 - Well Again?

noreply@blogger.com (Neil) — Sun, 23 Mar 2008 21:14:00 +0000

The last week and a half have been a struggle. All four of us have been ill at some point. Joshua was the first to go down. It is unusual for him and I can't remember the last time he was ill. He missed 2 days of school and it was 4-5 days before he was back to himself.Dawn was the worst and was in bed for almost a week with severe pharyngitis. She even had a few hours in hospital with breathing difficulties. Fortunately I stayed well and was able to play nurse and see to the kids. I had some help from my parents who stepped in so that I could go to work. On the morning my parents took Lucy to school, Lucy was sent home with a temperature and subsequently is on another dose of antibiotics. I managed to pick up a stomach bug which put me in bed for most of Saturday and that was just the icing on the cake. I just hope that that is it now and the sickness fairy will leave us alone for a while. Dawn is rightly paranoid about picking something else up this week as she and Joshua are heading off to Portugal on Friday for a short break. This break is to make up for the last disastrous trip when Lucy spent the whole time in hospital. This time Lucy will be staying at home with me which will give Dawn and Joshua some quality time to do whatever they want to.

It is rare for either of us to be ill but with Dawn being in bed ill for so long it really opened my eyes to how exposed and isolated we are. If We did not have my parents to call on at times like this then we would be really stuck. Who knows what we would do if we were both ill at the same time? I am sure that it must be the same for many parents like us. We have never been short of somebody to look after Joshua because it is so easy to drop him off at any ones house. However with Lucy it is obviously completely different. Looking after Lucy is much more of a burden than looking after a normal 3 or 4 year old who would be happy to watch TV or play with their toys. Entertaining Lucy is actually the easy bit, the care side of things is much more daunting for someone who is not used to it. All the every day cares like changing, feeding, giving medicine, bathing, maybe physio are different with Lucy and there are not many people who a naturally comfortable doing them. Not only is it "different" but it is also hard work. Without knowing Lucy intimately it is impossible to know where her boundaries are, for example, how far to push her with feeding or how to handle her. There is a lot to learn about caring for Lucy which can only be learnt through regular contact with her. We are very fortunate that we are getting some regular help from Mary Poppins (also known as Helen) through direct payments which is "supercalifragilisticexpialidocious". Having a regular few hours breathing space every week is really going to make a difference.We are also getting some help from Crossroads who will be coming for two hours three out of every four weeks. However emergency care for Lucy is definitely a worry.

18Mar08 - Your Family

noreply@blogger.com (Neil) — Tue, 18 Mar 2008 23:13:00 +0000

This month we have had a story about us published in "Your Family" magazine. The magazine is distributed free by Early Learning Centre shops and is supported by the NSPCC. The magazine got in touch with me via Contact a Family and asked if we would be interested in telling our story. I was sent a list of questions by email for both Dawn and myself to answer. This all happened in December and finally in March the story has been published. If you want to read the article you will have to pick up a copy of the magazine from your nearest early learning centre as I do not have an electronic copy. The article is a very concise version of our response and I feel does not fully represent what we wrote. These are the questions we were asked, the responses we gave and a couple of photos used in the magazine:

What disability does your child suffer from and how did it occur? Was she born with it?

Neil's Comment
Lucy was not breathing when she was born. She was kept alive with oxygen "bagging" while they tried to resuscitate her. She was rushed to the neonatal unit where she was placed on a ventilator. We were left in the delivery suite for a couple of hours with no information until we were finally told that Lucy was still alive. Lucy had suffered oxygen starvation (Hypoxic-Ischemic Encephalopathy) during birth, the consequences of which emerged over the following weeks. Lucy stayed on the Dewsbury neonatal unit for 6 days. When she started to come round the doctors became concerned that Lucy was having fits, in fact one of the nurses said to us "She is just fitting all the time!" (At that time we didn't really know she was having fits at all) and so Lucy spent much of the time under sedation. On the sixth day I arrived at the hospital to be met by Dawn who was quite distressed. Lucy had deteriorated and developed a very red and swollen abdomen. One of the senior nurses suspected that she might have Necrotizing Enterocolitis (NEC) and had arranged for her to be transferred to the childrens ICU unit at Leeds General Infirmary. I wrote this blog (http://littlelucymay.blogspot.com/2007/09/150907-memories.html) about the memories of those weeks. The NEC was likely caused by the oxygen insult which damaged her bowel due to lack of oxygen/blood flow. Luckily she escaped without surgery and as she recovered her underlying condition began to show itself. Lucy has severe athetoid cerebral palsy, is quadriplegic and has epilepsy. We can not say for sure if she can see, she will never walk (both her hips are now permanently dislocated), there is no prospect that she will ever talk and she has little or no purposeful movement.

What were your feeling's when you discovered your child had a disability?

Neil's Comment
Discovering Lucy's condition was a long process of gradually receiving bad news, where each new revelation delivered worse news than before. The first few days after Lucy was born were extremely hard. I can remember finally driving home alone on the day Lucy was born and parking on a quite road, getting out and sobbing uncontrollably for what seem like ages. I also remember hiding my sadness and trying to be strong not just for Dawn and Josh but for our close family as well. I saved my tears for when I was alone. After the initial shock I focused on what Lucy was going to be like and nobody could tell us that. When we were first told that Lucy was going to have problems, she was described to us as probably only being mildly affected. The more she came round, the more it became obvious that mild was not the correct adjective. All the time we both kept asking ourselves, "Are we going to get to take her home?". Then she got NEC and everything suddenly became very serious as NEC can be fatal. I am not sure of the stats but I remember being very scared. For the next few weeks we only thought about Lucy surviving. We were traveling backwards and forwards to the Leeds General Infirmary every day. Lucy was on a ventilator being drip fed Morphine. During this time the whole thing became kind of normal. We passed on news to the family without emotion and we talked about Lucy's condition in such a matter of fact way. The gravity of the situation simply became too much and I think our natural defenses dulled our senses and numbed our emotions to enable us to cope. My blog about switches explains my feelings on this (http://littlelucymay.blogspot.com/2007/10/06oct07-switches.html). After Lucy's MRI scan we were finally told just how severe Lucys' cerebral palsy was likely to be and although it was tremendously sad to hear it spoken it was not really a surprise, I had already told myself that the worst was probably true. I just wanted to take her home. The only thing that really got to me was when I asked on the day Lucy was finally discharged, what her life expectancy was. We were told that because of Lucy's condition and her complex problems she would always be at risk from chest infections and other complications. We were then told that Lucy may not live beyond 3 years old. I wrote a blog about this as well (http://littlelucymay.blogspot.com/2007/11/21nov07-welcome-home-dad.html). I spent the next three years dwelling on this and have only recently been able to move on now that Lucy has passed her third birthday.

Dawn's Comment
I remember one of the neonatal nurses telling me that the Doctor wanted to have a 'word' with us. As we still had no idea what was wrong with Lucy I just asked the nurse, 'Will we be able to take her home?' to which she replied, 'You will take her home and you will love her no matter what'. I was just so relieved. I think I already had a sixth sense that our lives were going to be very different but the only thing that was important and still is, was that my little girl was alive.

What support and information did you get ?

Neil's Comment
I don't remember having any real support. People would always ask how Lucy was doing and occasionally they would ask how you are but when they did I never once told the truth. The truth of it is that close family are not able to offer support because they also affected by the situation and probably needed support themselves. Both dawn and I often felt like we had to act as the support givers especially when we had to tell people the next set of bad news.

As far as information goes I can imagine that some people become lost in the situation and don't push hard enough to get it. We were always realistic about the situation and wanted to be told exactly what was happening, what were the options and what were the likely outcomes. If we weren't sure then we would ask again. Doctors and Consultants will tell you as much as they think they need to but too often it is not enough. I am sure if we had not been as direct as we were then we would have been in the dark most of the time. In the whole time Lucy was in Hospital we hardly missed a ward round. What we really wanted to be told was what was Lucy going to be like, what was our life going to be like and why did it happen.

Dawn's Comment
We are very fortunate that we have a fantastic 'Child Development Centre' in our area and Lucy was very quickly scooped up into their care. From Lucy being literally a few weeks old we had the full support of all the various therapists. I got to know them all very well and in addition to their medical expertise I also find them to be a wealth of emotional comfort for me. They always draw on the positives which is one thing that quite often seems to be lacking in many of the professional fields. The most challenging thing has been trying to get the medical profession to treat Lucy as an individual and not to categorise her as just another child with cerebral palsy. There have been occasions when Lucy has been 'simply' poorly but they always seem to want to attribute it to the CP. The standard treatment protocol for CP children seems to be muscle relaxants and gastric tubes.

How did your feelings change when you finally accepted the news ?

Neil's Comment
I am not sure that you ever fully accept the news that the child you have been dreaming about for months is somebody very different. I felt very angry that this happened to my daughter and at the same time I felt incredibly sad that I was not going to be able to do all the normal things that Fathers do with their Daughters. I am never going to walk Lucy down the aisle, I am not going to be a grandfather to her children, I am not going have to worry about her boyfriends and I am never going to hear her say Daddy. Over time I understood that these are selfish thoughts and torturing myself will not help me to accept that the life I have now is very different from everybody else's but it can still be very rich and fulfilling. What did change are my expectations for the future. I learnt not to expect anything of Lucy and accept that all the experience I have is no longer relevant. I had to adjust to building a relationship with my daughter that at first I did not understand. I accepted that Lucy would develop in her own way and her achievements although unrecognisable to someone on the outside would be small miracles. Lucy is very special to me and I love her so much. Lucy has brought all kinds of different experiences to my life that I would never have had without her and although we have a different relationship than the one I was prepared for, what we have I wouldn't change.

She has taught me so much about myself and about our society. She has shown me that genuine human kindness still exists and also that indiscriminate prejudice is everywhere. Living with Lucy is a constant learning experience and at times I find it very hard but I have been given an opportunity to be part of a world that is very special. It is a world that exists outside the consciousness of the average person and which is seriously undervalued. I used to be normal but now I feel special.

Dawn's Comment
I still sometimes grieve for the child that I thought I would have but those times are now thankfully few and far between. I strongly believe that things happen for a reason and I know that Lucy has a very valuable place in society. In her three short years she has brought so much joy and understanding into so many peoples lives. Much more so than I could ever hope to achieve in my lifetime.

What is the child’s view of their life, (if they are old enough to comment
could they perhaps give me a sentence or two on how they enjoy life etc?)

Neil's Comment
I am afraid that Lucy is unable to comment but if she could she would say, "I love life and I love people. I have lots of friends and a very special family. My school is brilliant and I am really happy there. Mummy and Daddy get a bit too serious at times but mostly they are ace too. I love my brother very much because he makes me feel happy and he always looks after me. Sometimes I get frustrated because I can't do what I want to but I just love being me."

What can and can’t the child do?

Neil's Comment
Lucy is able to chew and swallow which is a huge positive. It means we can feed her and she does not need a horrible gastric tube. She can communicate her moods and feelings although not in a conventional way. She communicates a lot through her body and occasionally through her eyes and facial expression. We always know when she is happy, cross, tired, uncomfortable, under the weather etc because we have learnt to know and understand the signals that she gives.

Do they attend school? If so, do they enjoy it?

Neil's Comment
Lucy started school in September. She will only do mornings until next year but this is probably enough for her at the moment. The school (Fairfield School, White Lee, Batley) only opened this year and is purpose built. The facilities they have are state of the art and the staff are absolutely fantastic. She is getting more attention and stimulation now than she ever has. I think she enjoys it and I have often seen her smile when she is greeted by her teachers. She does get tired but I think this just shows how much fun she is having and how hard she is made to work.

Have their been many disadvantages/advantages in bringing your child up?

Neil's Comment
Bringing up Lucy has been an emotional roller coaster. I never thought that coming to terms with Lucy’s birth would be so hard. One of the hardest things is seeing little girls Lucy’s age because I can’t help wondering what she would have been like. If I can I will still avoid being around other small children. I have tried not to make comparisons but I just can’t help it. The selfish sadness for what I lost is as strong now as it was 3 ½ years ago.
Lucy’s care and upbringing is under constant review by so many different people. There are so many appointments for all sorts of things. There has been an avalanche of recommendation, advice and interference from every service you can think of. They rarely talk to one another and you have to tell Lucy’s story over and over again. Unfortunately Dawn has had to deal with most of this and I know she has felt so many times that she just wants to be left alone. It has never been possible to do all the things we are asked to do with Lucy and you can’t help but feel guilty that you are not doing everything possible to help Lucy as much as possible.
Our life has become driven by Lucy’s timetable of feeding, medicine and therapy. We can not leave the house without thinking about how long we will be gone. We always need to take enough food and medicine for Lucy. Since June when Lucy had her first major fit, we also have to carry shots of midazolam in case Lucy has a prolonged fit. The constant carer role leaves little time or energy to just be a parent and enjoy time with the children. Joshua definitely does not get much one to one time with us anymore and has to entertain himself most of the time.
Now that Lucy is getting older we are starting to discover that there are so many more barriers waiting for us. Simple things like getting on a plane to go on holiday now have to be considered carefully. Not all airlines will cater for Lucy. We have to plan our days out to places that are wheelchair friendly, no more long country walks. The alternative that we some times have to choose is just to do things separately and not as a family. I sometime feel like our whole family has become disabled.
Lucy is no longer a baby and has become more obvious that she is different. So we increasingly have to put up with the funny looks, stares and inappropriate comments. It has really opened my eyes to the level of ignorance and prejudice that normal people have. I know Lucy doesn't mind but I always feel like I have to protect her from it. Dawn always tells me not to try and change the world one person at a time but I wish people in general were able to see the little girl and not just her disabilities.
Whilst life has become very different it has opened my eyes to a completely new parallel society. I have joined a very special club full of people just like me. We are always meeting new people from "The Club" and we have a new circle of like minded friends. I guess some of our old friendships have waned a little, it is just more comfortable being around people in our situation because it is so much easier to talk openly.
We have also become much stronger people almost by necessity. We are able to deal with things that 4 years ago would have turned us into gibbering wrecks. I do feel blessed to have the opportunity to bring Lucy up and every day I do is a bonus. In a way my feelings for Lucy are magnified by the difficulties she faces. I have got a very special relationship with Lucy for which I am very grateful for. Bringing Lucy up is very hard but the rewards far outweigh the hardship. Lucy has brought so much to all our lives in all sorts of different ways. She has changed the lives of so many people. She is like an ambassador for the disabled community. Lucy is able to reach out touch people, friends and strangers, in a way that a normal person can't. People who have met Lucy have been so deeply moved that they have done the most amazing things as a consequence. The genuine love and care that we have been shown through Lucy being with us has been truly overwhelming. I love being Lucy's Dad and I love the fact that we have experienced what we have with her. All the hardship makes you really appreciate what you have and you really start to make the most of it. I will never again take for granted that everything will always be OK so I will enjoy every moment I have.

Dawn's Comment
Lucy is an absolute inspiration to me and I am so proud of her. Although there are disadvantages such as having to plan every day events with meticulous detail and struggling with the basic things such as feeding, bathing, dressing etc, the advantages definitely outweigh the disadvantages. My life has been fulfilled in so many different ways and a whole multitude of new doors have been opened. I have come into contact with the most wonderful caring people and I have forged friendships that I know will last for a lifetime. I have been involved with our local Early Support Initiative and have been given the opportunity to voice opinions from a parent perspective. These are all things that I would have never experienced if it had not been for Lucy.

Has it been very challenging/do you get any outside help? (Note: Since writing this response things have changed and we are now getting extra support via direct payments and from Crossroads)

Neil's Comment
Dealing with the emotional side has been more difficult than getting used to caring for Lucy although much of the caring has been done by Dawn as I have continued to work full time. Initially getting used to all the hospital visits and having to go to a Child Development Centre regularly was a daunting prospect. I did not have enough free time to go to many sessions but when I did it took me a while to get used to it. Now I look back and know what an important role those play therapists and physiotherapists played in teaching us that Lucy is just another beautiful little girl who loves to play and have fun. She will express herself in her own way and has a lot to offer society. These play and physio sessions allowed Dawn to meet and mix with other mothers in the same situation and as a result she has made a lot of very close friends who now have a lot in common. It is a shame that there is no similar outlet for fathers. It seems that fathers systematically fall outside the usual circles of care. I guess because most fathers have to work full time that they miss out by default. I did find it hard to get involved in Lucy's day to day life. I never really got to know some of the physio techniques or the play methods even though dawn did try to pass them on. I felt too often that I was not able to do as much as I wanted to. I have had little contact with any other fathers in my situation and have never really had any outside help in coming to terms with it.

It is becoming increasingly challenging looking after Lucy as she grows. We have had a lot of help with the processing of our application for a grant for adaption of our house for Lucy. It look like this will now happen in the next few months. Dawn is now starting to struggle lifting, feeding and bathing Lucy because she is starting to get heavy so it will be great to have a way of moving her around more easily. We have always had excellent support with equipment for Lucy and have never really had to fight for it. This is mainly down to the brilliant team at the Dewsbury Child Development Centre who have been with us from day one although now that Lucy is at school we no longer regular contact with them as we were effectively discharged as the school now takes care of all Lucy's needs.
The main area of support that we really feel we need is respite but this seems very hard to get. We recently went through a tortuous process with Social Services to assess what help we need for Lucy. We emphasised respite as the main issue and were granted 3 hours per week in direct payments. How can we employ someone for 3 hours a week and what can you do in three hours? We have a very supportive family but not a large one so there are few opportunities to really get a break.

What are your thoughts for the future?

Neil's Comment
This is a very difficult question. I cannot picture what the future is going to be like. I don’t know what to expect. As Lucy grows she will become increasingly difficult to manage and care for. We are going to need help but I don’t know where that will come from. Maybe sometime I will have to consider changing jobs or even stopping working to help care for her. Most parents plan for the time when there children leave home, go to university or get married. All I know for sure is that whatever plans we make for our future will have to include Lucy. We used to talk about retiring and driving around Europe in a two seater convertible but that is no longer an option. Maybe we will have to do it in an adapted camper van instead. I do think about what will happen to Lucy if she does outlive us both, who would look after her and how we could possible ensure that she was cared for in the way we do. I cannot bear to think of Lucy stuck in a home left for hours on end to entertain herself. I worry that Joshua will feel obliged to become her carer. Mostly I avoid looking too far forward and just take each day as it comes. I will just enjoy being Lucy's Dad as long as I can.

What is her life expectancy?

Neil's Comment
I explained earlier that initially we thought that her life expectancy was not that great (3 years) but Lucy is healthy and strong now and I fully expect her to reach adulthood. Nobody can say for sure or would commit themselves even if they could. As she gets bigger and her body has extra work to do she may develop problems particularly chest/respiration related but it is impossible to predict. There are many stats available on the internet but none are conclusive. Severity of cerebral palsy is categorised 1 (Mild) to 5 (Severe) and Lucy falls into the latter. Life expectancy decreases with severity but this does not mean that Lucy won’t live longer than we do.

Dawn's Comment
My philosophy is just to take one day at a time. I try not to look into the future and just focus on the here and now. I do not know what Lucy's life expectancy is but I do know that every moment is precious and with every new day we are busy making new wonderful memories.

Do you plan on having more kids?

Neil's Comment
We considered it for a while but I don’t think we will now.

Dawn's Comment
For a while I did want to have more children. This was in the first year or so when I think I was trying to recreate the child I thought I had lost. I now realise that Lucy is not a lost child and she is more special than I could ever have imagined. I no longer feel the need to fill a 'gap' - Lucy has taken that space and made it her own. I know that in her lifetime she will change peoples attitudes and help to stamp out day to day prejudices.

"Even though she will never walk she will most certainly leave her footprint on this world"

11Mar08 - More Therapy

noreply@blogger.com (Neil) — Tue, 11 Mar 2008 20:44:00 +0000

We continued with our therapy sessions this morning by repeating what we learnt yesterday. Surprisingly a lot of it had stuck and it was good that they are already starting to feel familiar. Some of the exercises are the same for Lucy and Laila so we ere able to learn them at the same time as Hayley and Paul.As well as new exercises we are also using a different technique. Previously we have been using a technique which involved applying constant gentle pressure with the fingers, whereas the new method is a pulsing movement. The theory is that different pressures applied in different ways can stimulate different cells. I don't fully understand the science behind it but I am willing to try anything that might be beneficial.I am unable to take part in the sessions on Wednesday and Thursday as I have to work so I was especially keen to get through all the exercises today. I was finding it quite difficult to retain all the information but I think by the end of the session I could at least run through all the exercises even if I had to follow the notes for a couple of them. I am sure that after a few days Dawn will need to help me to get going but after that I should be okay.Lucy managed to tolerate one set of exercises lying on her front but after that she decided she had had enough and objected so much that we had to complete the exercises on each other.We are just going to have to persevere with the back exercises and hope that Lucy will become more tolerant. Dawn used to do the back exercises with Lucy on her knee which Lucy didn't mind too much but unfortunately Lucy is just too big for that now. Once the session had finished Lucy relaxed and enjoyed a quiet 10 minutes lying in her corner with Laila's new little sister Kyla.Today was also the day that the Direct Payments we were awarded for help with Lucy actually started to give us the support that we asked for. We have been really lucky to find someone to help as soon as we have. We have been even luckier to find someone who not only is more than qualified to care for Lucy but also knows Lucy very well. Helen is a school nurse at Fairfield School and has had 10 years experience working with children at the school and in the community. As soon as Helen arrived and started talking, I could tell that Lucy was taking notice and listening.Lucy was immediately comfortable with Helen and was spoilt to one of the longest baths she has had for a long time after which, Helen dressed and fed Lucy despite being splattered with weetabix. It is quite a big thing inviting someone into your house to take care of your child in this way but I know that with Helen, Lucy will definitely be in safe hands and will probably get more quality attention than normal. Also it will give the rest of us the chance to have a breather and spend some quality time doing other things. Lucy is looking forward to the next time which hopefully will be on Friday evening.

10Mar08 - Scotson Home Therapy

noreply@blogger.com (Neil) — Mon, 10 Mar 2008 22:03:00 +0000

It has been a really good week for Lucy and she has been back to her old self. Even the cat has noticed how relaxed Lucy has been.It is just what we wanted as this week we are again learning new therapy exercises as part of the Scotson Advance Centre's (www.advancentre.org.uk) on-going treatment. For this week one of their therapists offered to travel to us and teach us at home, saving us the expense and hassle of traveling all the way to East Grinstead. We are sharing the cost with our friends Hayley and Paul who also do the therapy on their daughter Laila.The therapist Janos will be staying with us until Thursday giving us all plenty of time to learn and practice the new exercises. As usual on the first day we were introduced to a completely new set of exercises which can be quite daunting at first. However once you have repeated them a few times and get used to the sequence and the rhythm, it becomes easier. I am sure that by the time Janos leaves on Thursday they will be second nature and we will be able to do them without constantly referring to the notes. Lucy and Laila were both very well behaved and didn't complain at all while we fumbled around trying to get it right.The exercises we have to learn consist of five sets of different exercises, two on the front and three on the back. Lucy has always been tolerant of the exercises on her front as she likes to lie on her back, but she really dislikes lying on her front so the three sets of exercise on her back are going to be more difficult. At the end of the session today we started on the first of the back exercises which involves working on her back and head simultaneously. She didn't like this very much at all and she squirmed around like an eel. Hopefully through doing it every day she will learn to tolerate it more.In addition to the exercise therapy at the clinic, Lucy and Laila would normally also have hyperbaric oxygen therapy in the clinic's own oxygen chamber. It is a shame that we can't find a similar facility a bit closer to home that we could use but we will have to wait until we go to the clinic again. I am sure Lucy is pleased though because she never likes the oxygen therapy. It has made a big difference having Janos here with us as we have cut out all the travel to and from the clinic each day. We don't have to worry about packing up Lucy's food etc every day and overall it is so much more relaxed. If it wasn't for the clinic's progress assessments and the oxygen therapy, this is definitely the way to do it.

04Mar08 - Life Goes On

noreply@blogger.com (Neil) — Tue, 04 Mar 2008 14:59:00 +0000

Our lives have returned to some kind of normality after Lucy's extended holiday in Portugal. We all spent most of the weekend trying to relax and unwind. We were just so relieved to have Lucy back home again because there were times when home seemed so far away.We took Lucy to our local GP for a quick check up on Monday and thankfully she got the all clear for now. I can't help wondering how long it will be until the next time. In her short life Lucy has had more than her fair share of difficult times and she deserves to be given a break. If only I had a magic wand!

It has been lovely seeing Lucy's character and energy returning. She has been so content since coming home, even her happy face is starting to show again. We felt that today she was ready to go back to school and I could tell as I carried her down the corridor that she was glad to be back. Everybody made a big fuss of her but she took it all in her stride, even threatening to go to sleep. There was no chance of that after her teachers got hold of her.Messy play was the first activity of the day and Lucy was straight into it. They use special wedges so that the children can lie on their bellies and get their hands covered in messy stuff or in Lucy's case hands, arms and hair. She will be back in Dad's Salon tonight! Lucy must have enjoyed it because she tolerated lying on her stomach for quite a long time. Normally she really objects. By the time we left both her arms were covered and she had nice pink highlights in her hair. I just love the school, it is such a brilliant place for Lucy to be.It is amazing what a difference a week can make. I like to think, probably wrongly, that with each infection/illness that Lucy has to fight off, she gets a little bit stronger. The truth is not clear but it is certain that in the future there will be many more times when she will need her strength to pull her through. All we can do is learn to make the most of the good times and deal the difficult times when they come along. I am just so glad that for now I have got my little girl back!