27Jul08 - Adaptions Update

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

07Jul08 - Brother and Sister

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

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

30Jun08 - House Adaptions

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

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

19Jun08 - Is it really?

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

11Jun08 - A Life of Love

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

I received this poem from a reader in America.

A Life Of Love
Written for Lucy May & Family

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

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

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

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

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

written by Eric Sander Kingston

23May08 - Why & How

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?

02May08 - Disabilism

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.

18Mar08 - Your Family

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"

21Jan08 - Normal Party

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

11Jan08 - Long Week

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

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

30Dec07 - Post Christmas

Christmas is over for another year. It was nice to spend time with my family and we all had a lot of fun. Lucy enjoyed the time even though she was struggling with a bad cold. She has deteriorated since then and as yet the antibiotics which she started on Thursday have not really worked. Her temperature keeps spiking and so is having intermittent doses of paracetamol to help control it. She has become quite sleepy and her cough is not showing any real signs of improvement. We have decided that if she hasn't improved in the morning we will take her back to the Doctors. There are plenty of nasty colds around at this time of year and she is unfortunately more vulnerable to them. She is also less equipped to fighting them. It just seems to take her a lot longer to recover. It is a concern that the antibiotics have not been so effective this time. I always worry about the number of times she has had them and how effective they will be in the future. Feeding time is a challenge at the moment with every mouthful causing her to cough and splutter. As a direct result our washing pile is rapidly growing and our tolerance to Lucy spitting food in our faces is being severely tested. At times like this life feels more difficult than it should and this is compounded by those unspoken Christmas thoughts which will linger for some time.

Christmas was a really good but at the same time it is on occassions like this that the differences we face with Lucy are magnified. Lucy is at an age now where she would have really started to appreciate Christmas. She would have been so excited to have a stocking in the morning, hanging from the end of her bed and a pile of presents to open under the tree. We should have been looking forward to the look on her face as she ripped open her gifts and to seeing her playing excitedly with her new toys. She should have been running around playing with her cousins and should have been able to sit at the Christmas table, maybe even pull her own cracker. Instead we have to do our best to make the day feel different from any other day, let her feel her presents before we open them for her, try and involve her when really she was probably not aware of what was going on. I don't know what got to me more, the feeling that she was missing out on the magic of Christmas or the feeling that I was missing out on seeing her enjoy it. I have tried to tell myself that she enjoyed Christmas in her own special way and that we did the best we could to make it a special day for her. This only helps to shroud the sad reality of Lucy's disabilities. I hope I am wrong and that Lucy is able to draw as much enjoyment from special occassions as I percieve to be normal.

16Dec07 - Catch Up

After a busy end to the week we have had a fairly relaxed weekend. We managed to finish off the Christmas shopping and cards so much of the Christmas stress is over. It was difficult because it has been so cold and we have had to wrap Lucy up in a little cocoon in her wheelchair. I probably worry to much about Lucy and the cold but the last thing we want at Christmas is another chest infection. My parents visited today to bring presents and just catch up before Christmas so Lucy was not short of attention.She can be quite manipulative and is getting very good at getting her own way, although I don't think her grandparents mind one bit.As you can see from the photos Lucy was in her element and had a really nice afternoon.

This week we took delivery of Lucy's new Mangar bath seat. She has been using an old baby seat that now she is much too big for. Also due to her size and weight it has become quite a strain to get her in and out of the bath. The new seat will lower her into and raise her out of the bath to save our backs but as with most things it is not so straight forward. The seat is large and awkward to move so it is likely that now we have started to use it, our bath will only be used for Lucy.There are suction pads which keep it fixed to the bottom of the bath and it is quite hard to remove it again. It is also heavy and awkward to lift so from now on the rest of the family will have to make do with the shower. This will affect Joshua more than anyone, who has been used to having his nightly bath since he was born. It is better for Dawn who has really started to struggle when she has to bath Lucy. Lucy is simply getting too heavy. Dawn will now be able to sit Lucy on the raised seat without having to lower her manually into the bath.There is a remote control switch that then lowers the seat into the water. I am glad we are not yet on a water meter because we have to put at least double the amount of water into the bath to get Lucy wet.The seat is just another piece of abnormal equipment that we will have to get used to. I have to remind myself that it is for our benefit and that I should be grateful that we have been given it at all but I can't help seeing it as another reminder that life is difficult and that we need help. Just the fact the I can no longer use my own bath without the difficulty of removing a large piece of equipment highlights how invasive Lucy's requirements have become and it is certainly not going to get any better. I know that this seat is necessary and that it will help us. I also know how lucky we are to live in a country that provides these things for families like ours. It just takes some getting used to before you can view the change in a positive light.

07Dec07 - Busy Week

It has been one of those weeks when you look back and can't think how it got to Friday already. Lucy has had a pretty good week but has been really tired at the end of the day. At least three nights this week it has been a real struggle to give her her supper before she fell asleep. Last night I only manage to give her half her supper before she passed out. She had a full day of school in the morning and nursery in the afternoon and by suppertime she just ran out of energy. I finally gave up on trying to keep her awake and put her to bed. She had a really good nights sleep and I don't think she stirred until this morning. I think she is finally getting back to normal and I have started to see that little spark in her eyes again.

On Wednesday Dawn took Lucy to an ophthalmic appointment (eye check up) at the hospital. They are still trying to establish how much Lucy sees and if she responds to what she sees. The usual stupid questions were asked, "Does Lucy ever reach out and touch anything?", "How does Lucy communicate?" etc. Even if Lucy wanted to reach out and touch something, she isn't able to! Dawn explained that Lucy responds really well to changes in light, particularly from dark to light. We have some lights in her bedroom that she lies under and whenever we turn them on Lucy raises her arms, her expression changes and sometimes she will make little noises as well. Now if that isn't responding to what she sees then I don't know what is. Now she doesn't start clapping her hands or start singing twinkle twinkle little star but for her to react at all is absolutely brilliant and I just love watching her while I turn the lights on and off. Anyway the ophthalmologist turned the lights off in the room and the turned them back on again. Lucy immediately raised her arms and made a few little noises. Dawn could feel Lucy's response as her body stiffened as she raised her arms an inch or two. The ophthalmologist didn't say anything but just looked at Dawn with that shrugged shoulders look on her face. Why do these people always have to make comparisons with what they perceive as a normal reaction from a normal child? Maybe they are just not trained to understand that the same reaction in different children can be expressed in different ways. I can just imagine what was written in Lucy's medical notes. Dawn wasn't in the mood to challenge her and even if she had it would have made no difference. We know that Lucy must be seeing something and that is what is important. I have just started reading a book which has a forward by David Cameron (MP) who has a four year old son with epilepsy and cerebral palsy and he writes,

"The important thing is that you will come to know your child better then anyone else. You certainly need to listen to advice, but you also need to trust your own intuition and judgement".

Dawn found Lucy's lost pair of glasses this morning which we have already replaced, so now Lucy has two pairs of glasses. I see that as a little sign that confirms we are right.

03Dec07 - Changing Rooms

Adaption of your home is something that all families in our position have to face at some point and initially it was very difficult for me to accept. We are now at the stage where builders are coming round to do their site visits before they submit there bids for the work. This has made it very real and it is only going to be a matter of months before the work starts. Having had some time to get used to the idea we have decided that we are going to make the most of it and do as much as we can to make it a lovely place for Lucy to be. Of course we will probably decorate it with a nice girly theme, probably pink because all little girls want pink bedrooms (I think), but we have started to think about more specific sensory ideas. Sensory equipment is not cheap as you will find out if you look through the various catalogues, however it is likely that Lucy is going to spend a lot of time in her new room and it will be really good if we can have a proper sensory room in the house for her. Most of Lucy's vision is in the upper right quadrant so when she is lying in bed she is looking back and to the right. We would like to create a starry night affect with fibre optics on the ceiling and a wall behind her bed which she can enjoy while she is waiting to fall asleep. At the moment she spends an hour or two every other night staring into the darkness and if she had nice twinkly lights to look at I think she would really like it. We have also thought about rotating mirror balls and also a projector which projects slowly rotating images onto the walls and ceiling. If we can also use black-out blinds on the windows then Lucy could use this during the day well. Normally you save up for when your children leave home, go to university or maybe even need their first car, but with Lucy it is more important to provide stimulation and enjoyment for her now. We are still at the ideas stage and are not really sure what we can and can't do. It would be really good if there was someone that could come and show us different options or even design the room for us but I don't even know if such people exist. We will probably just have to use that universal consultant, "Google" and work it out ourselves. Its no big deal, we have been ICU specialists, Physiotherapists, Care Workers, Paramedics, we can deal with epileptic fits and know what dozens of medicines do, so why not Sensory Room Designers as well. At least it has given us something positive to think about and I really can't wait to see what we manage to do with Lucy's room and especially watch her little face when she sees it all for the first time. Any ideas would be gratefully received!!

26Nov07 - Time

It was about 22:00 today before it struck me that there has been no time at all today. How many days pass that merely consist of moving from one task to another? Whole weeks can go by like this and at the end of it you look back and realise that you can't remember having any time at all. Today started at 6:00am getting Joshua and Lucy ready for school. Well actually getting Lucy ready for school because Joshua pretty much takes care of himself these days. About 5 minutes before it was time to leave I realised that I had not shaved, brushed my hair or teeth, I had no time. I arrived home after the school run at about 9:30 already late to start work (luckily I was working from home today). The next time I looked at my watch it was time to think about picking them up again. 18:30 back at home, medicine, bath, supper and then exercises. Again Joshua took care of himself. I had to get him to do some maths homework while I gave Lucy her supper. I finished feeding her at about 19:30 and gave her 20mins before starting her exercises. My parents arrived as they are looking after things tomorrow as I have to go to London to work and my mother offered to cook which was nice. While she did I started the exercises and finished them after we had eaten. I didn't quite manage the whole program and finished at 21:00 so I could put Lucy to bed. Joshua made his own way to bed and was waiting to have his light turned off. There were a few minor arrangements to sort out for tomorrow like the car seat and pram etc which were still left to do before having a sit down and a cup of coffee to end the day. Now it is late but I feel like I need some time to just sit and unwind although probably I should be in bed recharging for tomorrow.

I can remember a time when I used to enjoy just sitting doing nothing and thinking but this just seems like a waste of time now. Only when it is late and quiet do I allow myself this luxury. It is so easy to get consumed by the constant race from one duty/job/chore/obligation to the next that you forget why you are doing it and when this happens you find yourself questioning what you are doing. Life becomes a bit like a job and I don't care what anybody says, jobs can be enjoyable but they are not about having fun. We work so that when we are not working we can have fun. The problem is is that when work takes all your time you are too exhausted to be bothered with fun. I am probably the worst culprit for taking life a bit too seriously and not making enough time to have fun. I guess that makes me a bit grumpy sometimes and leads to rambles like this. Listen to me moaning, I have only been left alone for a few days, Dawn has been doing this for 3 1/2 years!

16Nov07 – Back to Reality

Lucy is still not very well and so we booked an appointment at the doctors this afternoon. Before the appointment Lucy had a coughing fit which rally upset her. You could tell that she felt panicked by all the coughing and this upset her even more. By the time we got to see the doctor she was inconsolable which made it quite difficult for the doctor to listen to her chest properly. She began to talk about referring Lucy to the hospital which we thought unnecessary but she was obviously influenced by how upset Lucy was at the time. In the end she changed Lucy’s antibiotics to cefalaxin which has worked in the past when Lucy has had chest problems and hopefully it will work again. It is still to early to start the therapy exercises and we will probably wait another few days until Lucy has fully recovered.
After a long week in the south of England it was nice to go to my local pub tonight, talk rubbish, play darts and unwind. There is a group of guys who normally turn up on a Friday night for some man therapy and escapism. As it was Children in Need night tonight we were playing darts for money and all the winnings were going to Children in Need. It came to the end of the night and the landlord asked if we were having another game. The next thing that happened took me completely by surprise and spoilt the whole evening. There was a guy who is not normally part of the Friday night group and he said when asked to put his money into the pot for the next game, “Why not, its for the spackers anyway”. I am afraid I could not hold my tongue and told him how offensive that sounded and that actually my daughter is “one of them”. Rather than back down and apologise he brushed it off saying it was just a generalisation. I had to tell him that it was a very offensive generalisation but realised that there was no point taking it any further because idiots like that have their own opinions and there is no point trying to change them. By this time the atmosphere had completely changed and I just felt uncomfortable and isolated. It saddens me to know that there are people out there that feel comfortable using language like this in the company of others. Maybe they think it is “big” or that they will get a laugh by saying it, but it took all my energy not to punch him in the mouth. Knowing what kind of person xxxx xxxxxxx is, it would have made no difference at all to his point of view, but maybe I should have done it anyway because it would have made me feel a whole lot better. I could hear Dawn saying to me, “Don’t try to change the world one person at a time”, and she is right. People like this will always be part of our lives and we just have to rise above it in the knowledge that they are missing out on the amazing experiences that are now part of our every day life. They will never know the joy of having somebody like Lucy in their lives and in a way I pity their narrow minded, self centred view on life.

07Nov07 - Adaption

Adapting your home is the last thing you think about when you find out your baby is going to have disabilities and when the time comes round it is difficult to accept. In a way we are fortunate that Lucy's therapists were very switched on to her future needs and how the adaption grant system works because although it is a lengthy process, it is happening a lot sooner than perhaps it otherwise would without their help. The whole process has been very efficient and almost clinical. Although it is all for Lucy's benefit and we will not have to contribute towards the cost, I have always felt very negative about it. It is horrible walking around your home with strangers, being told how it will have to change and all the equipment that will have to be installed. The adaption process reinforces and highlights how different your life is going to be and how your choices are gradually taken away. You have to listen to comments like "when Lucy is older she will need this", "when she is bigger she will need that", "it is going to get more difficult to change her so you need this". I guess comments like this are realistic and need to be said but I can only liken it to a mechanic sucking wind and telling you what a difficult job your car is going to be. The whole focus is purely on the disabled family member forgetting that the rest of the family will all be affected. It is not the inconvenience or the damage to your home that hurts, it is the impending life change that you are forced to confront, the same life change that you have being trying to deny for as long as possible. I have found each visit and meeting an emotional tormoil even when I was not there and feel angry and bitter that we have to do this at all. I know in the future we will probably be glad of the adaption but I never expected it to happen so soon. To me Lucy is still a baby and I want that feeling to last as long as possible because in the back of my mind I know that as she gets older and bigger everything we do with her will be that much more difficult. Adaption suddenly fast fowards your thinking and makes you look into the future. Conversations about future needs and problems are conducted in a matter of fact way and you join in not realising until later how sad it makes you feel. I certainly wasn't prepared for all of this and the feelings that it brought. Getting the go ahead and the grant approval was the least of my concerns.

We had someone at the house today taking measurements and deciding where and how to position all the equipment. It is very different from redecorating or rearranging your lounge furniture. We are turning Joshua's sanctuary, a perfectly good playroom full of toys and computer games into the "Lucy Ward".She will have a wet area with shower table and basin, hoist with tracking on the ceiling and a special bed. We will have to find lots of pink fuzzy stuff to make it feel more like a bedroom and convince Joshua to part with half of his old toys. Everything is approved now and it is just a matter of time before they start work whether we like it or not. I know that it has to happen no matter where we live but I can't imagine how difficult it will be now if we ever want to move house!

20Oct07 - Tropical World

Dawn was feeling better so we made the effort to get out the house in the afternoon. Joshua chose to go to Tropical World, Leeds. Its a place we used to go to a lot when Joshua was small and he obviously still likes going. It is a little more difficult with Lucy as the base of her chair is quite wide and the paths in the tropical house are quite narrow but you can access everything. It is very hot and humid inside so we all had to strip down to our t-shirts. There were plenty sounds, smells and light changes to keep Lucy interested although it is difficult for her just sitting in her chair because a lot of whats around her is outside her line of vision.
Lucy was a bit of a jack-in-a-box wanting to be in and out of her chair all the time. It was nice to get her out so that she could see more. She especially liked the fish tanks and the bats.
Lucy needed a nappy change before we left so Dawn got the job of taking her into the ladies where there was just a fold down shelf in full view of everyone coming in and out of the toilets. It is extremely rare for there to be any baby change facilities for fathers which I think is unfair and does not say much for sexual equality in this country. The message it sends out is that changing nappies is mothers work!! Lucy is already getting quite big and heavy and before much longer Dawn is going to start finding it difficult to manage changes on her own especially when she is not in a familiar place. I wonder what is it going to be like when Lucy is 10, 20, 30...........? How will we manage to change her? Where will we take her to change her when we are out and about? One things for sure, we will be able to answer those questions soon enough.