31Oct07 - The Special Mother

Lots of people say that you are chosen to be given a child with special needs and it has always made me cringe because why choose us. If you are chosen then what cruel lottery spat out our numbers and why. I have talked about it a lot in previous blogs so I won't labour the point. However, yesterday I read something on the "SCOPE (www.scope.org.uk)" forum which made me think differently. It opened my eyes a bit, offering a different perspective that I had not considered before. It is not necessarily about being chosen, more the qualities you need as a parent and particularly a mother. I will let you read it for yourself:

The Special Mother

Did you ever wonder how mothers of special babies were chosen?

Some how I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As he observes, he instructs his angels to make such notes in a giant ledger.

"This one gets a Daughter. The Patron Saint will be Cecelia"
"This one gets Twins. The Patron Saint will be Matthew"
"This one gets a Son. The Patron Saint... Give her Gerard. He is used to profanity"

Finally he passes a name to an angel and smiles. "Give her a special child"
The Angel is curious.. "Why this one god? She’s so happy"

"Exactly," smiles god. "Could I give a special child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" Asks the Angel

"I don’t want her to have too much patience or she will drown in a sea of self sorrow and despair. Once the shock and resentment wears off, she will handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see the child I’m going to give her has her own world. She has to make the child live in her world and that’s not going to be easy".

"But Lord, I don’t think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - She has just enough selfishness"

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child
occasionally she wont survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realise it yet, but she is to be envied. She will never take for granted a 'spoken' word. She will never consider any 'step' ordinary'. When her child does the smallest thing for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see... Ignorance, cruelty and prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her Patron Saint?" asks the angel. His pen poised in mid air, God smiles "A mirror will suffice".

28Oct07 - The First Weeks Again

The video I made (Lucy May - The First Weeks) has stirred up a lot of emotion for us and also for our close friends and family for whom the memory of Lucy's introduction to the world is still painful.
It was not really my intention to do this but I did want to record those weeks for other people to see that despite the horrrendous reality of being in that situation, life does go on. We are three years on now and a lot has changed, Lucy has many challenges but she is healthy and it is easy to forget that we experienced some small miracles during that time.

I remember when Lucy was struggling but stable in the neonatal unit at Dewsbury Hospital. I arrived one morning, the day of Joshua's sixth birthday party and when I saw Dawn I realised immediately that something was wrong. Paramedics from Leeds General Infirmary were there to transfer another baby to their specialist intensive care unit but instead they were going to take Lucy. Lucy's abdomen had become very red and swollen and one of the senior nurses had suspected that it may be Necorotising Enterocolitis (NEC). NEC is a gastrointestinal disease that mostly affects premature babies and involves infection and inflammation that causes destruction of the bowel. It is quite rare affecting only about 1% to 5% of neonatal admissions. Lucy was only a couple of weeks early and what caused it is uncertain but most likely it was damage to Lucy's bowel caused by oxygen starvation at birth. I will be forever grateful to Gill the nurse that had the conviction to insist that Lucy's case was serious enough to warrant immediate transfer to Leeds. The miracle was not only the timing of the paramedics being there just at the right time but the fact that had Lucy not got the bed at Leeds General Infirmary that day then she would not have got one at all. It was not the only time but her life was saved that day. It was the start of a very worrying time as NEC is an extremely serious disease and posed a very real threat to Lucy's life for some time after. Thanks to Leeds General Infirmary and the amazing people on the neonatal intensive care unit, Lucy survived and has no lasting bowel problems. If you watch the video again you will see the pictures of Lucy on a ventilator with her stomach red and swollen.

So although the video is sad and it is so unfair that it happened to my little girl, it reminds me that it is not just me and my little girl. This is happening every day, 24 hours a day, 365 days a year. Before I experienced it I had never spent a single second thinking about all the parents and relatives sitting in ICU units, all around the world, their own worlds being turned upside down. Now I think about it a lot and when I do it takes me right back to those first weeks and I feel for all those innocent people thrown into this awful situation just at the moment that should be the happiest of their lives. People say that you are chosen or that you are special. We are not special because we have Lucy and we were not chosen to be her parents but we are special because we coped and we continue to cope. The mother in the "Away with the fairies" from www.cafamily.org.uk video put it very well when she said "I don't want to be special, I just want to be ordinary".

26Oct07 - Now and Then

I have recently been copying and updating photos onto our new computer and in the process have had to re-look at the photos we took from May to August 2004 of Lucy's first weeks. It surprised me how much they still affect us both. I had deliberately not looked at them for at least 2 years and seeing them again just brought it all back. All the false hope, anguish, worry, fear and despair. All the machines, nurses, doctors, consultants and alien medical language that we learnt to understand. The hassle of constantly travelling from home to the hospital, never having time to eat or talk. The feeling of helplessness, knowing that whatever was going to happen was completely out of our control. Shocked faces of visitors and the sounds of other parents weeping and sometimes nurses crying when a child in their care had died. The noise of your own footsteps on the long walk to the intensive care ward and wondering what you will find when you get there. Wires, tubes, syringes, beeping machines 24 hours a day and blood stains on the tiny cot sheets. Lucy's feet like tiny pin cushions from the daily blood tests and her cries of pain when we helped to hold her while they did it. All of these memories are still as fresh as if it was yesterday. It is easy to forget or overlook the significance of the start of Lucy's life and the profound impact it had on our lives and those of our close family. It was an awful period in our lives which will be with us forever. Some of the feelings, the fears and worries, for Lucy and for ourselves have not changed since then. As soon as we were out of hospital, suddenly everything was considered to be back to normal. Baby back home, life back to normal, phew that was a close one! Nothing normal has happened since and I can't see that normal is a word that can ever be used to describe the life we have now. I can't help resenting or feeling jealous of people who have normal children, in and out of hospital in a few days. They still complain of the hardship and the life changes just like we did when we had Joshua but my sympathy has gone and I just want to shout at them and tell them that they don't know how lucky they are. I know this is wrong and unfair, it is just how I feel. I made a short video which helps me to remember how close we came to losing Lucy, what we all went through and how lucky we should feel that she is with us at all. You can watch the video by following the link on the right in the sidebar or click here Lucy May - The First Weeks.

"Lucky Lucy" was great today, in a really good mood and happy. We all went out for a pub meal and I fed Lucy while we were there. She was so exhuasted that she fell asleep on my knee and stayed that way.

She has come such a long way from her unfortunate start in life. I sometimes wonder if we have moved on as far as she has.

24Oct07 - First School Trip

We dropped Lucy off this morning to go on her very first school trip to Harewood House near Leeds. There were about nine children who were accompanied by numerous support staff and teachers. Josh was playing big brother this morning but really was just eager to get on with his day which involved breakfast at MacDonalds, ten-pin bowling and going to the cinema. We are hoping to be sent some pictures of the school trip by the school and so hopefully I can post them in retrospect. From what we were told Lucy had a very good time, especially in the planeterium where they said she was really looking around and taking it all in. After our full day with Joshua we picked Lucy up about 3 p:m and found her in the sensory room at the school surrounded by helpers. She was worn out and had a good sleep when she got home. Today was the end of my short break from work so the daily grind starts again tomorrow. It has been good to have 3 days alone with Joshua and I am glad we have made the most of the time. I know that Joshua has been glad of the break and hopefully it has reminded him that he is special too.

22Oct07 - Forbidden Corner

Today is about Joshua time. Joshua is on holiday this week for half term and I have taken a few days holiday to spend at home. Lucy was at nursery all day so it was just the three of us. We went to "The Forbidden Corner" which is near Middleham in North Yorkshire. It is a kind of mystery garden and you have to find all sorts of different clues by finding you way through mazes, secret paths and underground passages. We have all been before and all love it. I asked Josh to write about what he liked about today and this is what he wrote,

"The best thing about today was spending time with my Mum and Dad, and when I was scared in the underground bit my Mum and Dad gave me a big cuddle. On the wet parts where you can get squirted with water from different objects, I always made them go first so that I never got wet.
Even though I like Lucy being around I really like it when its just my Mum and Dad because we can do what ever we want like go down steps and stuff and don't have to worry about feeding her"

Joshua has always been the most caring brother Lucy could wish for but I am glad that he is as honest as he is. It just shows that we must make more of an effort to make special time just for him. Walking around with Joshua today was like taking a step back in time. Everthing just seemed so easy and we were able to just relax and enjoy ourselves, with no prying eyes, inquisitive looks or strict timetables. It is sad that we have to feel this way but it is certainly one place that we will never be able to take Lucy because of the access difficulties. The cruel irony is that the steep winding steps, tunnels, stepping stones and narrow paths that children love about the place, are the very things that exclude children like Lucy.

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.

18Oct07 - Fairfield Fun

Yesterday Lucy started the day with blue sandy toes. She wasn't sure wether she liked it or not but had a go all the same.
I am glad we don't have a tray of blue sand at home. The mess the kids must make at school every day must be incredible. I really admire the staff at Fairfield School who always take it all in their stride. In fact they actively encourage the kids to get messy.
Today was Lucy's last day of this half term and the school arranged a party for the kids with biscuits to decorate, loud music and snacks. Lucy as you can see got her face painted and it was still there when I picked her up from nursery at 6:00pm.
Joshua and Lucy had a quick play before I threw them both into the bath. Only when I got Lucy in the bath did I realise that she had nail varnish on as well. She has really been spoiled at school today. I was as well because Lucy's Teacher was very polite about Lucy's hair which I had to do because Dawn was not well. I managed to make a ponytail....well some kind of tail and it stayed there too. It was still there when we got to school. I must admit it wasn't as bad as my previous attempts but would still not win any competitions.
You can't really see from these photos but the ponytail had dissappeared by the time she got home.
I would like to say a big thank you to Fairfield School (www.fairfieldschool.co.uk) for everything they have done in Lucy's first half term. It has been an inspiration to me seeing just how much fun Lucy and her new friends have been having and how everyday is filled with such interesting activities. It has taken such a burden off our shoulders knowing that Lucy gets so much stimulation every day. I know Lucy will miss school and will be looking forward to next half term.

16Oct07 - Away with the fairies

I tried to get some pictures at school today but Lucy was not in the mood when we dropped her off. She had cheered up by the time she got home and we had a quick play at dressing up. This could be a career option for Lucy!!
Later this afternoon Dawn took her to pick up Joshua from school and struck it lucky with the cuddles again while they waited for him to finish.
After work to day I was browsing the "Contact a Family" (www.cafamily.org.uk) website because they have a very good area specifically for Dads. I stumbled upon a video that had been made by a father about his family and their disabled daughter. The film is narrated by his wife and is excellently done. The thing that struck me most was that it could have been Dawn talking because the feelings and experiences they express are so similar to ours except their daughter was nine at the time the film was made. We are always trying to see into the future and find out what we can expect from life. We try to convince ourselves that it will become easier somehow but really deep down we know what the truth is likely to bring. Their daughter was nine, six years older than Lucy and they are still affected in the same way we are now. It was moving to hear this mother speaking the truth and telling it just the way it is. I didn't draw much comfort from the video except that I know that the way I feel is normal and I shouldn't expect it to be different. The same thoughts that the father had are constant for me. I am not embarrassed to admit that I was brought to tears watching and it will be the same if I watch it again. If you want an insight into what life is like for families like us, watch this video. Click here to watch "Away with the fairies" from www.cafamily.org.uk

15Oct07 - What others think

Today began well after a really good weekend. Yesterday we took Lucy to see her Granny and Grandad, my Aunty Mary and Cousin Rachel for Sunday lunch. As always we had a nice relaxing time and were fed very well. Lucy laid happily watching the MotoGP on TV while we had our lunch. Lucy always enjoys cuddles with Mary, Rachel and Emma (who couldn't be there).
It was interesting to hear them talk about the "Them & They" blog that I recently wrote. They were as offended as we were by the comments that have been made and it reinforced the thoughts I have that society, particularly the older generation, seem not to be educated to deal with disabled people. It is obvious to me that some people have no idea what to say or how the things they say actually sound. They don't see disabled people as equals and think it is good to be sympathetic and sometimes even apologetic. Don't they know that sympathy is the last thing we need? Disabled people are real live people with their own thoughts, emotions, characters and skills but unfortunately because they are different they are categorised and stereotyped before they have the chance to express themselves. Lucy is just a little girl and she only knows the life she has been given. She won't go through life feeling sorry for herself. Yes she may want to change things about herself just like anybody does. I know for a time in my teens I didn't like my first name, I wished I could make my ears smaller and occasionally wanted to be have been born into the royal family. I don't know what Lucy may not like about herself but whatever it is it will be normal for her as she grows up. The number of times we have heard the comments, "Oh you do keep her nice" or "She is always so well dressed" as if this is the only thing they can find to say about her. It comes accross as if they think it is unusual for a child like Lucy to be cared for like that, as if it would be ok if we dressed her in rags because she is one of them. I don't mean to offend anyone who has said that and meant it in the right way, it is obvious when it is said out of context.

I was talking to one of our friends today who was still angry after reading the comments made to Dawn three days ago. She could write a book about all the times it has happened to her. We all deal with it in different ways. Dawn is able to rise above it but our friend is just like me and it really gets to her. I know she reacts to it more than I do and it was really funny for me listening to the stories of the times she has confronted people. It made me feel like I am not being rude or obnoxious by wanting to protect Lucy from the ignorance that surrounds her. It is not her fault she has cerebral palsy and it is not her fault that people can't see past her disabilities. If she is not able to stick up for herself then I don't see anything wrong doing it for her. One thing Lucy has given us is lots of laughs when we get together with our friends in the club and share our stories, it is hysterical although I guess to anybody on the outside it would sound pretty offensive. It is better to laugh about it, confront it and do what we feel is right because the alternative is to avoid public places and stay at home.

13Oct07 - Just Lucy

Today was Lucy's day to have Dawn and I to herself. We all got up late and I played with Lucy while Dawn did jobs. Lucy has been a little off colour and felt quite warm this morning so I wasn't surprised when she fell asleep while I read to her.Lucy then slept on my knee for about an hour while I watched some boy TV for a change. It has been a damp, grey, dismal day but we still decided to make the most of our afternoon and take Lucy for a long walk. We walked further than intended and found a new bridleway to walk along.The going was good for the first couple of hundred metres but after that, the Ottobock Kimba Frame which Lucy's Leckey Squiggle chair sits on began to struggle. The front wheels don't lock so it becomes extremely difficult to push on rocky or uneven ground. It is also very rigid and Lucy was thrown about all over the place although I do think she enjoyed the "offroad" experience.
It was a relief to finally find the road again. We still had a fairly long walk back home and decided to stop at our local pub for a quick drink before getting back to feed Lucy. I certainly felt like I had earned a beer or maybe I am just unfit. It was a lovely way to spend a Saturday afternoon and now both Dawn and Lucy have flaked out and are having a late afternoon nap. Dawn and I are going to a charity night tonight arranged by some local guys to raise money for the Make a Wish Foundation which should be a really good night.

12Oct07 - Them & They

Dawn dropped Joshua off this morning at school for his first ever school trip to Cumbria where he will be caving, canoeing, abseiling and other exciting activities. He will be away all weekend and it will be strange not having him around but I am sure he will enjoy every minute. Dawn had most of the day on her own with Lucy and took her into town this afternoon for a spot of shopping. After wandering around town Dawn decided to feed Lucy in the Asda cafe. She was unfortunate to experience a couple of uncomfortable mainstream moments. It is a given now that whenever you feed Lucy in public that you become a side show attraction but every so often the spectators just can't help themselves. Dawn picked up on an elderly couple who could not keep their eyes off Lucy but she ignored it because it happens all the time. Dawn copes with this much better than I do. However without any warning the couple appeared at the side of her with sympathetic looks on their faces. You could not have made up what they said. With smiles on their faces they said looking at Lucy, "Oooh they are lovely, we do like them". What a classic!! I had to laugh because it could be a line from any alternative comedy sketch and I am pretty sure the couple had no idea how offensive "they" were being. They probably thought they were being nice. Its funny that we were only talking about people using the words "them" and "they" last week with one of Dawn's friends. She recently had a similar situation while out and about with someone who mentioned that "You see more of "them" about these days don't you?". Another classic line straight out of the comedy writers script book. It is actually quite funny when you think what people say without thinking about what they are saying. It is hilarious swapping stories like this between ourselves but never so funny hearing it first hand. I wish I had made a note of all the quotes because they would make a funny blog. Any way the next thing that happened was a young mother with an 8 week old baby walked into the cafe and chose to sit opposite Dawn on the same table even though there was plenty of room elsewhere. She proceeded to feed the baby who took his bottle easily with minimum effort. Dawn on the other hand was doing battle with Lucy, getting covered in second hand food particles and struggling to hold on to Lucy because she was pushing back and arching. It is times like these that the reality of the situation smacks you in the face. The next thing the mother is on the phone but suddenly breaks off the conversation saying that the baby has been sick everywhere. Of course Dawn had a quick look only to see the mother wiping around the babies mouth and the only sick to be seen is a tiny patch on the mother's shirt about the size of a 50p coin. What a tradgedy!! I know that Lucy never had the monopoly on vomitting but not very long ago I can remember sitting in a crowd of people watching a show at Legoland with sick running down my shirt, inside my shorts, pools of sick in the creases of my clothes and Joshua handing me wet wipes to scoop it up. Sitting in the Asda cafe forced to share feeding where such a big drama to a normal mother highlights how drastically different life actually is.

On the way home Dawn and Lucy called at her friend Sam's house to drop something off and ended up staying for chat. Lucy played with Bethany and Eloise but soon got tired and fell asleep where she sat.
We all arrived home about the same time. Dawn had bought everything to make a roast lamb dinner. It is rare that Dawn cooks but when she does she does it in style.

10Oct07 - Play Day

Lucy started the day at school with messy art. I just love it when she comes home with paint on her hands. Its just one of those things that you don't do at home because it is such a hassle getting all the stuff out and then cleaning up afterwards. At least now we don't have to feel guilty about that because we know she is getting to do it at school. Thanks again to Fairfield School (www.fairfieldschool.co.uk).
Dawn had a get together with her friends Hayley and Pauline who she met through the Child Development Centre, so Lucy and Laila were dropped off together at Hayley's house by the school bus.
Two big girls in their matching buggies. We had a bit of progress with the Leckey Squiggle (www.leckey.com) chair today. We only have one set of covers for the chair and since Lucy has started at school it is getting more use than before for messy activities which is really good. The nursery have also been keeping her in it after she has been dropped off for the two afternoons a week for their activities. The fact that it is getting dirty means that Lucy is obviously having a lot more fun which is brilliant. The downside is that the nice pink covers are getting covered in all sorts of paint, messy stuff and food and it is quite a mission to get them washed before Lucy needs to use it again. Today we heard that we are going to get another spare set of covers which will mean that we should be able to keep it looking respectable. At the moment our choice is pink, orange, blue or green and we have to make up our mind tomorrow. Laila is getting blue and we may go for green.
Judging from the photos it looks like the kids had a great time. I spoke to Dawn on the phone while she was there and could hear the mayhem in the background.
I think Laila might be getting a crush on somebody!!!!!!! Lucy is just playing aloof.
Lucy was exhausted by bedtime tonight after all that excitement and it did not take her long before she fell asleep. Now its golden time until the chaos resumes tomorrow.

07Oct07 - Beningbrough Hall

Dawn needed a lie in this morning so I got up with the kids and did the breakfast routine. It was still late when I finally got finished. I did the dreaded hair brushing with the usual results. Dawn always has a go at me for not being able to do anything with Lucy's hair apart from brush it so I thought I would have a go today.Well judge for yourself, I think it is a look that could catch on. Dawn on the other hand ripped it out and did it again. I did apologise to Lucy, I just hope she is not emotionally scarred. We managed to make a picnic and set off for Beningbrough Hall near York. Since joining the National Trust earlier this year we are working our way around their properties. It has been a good way of getting us out and about and I would recommend it to anybody. The annual membership fee has paid for itself already. When we arrived there a group of Morris Dancers were in full flow. Lucy quite liked the sound of the bells on their feet.There is a nice restaurant with tables outside so we bought coffees and sat outside and had our picnic while we gave Lucy her lunch. Lucy did her favourite party trick, spitting most of her lunch on Dawn. Dawn took it well for a while but when she was struggling to see through the second hand baby food I took over and took a splattering from Lucy's pudding. We were told when we arrived where the special lift was because the attendant realised that we would need it. A lot of National Trust places don't allow pushchairs and it made a change for somebody to realise without being told that Lucys buggy is a wheelchair not a push chair. You don't have to be a genius to work it out you only have to look at Lucy and all the straps. Unfortunately when we got into the house the first attendant we saw made a big point of checking if it was OK for us to take Lucy's chair around the house. We even had to wait for a man to come and tell us. It immediately makes you feel different and singles you out for special attention. Everbody looks round to see the "special family". These people should know better. I won't dwell on it because we are used to it and have come to half expect it, it is just sad when it happens. The house itself was actually really good. Normally these big old stately homes are a bit serious and dull but Beningbrough has made a special effort to include areas for children. We also could get to all 3 floors using a special lift which we never expected so I would definitely recommend this house as a good wheelchair friendly place to visit.

Lucy and Josh trying on masks, very attractive!!They both had a go at dressing up in old clothes
Josh had a go at modelling a nose
Lucy loved the soft play room and especially this big orange air cushion. She couldn't stop smiling.
After we had finished in the house which is very good for adults as well by the way if you like that sort of thing, we made our way to the adventure playground so that Lucy and Joshua could have a go on the slides. Of course I had to take Lucy down the slides and she enjoyed it so much she smiled all the way down the first slide.We had really happy relaxed day. Lucy has been a little angel all day and I can't remember her smiling so much in one day. It makes such a difference to all of us when Lucy is happy, her smile is infectious. All those difficult thoughts and feelings are forgotten and we all just relax and have fun. This has been a brilliant way to end/start the week.

06Oct07 - Switches

We have been talking recently about the early events in Lucy's life and the automatic coping mechanisms that protect you and help you to comprehend all the information that is thrown at you. It is like there is a circuit board in your brain with switches to control the flow of emotions. When emotions are affected so deeply by all the worry, fear, anger, sadness and despair, something in the brain starts to turn those switches off. If this didn't happen the circuits would overload and the reality of the situation would be too much too handle. That is why in a previous blog I likened receiving devastating news in the ICU department about Lucy's future outlook to finding out that your plane is delayed by half an hour. Your senses are numbed to the point that you are able to accept information that in any other situation would cause you to break down. So we can be matter of fact about just about anything. In fact the last time Dawn was in an ambulance on her way to A&E, blue lights flashing, siren blaring, Lucy in the middle of a major fit, the paramedic commented on how calm Dawn was. So what, big deal, its just an ambulance, Lucy probably won't die, been there done it, what a hassle to have to go to hospital again!! Those are the thoughts that go through your head. The switches are off and the normal emotions are not getting through. This is all great and allows you to cope with just about anything but there are definitely side affects. Those emotions have nowhere to go so they just sit there slowly building up. Sometimes they slowly feed through and other times the switch goes on and they pour through. It is a constant cyclical process of build up and release although over time the same emotions and thoughts get gradually weaker as we learn to deal with them in different ways. The worst side affect is that through this process you are changed. Your feelings are weakened and you don't give the same thought to your own personal realtionships. You start to look inwardly because you have to protect yourself from anything that might add to your burden. It is over three years since our switches started getting turned off and we are only just realising that it happened at all. The difficulty is trying to find a way to turn them back on again. Maybe some of them will always remain switched off I don't know yet. I know there a things that I just don't care about anymore that once were important. There are situations which would have affected me that I simply avoid. The danger is that we become hollow and outwardly cold while inside the same turmoil just goes round and round waiting for the right connection. Before the switches can be left on for good, that turmoil has to be dealt with somehow and the only remedy I can see is time. Dawn and I are getting better at helping each other. In the beginning it was a disaster and we just ended up misunderstanding and upsetting each other. It has taken a while but we understand each other much better now and can start to move on. I like the idea of working to get those switches turned on again because it makes us think about the type of people we have become. It also gives us hope that as we gradually put our skeletons to bed we can work on those switches one at a time.

05Oct07 - Are we hypocrites?

I spend so much time thinking and talking about this different life, explaining how rewarding it is and chastising those normal people who stare because they don't understand or are simply curious. I feel different and I feel like at times that I am treated differently by the normal people because of my different circumstances. I feel more comfortable in the company of people that share similar lives to ours because it is like we are all part of some big gang. You get initiated by birth trauma, accidents, misadventure, operations going wrong, disease, genetics and rare conditions with names nobody can pronounce. By the time you have finished your initiation you have already adapted to your new life and accepted that the world you have just come from is not for you anymore. In some twisted way it sets you apart from the normal people because you have been given a job that few would accept voluntarily and it is a job for life with no option for early retirement. It is the hardest, most challenging thing that you could have been asked to do and you weren't given a choice. So because of the environment you find yourself in or by purposely distancing yourself from normal life, you change. You have to change to be able to cope. It is not just your way of life or your quality of life, it is the way you think, the way you feel, the way you see the world and the way you protect yourself by numbing your instincts and emotions. Every so often I get a glimpse of how I used to be. Sometimes what I see makes me envious because of the easy freedom and sometimes it makes me realise that I used to be just like all those insensitive normal people who never give two thoughts to the different lives of others. It is so easy for me to take the moral high ground now and I regularly do. I get so angry with people who really are just the same as I was. Soceity as a whole does not educate itself to cope with disability, abnormality or deformity. People laugh and scorn at the people who have had the worst hands dealt to them. We all know the words used to describe these people, spaz, joey, window licker, monger, mental are just a few and we all know those facial expressions that people make so often. Can anybody put there hand up and say that they have never said, thought or acted out any of these things? I know I can't, but whenever I hear and see these things now, I feel physically sick and you would be surprised how often it happens. It makes me so angry but I stop myself from reacting because I know that I used to be like that. I guess it is unfair and unreasonable to expect people outside our different gang to understand life from our point of view. Maybe recognising the hypocrisy in some of the things I do and think stops me becoming too bitter and making a fool of myself. I have learnt the hard way how hurtful words and actions can be. I wonder if I hurt or offended someone in the past with my actions and never realised it.

04Oct07 - Guilt

We recently looked at some old holiday photos from 2003 and it got me thinking. We had a week in the sun in a beautiful villa, just me, Dawn and Joshua. Joshua was 5/6 years old and we spent most of the holiday lounging around the pool or going to the beach. Joshua was happy running around jumping in and out of the pool or the sea. I can remember getting a little frustrated when Joshua kept nagging at me to go in the pool with him but I don’t think that is too abnormal. We had so much time for each other and ourselves not just on holiday but all the time. We used to say then how fortunate we were and how idyllic our life together was. Dawn and I often used to talk about it and I suppose gloat a bit because we just felt so lucky. We did sometimes talk about the bubble bursting one day but pushed that to the back of our minds and never really believed it could. We had so much time just to do our own thing and no timetable to control what we could do and when. Just occasionally and it is a hard thing to say and probably even harder to read but sometimes I yearn to have those times back. It makes me feel terrible when these thoughts creep into my head and the guilt is incredible. I know that it is not possible to return to that time and that part of our lives will always be a very special memory. I suppose I should feel fortunate that we had that time at all. What would I do if I had the opportunity to turn the clocks back? I am glad that I will never have to make that choice. There is just no comparison with the life we now have. Joshua has all but stopped trying to get me to do things with him, partly because of his age but mainly because most of the time I can’t or don’t have the energy. He just gets own with his own thing and I feel so guilty about the amount of time, especially in the evenings, that he has to spend on his own. One of the neonatal nurses Jill, said to us not long after Lucy was born that we should not make Lucy the focus of all our energy and attention. She told us a story of a boy in Joshua’s position who was asked if having a disabled sibling had changed his life in any way. He said that he still got some time with his parents but he never got time with both of them together. We do try to arrange to do things just with Josh and I know my mother is more than willing to help but if I am realistic I think that Joshua would probably give the same answer now. Time is so precious and so scarce. We even struggle to keep on top of all the normal daily chores. I have not done anything with the house for 18 months. Everything we do and everywhere we go has to be planned. We always have to make sure we carry everything with us. How many meal times will we be gone for? Do we need medicine? Have we got the midazolam in case Lucy has a fit? We can’t just decide to go somewhere, put our shoes on, get in the car and go, it just doesn’t work like that. I think I have said in previous blogs that arranging time for Dawn and myself is so difficult especially if we need overnight care for Lucy. There is really only one option for this and thats my parents.

It makes me sad to write all this down because I know how it sounds. It makes me sad to feel and think like this. What would Lucy think of me if she could read? It makes me sad because I know that it is not really the way I am. What I have now is very different from before but no less special. The experiences it brings are new but no less rewarding. We really wouldn't change it and I know I have said that before. Most of the time we can be very positive about things but we have also seen a lot of negatives and they are very good at hanging around. Yes we all have to work a bit harder and sometimes it all gets a bit much but we are happy and we are slowly adjusting to our new life. Lucy is truly a wonderful little girl and I know when I look in her eyes tomorrow morning, I will melt and everything will be ok.

02Oct07 - Another Good Day

I had a good day working from home. It doesn't happen too often but gives me a bit extra time to do family stuff like the school run, lunch with Dawn and watching sport after school. I took time out to watch Dawn's riding lesson and enjoyed being out and about. It is great that through everthing Dawn has managed to keep up with her riding. Up until recently it has been just about her only release. Now that Lucy is at school in the mornings she has much more spare time to ride. It always used to be a balancing act between getting baby sitters and trying to get home form work on time. After watching her it is clear that she has become quite an accomplished rider and it is no wonder that she is being asked by several people to ride their horses for them. Later Dawn went to meet another Dawn which has become a regular thing after the other Dawn approached Dawn (this is going to get complicated) in the supermarket to ask her about Lucy's Leckey Suiggle chair as her daughter was about to get one. It is amazing how friendships can start. They share their experiences and just chat about life in general. I guess it is nice just to talk to someone in a similar position to yourself.

Joshua was in a netball competition after school so we took Lucy to watch her big brother. I think she was impressed but soon got bored, cold and then need to be cuddled.

Joshua loves getting involved with anything he can and it is a shame that we have not managed work it out so that he can play regular sport outside school. Life at the moment seem just too complicated but even as I type it I know it sounds like an excuse.
It was hair wash day for Lucy again tonight and this time I managed to get some photos. She was a little diamond and never complained a bit. In fact she was smiling while I dried her hair. I can still feel a twinge in my shoulders but I suppose it is good excercise.

Are you going on holiday or just a night out?
Ooooh lovely your hair is gorgeous
All finished and ready for the catwalk

01Oct07 - Life's a Rollercoaster

I often compare our lives to riding a big dipper, but I think it is more like riding two or three rollercoasters at the same time. Lucy has always kept us on our toes because just when she is doing really well and we start to feel good about her progress she throws in another wild card and we hurtle down into her next dip. At the same time both Dawn and myself are on our own individual rollercoaster rides. We do a pretty good job of being positive, getting on with life and keeping our emotions in check. We manage and control this in different ways but on the whole we cope pretty well together. From time to time reality hits, something happens or maybe just some surpressed feeling surfaces and it sends us down into the next big dip with little warning. In the first months of Lucy's life this white knuckle ride was so violent that we didn't really have much time to think about it it but now we are getting used to the ride it is becoming easier to predict when the next dip is coming. However this doesn't make the ride any easier because each time you go down the same dip it is just like the first time all over again. Although we are on similar rides our highs and lows don't always coincide. It is only natural that we are affected in different ways and have developed different coping mechanisms. For this reason we can often misunderstand each other or fail to see each others dips and it is then that it becomes more difficult to offer each other support. We are getting better at riding each others rollercoasters and have learned that is ok that they are not the same. We have had to also learn to communicate again because communicating and listening while riding a rollercoaster is not easy especially when you are screaming your lungs out. There are no real ways to make the dips less steep or slow down the ride and we know that we can't change that. We also don't want to hear from each other how the other rollercoaster is faster, scarier or more extreme, we just want to talk about our own experience of the ride, unload and forget, until we have to ride it again. Next time we get to that part of the ride it might not seem so bad but if it does then we can talk about it again. Sometimes it is difficult not to draw comparisons between the rides but we are learning that this is less important than just talking about our own because that helps more.

We have both recognised that no matter how strong a relationship is, cast into a situation like ours, you could understand if the relationship broke down. We also know plenty of examples where this has happened. If I was to offer advice it would be: don't expect your partner to understand how you feel; don't expect your partner to cope in the same way; its ok to be different; don't feel bad if your partner can't talk to you it will happen when the time is right; be patient; if you feel like your partner is taking it out on you probably there is nobody else to take it out on or to talk to; listen more than you talk; when you do talk, let it all out it helps; yes it is not fair; care about yourself; its ok to be sad; its ok to be angry; its ok to cry; its ok to feel happy; don't try to fix it all the time; its not your fault; happiness is infectious try a smile; know that being together is the very best way to get through it; remember when you met and why you are together; this is a job for two not for one; your life together will be enriched by this and things will get better.