Tuesday, 18 March 2008

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"

1 comment:

fairenuff said...

It has taken me a while to find time to read this blog entry because it's so long but I am so glad I did. I have felt a lot of the same feelings and have surrounded myself with friends who understand what we are going through because it's just too wearing on my soul to have to keep explaining our situation. I get annoyed with extreme reactions, either way. If someone reacts like it's no big deal I get annoyed for Bethany and reply with something like, "It's a fatal disease, she has already suffered so much and worse is to come and she has a short life expectancy," but if someone says "How awful, how do you cope?" I feel like I have to stand up for Bethany and tell them how wonderful she is and how it's a joy to be her parent.

Thank you for sharing your replies, and Dawn's, I will be going out to pick up a copy of the magazine.

It was great to see you all today, even if you weren't feeling wonderful. It's been too long since we all got together, I hope it's not as long next time. Give Josh and Lucy a kiss from me.