Katherine Michelle Alcock – 800 Word Reflective Report

Lizzie, Tim and Elijah explores the day-to-day life of my sister, Lizzie, brother-in-law, Tim and nephew, Elijah. In 2013 Elijah was diagnosed with Quadriplegic Cerebral Palsy. The photographic project that has evolved aims to document Elijah’s story, in a way that sensitively avoids spectacle and promotes awareness and understanding. The piece of work exhibited consists of two videos, containing both stills and moving imagery, along with independent audio recordings. The two screens, shown side-by-side, will display a comparable view-point from both mother and father. Through aiming to create a visual response to the difficulties of Elijah’s condition, I have acknowledged the extent of human love and the compassion one can have for one’s child.

Being unsure of its final outcome I was fortunate enough to begin a new way of working within this project. Prior to this, my working methods were very organised, planning projects with an intended direction and outcome. With this project, I challenged myself to let it develop organically, through research and experimentation. I had not anticipated producing a video, or for the work to involve the father, Tim. I began with a collaborative group of parents and their disabled children, intending to produce work through therapeutic sessions. Despite my best intentions, it became clear after the first meeting that this was not going to be possible, as each parent had other necessary commitments for their children that had to take priority. After discussing this with my tutors, I decided to change the focus of the project to solely focus on Lizzie and Elijah, which later evolved further to include Tim. Narrowing my focus allowed me to produce an in-depth study rather than covering a wider subject area, in less detail.

I intended the project to highlight parents’ involvement in their children’s lives and how this involvement differs with parents of children with a disability. I had already established a certain base level of trust with Lizzie, as she is my sister, but I found that working with her over a long period of time enabled us to become even closer and allowed me to create more in-depth and truthful visual reflections. Having introduced Tim to the project later on in the module, and not having had the same relationship with him prior to the project, I imagined it would be much harder to create work that could connect with the viewer emotively. However, it was significantly easier than I had envisaged, as I used a large number of the same interviewing and questioning techniques that I had used with Lizzie. I felt more comfortable as an interviewer and videographer with Tim, having already worked with Lizzie, showing that confidence in myself has grown throughout.

I had a few technical issues along the way, one of which being that Lizzie’s interviews and parts of Tim’s interviews were overexposed. This was because I was using natural light with its frequent changes. I experimented with editing this footage using Lightroom, however I decided not to use it, as I still didn’t feel that it was up to a satisfactory standard. To solve the problem I used recorded visuals of Elijah, which were more visually engaging, to accompany the audio interviews. In the future I will be aware of this problem and potentially use a mixture of artificial and natural lighting of a way to gain more control.

I was conscious that out of the two main themes within this project, parenthood and disability, I did not belong to either group. Through research and consultations with tutors and the subjects, I have managed to create a piece of work that sensitively attends to the ethics of representation. When editing the footage, I received advice to ensure that the work respected these groups was free from my own assumptions. The editing process was by far the hardest part of this project. I had to overcome my personal connections to the work and make decisions that adhered to the project aims. My practice has developed from a traditional analogue format to include moving image and interviews, I am proud to have created high standard of work within a format I am not used to.

This work will not need to stop as a result of University coming to an end, as I have been creating work with him for two years and I plan to continue to create a visual response that documents his development and progress. I will always be considerate and conscious of the ethical implications of creating work with Elijah, Lizzie and Tim. I am very excited to be handing this work in and I am very proud that I have managed to create an informed piece of work that addresses the need for awareness. Andrew Solomon summed this up nicely in his book Far From the Tree by saying that “the shared experience of difference is what unites us”.

Lizzie and Tim’s Reviews on the project

After producing the final videos I asked Lizzie Tim to watch them and then give me some feedback on what they thought to the video and the project as a whole and how they felt about people viewing the work.

Tim’s comments;

Talking about Elijah and the complications the he has can be difficult. I’m not realty a fan of being filmed however Kat requested that my thoughts were shown as well as Lizzie’s to put across a real aspect of what life is like from my point of view. I ‘m really pleased with how the video has come out and Kat has done a super job at editing it. She seems to have picked out the important points; which is what I wanted.

I wouldn’t be against people watching the video (despite the hatred of seeing myself on video) but they need to realize that it’s not necessarily a ‘happy go lucky’ video and that this is real life.

Working with Kat has been great. She’s very patient, much more so than I am, and she clearly knows what she’s on about. Very professional -with all the right kit.

Lizzie’s comments;

Working with Kat has been great, as my sister she has an in depth knowledge of the project topic. She has been patient and sensitive with regards to approaching subjects that may have been emotional to discuss with anyone else.

I’m really pleased with the videos, I feel that they offer a real sense of reality and ‘tell the story’ truthfully. I think that the editing is fantastic and particularly like the video clips with the voice overs.

I am happy for people to watch the videos and hope that they realize that tramas really can happen to anyone. I love that they express that our family life is very difficult to cope with, both on a day-to-day and emotional basis. I especially like that it shows that we are not ‘amazing’ ‘strong’ or ‘coping really well’ as people often tell us or assume, but that we are normal people that just deal with and cope with life the best we can for our precious son.

It is really nice to hear positive feedback from Lizzie and Tim. I have been conscious all the way through the project that I didn’t want my own opinions and judgments to be put on the work, rather I wanted the subjects to direct, form and develop the project through their interviews. It is interesting that Lizzie doesn’t consider that this video really does show just how strong they are as individuals but also as a couple. Yes it shows a realistic and honest portrayal, which was intended and gives the sensation that they are “normal people” that “cope” well with a very difficult situation but I also feel that it shows to others just how strong they are. Being able to insert an NG tube into your son is amazing.

Tim seems to be less affected by the video and project process than Lizzie, this could be because I haven’t had the same time spent with Tim, or it could be that he finds it difficult to talk about, as said and therefore to hear yourself talk about it is also hard. Lizzie did have an emotional response to the videos, more so of Tim’s and she said

“That is the most beautiful and yet sad thing I have ever watched.”

This was really kind of her to say so and I feel very proud that she likes the videos so much. I am so proud of myself for creating this work and enabling Lizzie and Tim to share Elijah’s story. I have sensitively and respectfully produced a piece of work that my subjects are proud of. That is the best feeling ever!!

Final Tweaks and Videos

This is the final week before the hand-in and I hadn’t watched the footage for just under a week. This meant that I was again watching the footage with fresh eyes and I could select a few things that I wasn’t happy with.

The main thing that I have changed is some of the footage of Tim. The first section, where the footage was over-exposed. Originally I made some tweaks in Lightroom and thought that this would be ok to use but I feel that it lets the footage down. It is not of the same standard of the rest of the filming and as it is right at the beginning of the video, it seems to set a bad tone for the rest of the film. I have replaced this footage with some more footage I had of Elijah. I feel much better about showing this work and although the viewer now isn’t introduced to Tim visually until about half way through the footage, I think that this is now of a much higher standard and in keeping with the rest of the footage. The section of Lizzie Tim and ELijah playing at the end I thought was also too long so I have slotted in another piece of footage. I do then go back to this footage as I fell it ends the sequence well and it is ok to only play a shot clip of this footage at the end as we have already seen it and are familiar with it. There was a slight change that I made to lizzie’s footage at the end where I though that the footage of her washing Elijah in the bath was too long, so I have used some of the visuals from the interview to replace this.

Some sound level tweaks were made to make sure the level balance between the music and the audio recordings was correct.

Here are the final videos;

I have reflected upon this further in the 800 word reflective report but I just want to say that I am so pleased and proud of this work. I have worked so hard to make sure this footage is sensitive to the subject and address the condition of Cerebral Palsy free from judgement and spectacle but with compassion and understanding. Without blowing my own trumpet, I feel I have achieved this. I have allowed myself the complete free reign of deciding how to develop the project, through research and experimentation I have created a journey of work, not just a body of work, that has seen myself grown in understanding and awareness. Here I have produced my proudest piece of work to-date and I am so excited to share that with others at the two Exhibitions.

Proposal developments

Here I have included my updated versions of my project proposals below, from my first one to my latest version. These proposals really show my development through the project and I also feel that it shows how my work has matured throughout this module. I am now much more aware of my position within photography and how my work will not only impact the subjects but could have the ability to impact the viewers. I have considered ethical restrictions and good ethical practice whilst completing my work and I feel that it is something that I can now be very proud of. As I have already stated, this was the first project that I have ever completed where I really wasn’t aware of the outcome in advance of creating the work, which can be seen through the drastic developments in the proposals. This has enabled me to produce, what I consider to be my best work-to-date.

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Credits

When completing the final edits of the two films, I wanted a credits page, not only to officially end the film but also as a way of correctly crediting the music that I used.

One of the most traditional forms of creating film credits is using a black background with credits that scroll up. This style is used on entertainment films and programs. This is a way of crediting lots of people in a short amount of time and somehow seems very impersonal. There is also no one to credit as such apart from the family, myself and the music, so it would seem a little pointless to create rolling credits.

Briony Campbell didn’t use credits within her work, however she did include a link to her website at the end of the film. I did notice that the guardian’s logo introduces and closes the film so this could mean that they have bought the rights to it. The music she uses isn’t credited on the video. She obviously didn’t feel it was necessary.

Duckrabbit use a similar black background and then still credits on top of this. One thing that I did notice about the ones from Duckrabbit was that the credits weren’t up there for nearly enough time as I had barely enough time to read the first name, let alone the fourth or fifth. One thing that I did like about their credits was the personal note to the subject, thanking him for trusting them to produce the work. This is something that I would like to recreate within my credits, as a thank you to Lizzie and Tim for allowing me to create this film.

The C Word (unfortunately I can’t get screen shots of this as it was on the television) however this film ended with some images of Lisa (whose life it was based on) and a thanks came to the family alongside the images. I really liked this effect as it put a face to the name and it was more personal.

My project has been very personal all the way through, so it is not surprising that I imagined the credits alongside a personal image rather than a black background. On my original edit the Text was fairly large and a thanks to the family came up with the image of Tim and Elijah, similar to those on the BBC production the C word. A quote taken from the footage was also displayed on this image and then the music was credited on a blank screen after this more similar to the formal style of Duckrabbit and Briony Campbell.

After discussions with my tutors I made the text slightly smaller. I removed the quote as it was suggested that this could be viewed as a ‘worthy’ comment and I didn’t want it to appear this way at all, as the film has so well avoided that. It was suggested that I introduce the family’s surname, however I decided that this was not necessary and just giving personal information away. Finally it was suggested that the music credit was oddly placed after the image and this should also be included on the first section of credits and thank yous. I also changed the text from allowing me to create the film to thanking them for sharing Ellijah’s story. Lizzie’s credits are done in the same format, but hers are on a picture of herself and Elijah and it says with thanks to LIZZIE and Tim, rather than Tim first.

I am pleased with how the credits end the film, the text used sums up the project, in how this is a sharing of Elijah’s story in a documentary format, free from any artistic judgement or directing of the viewers opinions. I am getting more and more excited about exhibiting and sharing my work, the closer the deadline comes.

Awards Ceremony

Earlier in the Term I was nominated for an Equality and Diversity award for my work within the FMP. I achieved Highly Commended in the awards and was invited to a ceremony with my parents, to receive the award. The Vice Chancellor of the University presented the awards and I was able to speak to other nominees and tutors about my work.

A short piece was written about me and displayed on the wall, it stated;

It stated “Katherine is a third year BA (Hons) photography student whose practice focuses on a family with a child with cerebral palsy. Her work sensitively attends to the ethics of representation and celebrates the equality and diversity of her subjects in ways that avoid spectacle and promotes understanding. It is a highly sophisticated practice that deserves to be spotlighted as an example of excellent ethical practice.

I was so touched and honoured to have this piece written about my work, these are all factors that I have been aware of and striven to achieve since setting out on this project. I feel very proud of my work so far and it was lovely to be recognised for the hard work that I have put in over the last few months. The award has also driven me to push myself that little bit harder, to complete all the write up on the blog to compliment body of work. I was also featured on the Coventry media website, which was in turn shared on social media. This has been a great spotlight for my work and I am really excited to produce work ready for exhibition at the end of the module, so that people can come and see the work in full. http://www.coventry.media/photography/third-year-student-highly-commended-in-equality-and-diversity-awards/

Presentation Method Options

Open Gallery Presentation methods

When researching the Open Gallery I noticed that they use various forms of exhibition and installation to showcase their work. They say on their websites that they are experts in art installations. This is realised on a large scale and the huge walls become canvases for the video works. This suits the soft natural imagery and small timescale changes that make the video art of Open Gallery so beautiful. The large scale makes it even more difficult to see the subtle changes in visuals and it allows the viewer to either become completely consumed in it, through the sheer size or alternatively treat it like a window and not take much notice of it. There is no sound on these videos, so that isn’t a consideration that they had to deal with. This style simply wouldn’t work for my project. The scale is far too big. I want this project to be more intimate and a personal viewing experience. I also think that when the production involves people it is slightly odd to have the human form blown up so big.

Bjork Exhibition in New York City

Whilst in New York City I was able to visit the Bjork exhibition at MoMa. Here we were all given individual headsets and media players and were able to walk through the exhibition listening to the recording. This was a fantastic viewing experience and it was very well thought out. Each room contained several visual stimulants, from still imagery to moving image and costumes displayed on models. The viewing experience was intimate and unique yet at the same time shares with others, this was strange but quite fun at the same time. I haven’t experienced anything like this before and it was great to shut yourself off from the rest of NYC and the rest of the hustle and bustle of the busy gallery and be engrossed in the art work. I am definitely going to use headphones for my project as it makes the viewing experience so much more personal, you feel as though the audio is directed at you as you are listening so intimately to it and I think this will connect viewers closer to the footage. The use of headphones also closes you off from the rest of the gallery, it becomes more of an intense viewing experience rather than a passive one, which is what I want. I want people to feel connected to the family and leave feeling as though they have learnt something about the family and the daily routine of having a child with cerebral palsy. The large scale is not something that I feel is appropriate, as described above, however I do think that it would be a possibility in the future, not necessarily with this specific project but I would enjoy creating a full gallery piece which is more interactive for the viewer, where you are expected to walk through it as part of the experience of the art work.

Leiden Translations

Leiden Translations is a film created by Adam Hodgkins.

Discovered in Thebes in 1829 the 3rd century Leiden papyrus consists of 111 recipes describing processes to improve nature. These were encoded as alchemical sigils for those adept in ‘lab-alchemy’. I first encoded the English translation of the Leiden Papyrus using Ancient Greek alchemical notation. These formulae were further translated to create minute-long pieces for improvising contrabass. The video presents two video screens of films containing three different categories of translation:
written alchemical notation, British Sign Language, and contrabass improvisation. Each coupling allows a comparison of ‘languages’ to represent a marriage of opposites or the “above and below”.

This describes the process and meaning behind the project. I thought that it was interesting that he used the two screens to allow a comparison to be made between the different footages. I intend the films to be played side-by-side in a way that is very similar to this style. I think that comparisons, both similarities and differences will be made between the footages and I like the idea, as said before of being able to flick you eyes over to the other footage whilst listening to the audio of one. A viewer from further back, not listening to the audio will also be able to watch the films in conjunction and make comparisons.

Mother. I Am Going

MOTHER. I AM GOING is a new three-screen film installation by British/Canadian artist-filmmakers Caitlin and Andrew Webb-Ellis. Filmed in an abandoned village in southern Bulgaria, and on the North East coast of England, the film weaves together documentary, performance and archive footage to explore memory’s relationship to the cinematic image, and the discontinuity of history. Memories return in the form of images. ‘Moments of history are plucked out of the flow of history, then returned to it – no longer quite alive but not yet entirely dead.’ Lucidity appears only in brief moments and no final truth is ever revealed.

This is a style of presentation that I would have considered if I had continued to create the two footages (both from Lizzie and from Tim) into a single viewing format. Again this is something that I could consider in the future, showing different visuals on each screen with perhaps a single audio. This is something that I could look into further in the future, when creating solo exhibitions.

When it comes to the presentation of work it can be as important a decision as the content of the work itself. I was originally considering creating some photographic prints from my negatives, to go alongside the video productions at exhibition. When discussing this further with tutors I was challenged as to why I wanted to show the prints as well and I couldn’t really come up with a good enough answer. I was slightly concerned that the work was taking shape all in moving image rather than traditional photographic forms. However I have been reassured since my tutorials, that my work doesn’t need the addition of still imagery. It can stand well on it’s own and it is a great production that does’t need anything else to accompany it. I am really pleased with the final edits of the work, I guess I am just slightly nervous about stepping out as a film maker. The film does include many of my still imagery as well and if I were to exhibit this as a larger production I would consider creating something similar to the Bjork exhibition that I saw in New York, where there are lots of different filming techniques and installations throughout as you walk through the journey.

I am going to keep my presentation simple and beautiful, which hopefully echoes that of the filming technique. I have asked to borrow two monitors from the university for the exhibition, one for each film. The screens I can borrow are flat screen TV’s that will have a media player plugged into the back to play the footage. I have also decided that I want the viewing experience to be through headphones, this is a much more intimate way of watching something and this echoes the sensation that the viewer is looking in on a family situation, having a private insight. Having the headphones will also take away the issue of audio mixing from both screens, each film will be able to be played either side to one another. This in itself gives an interesting element, in that you can be listening to Tim and your eyes flick over to see lizzie’s video which intrigues the viewer to watch that one also. The viewer is also much less likely to stop watching the film part way through, as they might do if just walking around the gallery, having picked the headphones up the viewer is more committed to the footage.

I have decided not to create a booth of any sort for the video to be displayed in, partly because I think that this closes the footage off from the gallery, and could bring with it connotations of hiding something away and feeling much more private, which is not something that I am trying to do by highlighting the condition and also from past experience of Degree shows, the work seems to get forgotten and walked past.

I have decided to let the film roll on over and over again, rather than the viewer having to play it, as again I think that some viewers will be put off by having to start the footage themselves, it adds an unnecessary mouse or other device that needs to be operated and it also means that viewers at the gallery may be drawn to pick up the headphones and listen to the footage if they see the visuals rolling. Particularly if it involves the ‘Punctum’ which will drawn people over to the footage.

Here I used two mac screens to help me visualise what it would look like in the exhibition side-by-side to make sure that I have made the right presentation choices and I am really happy with the results. I think that they look brilliant next to each other and appear very strong on their own, any more images etc to accompany would have distracted from the video footage-which is the main event. I am more than happy with the work, I am now excited that it is all coming together and I can start to prepare myself for exhibition and the excitement of progressing further from University.

Introduction of Music

After watching the Duckrabbit films I realised that music played quite an important role in their productions. I then looked back at some of the other videos I have research such as the Campbell one and realised that they too have music.

I was very nervous about experimenting with music as this is not my area of expertise and I didn’t want a bad choice of music distract from the strong audio and visuals. I searched the internet and found a man on soundcloud who was used by Duckrabbit in some of their films. He provides soft background music to accompany videos or for just general relaxing, calming music. He allows certain tracks to be downloaded for free and others you have to pay for. I began by downloading a few of the free ones and playing around with the sound levels and different clips over the audio already produced.

I went through some of the videos that I have already looked into through my research, which helped me understand using music with video and the effects it can have on the viewer. Using a piece of music in a Major Key tone is usually upbeat and positive, this could be used to encourage the feeling of a happy ending for example. Minor Keys are used to build more tension. With a little knowledge of music I just tried some experiments of putting the music to the video. Some I realised didn’t work straight away, some were great and others I couldn’t decide but it was good to see hear what the different options sounded like and the effect they had on the viewer.

After this I had a play around and put together an edit I booked an appointment with Emma Lambert and Caroline to gain their opinions on the music and if it was appropriate.

Emma’s opinions were that it was subtle enough to be OK, it heightened the emotion at the beginning but there were some parts that were a bit cheesy.

Caroline’s opinions were similar in that she thought it was good at the begininng and the end but there were some parts where it was too loud and it becomes directive to the viewer, pushing a response on them that they may not have.

This was all really good advice and after more referring back to the research and taking closer inspection I decided to lower the volume down some of the music audios and deleted some all together. I really want this work to be beautiful and touching but I don’t want to force any of those feelings onto the viewer by adding the music audio. I have since run it past Caroline and some other members of my university group, who think that I have now got the balance right. One said that the music wasn’t loud enough but I feel that it is appropriate for what I want it for. It manages to fill in some of the silent spaces, so that the viewer isn’t tempted to leave the viewing and it is also used as an introduction and ending tool.

Footage of Lizzie and Tim together

After filming with Tim and Lizzie separately, I thought it would be good to get some footage of the three of them together, Lizzie and Tim answering questions together and seeing how this changed the tone of the project.

The Videos produced can be viewed here above using the password provided in the book at the University. Alternatively you can contact me for the password.

Here I have written a brief outline of the interview;

• Hardest thing to deal with as a couple – Tim: Each other! (lots of laughter) Lizzie: Not having the time, energy or patience for each other.
• What are the seizures like? – Quite scary. The first time we had no idea what was going on. It’s a different cry to normal. The sad thing is, you get used to it. Like when he holds his breath until passing out, it was scary the first time but as time goes on it becomes normal. Until seeing other children, like feeding a friend’s child – “where’s the tube?!”.
• Is there a comedy side? – There is the one we make ourselves to get us through, although Elijah knows a joke and has a good sense of humour. You have to have a laugh about it, as nothing would ever be funny, it would all be very serious.
• Is the ‘ear’ the most annoying thing – the beep? (lots of laughter again)– The cochlea implant was the best idea. But they said they could put a warning beep on it if it falls off. Lizzie thought that would be a good idea. This, *beep, beep*, is what we get every 2 seconds of our life!

This footage has a completely different feel to it. It is lighthearted and humorous, yet at the same time shows the wonderful bond Lizzie and Tim share and together and also with Elijah. One of my favorite clips of the film is Tim joking about the hardest thing to deal with is each other, this is very comical and again shows the side of Tim I am used to, yet at the same time you are aware that he loves Lizzie very much. Although I really like this footage and I may use some of the visuals in the final edits of the work, I am not sure it is appropriate at this stage to be showing this kind of footage, again this is something that I could look into further in the future. I showed Anthony this footage and he agreed that it wasn’t appropriate at this stage for the type of sensitive and informative film I have created so far, it wouldn’t fit appropriately with this feel of work. I did try putting some of it in, in one of my edits but it just didn’t work and my suspicions were confirmed. I couldn’t get it to sit comfortably next to anything else, confirming to me that it wasn’t appropriate here.

Tim’s Video Interviews

As explained in previous blog post, there are two films of Tim, one where I left the room and left him to it and the other where I prompted him with some questions. I have uploaded the full versions of footage to Vimeo for University marking only, I have provided a book or passwords for this, alternatively please contact me for the password.

Here is a brief outline of the speech

• Elijah was born 16 weeks early. We went to the hospital early in the morning, 2 or 3am, with pains in the back to get checked out and it turned out to be the early stages of labour. I had work that morning – “will we be here long”! I rang our parents, who were still asleep, and said that we were in hospital, and that Lizzie was in labour – what else do you say?
• As the day went on, more people came into the room – checks and more checks, and family came on board with what was happening. They tried to slow the pregnancy down with steroid injections but he was born late afternoon at around 5pm weighing 2 lb 8 I think – and that was it. Elijah was put in a bag for warmth, was described as “grey and floppy”, and incubated in the Neonatal Intensive Care Unit.
• I had to get around the fact that my son was born 16 weeks early and deal with it.
• He was hooked up to loads of machines and over time we learnt what they all meant. Elijah was doing fine at this point, moved from high dependency to low dependency, was taking feeds well and I went back to work!
• Then he got ill and you could tell something was wrong, his blood pressure was low. We were told that we had to go to Nottingham, all this happening within 8-10 hours. We picked up some bits from home and then sat and waited for a phone call that he’d made it there.
• Nottingham was a totally different world, a dark and cramped environment, it was 1:30am and we were both tired. Elijah was hooked up to everything and it felt a million miles away from Derby. They couldn’t get his blood pressure down so we were put in a room in the Maternity ward with only one single bed and a chair and told to try to get some sleep! At 3:30am we were asked to see Elijah, he was very poorly, and by the morning he needed surgery and we had to sign consent forms and were told he had a 50/50 chance of survival.
• Sat in Queens Medical Centre (Nottingham), we were completely out of our comfort zone, no friends, no family, both exhausted and we’d not even had our son home for one day. I asked a question: “If you can’t work out what’s wrong, what will you do?”. The answer was: “close him up and care for him as best we can”. At this point I really knew that we might lose him.
• It turned out to be a perforated hernia, appendix, and they sorted it out but he looked terrible, swollen, “really fat”, as his kidneys weren’t working.
• Days and weeks passed, to and fro to Nottingham every day. We were desperate to get him back to Derby hospital for Christmas. He’d improved a lot, off a lot of the medication but the results of the brain scan had arrived and there was some brain damage. Brain damage?! It was because he’d lost so much blood pressure. There was therefore a high chance that he would have cerebral palsy, it didn’t sink in, maybe I didn’t want to believe it.
• We left the room and a whole new part of our life started, back to Derby. We looked at the scans ourselves, before and after, and even we could tell the difference. He also failed the hearing test, hearing lost during the illness.
• Elijah came home three months after we first went into hospital on oxygen, so there was oxygen around the house, and he was very small, he didn’t weigh much. We started our home life, just not as we thought it was going to be.
• That’s it, here we are, Elijah is 2½ years old, has quadriplegic cerebral palsy, a cochlea implant, he’s fed by nasal tube and, that’s the way it is now. Nothing normal about family life, we just try to get on with it the best we can. Elijah is who he is, our son, and we take care of him as best we can.
• Proudest moment – probably when he was born, I became a dad.
• Hardest moment – there are a few! Probably that it doesn’t go away, every day, when you get up, when you go to bed, it’s always there. Also when people ask how Elijah is, “how’s your little man”. If you told the truth every time, no one would want to know. When we go to the park, only really we benefit. We can have ice creams and go on the swings but Elijah can’t. We also see other families. He doesn’t seem to benefit, like going swimming, which he does enjoy a little bit, but he can’t swim and he’ll never be able to. It’s harder because it’s out first child, we haven’t already got a “running around causing havoc” child in our lives.
• Stupid things that are said – It’s better now that most people understand his problems properly but people used to say things like “he’ll be fine” even though the problems were permanent and wouldn’t improve.
• Is it hard with friends with able children – someone at work tells stories which is hard. He’ll then ask about Elijah and all I can say is things like “he ate a whole yoghurt yesterday off his hand!”
• Give self some advice – That it’s the hardest thing you’ll ever do and that the sooner you realise that the better. At one point I thought that things weren’t going to be too hard, when he was drinking from a bottle, but it was never going to be how we thought, like friends with their children.

Reflection

Tim is a very humorous character to be around, often this is bravado and it was really nice to watch him become honest in front of the camera and let his guard down. I have spoken with Anthony about this footage and we both agreed that it is a shame he looks at the camera as this addresses the viewer, where as it has been great so far with Lizzie’s to provide that feeling of gaining an insight from the outside. I have decided to edit the audio with some other visuals as the audio is really good. There are parts where Tim isn’t looking directly at the camera and I will still be able to use these for the final video. I had a  very unfortunate school boy error at the end of the second film where my memory card ran out and I didn’t realise. Fortunately I did record the audio separately so this footage is still usable, provided I use different visuals. I am really pleased that Anthony and Caroline suggested that I look into filming Tim as it really adds a different level and layer to the project. This is something that I hadn’t expected or planned to do and I know feel as though it was obvious all along, as they are a real team effort, helping each other cope. So to show one without the other would be wrong.