The day we got a diagnosis.....

I got letter confirming that the doctors on the genetics team are in agreement that my gorgeous, beautiful little girl has Soto’s syndrome. I have wanted a diagnosis for some time, but when it happened, I felt a bit disappointed! The fact is I have no idea what I was expecting to happen, some big announcement and an official letter with headings such as, diagnosis and label in big capital letters, but that is not what happens. A letter arrived to say the doctors were in agreement and they would see us again in 2 to 3 years. Right, so what does that mean from here on in. if I want another baby, will they be able to find the gene in me? Or will I just have to take that chance and what will be will be.

I guess I never envisaged how hard it would be and all that extra thinking outside the box, just to get a child dressed or coaxed out the house! So this morning I sat here thinking, lets see what Soto’s is all about then. The syndrome is not the worst prognosis I have read, quite positive with good chances of having a fairly ‘normal’ life. This heavily depends on the input in the formative years. Have I done enough? Will my child be one of the ‘normal’ ones? Then I randomly burst in to tears, and this is after reading fairly positive stories. I think of how my daughter may be able to get a job one day and be happy, but then what if she’s almost ok, but not quite and she notices she is different, feels left out of things and has no one around for her. What if I have gone? Then I wonder if I am just tired or running ahead with my thoughts. Am I too sensitive? and then I realise I am grieving for the child I thought I would have and changing what I had expected.

I am blessed to have such a healthy and happy child who has an incredible sense of humour (and the strength of an ox). A child who has a personality louder than life, will listen and respond to you better if you sing, a child who struggles with their speech and will smile sweetly and tell people to ‘die’ (as she cannot say ‘b’ and bye). A child that gets frustrated and becomes so angry she could combust, but can immerse herself in her own world and be content. A child who will jump, run and dance (that is her intention, although to onlookers, more of a wobble) down a street full of people loudly saying hi (and not being offended by those that don’t respond). I could go on all day about the incredible things she achieves, when I was so bluntly informed it could be a bleak outlook, so I will summarise in the fact I am no longer in tears and actually smiling thinking of all the wonderful things she is and can do and not worry about the future as things generally work themselves out in their own way.

In a world where we are reminded of what we have not got or not achieved, we should stop to appreciate the smaller more important things in front of us. And I know I had the child I was meant to have that has enabled me to find out so much more about myself and realise the inner strength I really have.

'Whatever doesn't kill you makes you stronger'

I went to college last year and did a foundation in Art and Design. I have always been quite 'arty' and creative, but I guess had lost part of this essence of myself through some of the many
challenges life threw my way. Unfortunately two years ago I had to leave a job I loved, mostly because I needed to be there for Izzy and also due to the the fact I was burning out (a severe lack of sleep really did not help!) but I had been through a lot.
Going to college was a massive boost to me. I was able to immerse myself in being creative for a whole year and I realised just how therapeutic it was to have something to do just for myself. I found that ideas came quite easily and I enjoyed playing and getting back in touch with my inner child. The course taught me so much and allowed my creative side to reemerge.

My initial intention for this project was to undertake a personal enquiry of significant times in my life, expressing the steps and changes that I have gone through in a visual way.

The predominate theme was to illustrate how although at times in life where things have been challenging, fundamentally everything that happen, happens for a reason and makes you who you are. My personal life history is important and memorable to me. I wanted to document this through some symbolic visual representation.

The work progressed from an initial scrapbook idea to illustrate these significant aspects of my life, to being a fully felt and emotive representation. I found that certain musical tracks resonated with me and reminded me of times in my childhood, with friends and then to a difficult time experiencing a challenging relationship that ultimately lead me to have my daughter and become a stronger and more fulfilled person. As I listened to certain tracks, they reminded me of how far I had come. I then began to collage and illustrate using photos and object on to vinyl records. I went on to produce a track combining fourteen tracks, linking the lyrics to tell a story, a journey.

Initially I wanted to use lighting within the installation to light up each record that I had collaged on to add mood through colour, this transpired to become a slide show of colours and close up’s of aspects of the collaged records to produce a visual and musical story.

The work of Tracey Emin particularly inspired me, her braveness at showing her soul and sharing personal experiences with a wide audience propelled me into sharing aspects of my life. Richard Long’s work on journey’s instilled my thinking about personal representation, as well as Lauren Child’s style of working and Milva Maglione.

Each vinyl record I collaged is highly representational; I have used actual objects that represent people and places in my life. It was a long process, but each and every photograph, object, paper and colour is meaningful and symbolic. The work evolved through personal reflection and became a very therapeutic and personally, a highly emotive process.

I went on to develop album covers that represented each theme of the records that I collaged as a further point of reference to what I learnt from that specific situation. I incorporated text within each record to add feeling and content. Each album cover was carefully designed using varying typography relevant to the theme and mood of that which it represents for maximum impact and documentation within the overall piece. I developed the media used within each record to construct a 3D outcome that would add depth and interest to each individual piece and create interest as they hang together within the installation.

Success is not a destination...its a journey

When destinations change and life throws you a new route..............

http://users.erols.com/jmatts/welcome%20to%20holland.html

What a wonderful and inspiring poem. I was given a copy of this by a stranger that knew of me and what I was going through. The first time I read it gave me an enormous sense of relief and validation, that it was OK to feel disappointed with discovering that my child had a disability and feeling that my dreams and expectations would now be different. The initial moment when the 'news was broken' (this is how the term is worded by the health professionals), by the community paediatrician, really felt that my world was shattering all around me, how would I cope, what would her life be like, will she have friends, what does this mean...and hundreds of other fears and questions whizzing around my head. It was also the way in which the news was broken, that was in fact quite confusing. The paediatrician's words;
'she may just grow out of it or she will always need support'
rang in my ears for years. Part of me just expected one day we would wake up and everything would just magically snap in to place and be fixed....this is something that I waited for, for about three years, when it dawned on me that this was not actually going to happen. Izzy has developed and things have changed, but at a very slow rate, but she is still developing.

I felt quite angry with how this had been explained to me, because it may have taken a huge amount of 'waiting' out of our life and muddling through the unexpected on my own. I now look back at this in a very positive way. As I hoped that Izzy would just 'catch up' I kept hold of my expectations and treated her normally and expected her to be able to understand everything and eventually be able to do the things that I worried she may not be able to, this enabled me to realise Izzy's potential and not have anything to hold us back. It stopped me thinking that she may not manage or not be able to do certain things and just help and try and support her to do as much as she can.

Intro

I wanted to start this blog up as a way of documenting and sharing my experiences with people. I have a very special daughter who is now almost 7, her name is Isabelle or Izzy for short. I had a normal pregnancy with her (although I was under enormous stress relating to the breakdown of the relationship with Izzy's father). Things throughout the pregnancy really did develop normally and really there were no concerns. Izzy had a long and difficult birth, but nothing that was really out of the ordinary. Looking back the one thing that really stuck out in my mind was that she never cried when she was born, I guess I thought this is what should happen! I remember looking at her in utter disbelief at this amazing and precious new life looking at me, her incredible big blue eyes (and also her rather large head which I will come to later). Izzy just lay there, eyes wide open and it felt like the most overwhelming yet inspirational moment in my life.

I will also point out here that I was a single parent. I felt a little lonely at times, but as most parents know, you don't have a lot of time to think about that with a new baby to look after! I guess it was the small things that I noticed most, not having someone to share the precious first times with. I kept this all at the back of my mind and kept looking forward.

As Izzy developed, things seemed OK, apart from the fact she really didn't seem to need much sleep and was really difficult to feed. I managed to perserve with breastfeeding until she was 6 months old (looking back i don't know why or how I managed for so long! Izzy really had no concept on just feeding normally and a feed could last up to 4 hours, this went on till she was 6 months). The sleep deprivation, like every parent knows was hard, but in my mind I knew that in a year or so from now her sleep would be established an I would not feel like a zombie forever!

Little did I know that this poor sleep pattern would be taking me up to the present day!

I think Izzy was 6 months old when I had this feeling, that I cannot really explain, just this niggling feeling that something just wasn't quite right.

This blog is my journey of finding our way through instincts and working out the best way in which to move forward and make the best life out of what I already had...but didn't always realise or trust was there.

I guess what I am trying to say is that we are all the experts of our own children, yet sometimes this can get swayed or lost when we listen to or at time get bombarded with 'professionals' opinions. I am not for a minute devaluing any advice or information I have been given, but at times depending on how you as a parent are feeling, we don't always take in exactly what has been said or challenge it and can go away from a situation feeling more confused and even more isolated.

I hope that by sharing my experiences with you and our journey so far, it may decrease that sense of loss and isolation that we can feel when we find out that our child has a disability or is temed 'different' to their peers. I now feel incredibly blessed that my child is different, she has taught me so much about the world in a different way and for me she has the ability to not fit in where most of us strive each day to do just that!