I feel that Thursday was the important, first step that is needed towards helping E get better with her eating. I hope that you will both be able to attend next week’s feedback meeting to discuss where to go from here and to gain an understanding of what the specialist team believe is her diagnosis and hear what the suggested treatment options are. I feel it is important that you are both there to learn the right solutions to help E overcome her problems and ultimately to learn what the diagnosis is and what the recovery programme will involve.
I feel it will give you the best possible opportunity to discuss how to help E gain weight, eat “normally” and lead a more “normal”, healthy and active life – at home and at school.
The responsibility of getting E better doesn’t fall just on mum but from my own experience, I think that perhaps what she needs is a big team – which includes all her family, the specialist team at GOSH and her school. I know what was (and still is) helpful and reassuring for me was to have a team of support – which includes my family, friends and the experts.
Knowing E, knowing you and knowing quite a bit about what she is going through, it is important that whatever diagnosis is made is taken seriously and I hope you will feel reassured that the hospital will know what the best route will be, that you would give every possible consideration to the options available, which may include possibly going into hospital. In the short term, this may seem quite harsh but it will – I know – benefit her in the long term, in the same way that it did for me. In my case, being in the Woking Priory might have seemed disruptive, difficult and unsettling but it gave me the tools to lead a normal and happy life. Whatever treatment the experts at Great Ormond Street suggest will give her the tools to eat and help her become fit and healthy. Obviously E’s and my situation are different not least because we are very different ages but what is the same is that she needs the tools that will help her learn to eat more normally – in the same way that I was given tools to be calm, think rationally, and become more self aware.
From my own experience and perspective, I don’t think this can be done at home because I don’t feel that any of us have the essential knowledge and tools at home to be able to help her, and I also believe that this is not something that we can brush under the carpet – because of the implications that this may have on her in the long term and in later life.
I feel that although the team at GOSH don’t know E best – they do know the problem best and know how to make things better. The expert of Ella (you) and the expert of E’s illness (GOSH) both need to come together in order to help her. And I am sure that whatever treatment is suggested, you will have an important role to play.
I do feel that once it is known what is wrong with Ella and causing her these difficulties with eating, it is important that the hospital’s treatment plan is pursued, because it will make her better, which in turn will make things so much easier at home. I think that both you and E will be so much happier and life will be so much easier once all these hurdles are overcome.
I feel we are so lucky to have been given this chance to meet these top experts who are renown for helping children with problems surrounding food and eating.
I hope that you can trust these specialists in eating disorders because even though you know Ella better than anyone, they will have dealt with other children, who have similar problems – which gives hope to the fact that she can get better too. I also think it is important that these problems with her eating are dealt with now rather than waiting for them to get worse – it has already been left late enough.
Whether or not you want my opinion, I want you to know that I think Ella’s situation is very serious and must not be ignored. If I was in E’s shoes, it would be important for me that both my parents were able to learn and understand what I am going through and that they were able to find the best possible help in order for me to get better.
I believe that although when we look at E and see a smiling, chirpy, funny and quite frankly FABULOUS child, I strongly feel that there must be things going on for her under the surface that can’t be seen but are causing her to not eat properly – and perhaps even she can’t explain what these are. But with specialist help through vital re-feeding and other things like art therapy for example, an insight can be gained as to why she has these eating problems and how best to over come it.
I believe we all want the same things – for E to be happy, healthy and strong enough to be able to live without a peg. I have absolute faith that these things are all possible - I hope you understand that I am only writing this letter to you because I love E more than anything else in the world and I want her to be well. And nobody doubts for a second that you want her to be well and happy too.
I also hope you know that nobody is blaming you for any of this. It is not your fault that E has these problems. It’s a biologically based mental illness – E didn’t choose it and you haven’t caused it.
I love you lots