Through Scarlett’s Eyes- the end of an era

This is quite difficult for me to articulate, so please bear with me.

I have a million things I want to say and equal amounts of emotions to contend with. I am going to do my very best to write this as coherently and concisely as I can, to disguise the plethora of mixed emotions I am feeling over… as the title says, the end of the Through Scarlett’s Eyes Parent Support and Information Network.

In 2013 the website was born, so for six long years now the Through Scarlett’s Eyes website has been a massive part of my life. Employed by VICTA to create and deliver this project must be up there as one of the greatest achievements in my life.  Having sat and thought deeply about what direction my life could and was able to take professionally following the birth of Scarlett, I must admit I was feeling a bit lost.

I knew the amount of responsibility and time it would take to care for Scarlett, and the extra I would need to give because of her disabilities.  When she was diagnosed with optic nerve hypoplasia at four and a half months, the news of a new welcomed addition to the family, Sonny, followed a few short weeks after that.

The relationship between my children and their father was never right.  There wasn’t a long-term relationship prior to the two pregnancies that followed in quick succession or even any thoughts of this relationship lasting.  No fairy tale wedding, only friends at best, so when the relationship ended when Scarlett was 18 months old, it didn’t come as any big surprise and was ultimately the right thing to do. I knew I was in this on my own; at that time I didn’t even know what ‘this’ was going to look like.

I did however know very early on that this was going to be one hell of a roller coaster ride and the profound implications of my very precious and complex little girl were going to play a prominent part in every aspect of my life.

I was desperate to understand my little girl and how her blindness would affect her, and equally as desperate to be able to piece together a picture of what her life would potentially look like. I was determined to find other parents and other visually impaired children so that I could educate myself as much as I possibly could to try and be the best mummy I could be.

I fully embraced Emily Perl Kingsley’s philosophy in her very famous poem ‘Welcome to Holland’: ‘So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.’

At the time of the website launch I wholeheartedly believed that I had come to terms with the life that we as a family would have to face and that I was in this position now where I wanted to help other parents do the same.  So, Through Scarlett’s Eyes was created and for a very long time now I have shared mine and my families lives online with the hope that my stories would help other people.

It soon became very apparent that this project was not only helping other people but more than anything it was helping me.  I always tried to write as positively as achievable about mine and Scarlett’s life.  Even when things were tough, I always tried to hold out on publishing a blog as I wanted to try and tie the ending with how I managed to overcome certain troubling times.

I didn’t want to use Through Scarlett’s Eyes as some form of soapbox for me to complain, but always tried to use it as a tool for doing good. Saying to people ‘right, yes, this is a really bad situation and yes I do feel awful, BUT I did this and now I feel okay and I can be the best and most resilient parent for Scarlett and in turn teach her how to be the same’.

Of course, it wasn’t always the case, and it has been quite hard looking back at some of my old posts, like a virtual trip down memory lane, when I read how I have articulated my difficulties in raising Scarlett or the difficulties she faces herself.  I suppose there is some form of PTSD affect happening when I do look back at old posts during challenging times in life, as it is like I am emotionally transported right back to the exact thoughts and feelings of that time, like a traumatic flashback.

I am very well acquainted with sadness and isolation, trauma, anxiety, I could keep going. I know them like they are all my siblings who I have grown up with my whole life as they have always been there, even from being very small, those negative emotions have been the most prominent.

Scarlett though, she taught me all about happiness and joy.  Her loving, playful, intoxicating pure and untouched nature that she radiates from every pore, is like nothing I have ever seen before.  Even though people do feel sorry for her or even pity her due to her complete lack of awareness of her disabilities, I truly believe it is her greatest gift.

When I think of Scarlett and how her visual impairment and learning difficulties have affected her life, I don’t see them at all as a detriment.  I understand how people can often jump to that conclusion and think that there must be something ‘wrong’ with her or that in some way she is broken and needs to be fixed.

To me Scarlett has just got it so very right.  I was asked again this weekend by a spectator ‘So what’s wrong with your little girl?’ I don’t think that question will ever stop being asked, but I sure as hell do correct the clumsy thoughtlessness of it.

I enjoy reading about Chinese philosophy and I find it all very fascinating. I found a strand of this philosophy that really made me think about Scarlett and her little place on this earth.  When reading about Taoism I came across the Chinese word “Pu” which can be translated as “the uncarved block” and refers to a state of pure potential which is the primordial condition of the mind before the arising of experience.

The Taoist concept of Pu points to perception without prejudice.  The Taoist belief that all of nature was at its most powerful when it was in its original, unchanged, natural form.  I don’t see Scarlett as vulnerable or disadvantaged, I see her as something really powerful.  What this concept means in other words, is that things were better before they were carved into something new.  Scarlett will always be my little uncarved block – tainted by very little and the simplicity of her life is something that should be admired rather than seen as a disservice.  I hope with all the things that I have written about Scarlett that this shines through, and that I have somehow created some form of worthy legacy of the impact she has had on every dimension of my life.

So specifically, on to Through Scarlett’s Eyes….

Through Scarlett’s Eyes has been my best friend over the last five years.  It’s been there when things have been more amazing that I can ever imagine and together we have been able to share the joy!  It’s been there through every struggle and we have been able to cry together and has taken me on lots of adventures! It’s introduced me to so many wonderful people who have helped me to shape my aspirations and expediencies of Scarlett, people who have helped me to dream bigger for her than I could ever have imagined.  It’s been there when I’ve felt that no one else was, it’s stood by me through thick and thin, it’s like an online virtual memory journal… I will miss you Through Scarlett’s Eyes!

A combination of personal and professional reasons means that soon Through Scarlett’s Eyes will no longer be live on the internet and although I will miss it, it is the right decision to take.  I am very happy that VICTA gave me the opportunity to share my little girl with you all.

VICTA is currently working hard behind the scenes building a new Parent Network and many new projects and ideas are beginning to flourish and take shape because of this. Alongside the lovely Felicity (who you may have previously met through VICTA events) we are working on some really exhilarating stuff! It’s a dynamic time for the charity, with an ever-growing ambition and some slight changes in direction and I am so happy that I still get to be part of it!

I’ll be remaining as a VICTA employee and I will be assigned within the family support area and honestly everything that is going on at the minute will be a fantastic way for us as a charity to promote and facilitate the importance of parent to parent support!

A new website to take the place of Through Scarlett’s Eyes, the VICTA Parent Portal, is nearly ready to be launched. This website has been updated and is better than ever as a central point for parents and carers to obtain valuable information. The existing social media accounts which have been linked to Scarlett’s Eyes, will also be changing to the VICTA Parent Network. There is such a wonderful group of great people who have followed and contributed to the pages and the groups, so we hope you will come with us under the new Parent Network that we are currently building 😊

Although I am sad to be bidding farewell to Through Scarlett’s Eyes, it really is for the right reasons and the ideology of which the website was based around will still be living and breathing through the new VICTA Parent Portal.  In a way, Through Scarlett’s Eyes has created a great foundation for the next stage of projects to evolve.  More than ever the new network and website will work far more affectively in helping as many visually impaired children, young people and their families, which is the cornerstone of our charity!

I would like to thank every person who over the last six years has taken time to read, share and like any of the posts that I have written about Scarlett and I hope that you have enjoyed watching her grow up into such a lovely young lady.  The support that the VI community has given my little blog site has been phenomenal!  I would also like to thank all the people who have submitted their own personal stories to the website, I know how hard it can be to share personal thoughts and feelings online. I think its great that the website was utilised by so many young people, parents, charities and organisations as a platform to make their voices heard!  Without all of you lovely people in social media land, Through Scarlett’s Eyes would never have existed.  All of the stories that have been published will be going to a new home on the VICTA Parent Portal and will reach many more people!

So once again from me a big fat THANK YOU!

Much Love

Charlotte, Scarlett and Sonny xxx

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