My name is Charlotte and 36-year-old single mother to two brilliant children aged 10&11. My daughter Scarlett was diagnosed with optic nerve hypoplasia at 4 months old, resulting in her being blind.
Fast forward 10 years and 8 months, everything is completely different now. I am completely different. It’s been a process and not one that is complete, I’m still constantly learning and evolving as a person to an ever-changing environment that hasn’t been an easy journey. I don’t just mean adjusting too giving birth to a child that I didn’t expect, with a set of complex needs that are still revealing themselves, but also adapting and responding to a world that is still fine tuning itself to the needs of people with disabilities.
I am completing an exercise that was on the Place 2 Be website, a suggested resource to examine how over the years you can grow. The aim of this exercise is to help you put things into context and help you to gain some clarity. There are many reasons this type of exercise can be used to help to navigate through some past experiences, but for the purposes of this one, I really wanted to confront some of my past mistakes as a mother of a newly diagnosed blind child.
All of the questions and anxieties you have at the moment are 100% warranted… you don’t need to worry about them all at once, no amount of google or soul searching is going to appease you in the immediate. Be patient with the process, don’t rush to get everything resolved and definitive answers in an instant. Your incessant pro-activeness is your way of making you feel like you have control over your situation and have reached some form of acceptance over what has happened to your daughter. Things don’t happen overnight and the sooner you realise that and show more compassion to yourself, the gentler life will become.
Trying to find a ‘cure’ or a way to restore Scarlett’s sight is counter productive- use all that energy to enjoy her instead. In a few years time you’ll realise you would never want change a hair on her head, you wouldn’t magic wand 20/20 vision. She’ll become your absolute favourite person in the world, exactly how she is and you’ll realise how lucky not only you are, but also her. She’ll live a life of happiness and be full of pure love for everything around her. You won’t feel bad that she can’t attend a dance class or dwell about the other things that she ‘can’t’ do, because she’ll dance anyway, in her own way! She’ll do it everywhere too and it’ll be the most perfectly beautiful thing you’ll ever see. You’ll be in awe of her and how she embraces life and she’ll have that same effect on people around her. How she was born, will be her greatest gift.
You won’t always think ‘its such a shame’, in fact, you’ll get over the ‘it’s a shame’ stage really quickly- try not to get too cross with people who pity Scarlett- they don’t know her like you do, they just see the disability instead of the person she is.
Celebrate her! The more you do that, the less people will view her as someone who is unfortunate. Giving her the opportunity to live her life to the fullest, will help others to see that she isn’t defined by her disability and in fact she is completely content. Potential is subjective, that concept is something that you need to remember, Scarlett’s interpretation will guide you on this.
I know you might not want to hear this right now but get prepared for long and drawn out battles to get the best possible life you can for your daughter. I think you’ll be really surprised to find out that the services available for children aren’t easy to come by- big shock! The navigational tools and support are far from being readily available. Money and waiting lists will become your arch nemesis and not the disability! The frustration around this will on occasion tip you over the edge, but you’ll find other parents who will help you with this and in turn you will help others with what you learn.
You’ll actually be really great at finding out what she needs and how to help her have the best possible start but it is never handed to you on a plate. You’ll have to fight really hard for lots of things throughout her life, from therapies to education! Being constantly eaten up by how unjust Scarlett’s situation is isn’t going to help you, although it might motivate you at times. Ultimately, its going to put such a strain on you and it’ll be a catalyst to many of your unravelling’s, but you bounce back- every time!
Also, Sonny isn’t going to irrecoverably damaged by Scarlett being blind, stop feeling guilty that he is somehow suffering by being the sibling to a complex needs child. He’s going to be okay, he’s going to better than okay actually! People will always remark at how mature and grown up he is in response to Scarlett. Don’t get me wrong, he’s going to see and hear things throughout life that are challenging, but just keep talking openly and working through issues together. It’ll inevitably make him a stronger person with an amazing outlook on life and incredible resilience.
You 100% could have done a million things differently, for whatever reason Charlotte you seem to like making lots of mistakes and you’re forever reflecting and banging your head against the wall, but they don’t define you. There’s no such thing as a perfect mother, but there are plenty of perfect moments along the way.
Your future self!
P.S Scarlett will sleep eventually, it won’t be easy but she gets there in the end… I promise you! Don’t give up x