Blog:

Scalett’s story

Charlotte baby

 

Perfect birth, induced full term Scarlett was flawless in everyway, tiny, but perfect. Her big blue eyes the beautiful focus point to her face, not a thing in the world could make me believe that Scarlett was born blind.

 

Three months into her little life and her gaze still failed to hold, I told myself she was a busy, happy and content child, busy in her head, just like me, wanting to absorb everything in. Four months in, still nothing failed to capture her gaze, then the comments started. “She doesn’t really look at anything” “her eyes seem to bounce around the room”, I told myself she was just learning how to focus and children develop at different stages.  It wasn’t until one day a friend took Scarlett over to a huge plasma television, she remarked at how a baby a week before couldn’t keep their eyes off the massive colourful screen, Scarlett’s eyes still bounced around the room, failing to fix onto anything.

 

Within a week we had been referred to Royal Bolton Eye hospital, drops were placed into her eyes and we waited for Scarlett’s pupils to expand.  As the nurse shined the torch into her eyes, I noticed how her pupils failed to respond, no shrinking or contracting, just remained like big black pools, placed perfectly central inside her sparkly blue iris.  A worried look emerged on the nurses face, she quickly left the room and came back with someone wearing their own clothes, a consultant, doctor maybe, once again she shone the torch into Scarlett’s eyes, the same worried face, my stomach began to turn.  We were ushered into the waiting room, followed by another room, ophthalmologist Mr Wallace came in, that torch again, yet another worried expression.

 

Recalling the conversation that day is hard, you’d think it would be a conversation that would permanently imprint, the only thing I do remember the words Optic Nerve Hypoplasia.  Car journey home, silence, no tears, no anger, just silence. Late that night, still no tears, just numb.

 

Maybe deep down crying was a sign of acceptance, was I ready to accept it yet, plus we didn’t know to what extent Scarlett was visually impaired, perhaps a pair of glasses, pink sparkly rims, she’d look so cute, yes that was it, glasses, glasses would fix all this mess, no tears necessary.

 

Next, an MRI scan, hormone tests, watching my helpless baby lay sedated on the bed, ready to go into the scanner, I looked as her pupils remained fixed, she didn’t look into my face, I struggled to ever get a photograph of her looking at the camera, why hadn’t I realised sooner? Glasses, that was it, she’d need big print text and sensory rooms, not the end of the world by a long stretch.  As she emerged from the scanner and I sat waiting for her to come round for the sedation. The consultant confirmed her optic nerves were under developed, far shorter and not as many as with normal eyes, and the extent of her impairment remained unseen.

 

For weeks we tried endlessly to get her eyes to follow lights, was she tracking? Was I convincing myself she was acknowledging the lights. Still no tears. What was wrong with me?  Did I feel there was no need to cry as she’d just need treatment.

 

As time passed and Scarlett developed as an amazingly bright and happy child, walking confidently…… straight into walls, feeding herself…. but unable to locate the food directly.  She developed such an affinity with music, The Gaslight Anthem, the first band she ever danced too, she bounced round in her cot and displayed such excitement when their songs blared out of the CD player.  Florence and the Machine, that album is where Scarlett developed her unique talent for clapping out the beats of songs, perfectly matching each beat and singing along, she was just like any other mischievous toddler, getting into all kinds and exerting her independence.

 

I think as the realisation that Scarlett had very little if no sight was such a gradual thing, I slowly let go of the glasses theory, six monthly ophthalmology appointments followed by worried nurse faces confirmed it more and more.  At the end of 2012 it was confirmed by Mr Wallace, “I’m afraid there’s no useful sight”.

 

During this time Scarlett’s love of music had grown, she attends nursery for one and a half days a week, a mainstream nursery, where she mixes well with the other children.  The staff all love how tactile and affectionate Scarlett is, she loves nothing more than to hug, kiss, sing and bounce!

Scarlett loves to bang its her favourite pastime, and as cute as it is, I was regularly being woke at 4am with a rhythmic banging and Scarlett hitting the high notes.  She’ll bang on everything anywhere!  She loves to play the piano and sings along when I play her favourite nursery rhymes.

 

Scarlett is developing such a love of stories and poetry and gets excited for the funny voices.  Strong willed and assertive, Scarlett knows exactly what she wants and doesn’t want and that includes holding the cane.  After months of mobility treatment we’re back to trailing and guided walking, the cane is back in the cupboard.

 

Food, food and more food, her hypersensitive taste buds means she adores to eat.  Sometimes when I collect her from nursery she’s had seven helpings of tea and two puddings! You can’t rustle a packet within a mile radius of Scarlett as she assumes its a lovely treat and comes on the hunt.

 

Bath time has to be Scarlett’s favourite part of the day.  I think maybe as she has no vision it doesn’t bother when she gets water into her eyes as she’s in and out of the bath water no problem, and she loves to have water thrown into her face.

 

Scarlett is happy, truly happy, she doesn’t know she’s different and she developing such an amazingly beautiful personality.  We’ve hit our hurdles which we are trying to overcome, but I know with time Scarlett will get to where she needs to be and blossom into an extraordinary young girl. The world is her oyster and she will seize every opportunity and every moment, I will ensure she’ll have such an amazing quality of life, rich with experiences, she certainly will see the world!

 

Written by:

“Hi my name is Charlotte, a single-working mother of two delightful angels, Scarlett who is three and a half and Sonny who is two and a half… and yes I am slightly mad!  The close age gap between the children can make life hard sometimes, but on the positive side of it Scarlett and Sonny are ever so close and I think they will appreciate the similarities in age as they grow up together.

I currently run an online parents support network, throughscarlettseyes.com. My information and resource sharing website aims to connect, inspire and inform parents from across the UK by providing them with lots of current information and advice when it comes to raising visually impaired children.   My idea was inspired through raising Scarlett, who was born blind, she was diagnosed with Optic Nerve Hypoplasia at four and a half months and has no sight due to this congenital condition. I spent lots of time searching for answers through the internet and I found chatting with other parents a great help.  I wanted to use the knowledge I had gained through raising Scarlett to help other families, and so Through Scarlett’s Eyes was born.”

To find out more about Through Scarlett’s Eyes:

https://www.facebook.com/ThroughScarlettsEyes?ref=hl

https://twitter.com/scarleyseyes

http://www.throughscarlettseyes.com/

email: cmellor@victa.org.uk

 

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