We all know the feeling - eyes on you, like they're burning through you.
Now imagine, every time you left the house, eyes followed you.
When I look at Terri all I see is her gorgeous looking face she has never looked different to me. My heart melts when i see her and I've laid with her and cried as i stroked her soft little cheeks just because i couldn't get over how amazing she is.
But...
No matter where we go eyes follow her.
Glaring at her.
Even when she was baby it was evident we were going to have to get used to the idea of people watching us. On our first family holiday as 5 we went away to a caravan park, it was warm but not overly sunny. Terri burnt - so much that her face and the skin that was exposed dried, cracked and fell of her face. People stared thinking we hadn't protected from the sun - she had wore the usual hat and SPF. At the time we didn't realise she was technically "allergic" to the sun. Her photo-sensitivity was one of the many clues to her eventual diagnosis of Cockayne Syndrome.
When out as a whole family it is easier to deal with; when your with each other you don't tend to realise the eyes on you.
From when I was old enough to be left alone with Terri I have taken her up town and for days out on my own - but over the past few years I haven't taken her out on my own as much as I should or want to, because of my anxiety.
Even though they're staring at Terri it tips me over.
A couple of weeks ago we were in Morrison's, doing our usual weekly shop, and I was on what I like to call "Terri Duty" watching her while she walks round and fills her trolley. Then I noticed two women had physically stopped shopping and were just looking at her.
I hurried Terri along just to get her out of their sight (i'll often block her from peoples view, she doesn't even realise they are looking at her but she can't protect herself, so i do it for her).
A couple of aisles down and there they were again. This time they followed her with there eyes and were whispering to each other.
That was it.
I couldn't hold it in anymore.
I snapped and told them to "fuck off and try smiling at her instead". I was shaking, close to tears and stayed with mam and dad while we done the rest of the shop. Fully grown adults had stared at her so much it had ruined my day, i spent all day thinking about it.
Children are different. They are inquisitive. They look innocently and often ask questions - which i am very happy to answer. I always make the point of telling Terri to say hello or wave. What I don't appreciate is when parents/guardians of the children stare,pull the child away or don't answer questions that their children ask.
You are the reason that they don't understand. Stop trying to protect your child from knowing about people being different. They can't grow up thinking that everyone is normal, you're not protecting them. You are teaching them that being different isn't ok.
Don't get me wrong, i don't mind people looking at her. She does look different, it's understandable. But smile at her, say hello.
To me she is the most beautiful little girl I have ever seen, if only the rest of the world seen the same.
- Jody Patricia
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