I gave this a lot of thought and eventually, I came to the conclusion that to achieve my aims with this blog, I’m going to have to share some information about The Girl. That way I thought you’d get to know us better, right?
I am painfully aware that she should have her privacy. That’s why I refer to her as, The Girl. But seriously. If I adhered strictly to the privacy protocols of our fair land, the only information I could post here would be: “We are both alive.” And then I’m not so sure I could use the ‘we.’
So here are some things I thought might help you understand our situation – if you’re interested. The girl is 31 years old. She was 3lb when she was born. She has a ring number one chromosome. That’s where the top and bottom of the chromosome have been knocked off, and they formed a circle. Sounds happy, doesn’t it? Well, according to the research on the 6 reported cases I found, all ring number one chromosome kids are happy. And I guess if you’re going to have just one attribute, that’s a pretty good one to have.
She’s small in stature (around 3ft 6”) and somewhere between moderately and severely intellectually handicapped. I don’t usually use the word ‘disabled’, but it’s one most people understand. If there’s anyone enabled in the art of getting what they want, it’s her.
Like many with severe genetic disorders, she has secondary ailments and problems. She was also born without the bones at the bases of both thumbs, so no opposable thumbs. Does that mean she cannot pick things up? The hell it does. You’d be surprised what she can pick up. She chops things with scissors, opens childproof containers and tears things apart with frightening speed and precision.
In her short life she’s had pneumonia, meningitis (That was a surprise!), dislocated hips, nose bleeds (After several quarterisation’s I discovered they were caused by infected sinuses), ear infections and more.
In later life she’s developed type 2 diabetes (two insulin injections a day), high blood pressure, high cholesterol, cirrhosis of the liver resulting in oesophageal varices which caused internal bleeding last year, and, also a result of the diabetes, cataracts. Over time, her joints are becoming stiffer and she’s slowing down. She does have almost perfect teeth.
Me? I’m 56, on no meds, have a few twinges. Somehow it doesn’t seem fair.
And communication? I’ll go into that in a later blog. Her communication consists of learned sentences – which makes for some interesting conversations. She’s never been known to string more than five words together. Can she communicate? Oh, yes. You just have to know the rules.
So now I’ve probably breached every privacy law in the land, I feel I can move ahead.
Next post, I’ll talk about communication. That’ll be interesting. Join me.