If you're as obsessed with chick flicks as me, you'll know of the film 13 going on 30. Where a little girls dreams of being grown up and having it all, wishing her life a way to be an adult - essentially a 13 year old brain in a 30 year old body.
So this is how I am going to explain Terri. Slightly reversed but you get the gist.
Terri was born on the 14th January 2003. Although she is 16, her mental age is very much that of a toddler. It all gets very confusing. In some things she has prematurely aged and in others she is that of a teenager.
Imagine this.
Terri is 94.5cm tall (the .5 makes all the difference) and wears 3-4 year old clothes. So, she has the body size and mental age of a toddler. But she suffers from ailments that those in their 70's/80's do - things such as cataracts, tremor, going deaf/blind. In some ways it is like we have our own little Benjamin Button.
She may appear small, dainty, and not have the same mental capacity as others her age but puberty and adolescence are still apparent. It is cruel really. How her body goes through so much on a day to day basis and then still manages to have a monthly cycle.
Periods, although not great, aren't the worst to deal with. Terri is incontinent - meaning she is still in nappies. So in some ways we are always prepared for a period.
What is difficult if trying to explain to her why it is happening?
or why she feels the way she does?
It's funny, I have always been told that women put it on when on their monthly cycle and that mood swings and change of attitude are something controllable.
I am telling you now. We do not put it on. Terri is my solid proof.
She has no preconceptions about how this should effect her and half the time presumes she just has a sore tummy. Her mood however, says it all. Screaming matches, random moments of crying and slamming doors. During this time it is like living with a hurricane. A sad, sore, moody hurricane.
Not all children with Cockayne Syndrome will develop periods - like everything else, it just depends on their body and at what stage of ageing they are.
Sometimes when speaking to Terri it is possible to have a grown up conversation, like that I should be having with my sister, other times it is like talking to a toddler.
We essentially have the worst of both worlds.
The terrible twos mixed in with teenager.
I find it hard listening to other people talking about their relationship with their brothers and sisters. People I know are doing makeovers, sharing clothes and going out with their sisters. I only wish I could do that. I can imagine - Terri would be the worst person to share with, but in someways I still feel like I am missing out on that side of the sibling relationship.
Don't get me wrong, I know I have my brother, but in some how I don't think he would appreciate girly chats.
I can't tell her about my problems (more because she repeats it to anyone and everyone, she likes to tell people when i'm not wearing a bra).
I can't text her or phone her when i'm down.
My mind often jumps to the idea of getting married. She will never be my maid of honour or plan my hen do. She might not even be there for the day if it was to happen. I am not going to have a sister to share milestones with like moving out, big birthdays or having babies. My children might never know there Auntie Terri. That thought is horrible.
Then I think how lucky I am to wake up on a morning to the sound of her shouting my name so she can get in bed with me for some snuggles. I can scoop her up out of her cot and hold her like a baby, and it is the most comforting feeling in the world.
Grass is always greener on the other side...
but I really don't mind my side.
As long as I have Terri.
-Jody Patricia
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