Within my blog I am trying to address not only what it is like to live with a sister like Terri but, also what the experience is like for Terri. How the syndrome affects her as an individual.
The aim of this blog is for those in the same boat or those around these families to understand more and maybe even help newer families. I only wish that I could have had all my feelings and thoughts explained to me when I was younger.
As mentioned in a previous post Cockayne Syndrome has a main set of characteristics however, that is not to say that every child that suffers from CS will develop the same or be exactly the same.
When I talk about Terri to those who have never met her, I have a hard time describing her mannerisms and what she is like. Many people when they first meet her after my descriptions are shocked to see actually how small she is. Others will speak down to her or act like she is a baby. I like her response to these people; she just looks at them like they’re stupid (which they are).
When Terri was younger, she was constantly proving medical professionals wrong. When we attended the medical conferences once a year doctors would often be amazed that she seemed to be improving – even though the condition is degenerative – her body seemed to be doing the opposite of what we were told it was meant to. She was still poorly, don’t get me wrong but, she was managing to improve her walking and speech etc.
Now, over the past two to three years, Terri’s health has gone on a downward spiral. All the ailments and problems we were dreading had come to fruition.
She lost her hearing completely, can no longer walk unaided – spending most of her time on her knees with her tremor being to hard for her to control. Recently, she was registered as blind – with one detached retina and next to no sight in her other eye. Liver enzymes are so high that they need controlled by medication to stop her aggressively itching and breaking her own skin. A minor cold, if caught, could essentially kill her – degenerative means that basically once her cells are dead, her body can’t magic up anymore.
Sometimes I forget how hard it must be for her – I know she has no idea that she is different or that she is poorly, but the poor little bugger just has no choice. We get to feel sad and down about what the world has done to her, but at the end of the day we get to move on.
So, this is a look into a day in the life of Terri. I am not promising it will be interesting – she doesn’t do much these days, but at the same time you will get a sense of what she goes through daily, medication and her routine.
We will begin in the morning (I say morning, even though I mean between 10:30 and 11:30), the early bird doesn’t catch the worm in our house. This is around the time Terri wakes up, we stopped getting Terri up early when she was too poorly to go to school, it just didn’t seem worth it and it was unfair making her get up when her body needed to sleep.
It takes her a while to get sorted for the day – before she can do anything she needs her cochleas on, glasses on and medicines – most days she doesn’t get dressed, she just stays in her pyjamas. It is easier to leave her as she is, happy, the fight to get her dressed most days isn’t worth it. She has eye drops to be given and feed to have down her tube... all of this when she has just got out of bed. We try to do all of this while she is still half asleep so she can't fight back. You can tell someday's she just doesn't want to be faffed on with however, it all needs to be done.
Most weekdays Terri and Mum just clean and do things around the house. She likes to think she is being helpful (sometime she is, sometimes not).
It is hard for her, because if she wants to do anything, the majority of the time she needs our help to do so. If it wasn’t for us she wouldn’t eat or be able to stay clean. We have something’s on her level – for example, on the floor of the kitchen cupboard she has her own Quality Street tin filled with her favourite snacks which she can help herself too if she wants them. But anything else is up to us.
Although her needs are profound she manages to entertain herself. She can play in her room for hours, with her play kitchen, dolls and her iPad and she is quite happy.
Whenever Terri does need to leave the house is it usually for a doctors appointment or to go food shopping on a Saturday. Her days are quite boring; but to her they’re perfect. She enjoys staying in with us and just snuggling. I often think about how her life is going to be cut short and maybe we aren’t making the most of the time we have with her…
but we are doing what she loves.
Other than us pestering her to keep her healthy and playing she really doesn’t do much else.
It’s crap really…
I am out here, living my life, working, seeing my boyfriend and friends and enjoying myself...
I just wish she was able to do the same things.
- Jody Patricia x
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