Surprising isn't it.
I have no doubt that having a child with special needs can make or break a family. And whether it has made or broke family units, CS families just seem to click. The positives, even though the negatives, are enormous. The joy that these children provide is unreal.
Our family - The Brodley Bunch - is close. Our little family unit at home is perfect. I don't know whether to thank Terri for this or whether we all just really like each other, but when we are all at home together it just feels right.
As I have grown up, I have been surrounded by people who can't stand living with their family or hate being at home, but I feel like we are the complete opposite. Although I would love to move out and try my hand at being independent, I can only imagine I would spend the majority of my time at home anyways.
In our home, we aren't really separated into Mum, Dad etc. We all support each other. We all help with Terri.
Life isn't always easy or without stress and dealing with these hurdles is easier when we are all going through it together.
But no matter what your family unit is like. Whether parents have separated, siblings moved away from home - when surrounding a child with Cockayne Syndrome it works. They have an amazing way of bringing the best out in people around them, when you are with them you forget everything else.
This is something that my Counsellor has recently commented on during my sessions; when speaking about my family. She asks whether I have any hobbies or spend much time away from home, and the answer is no.
But after speaking to her more she has came to the realisation that maybe, as a family, our defence mechanism is very much the same. Spending time at home. My Mum and Dad have never been the type to socialise and go out, but maybe that isn't such a bad thing in our circumstances - maybe we are doing something for ourselves, it is just that we choose to spend this time with each other.
I often wonder about the future, when Terri isn't here anymore, I know I shouldn't.
But I wonder, will we still be as close?
Will our family unit be the same, even though we will have lost the glue?
My family are literally my best friends. There isn't anything that I wouldn't tell any of them. I can't imagine growing old and losing touch with them. And because of how we have been brought up together I really don't think that will happen. I don't want to move on with my own family and only see my Brother on Christmas. I don't want to see my Mum and Dad only once a week.
In the end we never know how/where we are going to end up, but I just hope I still have them.
Having Terri as a sibling has made me appreciate the small moments, our inside jokes and Friday Night Chinese (even if Lee does eat upstairs because he physically can't deal with the dogs watching him eat).
I have no doubt that all families have their own ways of getting through each day, but I just wanted to share ours.
There are no right and wrongs.
But I guarantee a Cockayne Syndrome Home is a HAPPY HOME.
-Jody Patricia
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