Wednesday, 14 June 2017

Ohana - some very special people

It's that time of year again.
Rare Chromosome Awareness week, where, by now, you all know, I facebook, twitter, share all sorts of info and facts to help you understand our life with Peter.
And the blog. You have to do a blog. 
Well, I don't need to, but I want to.

Every story in Unique is, well, unique.

I'm sure most of you know a bit about Peter. He has develops delays, an asd, learning disabilities and *something* genetic going on in the mix.
We've just not managed to quite pin down what that something is. The latest bloods, taken about 4  or 5 years ago seem to have been, well, not quite a red herring, but threw up more questions than answers.

But never fear, our new Geneticist has a few ideas. We just need to wait for more bloods to be done and sent off.

We have been involved with Unique for 27  years. 
The support we've had is brilliant. I'm not made to feel I don't fit in because we don't have an official diagnosis. There are others who have been in the same situation as us who get a diagnosis when their child is an adult, so I live in hope.

(Mind you, someone, not on the Unique fb page, but another carers group did question WHY  we were in the group. After all, she said, how can you possibly get matched up with other families. I pointed out that, yes I knew about SWAN - syndromes without a name - but back in those pre internet days, they didn't seem to have the support to give and even though I got in touch, they didn't seem so organised. So we stuck with Unique and have learned so much)

To be honest, this person has been the only negative person and even though she may have thought she was being helpful, it was a bit hurtful. I began to think we weren't as valued but other union families told me to behave. I was Part of the group and most of them wanted us to stay.
I will also say, that on line,both can't always know what someone is really meaning, cos you can't hear their tune of voice.
So note to us all, be kind.

So that brings us to Ohana.
Anyone who has watched Lilo and Stitch will know about Ohana.
Ohana means family.
And family means no one gets left behind or forgotten.
It does not need to be blood family. It can be like Unique, a group of people who are together to support each other.
New members start off asking questions, wondering if life will ever be the same again. (Often that's a no. But it'll be different)
Them you get to know other members. They could stay near you, so you have that connection.
Or their child, young person, adult has some things similar to your child.
Or you find that you have a similar way of coping with things, the same black sense of humour, so you chat more.
Then you find that it's not just you unique child you talk about, but the rest of your family.
Some of the people in the group have helped me when my parents were ill and then died. 
Sometimes, we plan to run off to an island, with supplies, but the realise that our offspring and spouses would get to the island before us and form a welcoming committee!!
Bang goes THAT quiet weekend!!
The support and friendship is what we really need.
Sue, one of the mum's I have met, asks just how Cargill go to meet someone for a cuppa.
Well, Aberdeen to meet her and Sophie, but we nearly met a family at Disney in Paris.(didn't quite work out, they were travelling to the park from the airport as we were travelling to the airport!!)

So it really is ohana. 
Support, friendships and a cuppa.
It's always good