Thank you for your piece, I empathise with your comments Nannyah and would offer a few thoughts from my recent experiences, with a different condition. Do not despair. Do not aim for the unachievable. Look to very close friends for initial emotional support, they can be a real comfort.
Once the initial shock recedes you will need specific support to find reliable information about the condition. The amount of information on Google is immense. It can be overwhelming - so many results will give worse case scenarios or will be unfathomably technical. Ask your GP to point you to the right place to start your researches. Ours was most helpful and she said that by going to her we were avoiding a lot of personal stress.
There are some excellent organisations/charities for different conditions that can help. But a caveat here, do not assume that a condition specific support group or organisation will actually help you. Many will, but be wary of those that are run by people with their own agendas or are emotionally damaged themselves. Support your child, he/she'll look after your granddaughter, but may constantly turn to you for emotional support. Stay strong. There are folk on GN that will do what they can to help you too.

I truly understand many of the feelings you have expressed Nannyah

You do have to stay strong for your child but you also need someone you can talk to as well. As Granniepam said, there are those on GN who will listen to you. Hard though it may be you have taken the first step in reaching out by writing this brave and moving blog.

Thank you for your kind words ladies. Although I still have the odd 'wobble' I have come to terms with things now and my Daughter and I belong to an excellent support group for families of children who have undiagnosed genetic conditions like my Granddaughter - SWAN Uk (Syndrome Without A Name). I believe there are many Grandparents out there who would still benefit from talking with others in the same position and I am looking at forming a local group where people can meet face to face and talk about their feelings and share information.

So pleased to hear that you are moving forward and have found a support group for your family. Good luck with your plans for a local group. I'm here with tea and buns (and tissues if needed) if you need to talk grandparent to grandparent.

Thank you Granniepam xx

Great to hear you are going to a support group Granniepam I have always found them a source of information, and support, and although it is no real consolation, it makes you realise there are others there with the same problems, (sometimes greater) and ideas as to how you might not necessarily overcome these, but at least help make life a little easier. It is as well also to remember that your disabled grand-child is not the only person in the family, just the one who will need a little extra love and masses of patience.

This organisation can really help as well : http://www.cafamily.org.uk/
and I think the following extract summed up my feelings :

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Contact A Family are very good. I have written to them to see if they can offer any help with regards to me forming a local Grandparents group. My GD will be 4 this year. I gave up work some years ago to help with her care and to allow my Daughter to carry on with her part time job. Since then I have learnt so much, have met some inspiring people and now work as a volunteer helper at her SEN nursery which I love. Although I am now quite comfortable to be in 'Holland' it was not always like that and I want to help others who find themselves on this journey realise they are not alone. Apart from a local support group I also have an idea for producing a leaflet for SN Grandparents which could contain not only useful information but also list some of the feelings felt by others and how the coped as well as inspirational quotes such as Welcome To Holland. Is this something any of you would have found helpful? I am currently looking to gather information from SN grandparents such as initial first reactions, coping strategies etc., if you think you would like to help me with this Then please DM me. All information will be treated in the strictest confidence. Thank you.

susieb775 Thank you for posting that inspired piece. It must surely be relevant for many other situations we find ourselves in which are never going to change and to which we must adapt.

Sorry I got that posting wrong addressed to Grannipam it should have been for Lucy Sorry to both of you. No excuse, just trying to help.