hard to cope with this latest news of grandchildren

I'm so sorry grannygranby, my sympathy. Apologies if you know this but Contact-A-Family (contact.org.uk) is a good source of support and information and will be aware of any local groups should they be helpful. It's more than difficult being at a distance, your son and daughter in law are coping in their own way, they will know how much they mean to you and how much you would like to help. It sounds as if you're doing exactly the right thing and yes, of course you will think of their situation constantly. Different I know but we're supporting our goddaughter in a caring role, they are 250 miles away. Our goddaughter says it helps enormously to know she can just share how things are, to have someone listen without judgement and laugh with her when she can. It never feels enough to me but she does truly value knowing we are here and are supporting her from a distance. I'm sure it will be the same for your family.

Like other posters I can only sympathise with your problems. Are there any on-line forums for this condition? If there are they will have others like your family battling this condition. They will be able to suggest ways to help and cope with things and just having support from people who know what they are going through can help, for you as well as them. I hope you get some answers.

My goodness what a whole lot of problems to throw at a young family I truly feel for you and for them I m sure you feel quite helpless I agree with others, keep on as you are, trying to keep spirits up, and offering what help you can even if it means a bit of travel
Is there a support group for family ( maybe online) that you could join to give you more helpful advise I have found support groups give such valuable tips and ideas that drs and the medical world may not have considered I m sure there will be one
All I can say is good luck to you all and hope things will improve at least with the little ones surgery ?

I'm very sorry about your grandchildren - it must be very hard for you.

Your son and DIL have obviously found a way to cope with their very difficult situation by staying positive - and I'm sure they are facing reality.

Maybe you could contact Muscular Dystrophy UK to gain further insight and help you with your own anxieties. Wishing you well.

Muscular Dystrophy UK

This is so sad and such a worry fir them and fir you. If they are upbeat about it let them because it’s better to be glass half full than the opposite. There’s time enough fir sadness.
I know something about scoliosis and the treatment /surgery is usually very successful.
You may not live close but you could perhaps find somewhere nearby and stay a few days every so often If you feel they would like this.
Let them be positive while they can, I wish them and you, well.

Like others I can only ineffectually sympathise.

grannygranby, just carry on being there for them, remain positive (even if you don't feel it) and encourage them to access any and every form of help available locally to them. Just being available for a chat on the phone helps immensely.

If they bring up the subject of their health concerns, then discuss it. If they don't, have the normal family chats, as it can be quite depressing if others make your condition the subject of every single conversation - or if they start to treat you differently because of it.

I am sorry I have no useful advice but wanted to send you sympathy,strength and virtual hugs.x

Sorry, MD

I have no advice, being ignorant of MS, but have a virtual hug. I hope you get some useful replies.

I have no helpful advice but send you much sympathy, how heartbreaking for you all