hard to cope with this latest news of grandchildren

Nannarose. I’m going to memorise that sentence. Lovely wording.

Please always feel you can post on here with anything you need to share.

I'm coming back to make a suggestion, although of course you know best how to handle it. But it might be helpful to say "I wish I was there to help, and as I can't be, please let me do (this) from afar.

grannygranby I am so sorry to read your post. Please continue to post here as there will be GNetters who can help with practical suggestions and others, like me, who want to send you a huge hug and support for everything you are facing just now. ?

Hello GrannyGranby. What a lovely gran you are, sad for your family and wanting to help. I went to school with a friend who had MD. He went on to uni, and employment, was a table tennis whiz; always smiling. We only discussed his condition once. He wanted to pack in as much as possible, be treated like anyone else apart from the odd bit of help up and down kerbs when he eventually used his wheelchair all the time. He said his parents had created a bubble of positivity around him and I think that is what your family want to do within what is possible. Therefore I’d support positivity but not too much “masking” so that your DIL can let go sometimes.
Others will have more ideas but one family I knew who had one child in a different but similar situation accepted a lot of help from fellow church goers to be able to go to different activities to best suit each child as well as companionship/support on full family outings.
As well as a cleaner, what about a gardener if possible, even if your son is earning well enough so that the can afford as many positive outings as possible and spend family time rather than grass cutting and tidying. So many trips out will be medical appointments and a huge physical and mental effort.
Going into better weather, things like a safe garden, a playhouse and suitable play equipment would be a bonus.

You are right about not all conversation being about difficulties and when you FaceTime, talk to the children about their friends, toys, outings as you have always done.

Take care of yourself too so that you can offer emotional support with energy and flop afterwards.

Others will come along with help and you can keep this thread going by commenting every couple of days to bump it. Even just to tell us you’ve been for a walk, coffee or what you are watching on tv. I will look in to find out how you are and perhaps some suggestions once I have chatted to a friend who has been on this path. ?☕️

I'd hazard a guess that your daughter-in-law's father is in a state of shock and denial at being diagnosed as the source of the illness, and not (yet) up to offering much support. That could explain the vague response from your son when you ask.
One of my friends had a son who was diagnosed with MD at the age of five. My friend was the carrier. So hard to come to terms with.

I'd say read up on any help and support that's available for them, financial and practical, and ask sooner rather than soldiering on. Something you could help with. You really do have to ask for the help you need, don't wait for it to be offered.
They should qualify for some home-care help and adaptations to the home, some of these take time to put in place so another reason to think ahead.
Our local schools put in ramps and a lift to accommodate my friend's son's wheelchair. With support he stayed in mainstream education with his friends, and was a member of the local scout troop.

I agree that online forums and Facebook groups will be a great resource for the family. It's like a club nobody wanted to join but the support and advice from families in the same circumstances will be priceless.
My niece and her husband have a son with spina bifida and they get so much support from other parents.

Thoughts and prayers for you all grannygranby xx

So very sad reading this post and sending hugs to you as I can offer no advice. Others with better knowledge will. There but for the grace of God go so many of us. ??

Wishing you and your family all the best you sound like a loving caring gran

Just can't find the words grannygranby hugs

Is there any way perhaps that you could go and stay in a holiday cottage nearby, not with them, from time to time, to help take some of the strain with one or other child?

You come across as a lovely caring person grannygranby
I think as others have said if you have the means a present of a cleaner or some kind of help and maybe a lovely relaxing massage for your daughter in law would be calming and acceptable and don’t be afraid to ask your son what you can do to help from a distance
Do you have support is there a ‘grandy’ to give you some kind time
I understand about you not going on MD support groups that your daughter in law is already on that wouldn’t be a good idea but I wondered if there may be a support group For family members
Keep popping on here I m sure you ll get lots of support

Of course post anything anytime, there is always someone here, because this covers the world , there are folk posting in the middle of the night. Not forgetting the insomniacs of course, me being one of them.
There is a lot of support from different organisations which cover the condition. Also chat room things where people can just air their worries and problems, as well as the joys. There will be joys. All good wishes x

No none of your suggestions are petty. I will offer to pay for a cleaner. Unfortunately, I am no spring chicken mid-seventies and have a damned heart condition that makes me very wary of going far alone or taking stressy risks.I feel bad about that. I think absolutely being a listening ear always there is important. It's such a tough one. Life does throw some massive wobblies and at the end of the day, we have to suck them up. (is that saying?) But I feel better for you all listening and sending me some strength. It's good.
They will find a way and, whatever that is, I will support them. Must say though that the news yesterday that the one GD that I thought unaffected might have it has floored me a bit. She has been the one helping DS with the baby...The awful thing was the eldest was normal or should say typical until she was nearing eight and then she started to regress. She was book mad since a toddler but now at nine can just manage picture books.
The school wanted her tested for autism and they have officially assessed her as autistic. Really we know it is the DM1 but that is so little known or understood and one of its symptoms can be autism, DS and DIL reluctantly accepted that as it is better that she gets special needs support that way than none at all.
And now the middle one might be headed in the same direction as she is complaining that her hands ache etc...it feels a bit like the last straw. But also this weird condition does mean that everyone has different symptoms..so perhaps hers will be more physical than mental. It is nightmare. I'm so glad you haven't all passed by as it is so difficult. I'd love to feel I could post up how things are going and keep it as positive as I can without being unreal. Thanks again XX

How dreadful for you and the family. I am afraid I know nothing much about MD but I have experience of scaring from a distance and I would say access everyone and everything that can give support. Wishing you all the best

I don’t have any experience of MS but I do know what it is like to have a genetic problem in the family, specifically one that can show itself with a later onset.

We didn’t find out before we had our children but once we knew then our children were able to decide not to have any children of their own, so I was spared your difficulties and sorrow.

I hope your DIL can see her way through to accepting some support.It is difficult to accept that it is needed, I know. The Blue Badge made an enormous difference to us, if she could just take that. Lots of people have one so it’s not being so very different.

If she is very resistant to help then buying latest technologies and equipment can be a big help. A shower means you don’t have to lift children in and out of the bath. A robot vacuum cleaner means you never have to Hoover. A takeaway two or three times a week is just being like lots of other families.

These sound petty I know compared to what might be needed but everything small thing that maintains independence is of value.

?

Gosh what a dreadful diagnosis for your family. In a way, I can understand your DiL and DS's attitude, they don't want to be seen as the 'disabled family' and have everyone telling the, how brave they are, they just want to be what they are, a normal, happy loving family who happen to have serious disabilities. I think the suggestion of paying for a cleaner, a take away, a meal out is a grand idea, it is just what we would all do for any of our children who live too far away for practical help. Meanwhile, keep posting on here, there are many people who can make sensible suggestions and may have experience of similar situations.

Such a very difficult time for you , I have no experience of MD so in no position to advise. What I can do is acknowledge your distress. , you love your GC and I can only imagine the worry you must be coping with. Life deals some nasty blows and I wish you and your family all the strength they will need. You are in a difficult position and are trying to support your son, DIL and your GC. I am thinking about you and send you my positive thoughts and ‘ hugs’ so sad you are in this position and sincerely hope you have a network of friends around to support you. ????

What a turmoil your family must go through now.

Just let them know you are there for them - help means different thing for different people.

Such hard news to bear. I have no advice apart from being there for them always.
A young woman at RDA when I volunteered there suffered from a degenerative disease. She was so upbeat and positive.
She had to break the news to her fiancé telling him to leave her. He didn't and they married on horseback because she refused to be married in a wheelchair.
They spent the next few years fundraising for the charity and being an inspiration.
By the way I recommend RDA .
though your Dil probably hates the word disability

I too sympathise, and especially at a distance, it is hard to know what to do. I do have some suggestions that grandparents have done in similar situations, but I don't know what your financial situation is, or what they would find acceptable.
I would consider offering to pay for a cleaner, a once-a -week takeaway, a season ticket to some local attraction that would be suitable, possibly hydrotherapy sessions at a suitable pool.

So sorry to hear that, grannygranby. So incredibly worrying for you. I agree with others, all you can do is try and stay cheerful for their sakes and be available to listen to their problems. Please don't brood, if you can help it, as it will do no good. Remember to look after your own well-being.

That is devastating news for your family grannygranby I can only imagine how you must feel. Its difficult to keep positive but also face facts as you say.
As GrandmaKT suggests would it be possible for you to move closer to them so you can help. Alternatively could you help financially with a cleaner, child care etc. In the meantime just be there to talk to them and support them in that way. You have my sympathy.

Oh how hard for you. Devastating that the whole family is affected.
You don't say how fit/young you are yourself. Would it be possible to move near to them to help out or do you have commitments where you are? Do they have family nearby already? I'm sure that as your DIL's condition progresses they are going to need help.

just writing it all down does help. that it is read and understood is amazing.

Ive just caught up with later posts..as for the online forums...I agree and there are good facebook closed groups for the condition but my DIL belongs to them and I feel it is her place to ask etc ...but I do read like and listen to them and would love to more openly join in but that would be an intrusion on her space. As far as I know she is not on gransnet!

thank you all so much. Just being heard helps. I think you are so right Hetty58.
Things I have found out...Muscular Dystrophy is an umbrella term for many conditions. Theirs is DM1 (Myotonic Dystrophy) but it helps to use the umbrella term because people have heard of that. DM1 stands for Dystrophia Myotonica type 1. I had certainly not heard of it till it hit my family. Curiously and cruelly it is an autosomal dominant genetic condition. DIL and her parents were tested and it was inherited from her father who has no symptoms. In fact is a healthy 70 year old. With every generation it gets worse. The younger you get it the more severe the symptoms. My DIL had no idea she had it. Adult onset starts showing symptoms in the thirties. child onset around 8 years old and congenital - well most babies die. My GS could not breathe or suck for many months.
And Riverwalk - thanks I have just sent a link to local resource to him from the MD website.
There is a massively well-funded site for this variant in California and I am heartened by the research and trials that are starting using a form of gene editing that works in mice. Human trials already started. So there is hope. they at least know what gene is affected and where it is...the gene is normal it is just that a string of coding gets overly repeated which increases by generation. We all apparently have repeats of this CTG coding on this gene on chromosome 19... but until it rockets it does no harm. It's a bit like this problem with Omricron..and how doubling can become stratospheric so fast beyond what we can imagine. Which is why we have to take that very seriously.
I certainly hope that her parents who live closer to their only daughter, are offering full help. I can't find this out. But will keep trying. There seems to be a communication breakdown. When I ask DS he somehow always evades the question.
I think you are right silverlining48. and will try and work that out. Bless you all