Thanks again all. I am a member of the society above and use a couple of closed groups on Facebook - which are very good. What I meant was that I have to just read and not contribute as my DIL might want to join - then I will be visible to her. Do you see what I mean? Perhaps I'm just over worrrying. Hopefully the more she accepts her condition the more she will in time want to reach out for support. She is a very 'private' person. She will not brook any interference either. When I questioned the eldest's behaviour which suddenly changed when she was two I noticed she didn't answer to her name, I wondered whether she had a hearing problem and was given very short shrift. And my son said that DIL had walked out of a doctors surgery when a consultant wanted to test her. It upsets her very much and my son totally supports her. So until they, in their own time, want to explore more there is nothing I can do.
I do agree with you Bluebelle that at least they know what causes it and they might well be able to control the effects in time. I will keep on top of it ...and the American association www.myotonic.org/ are very informative on research. So yes there is hope. Also every person experiences it differently - probably depending on how many 'repeats' they have. I don't know how many repeats DIL or the baby has. I have asked my son but he dismissed the question. All in time perhaps. The British group are old school and produce pamphlets and I was shocked to hear that when my DIL was informed that baby had the condition she was alone in the evening, she had gone into intensive care to see baby. She asked why there were people round her cot and said the consultant was shaking when he told her that she had congenital myotonic dystrophy and handed her a leaflet to explain it! (from the charity). How thoughtless. Poor girl. She rang my son in floods of tears, too upset to get a taxi, he got the other children out of bed into car and drove to get her.
So I have to go at their pace...another thing - the baby has talipes in both feet (club feet) (most common symptom of the condition) I know in the US the baby would have casts on her feet by now, all DIL and son have been told is to massage her feet. And there is a long wait for physiotherapist. Both son and DIL think that her feet are like that because she was premature and they got twisted in the womb...no mention of club feet...
Role of grandmother ... its difficult. If I am not careful I will lose all contact with DIL as it is I have to go through son.
A few years ago when I first wondered whether GDD1 was deaf I emailed DIL's mother because they saw a lot of the children and they stayed with them etc. We had met a few times and she seemed very sensible. DIL is an only child and very close to her father. I received an email back from her father telling me not to write again as DIL's mother had trouble with her vision and couldn't see to read and write. I would have to write through him. I find him over-controlling, perhaps I'm wrong but I didn't write again. I like talking to women. Neither DIL not her mother can drive and yet her parents moved house last year even further away from them...which seems so odd. When they could have moved nearby and helped with the day-to-day, picking children up from school? People are sometimes a bit mysterious: there has been no contact between us since. (except xmas cards) I have no idea how they are about the baby. I ask my son imagining that they come and stay and look after the GDDs/ and I told my son when the baby was born that it would be a good idea for the children to go to their grandparents ...after all I had heard they had bought the bigger house to accomodate them and was told there was a room each for the girls. but that didn't happen. DIL discharged herself a day after the birth.
I have never been allowed to have the children and have never been alone with them except accompanying them when they explore my, or daughter's, house then DIL quickly follows.
Till now I thought that was the most heartbreaking thing - but as Job discovered - never think anything is the worst.
Writing about it does stop it going fruitlessly round in my head so thank you for reading.