hard to cope with this latest news of grandchildren

That's a terrible situation to be going through. It's great that you are so caring but at the same time, because you care so much, it's heartbreaking for you.
Is there any possibility of travelling to them and maybe staying in a local hotel so that they can count on your help for a few days?
Wishing you strength and sending love.

thanks secretsquirrell. This is something that bothers me but to be quite honest I don't think DIL would want me any closer. We are gradually gaining more trust...its a long game small steps. Since I've had a heart health scare I have become very anxious when I am not close to home. I have just sent a big box of presents to the eldest who is ten today!! I got her a tiger (child) echo dot...so she'll have her own alexa. Hope its OK. plus some great books....sent the younger one a packet of gums as unbirthday present...littlest not old enough but they have just got a kitten who loves the youngest one who is unable to sit yet but loves to sleep by her head...we have to be so grateful to new technology which can keep us so easily in daily contact with words pictures and vids...

You must be so worried. I’m not surprised you can’t stop thinking about it. Sounds like you are wonderful and supportive.
It’s a shame you live so far away from each other. Would it be possible for you to move any closer to them or to get an Airbnb near them from time to time.
My daughter has some debilitating chronic health issues and I was always worrying about her when she was struggling. I was able to move close to her which has been great. I don’t interfere in her life but can help out with practical and emotional help where needed.
Obviously moving house and area is no small task and not practical for everyone. X

Hi all I did safely manage it and though I look extremely stressed in photographs I felt as though I was calm. Locked dogs in the cellar.
It was lovely.
Son rejected the faux PS4 controllers and I was advised where to buy the Sony ones....but since then have got refunded and new ones sent...Children lovely as usual. Dogs forgave me very quickly - as they do.
THANK YOU for being there.

Gayla I think you will get more answers if you start a thread of your own this one is about grannygranby families health problems

grannygrandby I m now worrying about those poor dogs shoved in the cellar can’t you put a stairgate up so they can be kept nearby but not in the room with the little ones and if they can see you they may they won’t be so anxious

Hi my son is divorced with 3 kids, ages 3-6-10. He gets them every other weekend. He lives with us presently so we see them alot which is great. My issues our 6 year old granddaughter is very attached to me. More than her parents. We are very close and she seems to need to cuddle and hug alot. Her parents seem often busy with the 3 he old and I think she feels left out. She also says every weekend she wants to live with us and go to school in our town. She leaves to go to her mom's and calls me crying saying she wants me and wants to come back. Her mom tries to be a good mom I think so I'm not sure what is wrong. It really pulls on my heartstrings when she calls crying. We also have an RV in Arizona and she really struggles when we leave to travel. Do I put our travels on hold and be here for her during this emotional time for her? She says she hates living in 2 houses. She just wants to be with me and my husband? What do I do? I know she needs stability and I'm it.

Hi so so sorry to hear this

You ask.. What can I do to help

What not ask your son and DIL that question

They are best to answer because only they know what they are struggling most with

IS it a possibility that you move closer to them

I admire very much their positivity in this situation It will without doubt see them through and give them strength

How distressing for all of you - I send heartfelt good wishes to you all.

I can only send kind thoughts

Like everyone here , I am thinking of you and your family. My heart aches for you and I can only imagine the distress you are in . It must have been such a shock for you and I sincerely hope that in time you will begin to process what has happened. Keep posting here , lots of lovely GN's who are here to support and importantly ' listen' . ??

I've just read this thread, and your difficult family problems.
I've heard about MD and how it "runs in families",
just to echo whatothers have said - you need support from others, so keep posting on here. There's always someone here to advise and sympathise.
From my earler experience I know there are other organisations who will help - practical, financial and emotional.
keep strong!

I looked in to see how you are doing. I’m not sure if you have a partner or close friend to give extra support but also the lighter side of life. I do hope so. Keep us updated; we will give you moral suport. ☕️?

They will get there in their own time and way

I'm sure she doesn't think you are manipulative, she is most probably overwhelmed with what is happening and you might get some of the brunt of it because you are the closest to them (along with the other grandparents) I would say just be there in a non judgemental capacity. They'll get their in their own time and in their own way. You say she is engaged with online support groups so this might be enough and in my experience these groups do suggest support to others, either emotional or in the way of disability benefits. I hope you don't mind me saying this but men often find it difficult to deal with the emotional side and foster a more practical role, so try not to worry about your son too much either x

Please look after yourself though. Of course it is upsetting for the extended family too, so you need to deal with your own emotions in your own way also. I'm sure your GP would support a referral to the wellbeing service if you needed to talk about this with a trained a counsellor

Grannygranby my heart goes out to you. You are clearly a very caring, sensitive mum MIL and DG and I'm sure all the family love you loads. There have been many helpful supportive posts in response to you and I have nothing to add, it's all been said. But do share your load here. That's what we are here for. Take care of yourself too. Big hugs

Grannygranby, I can only offer you great big hugs and say, please feel free to offload on here. Lots of our kind ladies have given you helpful suggestions. Thinking of you and your family.

It will be lovely to see your DS and his family but I can't help but think it will be stressful all round, dogs included, for them to be put in the cellar, or your DDs car for the duration - they will surely make a lot of whining/barking sounds.

I know your DD wants to see her nieces but can you not suggest she has the dogs today, and see the family another time.

Well they are coming over this afternoon. The bad news is that I have two lovely dogs who are my rocks..Bess a springerdoodle - 11 and Ivy a schnoodle nearly six. The latter gets really anxious if she is separated from meand she knows where I am. I mean bonkers. Usually my daughter has them when they come over because although they are very well behaved and lovely my DIL is not dog inclusive. BUT this time my daughter is coming over as well...which is important as she needs to see the kids her neices. So I am now going to take the dogs out in the mud...because that's what its like today I will come back shower them then wash all the floors as they are constantly dirty . And take it from there. I might lock them in the cellar Ivy will cry...pretend I didn't know dogs were verboten never actually said...but you know the signs..this mean the girls are frightened a bit too..and if they aren't I can tell DIL thinks I'm being manipulative ...as she thinks it is all I care about. I might see if my daughter will let me put them in her land rover ...she has already said no..but she might relent. The extra stressful factor is my son said he cant get the disabled chair in the car so GD3 will have to lie down on floor or sofa...you can see why I cant risk dogs! Cos they are a bit over friendly and licky and then there will be uproar. So lets take them for a walk....back later wish me luck

You need help here from those experienced with muscular dystrophy and myotonic dystrophy in particular. A diagnosis of md is a huge and devastating shock and you run a whole gamut of emotions plus all sorts of practicalities that need dealing with. Please contact:-

Myotonic Dystrophy Support Group
Helpline 0808 169 1960
[email protected]

They will help and support you and all the family.

Sorry to hear about all the problems.

If they’re not already doing it, they should be claiming DLA for the children. It will greatly help with the finances, and if the mobility element is paid at the enhanced rate, they could, if they wished, lease a Motability car.

www.gov.uk/disability-living-allowance-children/how-to-claim

www.turn2us.org.uk/Benefit-guides/Disability-Living-Allowance-children/What-is-Disability-Living-Allowance

Hello All I've just caught up with your welcome messages. I did contribute to two of those Amazon tablets last year at parents request. packed with loads of apps and with very good parental controls. They love them. For this xmas DIL asked me if I could buy 2 PS4 controllers so they can paly with my son on his PS4. (game thing) ...in fact its his present..the girls have got two Lottie Dolls (one is 'reading Lottie'..I think they are great. no make up no high heels based on real children...I just hope they like them as much as I do!
Have a happy Christmas everyone XXX

Hi
I used to work with children with all kinds of special needs. You sound like just the sort of granny who will offer positive support and love all the way. Birthdays and Christmas might give you an opportunity to give a gift that is accessible...
Some of the things children I knew benefitted from included I pads with easy to access apps for fun, a rise and fall table so that they could sit at the table even if they were in a wheelchair. It sounds like talking books might be a great way for your grandchildren to access stories. I thought the Netflix idea was an excellent one! Are they I.T. users? My DDs family all use Alexa to find things for them on the internet.

Do keep posting. I’ll look out for your news.

Grannygranby I can't add anything just couldn't ignore your post ? for you hope what others have said helped .

Lovely posts on here. I too wish your wee family well.
Unconciously you've been pinning your hopes on that one granddaughter being non-disabled, but I'm disabled, since birth. Its just different. That's not to minimize the consequent extra heartaches and the extra work that your son and D-i-l will have to cope with. If it's helpful, think like this: when Rose (on strictly) was born, I'm sure her gran's friends said to her gran what dreadful news. But look what she's achieved & what a happy woman she is.Your dear grandaughter who's just been diagnosed might not regress like her elder sister - that's not in the nature of the disease for every child, and your elder grandaughter may well have autism as well as MD1 - it seems more common in children with other conditions.She will have challenges, but everyone is different and she might just show the world what someone with MD1 can really achieve. It might not happen this way, but it could - don't lose your positivity at this point although I know its being sorely tried. It must make it worse not being able to see them regularly and see them enjoying the things that they enjoy, and being their own personality no matter in how small ways. There are some brilliant suggestions for practical help on here, & wish you all well in such a challenging situation.

Grannygranby I have no experience of this condition but I couldn’t just pass by.

I think the suggestions of paying for help in one way or another is good. Maybe you could also sometimes be the ‘fun granny’ and send things such as small games or toys, post cards if you travel anywhere, things totally unconnected with MD, so they can also experience life as most other children do. Flowers for your DIL, just because, or a hamper of goodies to share. If they don’t already have it, a subscription to Netflix or similar might be enjoyable for everyone, and not expensive.

Thinking of you and wishing your wee family well. Xx