My DIL has developed adult-onset of a form of muscular dystrophy. This was revealed after she gave birth to a severely disabled girl with the congenital form two years ago. My eldest GD was tested, as she had symptoms and she has been diagnosed with child-onset form. Now my son says the third child who at six was not tested is possibly now showing symptoms.
He is the sole breadwinner and works from (small) home. The youngest is two and half-years-old now and cannot sit; has braces for club feet and now is facing a back brace for scoliosis and possible surgeries.
I think they have coped so well so far by being very positive and very hopeful. My DIL will not accept the label of disabled for example. Not even for the car. And I understand but I think the harsh reality is now hitting them. DIL, though an exceptional caring mother is increasingly tired and not able to fully cope with executive decisions.
What can I do to help? They live too far from me for me to visit.
Perhaps some of you have weathered through and have some helpful guidance.
I have been coping by joining in with their positivity (apparent?) and telling people how happy they all are, despite all, and that is partly true but perhaps is not facing reality. The disease is progressive and affects the brain as well as the muscles. I’m sorry to land you with all this. and all in the time of covid. I can think of little else.
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. ☕️?
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!
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 can only send kind thoughts 
How distressing for all of you - I send heartfelt good wishes to you all.
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
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.
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 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.
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
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...
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.
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