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.