My son died on 18/3/22
He was 27 and had Hunters Syndrome.
We knew from age 5 that he had a life limiting condition so have been stressed and grieving pretty much since we found out.
He also had learning difficulties which made everything extra hard because he refused any medical intervention and even fought against medication which he needed to manage his pain and keep him mobile.
We gave up work and moved to a new town so we could afford a bigger house and have him live with us.
We looked after him … he needed help with everything… and when he died it was such a relief that he was out of pain and we didn’t have to deal with constant stress and anxiety but now we live with constant sadness but people don’t really understand that although he was special needs and took up all our time he was still our son and we loved him just as much as any parent loves their child.
We feel guilty that we are now free to do what we want because anything we do now is only possible because our son is dead
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You will feel like this, and I do feel there is not much , medical screening to people with learning disabilities. I don’t think people especially medical profession realise that when they have so much medication they need regular screening . Also when they tend to have so much pain anyway they don’t always complain. My son died age 47 of secondary bone cancer, no symptoms until pains in hips spine ,he died within 3 months.
Remember you gave your son the best life you could and you loved him .think of all the happy times you gave him . Perhaps it your time now, and he will be looking down at you now and smiling .
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