The following post has parts directly quoted from the booklet "Dealing with the Feelings - Coping with your child's disability", written by Lois Tonkin with Dr Pauline Stewart.
When people talk about grief, they usually mean the loss they feel when someone dies. But other losses bring grief with them too.... People with a disability or child with a disability experience many losses, a living loss.
THE LOSS IS ONGOING
Though parents come to love the child for who they are, they may still grieve for how things might have been if it weren't for the disability and as the child grows older the difference between what might have been and the reality of what is constantly changes, therefore parents must adapt to new losses as their child grows older....
THE LOSS IS UNACKNOWLEDGED
Many parents say that the only people who understand how they feel are other parents with a child with a disability. And because other people don't acknowledge their ongoing loss, many parents don't feel supported in their struggles to deal with it.
THERE ARE CONSTANT TRIGGERS
The frequent reminders that their child will never be able to do many of the things most children of the same age can do bring a sorrow that never goes away completely. The feelings of grief that comes with having a child with a disability are always "in your face" because the reminders are always there.
SOMETIMES THE LOSS IS HARD TO PIN DOWN
Many parents talk about feeling cheated. Their child is not the healthy, normal child they expected. They find it hard to accept the disability that has robbed them of the future they hoped for, for them and their child, they grieve for what should have been...
Grief theorists call this grief Chronic Sorrow."