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In my mind, becoming a parent is an inherently hopeful process. What happens, though, when things don’t turn out as expected? Emily Rapp writes beautifully about her journey as a parent of a child with a terminal disease.

“My son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed…”

Read the rest here.


Joseph Nowinski recently wrote an article for “The Psychotherapy Networker” on the effects advances in medical technology have had on the grief process. Life continues while quality of life may dissipate and for the first time in history, death sneaks and and stays awhile before stealing away. An excerpt from the article is below:

…The grief we experience today results directly from the increasing ability of modern medicine to arrest or slow terminal illness and stave off death, even as the body and mind progressively shut down. I lost my grandfather whole, in one fell swoop; I lost my grandmother piece by piece.

The essence of the new grief is the gritty business of living with slow death…

How do you think quality of life is related to grief?

May 2019
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