Emily Rapp in the New York Times:
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.