Monday, October 17, 2011

Dragon Mother: Living with a Tay-Sachs baby

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.


  1. This may sound like a silly question-

    can an atheist convert to Judaism, if they accept to keep the mitzvot of the Torah?

  2. Eddie: One of the Mitzvos -- in fact the first of the ten commandments -- is Anachi Hashem Elokechu.

  3. Dave, of course I know that and hold by it. I heard many years ago that according to Ramban it is not one of the TarYag mitzvot.
    Nevertheless, it is just a curious and hypothetical qn. If someone wishes to conver, with commitment to keeping Torah, shabbat etc, but they do it for reasons other than belief in Hashem..


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