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.

3 comments:

  1. This may sound like a silly question-

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

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

    ReplyDelete
  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..

    ReplyDelete

ANONYMOUS COMMENTS WILL NOT BE POSTED!
please use either your real name or a pseudonym.