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Dec 16 2013

They Never Screened for Tay-Sachs Until They Met Me

By at 2:42 pm

shutterstock_136518500

“Even though your husband isn’t Jewish, let’s screen you for Tay-Sachs,” my Amazonian midwife told me at my 8-week maternity visit. She, like me, and despite the nearly two-foot difference in our heights, is of Ashkenazi extraction. It made sense–why not err on the side of caution?

I wasn’t able to get a 12-week appointment with my midwife that lived with my work schedule, so I saw an obstetrician at the same practice.

“Tay-Sachs?” he muttered back to me as I tried not to fall asleep on the table. “Do we do that?”

Oh, the joys of being Jewish in small town Maine.

“You might be the first Tay-Sachs draw we’ve ever done!” he exclaimed. “I don’t even know how to add it to your lab order!” Read the rest of this entry →

Mar 7 2013

Confronting Mortality… and Savoring Life

By at 2:51 pm

surgery operating roomLast week, my mother had hip replacement surgery. I don’t come from a family of medical professionals–I come from a family of active imaginations. We quickly imagine the worst.

I cried in bed every night last week leading up to the surgery. My husband was unable to console me about something that hadn’t happened and would probably not happen. I was shaken to my bones with the idea that I might lose my mother: my mother, my nucleus, my magnetic north, my everything. Read the rest of this entry →

Mar 29 2012

Love Me, Love My Genes

By at 11:30 am

I wasn't thinking about the genetics of sperm + egg when I met my future husband.

Nobody thinks about genetics when they’re falling in love.

We sure didn’t. And when we were newly engaged, I pointedly chose not to go for the genetic testing. I was sure about our love, but I wasn’t sure our engagement could survive a genetic bombshell. He had been all-too-clear that it was really important to him to have biological children.

Read the rest of this entry →

Nov 8 2011

When Two Tay-Sachs Carriers Try to Conceive

By at 10:37 am
long and winding road

It's a long road to pregnancy for carriers of Tay-Sachs.

Jewish men and women are strongly urged to get tested for the gamut of Jewish Genetic Diseases before they attempt to have children. But what happens when your test results tell you the one thing you don’t want to hear: that both you and your partner are carriers for the same disease? A new article on Kveller chronicles the journey to pregnancy for one woman facing this unthinkable fate. She writes:

I’ve joined the ranks of women who spend too much time on fruitless internet searches, who walk the streets with “belly envy” for every pregnant woman who crosses my path. I’ve noticed that even knowing what I know, I still have yet to fully let go of a dream that this will all happen with the wave of a magic wand.

We strongly urge everyone to read her whole story on Kveller. Depressing, yes, but hopeful against all odds.

Oct 26 2011

Pitiless, Fire-breathing Loving Kindness…on Facebook?

By at 10:56 am

Photo by Alexandra Huddleston for The New York Times

Facebook is the equivalent of talking by the water-cooler for those who work at home (or agoraphobes): type in your password to see what people are talking about.  And so that’s how I know that a lot of you apparently like talking about terrible things.

“You’ve GOT to read this” was the basic gist of the eight or nine wall postings and forwards I received of Emily Rapp’s well-written piece in the New York Times. In the piece, Rapp told the story of being a “dragon mother” – that is, a mother of a fatally ill son with Tay-Sachs whose time on this earth is limited to a handful of years at best. As parents, we all know that no amount of time would be enough, and in knowing that, Rapp’s family’s fate is even more horrifically cruel.

After seeing the fifth Facebook post, I read Rapp’s piece and felt sick. It made my stomach turn with pity and fear, two emotions that I admit find singularly unpleasant. I don’t like feeling pity because I can’t shake the feeling that it implies that I somehow, even implicitly, deem myself “better” than they are, or more fortunate.  There is an element of condescension, I find, in pity, but even more so in our ability to exit from the situation we pity with such ease compared to those who are suffering. It’s like watching a TV show about famine and then turning it off, saying, “That’s awful” and going out to meet your friends for dinner. And to finish reading this piece and hug my healthy baby tighter, as though to say, “I appreciate you more after having seen someone else’s suffering.” That felt  cruel, somehow, to me.

I am not better than this woman – if anything, I am worse in so many ways — but I am indescribably more fortunate. I savor my children’s faces each morning I am with them, but do so doubly because it is not “normal” for me. Thanks to my divorce, our “normal” is different from other families. I don’t get to spend every birthday or every vacation with my boys.

And yet, despite or perhaps because of my sorrow at the seesaw of custody and my boys leaving and coming, leaving and coming, I savor them more perhaps than I would have otherwise. I was blessed with an unexpected daughter from an unexpected second marriage, and because of knowing the vast emptiness I had faced without her, I savor her more than perhaps I would have otherwise. I am proprietary about all of their time. I don’t want to waste any of it. Read the rest of this entry →

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