Rick Santorum, Meet My Son

[xchrom]

http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html


Emily Rapp and her son, Ronan
Photo courtesy of Emily Rapp.

This week my son turned blue, and for 30 terrifying seconds, stopped breathing. Called an "apnea seizure," this is one stage in the progression of Tay-Sachs, the genetic disease Ronan was born with and will die of, but not before he suffers from these and other kinds of seizures and is finally plunged into a completely vegetative state. Nearly two years old, he is already blind, paralyzed, and increasingly nonresponsive. I expect his death to happen this year, and this week's seizure only highlighted the fact that it could happen at any moment—while I'm at work, at the hair salon, at the grocery store. I love my son more than any person in the world and his life is of utmost value to me. I don't regret a single minute of this parenting journey, even though I wake up every morning with my heart breaking, feeling the impending dread of his imminent death. This is one set of absolute truths.

Here's another: If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. I'm so grateful that Ronan is my child. I also wish he'd never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.

That it is possible to hold this paradox as part of my daily reality points to the reductive and narrow-minded nature of Rick Santorum's assertions that prenatal testing increases the number of abortions (a this equals that equation), and for this reason, the moral viability or inherent value of these tests should be questioned. Prenatal testing provides information, a value-less act. I maintain that it is a woman’s right to choose what to do with the information that attaches value and meaning, and that this choice is—and must be—directly related to that individual’s experiences. What’s at stake here is not the issue of testing, but the issue of choice. I love Ronan, and I believe it would have been an act of love to abort him, knowing that his life would be primarily one of intense suffering, knowing that his neurologically devastated brain made true quality of life—relationships, thoughts, pleasant physical experiences—impossible.
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Here's another set of truths for the moral and ethical mix: I was born with a physical deformity in the age before the evolution of advanced ultrasound technology that may have detected it. My mom did not have a choice about terminating her pregnancy, although when I was born and she was told that I might be retarded, that I might never walk, and that given these possibilities she might want to consider institutionalizing me, she probably wished she'd had the choice. Regardless of what she may or may not have decided had she been possessed of all the information prior to my birth, regardless of the fact that none of the doctor’s warnings had any truth to them, it would have been her choice to make.

[MarianJack]

1. Unfortunately,...

...little ricky is such a callous little shit he would never grasp the pain that this young family is, and will be, going through.

He's that much of a total little shit.

PEACE!

[xchrom]

2. it's that perverse form of christianity where he thinks suffering is Good, Holy...

it's a joyless vision -- and it's a perversion of love.

[MarianJack]

4. Right, xchrom.

Sending your life on your knees saying "I'm sorry" doesn't define love for me.

PEACE!

[Jester Messiah]

3. Okay, who's chopping onions in here...

[xchrom]

5. I know, right? Nt

[Hutzpa]

6. Someone needs to send this to that fuckas campaign

fax, slow mail, e-mail what have you to Rick Frothy at the mouth so they can read this, but knowing republicans, doubt whether they'll give a shit.

[Doctor_J]

7. It is really frightening and discouraging how close we have come

to being a religious state. Especially when you consider that these "people of god" are led by such sociopaths as Limpballs, Gingrinch, and Romney

[marias23]

8. Thank you seems so inappropriate

yet appropriate to you for having the courage to write this. Perhaps in someway he will get the message. In any case, I hope there will be more children in your life - because it will be a blessing for all.

[ibecatron]

9. thanks

This is the most intelligent thing I've read all day. Thank you for sharing.

[Lost-in-FL]

10. But, but… just like rape, this could be a gift from gawd!!

[BlancheSplanchnik]

12. this woman is light years smarter, and has more humanity

than sanctimonious will EVER have, at least in this life.

He holds himself above all criticism and opaque to himself. Other lives do not exist for him.

He is a fraud and he is evil.

[rebecca_herman]

13. Some of the comments on the article disgust me

This isn't about the mother hating her child! This is about her loving her child so much that she would have let him go, given up getting to know and raise him for however long his life may be, in order to spare him the agonizing pain of dying from this condition.

[xchrom]

14. Yeah - the willful ignorance is stunning. Nt