• Sun, Oct 20 - 2:30 pm ET

‘Right-To-Lifers’ Use Image Of Her Son, Mom Reclaims Image In Brave And Powerful Essay

483540_423090474429429_46095011_nI can’t imagine caring for a child with a terminal illness. I can’t imagine watching someone I love wither away and then disappear, as if he were never here. I certainly can’t imagine a group that I hate then using his image to further their own agenda. This is what one mother had to endure when the National Right To Life News made her son’s story a feature on their site. She reclaims her story – and the beautiful image of herself and her child – in an essay for Salon today.

Emily Rapp is a writer and mother. Her son Ronan died of Ty-Sachs disease in February 2013. The National Right To Life News published a story this week that referenced an op-ed she wrote about living with a child with a terminal illness. Rapp’s was a beautifully written, heartbreaking piece. I wonder how they would feel to know that Rapp would’ve have terminated the pregnancy had she known she was going to give birth to a child who would suffer so much:

I don’t write about my son’s death to contribute or even respond in kind to the sensationalist bent of some Right to Life images or publications. I do so to be clear, and so that Ronan’s memory does not have to bear attitudes with which I do not agree. Also, he did not deserve to live or die in the way he did, and had I known his fate through the appropriate prenatal test while I was carrying him, I would have terminated my pregnancy. Would this have been another loss to mourn? Yes. Very much so. That decision never would have been made without careful and agonizing thoughtfulness. No parent can make that decision for any other parent.

I have so much respect for this woman for reclaiming her experience and the image of herself and her child. She takes her story out from under the skewed, insipid lens of a site that would vilify her if they really knew her story.

To sentimentalize an experience that sent me, my family and many others over the edge of madness and then back again is to view children as conduits through which to “get spiritual,” a notion just as contrary to the true nature of parenting as asking them to be vehicles through which parents live out or attempt to fulfill their own failed dreams. Children do not exist to make their parents feel good about bringing them into the world no matter what their quality of life might be. The idea of this, or that anyone might think of it, prompts me again to use this word without equivocation: gross.

I can’t do her essay any justice by writing about it – you just have to read it. It’s frankly one of the most powerful parenting essays I have ever read. She clearly loved her child fiercely.

(photo: Author Emily Rapp/ Facebook)

You can reach this post's author, Maria Guido, on twitter.
What We're Reading:
Share This Post:
  • Cee

    Wow. Very powerful indeed!

    My sister has an abortion debate (she is pro choice *pats self*) but her class is extremely anti choice. I will have her use this essay to help her.

  • Blooming_Babies

    Stunning essay. Thank you for the write up.

  • DatNanny

    Beautiful, and so powerful.

    I have so much respect for this woman for being able to talk about her reality about the suffering her son went through, and how she would have made the choice to terminate if she’d known what his life would be. It is very rare to read these hard truths; so often you see women write about their severely special needs and terminally ill children as a daily gift; I feel it must make mothers facing the decision to terminate or in Rapp’s scenario feel even more alone. Her wish that her son had never been born into suffering shows the depth of her love and selflessness as a mother.

    I firmly believe children should not have to undergo suffering. I hope Rapp and mothers like her continue to have a voice, so that there can be a shift in certain attitudes, and that other mothers may have to go through less guilt and grief when faced with these decisions, or like Rapp, wish they’d had the option to not give their child such a short, difficult life.

  • http://www.worldclasslasik.com/lasik/choosing-best-new-york-lasik-surgeon Best Lasik Surgeon

    Stunning

  • Annona

    Obviously she’s a person of great strength. I can’t imagine what must have gone through her mind when she realized what had happened. In her shoes, I doubt I would have been able to respond with even one quarter of that grace and eloquence.

  • http://wtfihaveakid.blogspot.ca/ jendra_berri

    “To sentimentalize an experience that sent me, my family and many others over the edge of madness and then back again is to view children as conduits through which to “get spiritual,” a notion just as contrary to the true nature of parenting as asking them to be vehicles through which parents live out or attempt to fulfill their own failed dreams. Children do not exist to make their parents feel good about bringing them into the world no matter what their quality of life might be.”

    That gave me chills. There’s really nothing more to add.

  • whiteroses

    She wrote a book called “The Still Point of the Turning World” that I couldn’t get through. Not because it was poorly written but because I was crying so hard I could barely read the words. I wanted to sweep both her and her son into my arms and hug them.

    I’ve never had such a visceral reaction to a book before and I doubt I ever will again. The fact that someone is using her son as ANYTHING is hideous. He lived a short, painful life that was nevertheless filled with love, and his parents deserve to remember him and love him still without worrying that anyone will take his life and use it for their own purposes.

    • Pappy

      I agree; an excellent book and very moving. I managed to read it through but it was hard. The whole book had an elegant, savage poetry to it. I really can’t say enough good things about it. I would recommend “The Still Point of the Turning World” to anyone and everyone.

  • sallyjone

    Sorry to grammar snark, but that headline is garbled. Use active voice! “Mom reclaims image of her son used by right-to-lifers with powerful essay”. #fixedit

    • ormaisonogrande

      Actually, your correction has the passive voice in it (even if it is the newspaper-ese version of the passive), where as the original headline does not. The underlying tense in the second half of your headline “image of her son used by right to lifers” is the past simple passive. Written out in full it would be “the image of her son that was used by right to lifers”. “Was used” is passive. When you have to add “by right to lifers” to indicate who used the image, it is clear that the tense is passive.
      The original headline, on the other hand, is not passive. “Right to lifers use” is active, as is “Mom reclaims”. The actor carrying out the action is the subject, and not the object.
      In any case, there is nothing wrong with using the passive when appropriate, despite irritating messages from Word. There is something wrong with correcting someone’s writing when you don’t understand the basics of the concept you are complaining about.

    • sallyjone

      You know what? I may be wrong about the terminology, but I don’t see why that warrants such a condescending response. My point was that the headline is hard to understand, so I commented on that in what I thought was lighthearted way. I’m glad gave you an opportunity to lecture me and call me stupid though. Hope you enjoyed yourself. Jeez.

  • Mary

    She came to this conclusion after she had her son (that she would have terminated). If she had known of his illness beforehand and terminated, who’s not to say that guilt (of the termination) would have made her feel the same pain and suffering as well? You know, the what ifs and the regrets. I think either way there is suffering, pain and lose.

    • Annona

      I’m pretty sure she covers that in her essay. The fact that had she chosen to terminate, she would still have felt terrible grief. The difference being, the child would not have been born into a short miserable life of suffering. I think she’s pretty adamant about the fact that she would have been willing to bear the grief of terminating, and the onus of having done so, had she known how short and painful and terrible her child’s life was going to be.

    • AlbinoWino

      There are no what ifs. It’s a terminal illness that 100% of the time results in a slow agonizing death. She didn’t know about the baby having the condition until it was born and then had no choice but to watch him die. She would have more regrets about that but she didn’t know.

    • Pappy

      “either way there is suffering, pain and [loss].”
      My mother regrets my birth more than any of her abortions. I’m neurotypical and physically healthy. What she regrets is bringing me into such a terrible situation and subjecting me to the whims of her untreated mental illness. That guilt eats at her far more than the memory of her abortions. My “siblings” never suffered. I’m in my late twenties and still recovering from the years of abuse and neglect I was subjected to.

      Remember: If you have an abortion, you may regret it but your child never will. I regret my birth and I think my aborted “siblings” were the lucky ones.

    • Dr. Apothecary

      I am currently pregnant at 28 weeks. So far, everything says he’s healthy, and I am very relieved and grateful. If I found out tomorrow he’d have a terminal disease that would kill him before he’s 3, I’d terminate without a shred of guilt. Sorrow, yes, but not guilt. And painful though it would be, it would never compare to birthing a child and watching him suffer for three years and then die.

      I watched my mother die of cancer over many years, which was heartbreaking. I could not imagine doing the same for my child, especially if I knew before his birth that he would die a painful death, yet chose to have him anyway, condemned to a life of suffering.

  • BubbleyToes

    “Children do not exist to make their parents feel good about bringing them into the world no matter what their quality of life might be.”

    This, this, a thousand times this!

  • Polyamorous Mom

    went and read her essay, crying. :(

  • NYBondLady

    A very brave mother. So hard, on so many levels. Can’t evey bring myself to think about something like this.