I 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)