In a 2013 interview on NPR celebrating the publication of her memoir, The Still Point of the Turning World, author Emily Rapp made two surprisingly different statements. In her book and on-the-air, Rapp said that she treasured every moment she’d had with her son Ronin, whose short life with Tay-Sachs Disease was the subject of her memoir. Indeed, her telling of Ronin’s story is vibrant, and her joy in sharing that story shines through her work. But she also stated that, while pregnant, she had been tested for Tay-Sachs with the full intention of aborting an affected fetus. Ronin had a rare form of Tay-Sachs that is not detected by the test Rapp was given, but if she had known, she said, Ronin would never have been born. When questioned on the contradiction between these statements, Rapp acknowledged that there was ambiguity in her feelings, but insisted that she could indeed treasure the memory of her time with her son and wish he had never been born. She said that she could, in fact, hold these two opposing thoughts simultaneously, and that this was “a duality that could be held”.
In the past, parents of children with special needs have been suspected of holding ambiguous feelings toward their children. Berit Brinchmann, a researcher in Sweden who interviewed parents of children with profound disabilities, stated that parents both love and hate their children. In addition, Franco Carnevale, a Canadian nursing ethicist, entitled his ethical analysis of children on home ventilator support “Daily Living with Distress and Enrichment”. But neither of them quite captured the essential nature of simultaneously holding two opposing truths. For these families, who must live each day in love with a child who has a potentially life-limiting disability, this is not only a duality that can be held; it is a duality that must be held.
As clinicians we like things to be clear cut, belonging in one box or another. We see families as either failing to cope or coping well. Those who are coping well clearly adore their children and will do anything to insure their health and success. They attend all their appointments, and eagerly embrace all new medical instructions. They champion their child in all things, though they must be careful not to expect too much lest they be labelled “in denial”. But every now and then something goes wrong. Parents might miss appointments, or decide for themselves that a medication is not working. Or they might be in need of help, and so admit to being overwhelmed by the amount of work their child requires in order to qualify for services. Consequently, these families are seen as failing to cope.
We must recognise that it is possible for a child to require too much care work for a single family to perform, and yet still be loved and valued.
The moral value assigned to each category is clear. Parents understand the advantages of coping well and make the sacrifices needed in order to remain “good parents”. They do not admit to becoming overwhelmed or exhausted or grieving, even if they are, as they might be seen as failing to cope and, by extension, be deemed inadequate parents. Admitting to feeling anger or helplessness can be signs of incompetence. In some circles, expressing frustration with a child’s disability is equated with devaluing their child. They dare not complain, lest their very love for the child become suspect.
I believe that placing parents wholly on one side or another of this duality does them a disservice. We must recognise that it is possible for a child to require too much care work for a single family to perform, and yet still be loved and valued. We must acknowledge that joy and sorrow exist side-by-side, as a child learns something new and yet remains achingly behind their peers. We must see, as Emily Rapp did, that it is possible to treasure a child’s existence while simultaneously wishing that things could have been different. These are dualities that can and must be held. It is wrong to force parents to live out one truth or the other for our sense of clarity.
Featured image credit: Palace of Versailles by Peignault Laurent. CC0 Public Domain via Unsplash.