Carrying the Cross and Carrier Status
Christopher Ostertag PhD(c), Theology and Health Care Ethics, Saint Louis University
As parents of a child with a rare, terminal genetic disorder, my wife and I often think about why. Why out of all the mutations that we all carry--most without incidence--one of the mutations my wife and I carry happens to be on the same gene which corresponds to this rare, terminal genetic disorder; why our son has a disabling disorder that will probably take his life before adolescence; why there is no cure or effective treatment for this disorder. These questions are difficult to think about, but their weight is alleviated in part by knowing that our son does not himself suffer right now, and, importantly, by belief in God’s divine providence. Furthermore, as Catholics, we find comfort in knowing that our son, through his baptism, is a child of God and heir to heaven. But to deny there is sorrow and grief in his diagnosis would be far from the truth.
When we informed our families and friends of this disorder, we encountered various responses. However, one kind of response stands out: something along the lines of “God does not give us crosses we cannot carry.” Admittedly, such a reassurance did not strike either my wife or I at the time, but I recalled this response during a discussion in one of my doctoral courses in which the exhortation to “carry your cross” was offered as a response to a couple grieving upon finding themselves infertile. Like a couple learning of their infertility, my wife and I grieved at the news that there is a 25% chance that our future children will be affected by this terrible disorder. But is such an appeal a good theological response that clinicians, families, and friends can offer in the face of such news?
In this presentation, I will reflect on my own experiences as the father of a child with a rare, terminal genetic disorder to further explore the aptness of the imagery of bearing one’s cross in the face of such a diagnosis. In particular, I wish to take up the imagery of carrying one’s cross both as a parent of a child with a rare, terminal genetic disorder and as a theologian. In doing so, I will embark on a project similar to Eva Kittay in her powerful article, “The Personal is Philosophical is Political,” although I will approach this as a theologian. I hope that others may find this exercise useful in their own lives and work, especially those who themselves are faced with such a diagnosis.
When we informed our families and friends of this disorder, we encountered various responses. However, one kind of response stands out: something along the lines of “God does not give us crosses we cannot carry.” Admittedly, such a reassurance did not strike either my wife or I at the time, but I recalled this response during a discussion in one of my doctoral courses in which the exhortation to “carry your cross” was offered as a response to a couple grieving upon finding themselves infertile. Like a couple learning of their infertility, my wife and I grieved at the news that there is a 25% chance that our future children will be affected by this terrible disorder. But is such an appeal a good theological response that clinicians, families, and friends can offer in the face of such news?
In this presentation, I will reflect on my own experiences as the father of a child with a rare, terminal genetic disorder to further explore the aptness of the imagery of bearing one’s cross in the face of such a diagnosis. In particular, I wish to take up the imagery of carrying one’s cross both as a parent of a child with a rare, terminal genetic disorder and as a theologian. In doing so, I will embark on a project similar to Eva Kittay in her powerful article, “The Personal is Philosophical is Political,” although I will approach this as a theologian. I hope that others may find this exercise useful in their own lives and work, especially those who themselves are faced with such a diagnosis.