About a week ago, I wrote on a article that I read from Slate.com. Having never really been to this site, I have now found myself with the same sort of reaction one has to a horrible car accident … I just have to look. On the bright side, I think that any conservative blogger could find a lifetime of material on which to comment in but a few short days of perusing Slate’s archives.
Yesterday, there appeared a very emotional piece by a mother of a child with Tay-Sachs. My heart and prayers go out to this woman – I can’t even begin to imagine the daily struggles and emotional roller-coasters that she goes through. Yet there is something terribly unsettling with her story. Her opening paragraphs read:
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.
I want to try very hard to not be callous in my comment, but rather pastoral in the best sense of the word. As I stated from the beginning, this woman’s story is clearly one of great suffering.
That being said, what is the proverbial “missing piece” from this philosophy? I can think of three such pieces that are worth considering.
1. Suffering is Redemptive
There is something drastically “new” about the Christian take on suffering. If we define suffering as that gap between desire and reality (or between what we want and what we have), the ancient east and the modern west have opposite takes on how to close the gap. The ancient east suggests solving the problem by eliminating desires. According to Peter Kreeft:
We suffer because of the gap between what we want and what we have. This gap is created by our dissatisfaction, our wanting to get what we do not have or wanting to keep what we do have (e.g., life, which causes fear of death). Thus desire is the villain for Buddha, the cause of all suffering.
The modern west takes an opposite approach: we attempt to eliminate suffering by bringing what we have up to the level of what we want. This is true in both modern medicine and modern economics.
Although both work in opposite directions, the goal is the same: to eliminate suffering.
Christianity, through the Paschal mystery, takes a radically new approach: it redeems suffering and thus allows us to see it as a value in and of itself. As Christians, we are called to embrace suffering for the redemption of ourselves and of the world. I am reminded of the scene from Passion of the Christ where the Lord has hold of his cross and the soldiers ridicule him saying, “Look, he embraces his cross!”
2. God is the Author of Life – and the Soul is Eternal
It seems to me that this is an essential tenant of the Christian faith. The very first thing we learn about our nature from the Book of Genesis is that we are created. In other words, we are not our own, and nor are we each other’s. God is the author of life, and only God can decide when “it is time” (for lack of a better phrase). None of us ever wants to see an innocent child suffer to the degree that this mother has had to endure, yet even in these difficult cases, it is not our decision to make. Let us not forget, however, that the human soul is immortal. It has an existence well beyond the confines of time. Further, we know for certain that a baptized child not yet of the age of reason will be welcomed into Heaven – so whatever this child suffers here on earth, it will pale in comparison to the joy he will experience when standing for eternity face to face with the Living God.
There is actually something very laudable with the mother’s desire that “no person should suffer in this way.” While we embrace our own suffering, we also should work to a certain extent to minimize the suffering in others. Yet the line is crossed when first things fail to be kept first. The “first thing” in this case is the notion that God is the only one who takes the blessed soul from their suffering and welcomes them into eternal life.
3. God’s Ways are not Our Ways
This is so impossible to fully understand, and every one of us is guilty of crying out for justice, mercy, or some seemingly illogical combination of the two when faced with the hardest moments of our time here on earth. Few of us will experience moments as challenging as this mother’s trials, and virtually none of us will have to undergo the pain experienced by her son. Yet as hard as it is to grasp, the truth haunts us in the quiet of our hearts: as finite beings we are incapable of seeing the “whole picture.” We do not yet know everything that God has planned for both the world and for a particular individual. Only when it is all said and done, and we are granted the opportunity to “understand the whole” will we be able to find true solace in the events of this world.
What is curious about this point is that it is either a source of great consolation or bitter confusion. One either sees in the mystery of a plan not-yet-fulfilled a God who is a great architect that ever so slowly reveals His design, or one sees a tyrannical dictator who hides the truth from his subjects. It all comes down to the fundamental lens through which one sees the drama of life.
Regardless, my heart goes out to this woman. In fact, I can agree with her on not just one, but both of her points, properly understood. As such, I agree that they are no mutually exclusive. I believe with everything I am that she is telling the truth when she says, “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.” I also believe that she deeply wishes her poor innocent son would not have to endure the suffering that he has already had to go through let alone that which is to come. Moreover, I too wish that I had it in my power to save him from any more suffering in his life. In fact, I even agree that his “life” would be better if he were already in the presence of God. Nevertheless, I cannot agree that taking a life of which we are not free to take, making a choice that we are not free to make, is a viable option towards such an end. The end can never justify the means.
I have already decided to dedicate a part of my Lenten spiritual reading and preparation to both this mother and her very blessed child, and I encourage others to do the same. Through all the suffering, it is clear that his mother as an authentic love for him, and that is something that many of our “healthy” children lack so desperately.