It's hard to believe:

...The moment this realization begins to be marginal among Christians we will have begun to betray an essential part of what it is we have been given as a vocation—the work of saying, and living as if it were so, that creation is holy, that what is is good, even where it is terribly wounded, and maybe especially there...

...It is hard to put this into words, but the way they are with their son is so obviously a matter of love that, being around them, the sense you have of simple presence-in-love is a sacramental thing...

...It is the mystery which leads us to baptize infants, which tells us that God's relationship with this person is not as limited as our own...

...Still, while they accept it, they do not do so as if it were primarily a matter of accepting a burden...

...There are even people who would question whether this child's life is worth sustaining, who would argue about the comparative costs of feeding through a tube someone whose life is so unimportant in any social sense, someone who will not be productive (the measure here is apparently monetary), or who will not communicate the way book reviews and talk shows do—such a person hardly counts enough to receive the love which, thank God, he does receive, despite all of this...

...The story of Gethsemane, which tells us that the soul of the Word made flesh "was filled with dismay and dread," presents us with little consolation...

...because of the care he requires there are no ordinary vacations, and virtually no social life of the kind most of us take for granted...

...they knew what it was like...

...The believer, on the other hand, is bound to obedience to a God who is unknowable, hardly a comforting direction...

...I recently met a family whose experience with something terrible seems to me to be a sign of that difference...

...I think of some other people—an amazing woman I heard interviewed, a poor woman who has taken in children dying from AIDS...

...And their son's life is, as a result, as full and complete as it is possible for it to be...

...The grief of a believer may indeed be different in some way from the grief of a nonbeliev-er, but it is no less terrible...

...a man I know whose response to his own son's retardation is quiet dedication to the needs of other retarded people...

...Their child continues to live with them and their three other children...

...The idea of religion as consolation is sometimes accepted too eagerly by believers themselves, but it wears thin...

...The idea that our lives can be wrapped in tragedy for a reason beyond our imagining is not part of this understanding...

...OF SEVERAL MIMDS John Garvey ITS HARD TO BELIEVE NOTES FROM THE VALLEY OF DARKNESS People who are believers sometimes face a condescension, disguised as a kind of compliment, from people who are not believers...

...The attention he demands is intense...

...Many people would regard this as a life of extreme deprivation...

...The idea that it could be lived through at all fascinated her, but there is more to life than getting through it...

...I am sure they do not think of themselves as holy, or of what they do every day as a heroic vocation...

...There is something much more than acceptance here...

...It takes the form of statements which usually go something like this: "I wish I were a believer...

...The problem I have here is not so much with the condescension as with wondering what can be meant by consolation...

...Belief does lead us to see, or at least hope for, an ultimate meaning in life...

...Back to the idea of religion as something consoling: I remember a line from Simone Weil, who said somewhere that love is not consolation, it is light...

...He can respond to his parents' voices with a smile and with small sounds...

...Occasionally this may be sincerely meant, but more often it is intended to imply something else: as consoling as it may be to believe in a loving God, the nonbeliever says, 1 prefer the more bracing and courageous task of facing cruel reality...

...That might be seen as more consoling than a vision of life which sees all of our love and all of our suffering as meaningless...

...A mystery of love and divine will lies in the fact that this boy is...

...When a secular environment allows us to make this a tentative, embarrassed concern, we ought to worry about ourselves...

...Something in the Zeitgeist would tell us that a child who has suffered such a trauma should be institutionalized, so that his family can get on with their lives...

...it must be a great consolation...

...Three years ago their two-year-old son was left in the care of a relative while they went to the hospital to be with their youngest child, who was undergoing a minor surgical procedure...

...Christians see that the God of love did not answer the prayer of his son, who asked to be delivered from torment...

...It doesn't work, as the parents of children who have died know when well-meaning and stupid people tell them that their child is happy now in heaven...

...She said that most of us feared the terrible thing, and that our lives were spent in that fear...

...I have learned to live without the consolations of an illusion, lonely as life at this difficult height may be...

...They are doing what they believe they must do...

...He is five now, and requires constant attention: he needs physical therapy to keep his limbs from atrophy, and must be moved frequently to keep him from bedsores...

...But the way in which this couple has responded is remarkable...

...The little boy was playing in a fenced-in back yard when a limb fell from a tree, hit him, and caused massive brain damage...

...These people shouldn't simply move us, though of course they do: they should, finally, be our teachers...

...The worst things can and do happen, and most of us are very happy to be on the lucky side of the dreadful things that could happen— but even here, and maybe, in a way we can't bear to look at, especially here, there is something about love which we need to know, which is lifegiving and sustaining and which leads us to understand, or at least to approach, Geth-semane, and the mystery of Jesus' weeping at the death of Lazarus...

...Diane Arbus photographed grotesque people and their families and was asked why she chose such disturbing subject matter...

...The mystery these parents and their child present us with shows us something wonderful as well as terrible...

...Again, I have to say that this is very hard to put into words: but I felt, looking at him and at them, that there were depths here which are holy and a mystery of love which cannot be spoken about very well...

...this tragedy was absolutely unforeseeable...

...He is fed through a tube in his stomach...

...This is the thing most parents fear, a real nightmare...

...Belief does make a difference, though, in the way we respond to grief and dread...

...No doubt there are times when it must feel to these parents, and to those closest to them, like an overwhelming task...

...The people she photographed lived on the other side of the terrible thing...

...But a vision of life which sees meaning primarily as something we invest in a neutral reality has its own consolations, one of which is the consolation of seeing oneself in control—a limited control, but all meaning and understanding is to be found within those limits...

...You can' t raise your children in safe, concrete bunkers where nothing terrible will happen...

...He will be this way for as long as he lives, which may be quite a long time...