I find it hard to speak of my reaction when Michela's handicap came to light. That period remains very dark for me still; the feelings were too raw, too confused, and certainly irrational to anyone I met then.
I was a wounded animal: I rejected my pain by hating the healthy. I could not bear to hear some anxious mother fretting over her child's minor cold when my daughter was moving in and out of hospitals; I kept hearing what the doctor at the De Marchi University clinic had said on that terrible August 12, 1967, at the end of that awful day. Though his tone was respectful toward us, his meaning was brutal—Michela would cause us to suffer our whole lives long.
The rage at not being heard by the specialists I had consulted repeatedly about my concerns. What good had it done to worry even before we married? What had been the point of not taking even an aspirin during pregnancy?
We had fallen into the tunnel of handicap and held each other weeping. Acquaintances said "poor things." My uncle the priest told me I had been greatly tested.
He calls me to the fullness of true life... and so I offer Him my incompleteness, knowing that tomorrow I will be given to understand the meaning of my suffering and the joy of running through the infinite spaces of paradise
Some friends grew actually uncomfortable with our situation, as if they feared contagion. Where was God in all of this?
He calls me to the fullness of true life... and so I offer Him my incompleteness, knowing that tomorrow I will be given to understand the meaning of my suffering and the joy of running through the infinite spaces of paradise
Today, after twenty-six years of living with handicap, I cannot personally recover those early memories of my relationship with God. I was a wounded beast; a wound that (not from any pleasure in it) is still ready to bleed. It takes so little: a cruelty from someone near us, a convulsive seizure.
My relationship with God became that cry, that thrashing about to try to understand—but you understand nothing.
Today, though, I can say that God's providence saw to it that certain people near us, by helping us, made the present livable and the daily struggles bearable enough not to kill tomorrow's hope. This also gave us the possibility of living out therapeutic hope, and in those earlier times you could hope your daughter might approach normalcy. With time comes disillusionment, but in a way you accept it more. Looking back honestly, I did not feel God near me then—punishing me or chastising me, or indifferent to all that was falling on my head. I cannot say whether that was a blessing or something else; besides, my spiritual life then was barren, and it was only after some years that I was reborn to grace.
Even now, despite resignation, I cannot bear to see Michela suffer—I feel helpless. It is only trust in a God who for love sent His only Son, who through sharing our human condition redeemed us even unto His death on the cross—it is only this trust that moves me to pray when I stand before my daughter's pain.
I may have disappointed some because I did not then rage at God, did not demand of Him what one expects from life (life which holds within it the promise of being livable); I did not accuse the Creator of life, in His Son who in the Gospel wills that our joy be full, only to discover we are immersed in a structural injustice in the human condition. And so today, though I believe I deserve nothing, He calls me to the fullness of true life, and I offer Him my incompleteness, my fragility, knowing well that tomorrow I will be given to understand the meaning of my suffering and the joy of running—hand in hand, myself, my wife, and Michela among the infinite spaces of paradise.
In closing: have I been able to give you a sense of my feelings? Am I being true? I hope so much that I am.
- Giacomo Cosmai, 1994
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