Who among us parents of disabled children has not felt, in varying degrees and for varying lengths of time, these emotions after learning of or becoming aware of our child's disability: guilt — What did I do wrong? a sense of injustice — Why us? rebellion — If You were truly there, surely You could not permit such things! helplessness — Is there really nothing we can do?
How many times have these questions risen from the deepest part of our being — questions we perhaps could not or did not know how to speak aloud to anyone else, because the pain was too great.
When pain arrives so suddenly, without warning, when we never imagined it could happen to us (These things happen to other people!); when we had no time to prepare; often when we were looking forward with joy to a happy event; then everything goes dark. Night falls. We enter the tunnel of despair. Around us, a strange conspiracy of silence seems to form. Out of respect, people say; out of fear of causing more pain. To the deep sense of injustice that strikes us is added the feeling of being abandoned by everyone. Or we find ourselves surrounded by what I call "Job's friends" — those who want to be close to us, but who are too caught up in their own schemes, their own concerns: "You should... if I were in your place... how can you not understand that you must accept it... that's life, you have to make peace with it... it happened to you, it could have happened to me..."
Words spoken with good intentions, but they cannot reach our heart, which weeps precisely because it cannot react, cannot make peace, cannot accept, cannot love — held captive by a trial it refuses and wishes to push away from itself.
But life goes on, and we must forge ahead. The disabled child and everyone in the family require care, support, work, sacrifice.
Day after day, with our hearts shattered and grief upon us, we continue, we perform our duties but without life, without inner peace. Throughout the day, often during sleepless nights, cries for help rise from the depths of our hearts to the Lord — that God we know to be good and close to those who suffer, and whom we now feel distant, silent, mysterious: "Why have You abandoned us? Why won't You come to explain, to heal, to console?"
But faced with God's silence and lack of answer, some parents think, perhaps too quickly, that the door is closed there too, that even He cannot come to our aid.
Other parents continue to call out to Him, hoping or believing that He cannot fail to hear their cry. God is equally close to both; He makes no distinctions when faced with those who suffer. To reveal His answer, though, He needs only people willing to become a "neighbor," to take responsibility, to care for others. Without advice, judgment, or commentary.
This is not easy or simple. As I said before, people may fear intruding; they don't know how to help, they feel uncomfortable with certain reactions, difficult behaviors, complex situations. Yet only through such people can God's answer be "revealed" so that "His works might be made manifest in him." His miracles happen now only at this price: that the healthy, those who are well, those who have time, those who are not crushed by every kind of suffering, become "neighbors" to all those they encounter on their path who need help of every kind.
Parents of a disabled child rarely can face such a difficult trial alone; they need help; they must be able to find on their hard path people capable of sharing their fears, their confusion, their anger, their sense of frustration and powerlessness. Only if they find "companions on the journey" will they regain strength and courage. Only then, together with others, will they be able to help their child grow in fullness; only then will their child become for them a source of joy and pride, despite his or her disabilities.
If they remain alone, it will be difficult for their "mourning to transform into joy," for their "burden to become light."
May we all know how to answer this calling with renewed courage and faithfulness, with gestures of humble, concrete, and creative generosity.
- Mariangela Bertolini, 1994