I have often found myself approaching parents of disabled children for the first time — mothers and fathers whose small child had just received a diagnosis, or whose growing child was showing behaviors or delays that raised serious questions about their development.
I have learned, through my stumbling efforts and my mistakes, that it is not easy work. Good intentions and a kind heart are not enough. My own experience as the mother of a severely disabled daughter was often an advantage. After her death, I realized that without her presence, the task became harder still.
Because I am certain it is crucial not to leave them alone — especially when they are young parents, especially in the early days of their ordeal — I want to offer some thoughts to anyone who feels called to stand beside them.
Three attitudes seem essential to me when approaching such a meeting. First, honesty: be yourself without masks or hidden motives meant to win their favor. Say plainly who you are and why you feel moved to help.
Second, humility — not by making yourself small or incapable or unworthy, but by keeping your feet on the ground. Offer what little you can with realism and calm, prepared to receive and bear their reactions, whatever they may be, even if they are sharp or rude.
Third, discernment: the ability to look beyond their faces and words, to see with clear sight into the depths of their hearts, to sense what they cannot say — their immense, overwhelming grief.
I can offer some counsel that comes only from my own experience. Others, better prepared than I am, could say more and say it better.
To be present to parents of disabled children does not mean smothering them with our words, recounting our own lives and troubles. Don't expect them to open their hearts right away or to speak about their disabled child.
Walk alongside them by sharing in their emotions and their sorrow, expressing your presence with gentleness and sincerity.
Find the right moment to suggest an activity that might lift them out of their daily routine. Once you have earned their trust and friendship — and this takes time — offer to spend time with their child so they can have an evening, an afternoon, or a weekend free.
If they invite you to speak about your own life or struggles, do so briefly and only to help open their heart, so they can gradually share their distress, their anger, their struggle to cope with situations that seem unbearable.
If you sense it is right and necessary, offer practical help — names of schools, centers, group homes, organizations — but without pressure, leaving them time to choose and decide at their own pace. I almost forgot the most important thing. Every time I have set out "on a mission" toward someone unknown to me, someone recommended to me with words like "see if you can do something for them," I have felt poor, helpless, and alone. I have walked forward with difficulty, holding tight to Jesus's hand, asking him to speak through me and to smile through me at whoever I would meet. He has never let me down.
Mariangela Bertolini, 2008