With this fourth issue of Ombre e Luci, we arrive at Christmas—the most traditional family celebration of all. There is hardly a Christmas that doesn't see families expand with relatives, tables stretched and adorned for the occasion, kitchens bustling with preparation for the festive meal. It is beautiful, and it's right that it should be so. After all, even if many families forget, we are celebrating the 1989th birthday of an exceptional Child who came into the world and became human to change our hearts.
It is a celebration that moves us, that awakens in every person on earth a longing for tenderness, warmth, joy, and peaceful rest. Perhaps this is why we celebrate it as families, gathered around the Nativity and the table.
But there are obstacles. Oh, how many obstacles come to mind. And all of you, dear readers—young and old alike—could list far more than I can. For now, let us dwell on just one: the suffering of so many people in the world, and the particular ache that grips us on Christmas Day.
The obstacle I want to focus on concerns mothers and fathers who cannot ordinarily seat their child at table with guests because he or she has been severely affected physically, mentally, or behaviorally. It is an ordeal that returns with every family celebration and makes itself felt with particular force at Christmas. Special foods, purees, strained vegetables, grated apples, mashed bananas, fruit juice, baby food—these are normal meals for small children. But when a young person cannot chew or swallows with enormous difficulty; when each bite requires infinite time and patience, year after year... When the young person refuses to sit at table because he wants to eat alone, in the kitchen, in his own way... When, worse still, plates and glasses attract his attention irresistibly as things to throw and shatter...
Those who live through these exhausting events day after day—how can they sit down with joy at the Christmas meal? And the siblings, aunts, uncles, grandparents, cousins—how can they not feel sadness at this hardship?
Of course, one cannot generalize, because every case is different. But I want to remind you that in these situations, the worst response is to withdraw; to say, "Well, since he can't, or with him in this state, how can we possibly celebrate?"
I know from my own experience that this is not the best solution—not for mother and father, not for the siblings, not for relatives. When there is a true celebration, you must find a way for him or her to participate in it according to their abilities.
Even the Most Difficult Child Can Learn
Sometimes it takes time before you find the courage to make certain changes; but how important it is to make them, and to start now!
The first thing that needs to change is the mother's attitude. Believing that you alone are capable of feeding your difficult child is often an untruth that needs to be challenged—and it can only be overcome by trusting another person whom you teach how to do it. It may turn out that this other person is actually better at it, especially once they've learned, and precisely because they are less emotionally invested than the mother. In this way, the mother can taste a bit of freedom on some occasions, or simply be more available for others, or even just for herself.
Another vital thing is never to be certain that change is impossible. For twelve long years I was convinced that my daughter would never eat on her own. I would have sworn to it. And then one day, an educator who knew what he was doing succeeded. I am grateful to him still, because he broke through my maternal certainty.
Finally, I urge mothers—and not only mothers—never to surrender to the idea that when a child is severely handicapped, all you can do is satisfy his every wish to show your love. However human and natural this may seem, I am convinced that, like any person worthy of respect, even the most difficult child can learn—in small steps, in small doses, certainly; and after each small progress, there will always be another to work toward, especially at table. What matters is not just what is eaten, but how it is eaten.
Even if it will not be easy to seat him at table with everyone, because in some cases it is truly impossible, you can and you should, in my view, include him as much as possible in life with the other family members, if only for a few minutes: to dip his finger in the glass of sparkling wine and place it gently on his lips, saying together: "Merry Christmas to you too!"
- Mariangela Bertolini, 1989