Stripping Away the Drama
October 1952. My daughter is born. I mention this date to help readers understand how different it is to have a handicapped child today, compared to thirty-three years ago.
By different, I mean the ignorance of that time—my ignorance, anyway—about certain anomalies, different conditions, different methods, and the range of help available now: radio, television, clinics, books, magazines, conferences, associations, and more.
My daughter wasn't diagnosed until she was three years old. Not through any negligence on our part, but because doctors back then simply didn't venture diagnoses in a child's early years.
When they told me "unstable restlessness," I thought it was something that would disappear entirely very soon. It didn't. For us as parents, it wasn't a great shock then—partly because of our ignorance about such things, and partly because I lived with my own parents. I wasn't alone. Then came a beautiful little brother, perfect and healthy. My daughter was three and a half by then, a lovely child, but she needed a lot of attention.
Should I explain to her what was happening to her? Should I reshape her life and ours out of fear of what might happen? For a long time, I lived with that terrible fear.
Should I explain to her what was happening to her? Should I reshape her life and ours out of fear of what might happen? For a long time, I lived with that terrible fear.I have to admit that I couldn't put into practice the sound advice that Dr. Réthoré gives us in the article « What About the Other Children? You Must at All Costs...» in Ombre e Luci. I can see now how useful it would have been, especially for her brother. As he grew, he rejected the word subnormal for his sister and always saw her as a spoiled child. Perhaps he wasn't wrong. Our whole family—parents, grandparents, aunts, and uncles—circled around her to shield her from anything that might be dangerous, but in doing so we deprived her of the independence that would have helped her so much as she got older.
Then, at sixteen, came her first epileptic seizure. I had never seen anything like it. Another blow, another handicap. The attacks came back, one after another, and each time I grew more anxious—about the present, about the future. Should I explain to her what was happening? Should I reshape our lives out of fear? For a long time, I lived with that terrible fear.
Over the years, the seizures became less frequent. I tried to live our life as normally as I could, stripping away the drama from a situation that was harming everyone. I tried to tell her the truth about her condition and what she could do to feel better—keeping her digestion regular, not being lazy about that basic function, not getting too excited, getting enough sleep. On our end, we tried to shield her from strong emotions. Simple advice, the kind a mother with no medical training can offer a daughter who is different. I confess I wept many times and asked, Why me? But the answer came through her, from God himself, because He gave me the strength and courage to do whatever I learned might help her grow. When we pray the Our Father, we always say, "Thy will be done." Reflecting deeply on that prayer, I came to understand what God's will was in giving her to me. Because she is the one who brings our family together more and more, who brings me so many friends, who makes me more open to others, who teaches me to forgive, to be simple, to say thank you, and to hope—always to hope for greater acceptance, now and in all the years to come...
As I close this testimony, I want to share something I heard from someone who has suffered greatly: «Hope is like a country road that was never there; but once people started walking on it, the road appeared.»
- A Mother, 1985
«My Stomach Hurts So Bad»
I teach a first-grade class of eighteen children. One of them is a girl with epilepsy. She's followed by a neuropsychiatrist and a speech therapist from the local health service, and she has a family that is particularly attentive and caring. Regardless, I spent the first months getting to know my students and helping them know each other. I noticed that each child formed good relationships with the others. In an atmosphere of calm and ease, a desire to help one another began to grow, along with interest in sharing their experiences and learning. Confidence in themselves and their abilities increased in every child. Even R., whose speech is sometimes unclear, feels welcomed and fully accepted by her classmates—even though they were frightened the first time she had a seizure.
To help everyone understand that each of us needs others and has so much to give to others.
To help everyone understand that each of us needs others and has so much to give to others.I cannot forget those bewildered eyes, which quickly became tender and understanding, when R.—at my gentle urging to explain to her classmates what sometimes happens to her—said, with complete naturalness:
«My stomach hurts so bad.» That one simple sentence opened the way to such a spontaneous and genuine sharing of experiences and feelings that it stripped away the drama of what had just occurred. It made everyone aware that each of us needs others and each of us has so much to give.
- Anna Gardoni Manfredi, (teacher), 1985