The joy of birth, first fears, the shock of diagnosis, the torment and comfort of others' responses, the search for understanding, the will to go on.
A mother and father tell their story of giving birth to a daughter with Down syndrome.
A joyful birth
Early Saturday morning, I feel the first contractions. Could our little one be on the way already? Quickly—a phone call, and despite the hour, friends arrive to take Nicola, our three-year-old, with them.
8:30 a.m.: Caterina is born—a miraculous arrival, welcomed with joy and emotion by her father and me.
Here she is, plump and so small in my arms. My husband leaves us alone for a moment to call our families with the news. They place Caterina beside me in a tiny crib. Minutes later, I see her stirring, restless, turning her head constantly. I alert the midwife. She thinks Caterina is cold and takes her to the incubator to warm her. I am happy, at peace. I wait for Michele to return.
Everything collapses around me
The door opens. Professor W., the pediatrician, looks at me, then asks: "Have you noticed anything unusual about the baby?"
I begin to worry, troubled. I say no. "We found her quite too relaxed right after birth. Only an hour later did we notice something was wrong."
"I examined Caterina," he says. "We find her very hypotonic. We think she needs to be admitted to the hospital as soon as possible for tests. She may have a chromosomal abnormality, and children like that are mentally handicapped, but nothing is certain yet. We need to run tests."
I enter a nightmare. I try to learn more, but the doctor simply repeats himself. Of course I agree to admit Cate-
rina. People we barely know tell us the "news" of the day—things that mean nothing to us. Visitors speak about themselves, their everyday worries. We wonder why they tell us all this while our daughter is struggling for her life. For us, she is our only horizon. Everything else has ceased to exist. Current events leave us completely unmoved.
They don't know what strength it takes to hold back the nerves, to try to smile, to speak, to "hold on" after such a psychological shock.
They don't know what strength it takes to hold back the nerves, to try to smile, to speak, to "hold on" after such a psychological shock.
Some visits, by contrast, help us let go. Certain friends know how to listen, how to be quiet. They don't complain; they encourage us. For them, Caterina exists as a person. They tell us we are capable of living with her while continuing our normal life. They help us with their inner and spiritual wealth.
Some friends want to see Caterina. After meeting her, she becomes real to them, and they understand our struggles better. Others prefer to visit me at home and send flowers. Still others tell us about families with a child who has trisomy 21, living happily. Now we understand our ignorance from before—when, untouched by this directly, we knew nothing of a world that existed right alongside ours. Knowing we are not alone, that other parents have lived through our desolation and emerge from it day after day, gives us hope for the future.
Today, when we meet parents with a handicapped child on the street, we want to say: "Us too." In fact, I've done it, and each time it leads to a very meaningful conversation.
Seeking information
When I ask, a cousin tries to gather some clear, serious documents about Caterina's condition. I desperately need explanations. Michele, for his part, has found some articles but only shows them to me after I mention mine! He hadn't understood that, despite my grief, I too—like him—needed to know. We realized we needed two different approaches to the problem: one scientific, which led us to read articles on biology and medicine, encyclopedia pages, newspaper articles, excerpts from lectures explaining the facts; the other emotional, which drove us to seek testimony from parents and people close to children labeled "abnormal." This is how we first discovered the magazine Ombre e Luci. The explanations and reading helped us all at once—they were a refuge, a shelter, a peace. I disagree with professionals who judge it unhealthy for parents to seek information by reading medical articles. Rather than criticize what parents read, they should offer well-made magazines and books to those who want them.
Eight days later, on Easter Saturday, we find our Nicola again and the house, the empty cradle, and then the life of the city—cars, shops, errands, crowds. The hospital is a world apart. I feel dazed, separated from all these people I encounter.
We send birth announcements to friends and distant family, trying to explain that Caterina is ill. Everyone responds with great tenderness. We begin a photo album for Caterina as we had done for Nicola.
Strong for her
Finally, Caterina comes home. We prepare a small celebration for her arrival, inviting some family members. We present her in church with a godmother and godfather who spoke their vows with full awareness.
That day we found the strength to read aloud—surrounded by a small gathering—the few lines that follow, and we reread them often when we are tired, physically and emotionally, by Caterina's illness and suffering.
"We couldn't believe this unexpected event at first. It seemed impossible, since nothing had prepared us for it. The first reaction is to refuse to see this reality, to deny it. You tell yourself you've had a bad dream and that everything will go back to how it was a few hours before. But soon you must face the truth. It calls everything into question—yourself, all the values you had set for yourself, all your plans.
But what are we grieving? Ourselves, certainly. That is the mistake. Our despair does not touch us, or you, but Caterina. So we must react. We must be strong for her. How this trial has strengthened the bonds between us and deepened our love for one another! We wish this love would overflow onto you and that the unity we now live around Caterina could extend into tomorrow. Let us ensure that our acceptance becomes your acceptance. And so we ask all of you to give this child the love that every child has the right to receive."
- by J. Michel and F. Buchoud, 1984
(OMBRES ET LUMIERE N. 23)
```