We feel so alone
Dear Ombre e Luci,
This is our first letter to you. We have read your magazine many times thanks to Franca Aquini from Udine, and so we have become subscribers.
We are the parents of a little girl named Nella, born premature at 32 weeks of gestation. Her mother suffered from gestational preeclampsia with a coma lasting three days. The pregnancy up until then had been threatened by miscarriage and premature birth. Nella was born by emergency cesarean section weighing 1.4 kilograms, with asphyxia. She also suffered a cerebral hemorrhage, causing further damage. Various EEGs and two CT scans were performed, revealing the severely damaged state of her brain. The diagnosis: "Spastic tetraplegia with diffuse cerebral atrophy." She is now four and a half years old, having been born on February 18, 1984.
Our daughter's neurological condition remains severely compromised and shows no signs of improvement. She is followed by "Nostra Famiglia" in Pasian di Prato, Udine. She has many seizures and takes medication daily (Luminalette and Tegretol).
"Of course we were not prepared to welcome a very seriously ill daughter..."
"Of course we were not prepared to welcome a very seriously ill daughter..."Nella's birth marked a period of tremendous misfortune that struck our family. Two days before Nella was born, Argeo's brother died in a car accident—and ten days before that, Argeo's father, who had a heart condition, passed away. Before we married, we prepared carefully for marriage, attending various conferences on marriage and family life. To test ourselves and prove the worth of our beliefs, we even traveled to Lourdes, accompanying the sick with U.N.I.T.A.L.S.I. We were very enthusiastic, knowing that married life is not always easy, but we were aware of that and it did not frighten us. Of course we were not prepared to welcome a very seriously ill daughter. Perhaps fate wanted us to prove our true faith in the principles we held. Many times we slip into real moral depression and feel like giving up entirely. Life has attacked us very hard, and many times we no longer believe in it. Fortunately, our premarital preparation resurfaces within us, strengthens us, and tells us to hold on—because from great suffering comes great good. What matters is having faith in God. It may sound like utopia, but it is the truth—not born from these trials of life, but begun before marriage and maturing now through this period to reach the strength of what is deepest within us. It is a divine message, and our daughter is telling us this by putting us to the test. Certainly we have very hard periods to endure, and I, Argeo, always pray with the Bible that we must not give up. It is very important to stay united. My wife Annarita is under much greater strain, bearing not only the heavier burden of day-to-day care but the moral weight as well. She feels deeply wounded as a mother. Our friends think our life is almost normal now, that the girl is what she is and we should think of ourselves, go out and have fun, leave Nella with someone, and so on. But when those moments come, everyone is busy or has somewhere to go. We feel so alone. The Church does little to open its doors to us—in fact, these are times when it seems we don't exist at all. These are the periods when we experience the deepest disappointments.
Disappointment in a society that speaks morally but thinks only of itself.
I, Argeo, work as a railroad employee in Udine, and my wife Annarita is a homemaker. We live in a small town in Friuli with about 7,000 people, in an apartment building near the center.
Please forgive this outpouring of ours, and thank you for your attention to this letter and for bearing with the many writing errors; what matters is the feeling that comes from the heart.
We hope that you will be not shadows but a shining light in all families—not only those with someone disabled or maladjusted, but in normal, peaceful families too. We also thank you for breaking our loneliness through your magazine.
- Nella's parents
Suffering and Rage
We have been married for four years and have two children. Carlo is two years and nine months old, perfectly healthy, and Lelia is six months old, with Down syndrome.
In this letter we would like to try to tell how we lived through the birth of our daughter Lelia, a child "different" from the one we expected after nine months of pregnancy.
The event is still recent and the feelings we experienced are still very much alive in us. Yet expressing what you feel when you learn you have born a child who is "different" is not easy. There probably are no words that can perfectly capture the despair of that moment. When we were told, we felt literally frozen, and the news seemed so terrible that it almost felt impossible. Immediately, a mechanism of self-defense kicked in and made us believe this was a bad dream. But it was not: the fact was real. The baby was born, she was there, and the doctors called her "mongoloid."
Disbelief continued to linger, and then hope took over—hope that it was a simple mistake, a terrible error by the doctors. But soon this possibility too was ruled out, first by a pediatric consultation, and then definitively by the chromosomal map, which confirmed for our daughter "free trisomy 21."
"We too had become different, our thoughts fixed on her limitations, her mental delay, her difficulties"
"We too had become different, our thoughts fixed on her limitations, her mental delay, her difficulties"How was this possible? Why had nature played us this terrible trick? From that moment on, there was no more hope to cling to. And so we fell into complete apathy, a refusal to live, a loss of all motivation to go on. For us, life was over. We had become "different" too—parents "different" from everyone else. Our thoughts were fixed on one thing: Lelia and her limitations, Lelia and her mental delay, Lelia and her difficulties. When we woke in the morning, we wanted to fall back asleep, dreading the terrible reality that awaited us. The suffering was enormous and seized us so completely that we had no strength even to help each other face the moment or encourage one another to go on.
And to the suffering was added rage at what had happened. It was chance, but why us, when we had such a strong desire to live? The feeling was that life had stopped. Unable to do anything to escape the situation, we began to torment ourselves with countless questions: Why did we conceive Lelia? Why didn't we have amniocentesis? Then we moved to even more terrible conversations, because these questions revealed us to be different as people. One of us, faithful to religious convictions, would never have given up the child, whatever the condition. The other, with a more secular formation, would have had no qualms about using a law that allowed ending the life of a malformed fetus.
Such a difference, once it emerged, inevitably fractured our relationship. As days passed, each of us faced the situation on separate paths. One began to grow attached to little Lelia, who was growing in the meantime, though at a slower pace than a normal child. The other continued to keep his distance from the child who had overturned his life and whom he could not accept.
Now, however, six months later, the storm has passed. Slowly, though on different paths and at different speeds, we have emerged from that initial moment of profound despair.
Problems remain, but life has begun to pulse as before, even with this new presence that is not nearly as negative as we imagined.
Lelia is helping us move beyond ourselves and our selfishness, opening us to others.
Lelia is teaching us that what matters in a person is the heart, and children like our daughter certainly have great hearts.
Will we know how to let her guide us?
A mother
Blandine
Blandine,
we have opened
our hearts
and our hands;
like a flower
you came to us
in your smallness,
in your fragility;
be welcomed in the heart
of our family.
- Michèle and Maurice