A Heavy Burden

When the eye doctor told us our son Tomaso had cataracts, I understood, suddenly, that biblical passage about the blessing withheld from the breast that never nursed a child.
All the joy I had felt nursing Sara five years earlier, and now Tomaso, turned in an instant into a blade that pierced me. I found myself comparing the moment I first held Sara—when I had naturally thought her eyes would see for me too—with the moment I held Tomaso and could not stop crying because I could not form that same thought for him. I had blamed postpartum depression, but now, in the ophthalmologist's office, I understood it had been something else: a strange foreknowledge.
Before we married, the tests had been reassuring. The chances of passing on my condition were remote. But the fear had never left me. We had already decided to adopt when, during the Friuli earthquake, my resistance collapsed and I became pregnant. A pregnancy I had to defend from the start. The first thing the doctor said was that given my condition, I could abort without difficulty.

Dear little Sara, I didn't know you yet but I loved you at once, along with your father. The pregnancy was difficult from the sixth month on, but when you were born, the joy was so great I forgot that entire period. Your father had taken the childbirth class with me and learned to do all those small things a newborn needs—things I couldn't do because I couldn't see. He bathed you for the first time because I was terrified of breaking something so fragile. He cleaned your eyes, your nose, your ears, dressed your umbilical cord, trimmed those delicate fingernails.
Then you asked for a little brother, and it seemed right to us to make our family larger. Your eyes were healthy, and that reassured us. So Tomaso came into the world. This second pregnancy was hard on me too, confining me to bed for months, between home and hospital. Tomaso arrived early, and the doctors advised me not to become pregnant again for at least two years.

I gave birth on the same day our cat had kittens. When we brought you home, dear Tomaso, your sister was thrilled to have you, but she noted that the cat had done better—three kittens to our two.
You were tiny but grew quickly. The pediatrician kept saying all newborns prefer to lie on their stomachs, but you were always on yours. You learned to turn over very early, and even in the carriage on walks you stayed that way. You learned early too to throw your bib over your face when you weren't on your belly. No one knew it, but when you were three or four months old, I already knew in my heart that your eyes weren't working properly. I fought against that thought and said nothing to anyone, and barely admitted it to myself—as if silence could push away a reality I couldn't accept, wouldn't accept. After all, though I married your father for love, as a girl I had made myself a promise: never fall in love with a blind man, never risk giving birth to children who might suffer as I had suffered through all those years in boarding school.
Then Lidia, a friend finishing her medical degree, found the courage to tell me not to wait until your six-month checkup. Your father had already begun to see, in a certain light, a cloudiness in your eyes that troubled him. He didn't have the heart to tell me, but he welcomed Lidia's advice with relief, because it meant he wouldn't have to worry me further.
The ophthalmologist confirmed it. Bilateral nuclear cataracts.
You were practically blind, and you would need surgery soon—to let light reach your retinas during their critical development. I felt myself dying. Suddenly, marrying and having children seemed like an act of terrible selfishness.

I fell into despair. Fortunately, the pediatrician called to push us to decide quickly where to have you operated on. He offered options; we only had to choose. But I wanted only to die. Nothing mattered anymore. I tried to pray but couldn't. God had become something enormous looming over me, and I felt he wanted to crush me—to punish that stupid girl who had rejected the advice of a Mme. Wolfe, who at a youth conference of the Apostolic Movement of the Blind had urged all us blind girls to sublimate our sexuality.

I tried to pray but couldn't. God had become something enormous looming over me, and I felt he wanted to crush me

I tried to pray but couldn't. God had become something enormous looming over me, and I felt he wanted to crush me
I had gotten terrible stomach pains that day and decided on the spot to ignore her advice. And now I was paying. Worse, I was making you, Tomaso, pay for my rebellion. How alone I was! I even rejected your father, blaming him for insisting on marrying me at all costs—a way of unloading at least some of my bitterness onto him.
My parents were to blame too. If they hadn't brought me into the world, they wouldn't have put me in the position to bring you into it. I begged your forgiveness while, like an automaton, I met your physical needs. I was almost relieved when the broken heating system nearly overwhelmed us one night—at least that might have ended it all.
When another pediatrician told me your eyes were perfectly normal and that all children your age don't focus—reproaching me for inventing absurd fears—I knew I was dealing with someone lazy and ignorant. But for a moment I almost believed him, clinging to the hope that the ophthalmologist had been wrong.
Then reason prevailed, and we chose the surgeon. I began to pray again, with help from two blind women from M.A.C. (the Apostolic Movement of the Blind) in that city who took care of me and you while your father stayed home—working and looking after Sara, filling in for me as best he could. I could pray with them because they lived with visual impairment as I did, and could understand. In that hospital ward, I began to grasp something of the meaning of your suffering and mine. Everyone who came into contact with us—doctors, nurses—became gentler. It was there we met Gabriella, a twenty-year-old girl losing her sight. She was a childcare worker, and being with you, she relearned that there was so much she could still do: textured feeding bottles existed, and much of what we do by sight can be done by touch. That's where Gabriella's recovery began. Today she's an excellent teacher of other blind people.
Father Peraz from M.A.C. visited me, bringing my former teacher with him. I don't remember much of what we discussed, but I remember they didn't give me grand lectures on faith. Their presence was almost silent—pure listening to my rage, my despair. Only once did my former teacher scold me for using the word "misfortune," explaining that it means "without grace," "outside of Grace," and that we must surrender if we want to understand the signs of Grace, signs that sometimes escape us.

Together we carry a very heavy burden: our children will have to face the ordeal that you and I have already endured

Together we carry a very heavy burden: our children will have to face the ordeal that you and I have already endured
When we came home from the hospital, it was the parents of other blind children who stood by us, not our relatives. The year before, your father and I had run an information course for parents of blind children through M.A.C. in our city. After many meetings, we had stepped aside, thinking it was time for those parents to continue meeting on their own if they truly wanted to. They asked us more than once to organize them again, but we didn't think it was right to do so.
One of those mothers shook me when she said we were now "one of them," and that as specialized teachers with organizational skills and specific knowledge, we had to serve again. From that moment on, there was no more time for self-pity, because we became among the founders of A.N.Fa.Mi.V. (the National Association of Families of Children with Vision Problems).
One mother in particular came to my aid—the mother of a teenage girl with spastic tetraplegia and severe visual impairment. Every day she brought her to me so I could teach her to read Braille with that one index finger on her right hand she could barely control. While I worked with Barbara, she took Tomaso and Sara out to the playground, immersing them among noisy, laughing children—states of mind and expressions that were rare in our home. Your father and I, meanwhile, observed strict sexual abstinence, waiting to finish the nursing period before finding a safe contraceptive method. This had gone on since the third month of my pregnancy, when I had to have a cervical cerclage to prevent premature labor. When I sensed some tension in him, I broke that abstinence, convinced I was about to menstruate. Instead it was ovulation, and I became pregnant immediately. Tomaso's second surgery preceded my cerclage by just days.
It wasn't an easy time, but by then I had made peace with God and entrusted myself to him. It wasn't easy because many people—especially some of our closest relatives—insisted I should abort. My gynecologist wanted it too because too little time had passed since the last pregnancy, and besides, given the son I already had.

It was the parents of other blind children, not our relatives, who stood by us

It was the parents of other blind children, not our relatives, who stood by us
Your father and I, dear Mariano, defended you at once from everyone, with help from Don Domenico, our parish priest, who immediately placed a family next to us—one that already had five children. And you brought them luck: your friend Emanuele arrived soon after. Don Domenico, who is your godfather today, helped us ask as little as possible from relatives who weren't ready then but loved you immediately when you were born. Even those who didn't know you existed from conception—who thought you would begin to exist much later—told me that if I brought you into the world knowing my condition was hereditary, you would someday blame me for it.
For all the love I felt, I knew this wouldn't happen, though there was always the risk that one day you might say something about it, as I suppose all children do at some point.
Despite the cerclage, dear Mariano, you weren't willing to wait for the right time to be born. I felt guilty, as if my body were rejecting you. Once—and only once—I hoped something irreversible would happen so I could go back to Tomaso and Sara quickly, and spare you a life as a visually impaired person. It lasted only a few hours, followed by the decision to leave that large specialized hospital where I felt they weren't doing enough for you. I had your father take me directly to our local hospital and put myself in the care of an old classmate of his. It was a hard fight to keep you until thirty-five weeks, but with that doctor, in that ward, with your father closer, I felt safe.
Once I thought I was leaving, and that's when I decided you wouldn't be named David, as we had planned. I got angry at the Lord for not understanding that I felt indispensable to Sara and Tomaso, that I couldn't go to the afterlife with only you. I gave you to his Mother then, to Mary, daring him to have the courage to do wrong to her.
I can't call my behavior then childish, because from that moment my life changed. In giving you to her, I asked her to give me the strength to accept every inscrutable design of God.

The surgeries have made our children into young people who see, even if with their thick glasses

The surgeries have made our children into young people who see, even if with their thick glasses
So your cataract didn't throw me into despair when it appeared at two and a half. I didn't like it, but at Medjugorje I let myself be led not to ask for your healing, as your grandmother did, but to ask for the strength to accept. I learned to meditate on "The Lord knows what we need," and with my head held high I moved forward, shielding myself with everything people told me.
It wasn't easy. When you came out of surgery I fainted, and there was more to do for me than for you, but faith helped me. We weren't in the hospital where your brother had been operated on, but in that city too I received visits from M.A.C. consultants and other friends. Our room became a pleasant place to gather: the rosary was said daily (women inside, men in the hallway, almost to stay out of sight), and you were brought by nurses to sit with elderly patients who didn't want to get up. You played racing games with toy cars in the hallway with them. I met desperate mothers, and you played with their children. Together with those people we cried, played, and prayed.

Dear Paolo, we shared those moments together as we now share all the challenges of raising our three children. It was hard for me to be alone during the children's hospital stays, but I was at peace knowing you were taking wonderful care of the ones at home. Alone, I couldn't bear the wait outside the operating room—that's when you were with me, praying and crying beside me. I felt your strength, so much so that I could even allow myself to faint! You were there as much as possible, even when you were with me through pregnancy, and the third one was perhaps harder on you than on me, when I wavered between being and not being, barely aware of your presence. Together we found so much goodness in the people who helped us, and together we try now to give back at least some of what we received.
Among the most important help we had was from those who sometimes watched the children so we could have a few hours to ourselves, maybe to attend a meeting. Sometimes you've reproached me for being too much a mother and not enough a wife, but the umbilical cord is never completely cut. Even now, with Sara seventeen, Tomaso twelve, and Mariano ten and a half, I still feel them almost inside me.
The surgeries have made our children into young people who see, even with their thick glasses, even if Mariano more than Tomaso. But it's just as hard now, watching them face their legitimate rejection of their visual impairment. Though I have accepted it, I still suffer, and I know this suffering will walk with me my whole life. When Tomaso suffers, I suffer with him; together we look for ways around the problem. But then you, Paolo, lighten the mood, study with us, and within your limits bring back peace.
Together, though, we carry a very heavy burden: the possibility that our children will pass on to their own children the risk of cataracts, that they will need surgery, rehabilitation, that they will face the same ordeal you and I have lived through.
We can do nothing but raise them with calm awareness that this may happen and entrust them to the Lord to be with them in the life choices they make. We have to make them free people, but responsible ones.

- Edda Calligaris Bulligan, 1994

===FINE===