When Ben and Daphne Fischli’s third child, Benson John, was born on August 13, no one guessed he’d live only twelve days. Born with a rare and deadly heart condition, he looked perfectly healthy on the outside, and seemed to be a normal baby for his first five days. But then he started to have trouble breathing, and was rushed to Albany for surgery on August 18. He died there a week later. His short life touched all of us who know his parents; now, they have agreed to share some of their deepest thoughts and moments with you. Their fear of death was strong, but so was their faith.
Daphne: Our little boy was born on August 13, 2006 at 8:00 AM. Ben and I were full of joy and relief after his safe arrival. For a short while during labor, his heart rate dipped alarmingly, and his little life seemed in danger. And when he finally arrived, after much pain and prayer, the doctors found his umbilical cord wrapped three times around him. His whole body was blue. But thanks to God, he began to cry lustily as Ben cut the cord. We named him Benson, after his Dad, and John, in memory of my grandparent’s only son, stillborn in 1953. Also because the name John means “God’s gracious gift,” which is what we felt he is. He weighed 6 pounds and 6 ounces, and was 20¼ inches long. From the very beginning, he had a strong suck, and nursed well shortly after his delivery.
Ben: Our two other children, Janna and Bryan, came down with Daphne’s Dad to see Benson within hours of his arrival. Janna was enthralled to see her new baby brother but Bryan was more interested in me, and in the fish tank in the waiting room. We brought Benson home three days later, and at that point he still seemed to be doing very well. In fact, we were told at discharge that he was “perfect” – not a blemish, only a little jaundice.
Daphne: Benson and I had two beautiful days at home before he got sick. I remember the second afternoon especially: it was warm, clear and sunny, and I pushed him outdoors to our garden. I picked some ripe tomatoes and enjoyed the view of the distant Catskills: blue mountains capped with white, puffy clouds. That evening our kids held him, and we all sang our favorite lullabies to him. But already then he was no longer eating well, and both Ben and I noted that his breathing seemed a little fast, and shallow.
Ben: We called our doctor’s office the next day and they sent a visiting nurse out to see our baby. She was also concerned about his breathing and arranged for him to be seen by our doctor the same afternoon. By then he looked really sick: he was breathing about 100 times a minute, and his skin was cool and mottled.
Daphne: About an hour before I took him to the doctor, I had tried to nurse him but he only choked and spluttered and panted. That was when I first began to really worry. I put a few things together in a bag and then I stopped to say a short prayer. I asked God to help me stay calm because I felt that things were getting out of control and I was beginning to panic. I started to cry and I held my little boy tight against myself while I prayed. We were in the doctor’s office for about two hours. They got a chest X-ray and then they called a specialist at Albany Medical Center. I was trying to nurse him in a back room when they came to tell me that an ambulance was already on the way to take him up there. That was too much. I broke down just at the thought of parting with him, even though they assured me that the hospital was the best place for him – that he would be in good hands and that he would probably be home in a few days. At that point they still thought it was pneumonia, or fluid on the lungs, so they drew some blood and gave him two antibiotic injections, and started oxygen.
Ben: I had come home that day to have lunch with Daphne and the baby, and before I headed back to work I had kissed them both good-bye. I never dreamed that the next time I’d see them we’d be on our way to a hospital! What had happened to my little son, who had been doing so well?
Daphne: We arrived at AMC around 7:30 PM and went right up the Neonatal Intensive Care Unit [NICU] on the seventh floor. Benson had arrived ahead of us and was already being admitted to the nursery, so we couldn’t see him right away. When we finally were allowed in, we found him under a warmer, naked apart from a disposable diaper, with wiring and IV tubing attached. I badly wanted to hold him but was told I couldn’t. That was very hard because he looked so uncomfortable and exposed. There was an oxygen hood over his head and all we could do was hold his hands and cry and talk to him.
Ben: Right away the doctors in Albany were worried about Benson’s heart. They ordered an echocardiogram and then we were ushered into a conference room. We were told that our son was very sick – that he had “major” heart problems – that although they could keep him alive for a few days with IV medication, he could not survive long without surgery. My heart sank into my shoes and my ears started ringing. The doctors started to draw a diagram of all the many things that were wrong with him but it seemed much too complicated for us to take in. We just sat there, stunned. Then our pastor was suddenly there in the waiting room with us, and he read to us from Psalm 139:
“For you formed my inward parts; you covered me in my mother’s womb. I will praise you, for I am fearfully and wonderfully made; marvelous are your works. My frame was not hidden from you when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in your book they all were written, the days fashioned for me, when as yet there were none of them.”
After hearing these words we felt a sense of peace. We knew that God had something in mind for our little boy, even if we still needed to pray for the strength and courage to face whatever it was.
Daphne: When we went back into the NICU, we felt completely helpless and powerless. We knew there was nothing we could do to save our son. So we prayed while his strong little hands held on tightly to our fingers and he sucked steadily on his pacifier. My legs were aching and my knees were weak but my heart ached most of all. The tears just wouldn’t stop. How I longed to pick up my son and hold and comfort him! But at that same time I also felt the need to forget my own grief and focus on being there for my son – to be strong in prayer for him, and to look to God for help. That night I dreamed that there was a very bright angel, all in white, standing right next to our bed. It did not have a face but stood there as if watching over us. As I slowly came out of this dream I became very fearful and then suddenly the angel was gone. I was so afraid that I woke Ben up to tell him all about it. He comforted me, telling me that God was taking care of us by sending his angels, and that we should not be afraid of them.
Ben and Daphne: The night before Benson’s big surgery we had a special service for him right in the NICU. We wanted his little life to be given over to God, and for him to receive the blessing of the Church. So we met at 8:00 pm with all four grandparents, our pastor and his wife, and our doctor, and we all stood around his bassinet. Benson slept while the nurse wrapped him up and taped all his little wires together and laid him in Daphne’s arms. There was a powerful feeling of peace and unity among us as we read from the Bible and then prayed. As hard as it was to admit, we felt deep down within us that we were saying a final good-bye to our son. The tears poured down our faces – and of the others – as we sang around him.
It was from this moment on that we began to feel that we needed to lay the life of our dearly beloved son back into God’s hands after all the months of waiting, and just a few days with us. We felt that if God really wanted our son to be healed he would allow it, but that if he wanted his little life back then we should not try and prevent this. We felt this deeply, and with a powerful feeling of peace. It became clear to us that this should be our attitude to every child we are given. As parents we are given these children to love and care for only as long as they are here on earth. But they will each return to God in their own time, once their task has been completed. For the first time, we saw Benson as a messenger from God, pointing us upward in all of our need. And we felt that God had had his hand in everything, from the very beginning.
We were told that Benson’s surgery would take seven or eight hours, but it took eleven. At first it went well but then they found more holes in his heart than they had first expected, and even when everything was repaired his heart was too weak to work on its own. So they put him on a life support machine, and the plan was for him to “rest” on this machine for a few days.
The final few days of his life are still a blur to us, almost too hard to think of and to write about. Our son had a second last-ditch surgery on August 25, but still could not be weaned off the machine that had by now taken over the function of both his heart and his lungs. That same afternoon he was disconnected from life support, and died in Daphne’s arms, surrounded by a loving circle of parents and grandparents, pastors and doctors and friends. He lived only half an hour on his own, but during that short time he opened his eyes slightly and seemed to smile at us, though heavily sedated.
Deciding to let him go back to God caused us heart-wrenching agony, but we were sure – then and now – that it was the right thing to do. In those hours we were surrounded by unseen spirits, and carried by powers far beyond our own. Never once did we feel anger toward God, or question why this happened to us. In fact, Benson’s death seemed to draw us closer to God, and to each other.
Now it is a month since we buried him – since our entire community of 400 brothers and sisters and children walked down the hill, following Ben with the little white coffin, and laid him to rest under a mound of earth and pine branches and roses. Our pain and grief are at times unbearable, and tears are never far away, but at the same time we shake our heads and look knowingly at one another when people – well-meaning, of course – sympathize with our “loss.” Of course it is a loss, and a hard one, and yet through it all we have also gained much; a sense of deep peace, of inner reconciliation, even satisfaction at a life well-lived and a race well run, no matter how short.
And even though it’s only October, we can’t help but think about the Christmas to come, when we will once again experience the meaning of the angel’s message to Mary: “Fear not, for I bring you tidings of JOY.” We can’t help but think of Jesus, alone and cold and helpless in a manger, and of his mother, who had to bear it all without knowing why – a handmaiden of the Lord, who accepted everything patiently and quietly, and whose quiet acceptance and submission bore fruit for all of mankind.
Thoughts like these comfort and strengthen us, and we trust they will comfort and strengthen you, too.
Ben and Daphne would be happy to share their experiences with other parents who have lost a child, or to support other parents in need. Contact Plough at firstname.lastname@example.org to get in touch with them.