Ben's Story

This is one of my favorite things my Mom has ever written. This is only a brief snippit of his story, since SO much more has happened since he turned three (he's twenty one now), but this story from the perspective of my young mom (I was two and a half when all this was going on) paints a beautiful, yet excruciating portrait of Ben's early life.

I watched his smile glow as the last rousing line of Happy Birthday to You was sung, and returned his proud look for approval as the three candles were blown out. An incredibly happy day; a normal, happy, childhood day, as a matter of fact. A day quite different from the one three years ago when Benjamin was born.

The unimaginable was happening right before my eyes. My baby was being whisked out of the room just moments after being presented to me on my now-shrunken belly. And he was being taken away by my husband, who is a Neonatologist, a doctor for premature and critically ill babies, but who for this delivery was to strictly be in the role of daddy. Within hours-- well actually ten long horrifying hours of deteriorating news-- we were given the news that would change our lives.

Ben had a complex genetic heart defect that had left him with basically no right side of his heart and no valve opening to get blood to the left side. He was being kept alive by a natural hole in the heart found in all newborns that eventually closes up after birth. When it would close there would no longer be any way for the blood returning from the body to get through the heart and into the lungs. In two days to two weeks we were told Ben would die. We did the unimaginable again, and took him from the hospital to spend his last hours or days in the arms of his family at home. I had to give my baby back to God.

But Ben and God had other plans. Two days and two weeks dragged on to four weeks, then six weeks and the doctors kept saying it couldn’t be much longer, they had never seen this, there was still no hope, no cure, no surgery. Life became a bizarre death vigil. Days were filled with weeping, and hopelessness and anger as I prayed that God would just take him and get the misery over with and then praying almost secretly that He would let me keep Ben, if just for a while more. I tried not to bond with him and love him too much (an impossible task to ask of myself) and yet the simple demands of his needs kept bringing us closer. The vigil, and Ben turned three months old.

And then God started to show his hand. We were scheduled for a two-week job interview in Alaska and decided to go ahead with the trip. We figured if Ben was going to die it didn’t really matter whether it was in California or Alaska, just so we were together as a family. As soon as we got out of town, the thought occurred to us to get an opinion on his prognosis from someone outside our own medical community. We had heard of a good pediatric cardiologist at the hospital where my husband was having his job interview and so a few days into the trip we got in to see him.

He looked at Ben, looked at us, and said, I know of a surgeon in Boston who is having some success with a new procedure on babies with the same heart defect as his. If you want him to look at Ben I would not wait another day. We were there within five days and Ben was operated on a few days later. Ben would live now, we were told, but not without numerous operations in the future and life with a very abnormal heart. At some point the only cure would be a transplant.

It was a rather startling thought-- Ben living after all. And life with a possibly handicapped or critically ill child became shockingly real. But you know, I had my little boy back. And God began to teach me how to love him in spite of, and because of, the unknowns of his heart. I had lived knowing what it was to let go of my worldly hold on this child. Now I could live knowing Ben was not my own, and neither was my other child, only gifts to be cherished and cared for while God allowed me that pleasure.

I could not see the reason why God so brutally prolonged his impending death those first three months. But in that time he thrived from the love and nutrition and touching at home and became strong for surgery at three months. I could hardly pray through my anger and grief, but literally hundreds of others did and through that experience were touched by a miracle of God and the miracle and thanksgiving of their own healthy children. When someone says, God works in strange ways, they weren’t kidding.

Because of Ben, I returned to the Church feeling I owed God a huge, huge debt-- and through that obligatory attendance, I discovered my own lostness and longing for Him. Because of Ben, I learned strengths within myself to live through a crisis-- not much and faze you after accepting the death of your child. And because of Ben, I learned of his powerful and loving hand that can reshape our daily lives in an instant-- and how those instants can become blessings.

Three candles on a birthday cake. Not a bad sight at all.

Make that twenty one, Mom.

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