Voices: A Grandmother' Grief

By Judy Mann

The phone call came about 12:30 p.m. on September 8, 2000, a lovely late summer day in the Shenandoah Valley, where my husband and I live on a farm. My husband picked up the call in the main house at the same time I picked up the phone in my office in the guesthouse.

"Mom!" The voice was so strangled I could not tell which one of my two sons was calling. Then he broke down and started to cry so hard that I found myself saying, "Who is this? What's wrong?"

"It's me, mom, Devin." And the tears overwhelmed him again as he choked out the most awful news. "Charlie's dead."

Charles Edward Mann had been born 21 months earlier, 10 weeks prematurely. He was an identical twin, and within three weeks of his birth, he was diagnosed with a condition known as periventricular leukomalasia. Devin got the diagnosis from a radiologist, and he had called me in my office in the newsroom of The Washington Post to see if I could go on the Internet to find out what this was. With the help of one of our researchers, I found out. As I sat next to her, reading the information on the screen, tears just poured out of my eyes. It is brain damage- damage to the neurons, a kind of damage that so far has not been repairable in humans. It is one of the causes of cerebral palsy. I faxed the devastating information to my son. That evening, my daughter-in-law Sophie called. She asked me to come out to Los Angeles, where they live. "I think your son could use his mother right now," she said in an unsteady voice. Sophie is British and her family lives in England. I was the closest mum. That was Wednesday. My husband drove me to the airport Friday morning. "You have to be strong for them," he warned me. "You cannot break down or fall apart. You are all they have right now. You can break down when you get back here, but not while you are with them. You've got to help them understand what this is and what they can do. They aren't going to be thinking clearly. You have to do that." I clung to his words during the five-hour flight. Yet, when I saw Devin and Sophie I wept with them. None of us could help it.

I went with them that afternoon to see a pediatrician who was also an expert on twins. Devin had talked to him earlier on the phone and I watched him weep as he listened to the news. PVL, as this condition is known, can cause minor, medium, or major disability. It affects each child differently. Even experts hesitate to predict the degree of impairment from brain scans. Their pediatrician was frank about this, and he was frank about everything else as well. He told them that the scan showed massive bilateral involvement. He had never seen a scan that showed as much damage. I saw my son and daughter-in-law's hopes for healthy children vanish in the breath of a single phrase.

So began our family's journey into a loss no one could have prepared us for. All the dreams Charlie's parents had for him had to be put away and they had to grieve for the life that poor little boy would likely have. Oliver, who survives, and Charlie would spend the first three months of their lives in the Neonatal Intensive Care Unit at Cedars Sinai, overcoming one medical crisis after another, struggling to live. Sophie and Devin went through months of worry and agony before they were finally able to bring the babies home, Charlie first and a couple of weeks later, Oliver, who had weighed a mere 2 pounds, 3 ounces, at birth and had to have a hernia repaired before he could go home.

The days after we got the news about Charlie were simply terrible. We were overwhelmed by sadness. One thing that helped me understand what Devin and Sophie were going through was that I'd had breast cancer two years before this happened. I, too, had had to face a grave loss: not just my breast, but my sense of immortality, of invulnerability. Loss and uncertainty about the future had become part of my emotional fabric. I could listen to them and help them realize that their feelings were normal. I think that helped all of us. 

We had to find out about the different kinds of care available to families with disabled children. Sophie, riddled with guilt and anxiety, had to schedule meetings with social workers and therapists. She learned quickly to write everything down because in grief, you forget things. Twenty-one months later, when Charlie died, a wise woman would tell me that for a grandmother these losses are very hard: "You grieve for your grandchild," she said, "just like your children. But you also grieve for the terrible loss your children have taken."

After I returned home, my assignment was to find out everything I could about PVL and whether anyone in the world was making any progress in treating it. I found that there was promising research being done in Mexico in reversing neuron damage. There was some hope on the horizon. We clung to that. And as the months progressed, Charlie entered into more intensive therapies. His eyesight was very poor. Devin and Sophie were told at one point he would probably be blind, another of many devastating blows.

With the hope of each new therapy and the crush of every setback, I listened and grieved. Mourn for the baby. Mourn for his parents. Keep yourself together, listen well, try to offer encouragement when it can be honest. Helping your children cope in whatever way you can lets you feel a little less powerless. Stay as informed as you can about the problems your grandchild is having. Don't butt in or second-guess. Charlie was in some form of therapy nearly every day. Sophie became an expert on different forms of therapy and she continued doing them at home. Oliver, who has mild cerebral palsy, was also in therapy, but on a much less intensive level. The babies were surrounded by caring adults and by parents who were utterly devoted to them and to making sure they were getting the best medical care possible.

Charlie threw up a lot, as did Oliver. Charlie's swallowing mechanism was affected by the PVL. Both babies had immature digestive systems, and both had trouble gaining weight. On the morning of September 8, Sophie had crept into the babies' room and gathered Oliver from his crib to take him to an early morning feeding clinic. She tried to keep Oliver quiet so he would not wake Charlie. She took him into the master bedroom to dress him and then she left. 

About 8:30 that morning, Los Angeles time, my son went in to wake up Charlie, and he found him in his crib, not breathing. He called 911 for an ambulance and immediately started to do cardiopulmonary resuscitation. It was too late. The strangled call came less than an hour later, from the hospital.

I broke down completely. Charlie was so special, so sweet, so brave-he had captured all of our hearts. For Devin and Sophie to be delivered another such shattering loss was beyond anything life should deal such sweet people. At some point, perhaps in that conversation, I said it outright: "You don't deserve this." Devin told me as best he could what had happened. Then I said the stupidest thing I've said in my life: "Do you want me to come out?"

"I don't know, Mom," he said. "I've got a dead child on my hands and I don't know what to do." I told him I would call him back.

I sat there on the floor of the guesthouse crying my heart out. I was in shock. I wasn't thinking clearly. I could not absorb what had happened, much less accept it. My husband came into the guesthouse almost immediately after he hung up the phone in the main house. I stood up and clung to him, sobbing, simply sobbing. This was too terrible for words. When I finally stopped, he said to me: "You've got to go out there right away. I want you to give me the phone number for your travel agent, I'll make the arrangements, and you start packing, but you must get out there as soon as we can get you on a plane." He said he would come out as soon as we needed him. We made the two-hour drive from the farm to National Airport and I got on a 6:00 p.m. plane to Los Angeles. At one point the flight attendant, serving beverages, asked politely how I was. "Fine, thank you," I said, automatically. Then, I said, "Actually I'm not fine."

"What's wrong," she asked kindly.

Then I choked it out: "I lost a grandchild today, a baby boy."

I got to Devin and Sophie's home around midnight their time. Devin was, mercifully, sleeping. Two friends had stayed with Sophie until I arrived. We held onto each other, joined by tears of unspeakable grief. "You came," Sophie whispered. "You came." And we went into the garden to talk, to weep together, and finally to bed. 

The days ahead were very difficult: We did not know when the coroner would release Charlie's body, Devin and Sophie had trouble deciding between burial and cremation, a decision that would force them to fully confront the horror that had happened. Sophie's mother, Sally, and her sister Anna arrived from England and they were a huge help. But none of us had ever dealt with the death of a child. A woman named Barbara in the coroner's office put me in touch with Heather Aitken, who had lost a baby, and went on to found Little Heroes, a project that helps Los Angeles families both financially and emotionally with final arrangements when they have lost a child. Heather was the lifeline who helped us with the difficult decisions. She was the wise woman who told me how hard it was on grandparents.

I am not a religious person, but I am a spiritual person. Reverend Charles, who had been a neighbor of Devin and Sophie's, came by their home to comfort them and he agreed to officiate at the memorial service. He talked about Charlie's purpose in life, why he had come to our family. He said he was an angel, he had finished his work, and God had moved him on to another purpose. For once, the questioning journalist shut down. The grieving grandmother took enormous comfort in this appreciation of Charlie. I took comfort in the nearly full church, the amazing floral arrangements, the fact that my nephew, David, who lives in Santa Cruz came down to be with us, along with his young daughter. My younger son, Jeff, who also lives in Santa Cruz came down. Devin's step-brother, Don, came down from Washington State. At a time of great sadness and loss, the next generation was there for the family, there for two of their own.

How do you mourn such a tragedy? Very slowly, I discovered. I returned to the farm to grieve not only for Charlie but for Devin and Sophie's unimaginable loss. There is no hurt like what a parent feels for a lost child or what a grandparent feels for one's own hurt child. It's a hurt that needs soothing, or else you go mad. The one consolation we can give ourselves is that Charlie never suffered the cruelties that life would likely have had for him.

It has been more than a year now, since Charlie died, and I still find myself thinking about him and sometimes weeping at unexpected times. Writing this piece brought its share of tears. We spent time with Devin and Sophie and Oliver at the end of August and Sophie and I spent private time talking, weeping, listening to each other, and I think that helped both of us. I think Charlie made us better people. I have the deepest admiration for my son and daughter-in-law and how they have coped with such courage and so much love for those babies. I take comfort in that, too. Charlie taught us about patience and about bravery. My son gave the eulogy for Charlie at his memorial service, and he said it best: He told of how a small, severely disabled child had taught an entire family about unconditional love.

This article originally appeared in Living With Grief: Loss in Later Life, Kenneth J. Doka, Editor,  © Hospice Foundation of America, 2002.