Remembering–together–those we lost

Claire McCarthy, MD

Every year, Children’s Hospital Boston holds a service to honor the children who died. “A Time to Remember,” they call it.

Every year, my husband is there.

Mark is a respiratory therapist at Children’s. He works in the ICU’s, the place where the sickest children are. He knows many of the children who died, and their families.

It’s a hard service to go to, he says. The names of children who died are spoken, and the families or a staff member walk up and lay a rose in a basket. There are a lot of names. It’s one thing to hear the names, Mark says. But when the families go up, he gets a rush of memory—of each child, of how we fought to save them, of the family’s anguish, of the moment they died. It’s really painful. Mark doesn’t like crying in public, but he usually does.

We don’t like to face the fact that children die. We don’t like to think of any of our patients dying; we want to think of ourselves as people who save. Maybe this is why some doctors and nurses don’t want to go: not only is it terribly sad, but it makes them feel as if they have failed.

This misses the point.

We can’t save everybody. We are not God. Some illnesses and injuries and birth defects are beyond our power and knowledge to fix. But that doesn’t mean we are powerless; sometimes caring for someone is acknowledging we can’t fix it, and then being at their side as they die.

Families don’t come back to be angry with us for not saving their children. They come back—some from very far away—to honor and remember their children. And they come back to see us.

My third child was born with a severe disability, and died when he was a year old. We had lots of friends and family supporting us, but the people who really understood what we were living were our health care providers: the nurse and home health aide and social worker from hospice, the physical therapist from Early Intervention, the doctors.

I think it’s the same for many of the families. We were the ones who really understood what was going on. We were the ones who were at their side, fighting along with them. For the ones who lost babies, we may have been the only ones who really knew their children. We shared something tremendously profound with them. Even if we never see them again, our lives are woven inextricably together.

It’s hard to find ways to commemorate a dead child. We remember them every single day, of course. But doing it with other people can be so awkward, so hard. My family has a ritual we do at the cemetery with balloons every year on my son’s birthday, but for many people even doing something like that is too hard. Nobody knows what to say. It’s in your face that the child isn’t there, blowing out candles and getting presents. Sometimes it’s just easier not to do anything—but there is such power and comfort in ritual, in having a time and a way to say: I will never stop loving you—and I will never be the same. You meant everything.

We shared something tremendously profound with them. Even if we never see them again, our lives are woven inextricably together.

That’s what this service does. It gives us a chance to say that. It gives us a chance to honor the children who died, to acknowledge and affirm together how much they will always matter to us.

And it gives us a chance to honor the connections between us. After the ceremony there is time for mingling; families and staff look for each other, and there are reunions and hugs. As health care providers, I think we sometimes don’t see the connections we are making, or we minimize them because we are concentrating on saving. But those connections are real, and they are as much a part of caring for someone as giving the right medication or doing the right surgery. We need to remember this—not only because it’s important, but because it helps.

It also helps, Mark says, to see the families moving forward. They are still sad, of course. But as he holds the new babies, or he’s gathered up into yet another hug, or sees smiles on faces he only ever saw cry, it helps him move forward.

And so he goes back, every year. I’m going too this year—as his wife, as a doctor, as the mother of a child who died. These moments are gifts. Hard gifts, maybe. But gifts nonetheless—and ones we shouldn’t miss.

Children’s annual memorial service to remember the children, teens and adults who have touched all our lives is on Wednesday, May 25, from 6:30 to 7:30 p.m., at Harvard Medical School’s Joseph B. Martin Conference Center, 77 Avenue Louis Pasteur, Boston. Doors open at 6 p.m., with a reception to follow. All are welcome. No RSVP is necessary.