A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, May 22, 2013

Remembering the Children

One of my daily blog reads, Thriving - the pediatric health blog at Children's Hospital Boston - had a wonderful post about remembering the children who have been lost too soon.

I am copying it here, because I don't think I can say it any better.

A Time to Remember–Together

by Claire McCarthy on May 16, 2013

Dr. Claire McCarthy is a primary care physician and the Medical Communications Editor at Boston Children’s Hospital. Along with her blogs here on Thriving, you can find her at the Huffington Post and Boston.com. Follow her on Twitter @drClaire.


I remember the first time I saw my son’s name on his gravestone. I felt like I’d been punched in the stomach.

This was the name we had chosen for a baby, a name we expected to say as we called him to dinner, cheered him at soccer games or yelled at him for breaking curfew. We expected to see it on Christmas cards, report cards or a wedding invitation. We did not expect to see it on a gravestone.

Our names are so important, so precious to us. Every parent has a story of how they chose their child’s name; from the moment they are born, the name becomes part of them—it becomes them.

I think that’s why, if we lose our child, the name has such power over us.

Every year, Boston Children’s holds a memorial service for our patients who have died. It’s called “A Time to Remember,” and it’s really lovely: there are prayers, poems, speeches and songs. And then the name of each child who has died is said out loud as a flower is laid in a basket. Some of the names are said by family members, some are read by doctors as hospital staff lays flowers in the basket. But each name is said out loud.

It’s overwhelming. And beautiful.

This year, I asked a family if I could say their daughter’s name. They aren’t going to be there. Yes, said the father, you can. So I will say her name and remember her smile, a smile that won everyone’s heart.

That’s the thing: names are full of memories. We say a name and we remember the child learning to say it, we remember calling it across a playground, singing it in a song, writing it on forms, seeing it scrawled across a card. We hear a name and we are filled with stories, with moments that made us happy, angry, frustrated, sad, bewildered, humbled, awed. We hear a name and the images and smells and sounds come rushing in.

When a child dies, we don’t say the name much anymore. Which is understandable—they aren’t there to call to, and it can be painful. But that’s why events like the memorial service are so crucial: we need to say those names, and hear them.

And we need to say them and hear them together. Because that’s how we remember together. That’s how we honor these lives and all they gave us. That’s how we let each other know that the connections between us matter, and that we will never forget.

To my colleagues: please come. Hear the names. See the families. It makes a difference—for them, and for you.

A Time to Remember will be held on May 22, at the Joseph B. Martin Conference Center at Harvard Medical School, 77 Avenue Louis Pasteur. The doors open at 6 p.m., with the service from 6:30 to 7:30 p.m., and reception immediately following. All are welcome.

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