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.

11 thoughts on “Remembering–together–those we lost

  1. My husband and I lost our 18 year old son in an auto accident almost 18 years ago.  We have learned that life continues, but there is a special place deep inside of us where we keep Jonathan.  We have been blessed with a wonderful Grandaughter whom is now 3 years old.  We both feel that Kyleigh is our reward for what we went through when we lost Jon.  Our daughter (Kyleigh’s mother) feels very strongly that Kyleigh knows her uncle through our memories.  No parent should ever lose a child, but what you carry in your heart is everlasting.

  2. My son passed away 3 years ago at 5 days old at Tufts Medical Center. After that day… The worst day of my life… I have not heard from them. We had donations made to their NICU in our sons name… We heard nothing from them about that either. It’s nice to see Children’s doing something in remembrance of these angels! I understand that as physicians you can’t save everyone but compassion goes along way and my husband and I feel we have gone our journey alone. I love how you said for babies the nurses and dr.’s know them more then family and friends do… That is so true! This story has brought a smile to my face today!

  3. my daughter Brittany Lynn Smith passed away mothers day week in 2003. after getting bacterial meningitis,coma,skin grafts, years of dialysis and 2 kidney trans plants. i miss her every single day.

  4. I have two children of my own and have been fortunate that they are both healthy. I decided to go back to school and get a nursing degree so I can work with sick children and make every day of their life here with us enjoyable. I am sorry for all of you who have lost your little ones and I am happy that there is a day to remember their time here with us.

  5. I had the opportunity to attend this service last year because i am the grandmother of a beautiful young lady that passed away in November 2009 after a long battle with spinal cancer.  I attended with her parents and three siblings as well as a friend of the family.  The service may be sad but it is also over whelming to see so many people all in different stages of grief trying to pull it all together to get through this time .  When our Sarah’s name was called we were given flowers to place on her behalf, sounds like a simple gesture but it has great emotion attached to it.  At that very moment you know without a doubt the impact that special person had on you, your life and the void you have without them. The realization of why you are there is clear, but you are not alone.  There were so many names read off that night, I was taken back by how many young lives slipped away in one years time from one health institution.  The impact was cruel to say the least, makes one wonder how this could happen to so many beautiful souls.  I am so happy I got to be part of that experience, i would not have missed it for the world.  i cry for our Sarah every day and think of her constantly, but I do know she left her smile, thoughtfulness, beauty and unselfish soul for many people to remember.  That ceremony is another way of celebrating someone you loved in a very special way and to say thank you to the wonderful people who in one way or another had a hand in her care.

  6. Dr, is the memorial service only for patients who died at Children’s or while they are patients during their time in care? I ask because my son recently died. He was still being seen by a program at CHB. He was a patient in many programs over the years. Some of the doctors, therapists, and others who cared for him were not able to attend the services. We did send a copy of the service to some of the doctors to try and help them heal. His death was sudden (for all of us). I do not know if taking part in this would help us as well as his doctors in the future. It does sound very meaningful. Children’s was such an important part of Sam’s care. His doctors have shared that they are grieving. That means so much to us, but it also gives us pause in wanting to find a means to comfort the ones who tried to help him! Thank you!
    GM

    1. The memorial service is absolutely for your son too.  You are wonderful to want to comfort others; I hope you are finding some comfort for yourself, too.

  7. Our first baby died at Children’s Hospital at 22 days old.  We never got to know her, and for many years I could only call her “The Baby” and not by her name.  Her name was Ellen Courtney. She had light brown hair. We didn’t get to hold her or bring her home. We were young (22) newly married, and we were devastated.
    It didn’t seem like a very good beginning for us.  Her little funeral was attended by our priest, my parents, my sister, and the funeral director.  It still brings tears to my eyes when I think of that day.  She died on November 1, 1972.
    I thank God, though, for the blessings of three wonderful children, now grown, and SIX awesome grandchildren, too!  But that tiny baby Ellen still comes to mind sometimes and I wonder, “What would she be like?” “What would she look like?” I’ll find out when we meet in Heaven one of these days!
    I would like to take this time to thank the doctors, nurses, and everyone who tended to our little girl while she lived on this earth.  Some of them many no longer be with us, but I was thankful then though I may not have said it to them.
    I never knew of this Memorial service at Children’s–thank you for your compassion and love for these children and their families that you’ve served.

  8. Thank you so very much for writing about this and for mentioning that this would be appropriate for my son’s memory. I was able to connect with two from my son’s team (one of whom I did not know was coming and I had never met face to face!) I was delighted that he was able to come! He had always been a helpful voice on the other end of the phone and I had really hoped to meet him one day. Having this opportuntity to have a chat with the doctor and team member helped me and so did the ceremony. It is very emotionally charged to see the very large vase become filled with roses and realize that there are even more lives lost. I began to turn my thoughts to the lives saved, however. Yes, there are so many lives lost and that is tragic, like our recent loss. The blessing of having Children’s Hospital of Boston,  I have found, like this ceremony, is physicians and staff taking time to remember the lost while paying attention to the living.

  9. Great article..!!!!!
     Your right We can’t save everybody. We are not God.
    But i think every therapist at Children’s doing his job perfectly.
    This is the great story…
    thanks to you for sharing your information…
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