Category Archives: Grief

“Inside Out” and making space for sadness

Eleanor and I went to see “Inside Out” yesterday, and I cannot say enough good things about it. I’m going to try not to spoil it for those who haven’t seen it.

This is a movie for adults. I know it’s an animated movie marketed toward children, and Eleanor definitely enjoyed it. It’s not inappropriate for kids. If I had it to do over, I might have had her watch it when she was older because I think she would have gotten much more out of it. The message of the movie is that joy and sadness need to co-exist. I love that. I sobbed through a lot of “Inside Out,” to the point that I think Eleanor was becoming worried.

In the early months after Genevieve died, I was sure my life had been ruined. Even if I survived the crushing sadness and depression, I knew that I would be sad every day for the rest of my life, that I would never have another day of unfettered joy. Who wants to go through life like that?

That’s the message society sends us, isn’t it? Life is only worthwhile when packed with shiny Instagram moments. There are dozens of books — many of them best-sellers — on how to lead a happier life. Those of us who carry some sort of permanent scar struggle not to be outcasts. We are outcasts because we want to talk about sad things, and that isn’t allowed in our society. Then other people might feel sad. Can’t have that. We might miss out on a couple minutes of happiness.

I needed a lot of time and struggle to see that embracing sadness improves my life. People don’t talk about my middle daughter because they think they will make me sad. In truth, it is when people gloss over my daughter, when they ask whether I will have a “third” baby, that I feel sad. My kids give my life meaning, all three of them.

Most of the loss parents I know are funny and sarcastic and joyful, after they get through the first year or two of grief. The people who have the most reason to be sad are the most grateful people I know. It’s that flipping coin of joy and sadness.

I do think it’s growing more acceptable to talk about sadness and grief. As always, I want progress to happen quickly.

I love Pixar for putting out this movie during the summer when every other thing at the theater is Super Hero Movie, Part 9. And for tackling a topic that we seem to handle so poorly. Perhaps “Inside Out” will help spark conversations that lead to more emotional maturity and to the understanding that a rich life can include, and indeed must include, both joy and sorrow.

Stillbirth resources

Stillbirth is a word that is whispered, or more often, not used. Most people have no idea how frequent stillbirth is because nobody talks about it. In the U.S., one in 160 pregnancies ends in stillbirth, which is 26,000 lost babies every year. The American Congress of Obstetricians and Gynecologists held their annual meeting last month, and for the first time ever, they had a panel on stillbirth. We might be racing along like snails to solve this, but at least we have started moving.

I have been compiling a resource list for parents and others who have been affected by stillbirth and want to contribute to stillbirth prevention and education. There isn’t any large, national organization dedicated to reducing stillbirths, and I can’t list every group. There is plenty to do.

Most states have no uniform way to collect stillbirth data. Most do not have policies for providing mental health care to couples who have experienced a stillbirth. Most do not issue birth certificates. If you want to get involved, here are places to start:

Healthy Birth Day
This nonprofit was founded by a group of Iowa mothers who lost children to stillbirth. They helped get the Iowa Stillbirth Surveillance project passed as a law. The law creates uniform gathering of data on stillbirths. They also started the Count the Kicks campaign to educate pregnant women about the importance of kick counts in reducing stillbirth.

Stop Stillbirth ASAP
Stop Stillbirth ASAP seeks to create a coalition of groups dedicated to reducing stillbirth. The organization’s co-founder, Debbie Haine Vijayvergiya, worked to pass the “Autumn Joy Stillbirth Research and Dignity Act” in New Jersey. The law, which was named for Debbie’s daughter, created a statewide policy for the treatment of families after a stillbirth and for stillbirth data collection. I talked with Debbie recently, and she is hoping to find parents in other states who would like to work on similar legislation.

The Human Placenta Project
Are you excited about placenta research? I am! The National Institute of Child Health and Human Development has begun a huge research project to better understand the placenta, which is thought to be responsible for many unexplained stillbirths along with a bunch of other pregnancy complications. I spoke with researcher Susan Fisher, and she said that they can now accept donations of archived placentas. If your baby was stillborn and you had testing done on the placenta, she can use saved placenta cells for future research. To donate, contact her at sfisher(at)cal(dot)ucsf(dot)edu.

I had hoped to include information about how stillbirth parents can get involved in educating doctors and medical providers to better help grieving families. As far as I can tell, this education is piecemeal, done differently by each medical school and hospital, if it is done at all. If you have done educational speaking, please fill me in on your experience.

Unanswerable

Eleanor has asked more questions about Genevieve lately. We were talking about her last week at dinner, and Eleanor said, “It wasn’t worth it.”

“What do you mean?” I asked.

“You went through that, and you didn’t get to bring her home,” Eleanor said.

I stumbled through an answer about how much I had learned from Genevieve’s death, and I’ve thought about that conversation ever since. Would I rather give back that whole experience, including my daughter, and be as innocent as I was before? I can’t answer that.

I’m more sympathetic now, at least for people truly deserving of sympathy. I feel a kinship with people who have endured cancer or lost a spouse or parent young, anybody who has gotten the losing end of statistics. On the flip side, I have difficulty being sympathetic about small, passing things.

I suppose I’m more grateful. It’s been so long since I was a “normal” parent that it’s hard to remember how I felt then. How can you measure gratitude anyway? I donate more to charity and spend more time thinking about how I can do meaningful work. I probably complain less than I used to. On the flip side, again, I have a hard time listening to others complain. I have always been bad at small talk and am worse at it now. Yes, the weather is cold. But two of my kids are alive!

The book that my book group selected for this month has a scene with a dead infant. I didn’t know when we picked it, and the scene prevented Greg from sleeping for a few nights. I haven’t decided whether I’m going to read the book.

We’re planning summer vacations, and I’ve already blocked out the middle of July. The 15th is cookouts and beaches and ice cream — smack dab middle of summer. It’s also a week during which, I suspect, I will never again take a vacation.

So it’s easy to imagine that I might prefer a life where I could vacation in the middle of July, where I could read the book or watch the movie and feel only passing sadness at the baby who dies, where I could see the birth announcement and feel joy without the nagging undertow of “Why me?”

This is the part where I’m supposed to say that I wouldn’t trade my younger daughter for all of that. But I didn’t know her. So would I trade those nine months of hope and expectation for a lifetime of not knowing how it feels to lose a child?

I wish I didn’t have to ponder that question.