Part 1

We are very open in society about many things, but death and grieving remains taboo.  I’ve learned a lot over the past five years about myself, my marriage, my family, and my faith.  I’ve learned that people do have questions, that there is misinformation out there, and generally that people don’t know what to say.  So, here are the top five things that I and many other moms that I’ve met over the years would like others to know about stillbirth:

1)    Our babies were not “pregnancy losses.”  Luke was a baby. He had a name, he had possessions, and he had clothes I’d planned for him to wear.  I went through 30 hours of labor and gave birth to him.  I know that referring to him as “lost” is a euphemism for “dead,” which makes people more comfortable, but it’s OK to say he died.  He was a person and he died.  He’s part of our family and it hurts when others don’t understand that, even if their intentions are good.

2)    It’s OK to use their names.  In the early days of my grief after Luke’s death, a cousin of mine who herself had a stillborn daughter eight years prior told me, “There will come a time when the pain isn’t so raw, about to bubble to the surface.  There will come a day when you can say his name and not cry.”  And it’s true.  I have found, though, that people don’t generally use his name.  They’re afraid to upset me, I know.  But believe me, the opposite is true.  I know he died, and your using his name won’t remind me of something I’ve forgotten.  Rather, using his name shows me that you respect his memory and is more of a gift than you will ever know.

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3)    We blame ourselves.  This is one of the few problems that does get better with time.  But it takes a long time.  Our bodies betrayed us and our babies, and at the end of the day, we feel responsible.  We think back over every detail of our lives, wondering if we had done just one thing differently, if it would have changed the outcome.  What if I fought harder for the doctor to check things out?  I slipped on the ice that February; what if it caused something to go wrong?  I ate pizza.  I wore black pants and socks with penguins on them.  I exercised.  I watched “Grey’s Anatomy.”  What did I do wrong?  Our friends will tell us that it isn’t our fault, our doctors will tell us, the world will tell us.  But in reality, this is one of the toughest pills to swallow.  It’s easier to blame yourself than to accept that which you could not, and cannot, control.  Yesterday, my 17-month-old did a face plant on his way back from the park with my husband.  I wasn’t even there, and I blamed myself.  We’re mothers; it’s what we do.

4)    Sometimes, there is no reason.  There are cases where a cause for stillbirth is known, but about 50 percent of the time, no cause can be found.  One way isn’t easier or better, and both render subsequent pregnancies really, really hard.  In my case, we know that a malformation in the umbilical cord resulted in Luke’s death.  However, when I got pregnant again, I already knew all the things that could go wrong (Google was not my friend!) and spent the better part of the next nine months in an almost-constant state of panic.  Many people told me to “Enjoy my pregnancy” or “Stop worrying, it’s bad for the baby.”  I’m not a fan of these statements. Whether someone has experienced a stillbirth, miscarriage, or is having a “normal” pregnancy – some people don’t enjoy pregnancy.  And that’s OK.  They’ll still bond with their babies and be great moms.  Let’s not make them feel bad.

5)    It will shake you to the core.  There’s good news and bad news.  Bad news first: After a stillbirth or the death of an infant or child, marriages suffer, relationships fall apart, and life feels broken.  Risks of depression, suicide, and substance abuse increase.  But there is good news: There is more support and information now for bereaved parents than ever before.  We are not afraid to share our stories with the hope of helping others.  Years ago, people were told to move on, to forget, and to “replace” their babies.  Thanks to the work done by so many amazing individuals, this is beginning to change.  Resources are out there, and you don’t have to go it alone.  Many moms of stillborn babies, myself included, go on to have successful pregnancies and deliver healthy babies.  It isn’t easy, but we do it, and we lift each other up and carry each other through the dark times.

Today, I would describe my perspective as one of quiet acceptance.  I can’t change where I’ve been, and I can’t turn back time. But I appreciate all three of my children, and I often look at my 4-year-old and 17-month-old and wonder what I did to get so lucky.

I will never walk along the shore with Luke, and I will never see him grow up.  Not a day goes by that I don’t wonder what he would have been like or think about what he’d be doing.  I take the little coincidences in life as a hopeful sign that he is with me, watching over me.

Last year, as I walked on the beach with my then-3-year-old, we found a stick and wrote Luke’s name in the sand.  A piece of driftwood washed up at my feet, and when I picked it up, it had the name “Luke” carved on it. I brought the driftwood home, and it sits on my bedside table, a reminder that while I cannot carry Luke in my arms, I will always carry him in my heart.  He is my son, and I’m proud of him.

And I hope he’s proud of me too.

Suggested resources

This list is by no means exhaustive, but simply a personal selection.

Books

Groups/organizations/websites