On October 25, 1988, President Ronald Reagan declared October Infant and Pregnancy Loss Awareness Month. He said:
“When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them. This month recognizes the loss so many parents experience across the United States and around the world.”
Thirty-four years later, much work still needs to be done to raise awareness for infant and pregnancy loss and for the families affected by it. Too often, the shame and stigma surrounding this loss silences the voices of its survivors.
In setting out to write this piece, I wanted to gather the thoughts and feelings of other loss parents from a variety of backgrounds and experiences. I wish to thank all of the brave moms who shared their stories with me. Their words and their voices are powerful and should not be silenced. I hope you will hear them well.
1. The loss of my child changed me.
The physical and emotional trauma of losing a child changed us. It is more than a loss at that moment. It is a loss that lasts a lifetime and permeates every aspect of our lives, so that even in moments of great joy, there may still be a deep sadness and longing. Even when we look around to count the blessings of our lives, we must also count the one who is missing. It changes us and our families forever.
Traumatizing . . . I felt my baby being born yet there were no cries . . . absolutely devastating.
You will always think of the what-ifs.
For some, it’s the end of trying [to conceive.] It’s the end of possible siblings. . . or even one, for some.
You don’t just get over it . . . It’s a deep, deep hurt.
Grief changes the way we look at the world. Moving forward, future pregnancies and family life are colored by lenses of loss. For many of us, grief can often look a lot like fear.
Sometimes it’s hard to feel excited or hopeful when you’ve had so many traumatic experiences.
Even though I have other children, the pain still runs deep. I have a fear of losing another child. That pain doesn’t go away; it’s a roller coaster.
You lose your innocence . . . You know what it’s like to fall into a small category of something bad happening, so you never feel safe from falling into another bad category, no matter how small the chance.
Post-traumatic stress and mental health are real and make it more difficult to cope with loss and to communicate with others. We might need to be reminded that there is no shame in seeking support through therapy, medical professionals, or others who have also experienced loss.
Support groups and finding others to share your story with can be really helpful.
Miscarriages can be very physically and emotionally painful and hard to share . . . that you had one, but sometimes when you share, others are able to share, and you can encourage one another.
2. I can be happy with you even while I am still sad.
The trauma is everywhere, always present, even in the happy moments of life. It is possible to be joyously happy for a friend who announces she’s pregnant, while simultaneously being desperately sad that our children are gone.
I am really happy for the person, but it really hurts later.
The big celebrations can be especially difficult to endure. They are reminders of what should have been, what would have been.
All the holidays, those birthday parties of the neighbors, your kids’ first day of school pictures. I love them all, don’t get me wrong. But I cry because one of mine isn’t here, or isn’t in the picture, or should be jumping with the other kids.
Be mindful of our loss, especially when throwing baby showers, gender reveals and announcements. Let us set our boundaries and be respectful. We are happy for you but have triggers.
We understand that the world must keep spinning, even when it feels like ours has stopped. Keep having your moments, and please keep inviting us. We’d love to come. Just please extend grace when we can’t.
Don’t stop inviting us, but please don’t be upset when we won’t be there. Sometimes we just can’t confront the empty in a big way. Like the baby showers. Or the birthday parties.
3. Your actions matter.
For families that have experienced the trauma of loss, the actions of others have an impact. Extravagant gifts or displays are not needed. For many, a simple affirmation of the loss and permission to grieve is enough. Pulling back the curtain of stigma, recognizing that their baby was lost, but also loved, is a gift in itself.
Acknowledge the loss.
Take a meal. We are too torn to shop or cook. We don’t even realize we are hungry and sometimes we don’t even care.
Please also remember the dads. They also lost their children, and often face unique pressures, such as coping with devastating emotions while trying to be strong for their partners. They are often the ones who drove the moms to the doctor, slept on the couch in the hospital room, or held her hand while she birthed a stillborn baby. You can be a blessing by acknowledging his loss, asking how he is doing, and creating space for support.
Loss hurts for dads, too. They long for those babies, too.
Don’t be afraid of emotions. A card, or a note or gift, even a year or two later, on Mother’s day, etc., is not wrong to remember with the family.
4. Your words matter.
Some have called infant and pregnancy loss an “unspeakable loss,” and it is. Words fail when it comes to knowing how to comfort a friend or how to make sense of saying goodbye before we can even say hello. It can be hard to navigate these waters, and we understand that. Honestly, we don’t really know what to say either.
You don’t need to know what to say.
I understand most people only know to say sorry, and that’s OK. But don’t be silent. Say their names to us when you can. It means the world and makes us as parents feel like our children are present.
I wish people understood that saying ‘you’re the strongest person I know,’ isn’t helpful, because I literally wasn’t given any other choice.
It’s a real loss, no matter if someone was pregnant for 6 weeks or 40.
Saying things like, ‘at least he’s no longer suffering,’ or ‘at least you didn’t get to know him first,’ do not help because not knowing him outside the womb is exactly the reason it’s so hard. I will never get to see his eye color. I will never get to see him smile or hear him laugh. I am missing all the best parts of getting to be his mother.
Faith is a journey. For some of us, there is a shaking, a questioning. If you are a praying friend, pray for us, but please don’t shame us. Let us ask those questions. God is big enough to answer them. Love us like He does.
I wish people didn’t say things like, “it’s not God’s timing.” Because the fact is that HE is weeping with us.
Sometimes these difficult experiences can draw us close to God.
5. I want to talk about it.
One in four pregnancies in the United States ends in loss. Despite the statistic, it feels like there is a stigma surrounding miscarriage and stillbirth. Someone once called it an unspeakable loss. Loss of babies, whose lives are just beginning, seems like such an injustice; it is difficult to talk about. Yet, we must talk about it.
I never knew how common pregnancy loss was until I experienced it myself, but talking about it helps normalize it and gets rid of the shame and stigma many women feel.
Stillbirth is still a birth. We have birth stories and we want to talk about them.
It’s more common than everyone thinks, and, sadly, some people go through it alone because their friends aren’t talking about it.
It is heartbreaking and should be talked about.
We know it’s hard. It’s hard for us, too. But our babies are gone, and their memories are all we have left. And the thought of forgetting them, letting their memories slip away is unbearable.
Talk about the babies, and when you do, don’t apologize for bringing them up, because I’m already thinking about them all the time.
Please talk about him! I know it is awkward for you. I know you don’t want to bring him up because you think it will hurt me, but what hurts me is the thought that he will be forgotten.
We must talk about them–the babies we loved and lost–because they are ours, and because we love them still.
I wish people knew it hurts more when you don’t say their names.
So talk about them. Spread love and awareness. It’s for us, and for our babies.
That’s what we wish people knew.