National Pregnancy and Infant Loss Month

“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.”

Ronald Reagan

October is National Pregnancy and Infant Loss Month, first proclaimed by President Ronald Reagan in October of 1988. Canada and Australia have also recognized October as Pregnancy and Infant Loss Awareness Month. In his 1988 proclamation, President Reagan said that the purpose of this specific designation was “to increase our understanding of the great tragedy involved in the deaths of unborn and newborn babies. It also enables us to consider how, as individuals and communities, we can meet the needs of bereaved parents and family members and work to prevent causes of these problems.” He then “call(ed) upon the people of the United States to observe this month with appropriate programs, ceremonies, and activities.”

In 2006, the House of Representatives passed a resolution designation October 15th as Pregnancy and Infant Loss Remembrance Day, a “day when all grieving parents could come together and be surrounded by love and support from their friends and families, a day where the community could better understand their pain and learn how to reach out to those grieving.” (http://www.october15th.com)

October is also National Breast Cancer Awareness Month, and the Susan G. Komen foundation has done a phenomenal job in raising breast cancer awareness around the world! This organization has done a great job since its inception in 1982. My grandmother and mother-in-law both had breast cancer, so I applaud the Komen foundation for its work.

IMG_0567“Pink” is everywhere during October and in so many innovative ways. One year, my husband, sister, and I participated in BMW’s Ultimate Drive to Cure Breast Cancer. BMW donated $1 for each mile a new car was test-driven. Driven by local volunteers, a fleet of new BMW cars made its way across the United States from dealer to dealer to promote the Ultimate Drive, and we drove cars from Tulsa to Oklahoma City. I got to drive the lead car as the rest of the cars followed me for the hour-and-a-half drive, and I was proud to be a part of the event to raise awareness. We see “pink” awareness everywhere. Every NFL football team – including big, tough football players, coaches, refs, and many others – sports everything from pink shoes to pink hats to pink towels. Websites go pink. Clothing lines put out “pink” items. Runs, walks, drives – it’s amazing to see so much support!

The Make-A-Wish Foundation is also a very high-profile, successful, and well-run organization with huge national awareness and great support. Once again, I think the work they do is incredibly valuable and worthwhile. There are many others whose work is incredibly valuable and worthwhile.

But, as a mother who lost a baby at 19 weeks gestation and another child to a drunk driver, I can’t help but wonder how one cause receives so much more support and visibility than another. It’s not that I begrudge either the Komen or the Make-A-Wish foundation their support or successes. I don’t. I wish them all the best!! Finding a cure for ANY kind of cancer would be awesome! Giving a sick child hope or a dream come true is an incredible gift. I guess I’m a trying to figure out how and why people galvanize behind one cause but ignore another.

I do have an theory, though. My theory is that it’s easier to focus on hope than loss. Even though there are people who die from breast cancer and there are children who do not survive their illnesses, the Komen and Make-A-Wish foundations focus on surviving and hope. Hope for a cure for cancer. Raising money to find a cure for cancer. Focus on survivors of breast cancer. Hope for a child to continue fighting his or her illness. Giving a child a dream he or she may not be able to achieve without the foundation’s help. Although bereaved parents are talked about in terms of “surviving the death of a child,” we are learning how to survive the death of our child. Our child is gone. There is no hope of bringing our child back. We have to figure out how to live our lives without them. We have to figure out how to find “strength for today and…hope for tomorrow.” Even though child loss awareness was promoted way back in 1988 by the leader of our country, it seems as though it’s an often overlooked or unmentioned topic.

I remember when we lost our baby in 1987, nobody said anything at all to me about it. Our pastor announced from the pulpit that we had lost a baby, but that was it. It wasn’t discussed. At 19 weeks, our baby was nearly halfway to due date, but it was as if nothing had happened or that it didn’t matter. I remember feeling like it was a very black year for me. We lost the baby the end of January 1987, my dad’s health declined to the point that we had to put him in a nursing home in August 1987, and then he died the beginning of February 1988. Later that year I helped my mom go through all of my dad’s things. I felt like I just had to keep going on as if nothing had happened, but it was an awful time for me. And I’m sure I’m not the only one who has felt that way.

How do we promote more awareness for National Pregnancy and Infant Loss Month? How do we promote awareness for what it’s like to have lost a child – whether through miscarriage, SIDS, accident, or natural causes – and the difficult and often misunderstood walk that follows? How do we promote realistic understanding and unwavering compassion for bereaved parents and their families? How are individuals and communities to consider – as President Reagan said – “how…(to) meet the needs of bereaved parents and family members and work to prevent causes of these problems…”?

I don’t see press coverage for any ceremonies of support for bereaved parents. I know that some hospitals sponsor programs and some churches have a ceremony, but generally I don’t hear a lot about the topic of the death of a child. There are books written on the topic and organizations that support the bereaved, but I don’t see a national awareness. Yes, there is the Compassionate Friends and other organizations, but these are targeted to people who have lost a child. Do people read books on child loss or seek out organizations that talk about dealing with the death of a child unless they personally are the one who has lost a child or know someone who has? I know it’s not an easy topic to think or talk about, but does that mean it’s not important to discuss or that it’s not just as important about which to raise awareness? Does that mean we, as bereaved parents, should continue to “buck up” or mask our grief and struggles on this sometimes very lonely and misunderstood walk? I just think it’s something people don’t like to talk about, and I think there is still a huge gap in understanding what it’s like to lose a child and what helps or doesn’t help.

So, as October comes to a close, my question is this: How many “appropriate programs, ceremonies, and activities” have you seen or been aware of? Would you say that President Reagan’s proclamation and the House of Representative’s resolution has helped to raise awareness and support for bereaved parents? What do you think? What’s your input on this? Just thinking aloud on this chilly Saturday morning. Would love to hear your thoughts, ideas, and what you have to say…

Becky

Great articles in a similar vein:

http://ouradoptionfaithwalk.blogspot.com/2012/10/why-it-matters-to-have-day-of.html

http://oca.org/resource-handbook/familylife/october-pregnancy-and-infant-loss-awareness-month

http://www.stillbirthalliance.org/modules.php?name=Content&pa=showpage&pid=3&link_id=67

© 2013 Rebecca R. Carney

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7 thoughts on “National Pregnancy and Infant Loss Month

  1. I resonate with everything you wrote. I lost a baby at 14 weeks, carried him for 2 more weeks, while my mother lay dying in a hospital. I miscarried the baby in the bathroom at the funeral home.

    In 2005, I lost my oldest son at age 23,

    I had no clue that October was “Infant Loss” month. Guess that says it all…there is nothing for bereaved parents.

    I’m at a place now where I am tired of thinking of other people in terms of “they just don’t know what to do or say”. I am far from cynical and I am not bitter. I’m just lonely in my grief.

    Thanks, Becky, for being out there.

    • Oh, Kathleen. I’m so sorry you are alone. It’s not a great place to be, is it? Sometimes it surprises me how long I’ve felt alone or how lonely I still feel. I have to agree with you – I think I, too, am getting tired of thinking of people as not knowing what to do or say. There is so much good information out there, if only one wants to find it. As I said in my response to Michele, it takes a willing heart.

      I was recently re-reading some of my early journal entries. I ran across an email conversation I’d had with a friend in the year after Jason died. She’d asked me how I was doing, but then didn’t really want to hear. She OBVIOUSLY didn’t want to be the one to talk to me about what I was really feeling; she wanted to hear that I was “fine.” Her comments to me were “maybe you could find someone, maybe a professional person, that you could “blast it all out to” safely without worrying that you’re going to hurt someone, someone you could be bluntly honest with about your feelings so that you’re not just bottling them up inside, but have a safe avenue to let them out.” Silly me; I thought that’s what friends were for. In a visit to Seattle a couple of years ago, I discovered that, even after all these years, she still doesn’t want to hear. I’m not cynical or bitter, either, although I was really hurt for a long time. I worked very hard on forgiveness over the years, even though no one has actually acknowledged leaving us alone or has said “I’m sorry.” I try to recognize and deal with any old feelings that may arise, as I am the only one who suffers when I feel that way.

  2. I became a widow once my husband Joe moved to heaven. But just because there is a term to describe me does not mean I am accepted by society. Once widowed, I became and still am invisible and treated like I have cooties. My friends and Joe’s friends disappeared. New people run from me once they find out I am widowed.

    As for help with household repairs, one woman told me “Just do things (around the house) as your time and money budgets will allow and it will all get done.” Translation – you are not worthy of assistance because you are young and can do it all.

    Another woman refused to help me during my unemployment. She told me to apply online instead of faxing my resume to the hiring manager of the collections department. I applied online and my resume got lost in the black hole.

    It is because of how I’ve been treated that I started my blog JoyReturns. In hopes of encouraging other widows but also to educate society about widowhood and hopefully get rid of the stigma attached to widows.

    So please do not be fooled by the words orphan, widow, and widower as they are only words society uses to label people. Those labels do not mean society helps them.

    May God continue to bless you as your minister to others through this blog and bring you and your family comfort during the upcoming holidays.

    • I’m sorry, Michele. I didn’t mean to offend anyone. I was just quoting Ronald Regan’s words from his proclamation.

      I don’t know that having a “term” for a parent who has lost a child would do anything to increase acceptance, awareness, or empathy, anyway, any more than it would having a term for a widow or orphan. It all comes down to people involved. Either people accept and/or support a person for who he or she is no matter what s/he is going through or what losses s/he has endured, or they don’t. Death changes things and rocks the status quo. Some deaths rock things more than others can handle or know how to respond. As with you, I write to increase awareness of what it’s like to have such a great loss in my life – in my case, our son Jason. I’ve always said that if I can raise awareness so that even one bereaved parent is helped in his or her loss in any way or if I’ve helped raise awareness for a friend or family member of a bereaved parent, then I have accomplished what I set out to do. For those who want to learn, the information is out there more than ever before because of those who are willing to speak out about their losses, whether it be the loss of a child, spouse, sibling, or parent. After that, it takes a willing ear to listen, a willing heart to empathize, a willing friend or family member to act.

      Part of my struggle with this whole loss thing is that I don’t understand why people, especially “Christian” friends, step away instead of step forward. It doesn’t make any sense to me to leave people so alone when they have suffered such a great loss. It doesn’t make any sense to me for friends to disappear. I felt like such a pariah after Jason died. Even when I did see people we knew, sometimes they said things that were not helpful or were hurtful. I know that grieving is a long, hard, lonely process. Sometimes it’s just longer, harder, and lonelier than it needs to be because of lack of support.

      • No offense taken Rebecca, and I did not mean to come across harsh just telling it like it is.

        I believe the best term to describe you and Joe is Mother and Father. The way I see it you are still their parents, they just reside in heaven. Some day you will reside with them and still be known as their Mother and Father. Yes, I know you want them here and I wish that were possible.

        Joe and I will never be married again even in heaven. While we will still know each other and have a relationship it will not be like the one cut short here on earth.

        Like you I do not understand the loss of friends, especially “Christian” ones. It does make grieving harder because of the loneliness that sets in when they leave.

        You are enlightening the world about the loss of a child, so keep on blogging whenever you feel the need.

  3. Since we lost Mia to SIDS last year and started our SIDS foundation in Georgia, we’ve hosted a candlelight vigil the last two years. The truth is, we would never have known that October is National SIDS Awareness Month with the 15th being National Pregnancy and Infant Loss Day were it not for Mia. Since then, one of our missions is to create the same awareness for these the way Susan G. Komen has done for cancer. Blessings of strength and peace to you, as I can imagine that there are still plenty of days where you simply can’t see anything but the loss. We will lift you up in prayer as so many have done for us…

  4. Becky, thank-you for your kind words. Connecting with you has helped me.

    You said:
    “Part of my struggle with this whole loss thing is that I don’t understand why people, especially “Christian” friends, step away instead of step forward.”

    I am not, nor have I ever been, a person who lives in self-pity or expects people to do things for me. And because my son took his life, (he was 100% involved in church), the silence from Christians says so much. I don’t want to hear they don’t know what to say. Why not? If Christians are supposed to be guided by God, spirit-filled, or ? then why doesn’t God help them to help those who are hurting? Why do I feel disqualified? I felt like my son messed things up for my church’s reputation. I spent 7 years going to my church after my son died. I felt like I had leprosy. So I stopped.

    If it weren’t for knowing God in a new way (like Job said after his sorrow, loss, and pain: “I’ve heard of you by the hearing of the ear, but now my eye has seen you.”) after losing Christopher, I would have lost all hope. He has truly sustained me. Unfortunately, I cannot believe He is too happy with what I’ve experienced. It is contrary to his word.

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