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

“It’s the Most Wonderful Time of the Year”

I did something the other day that most people probably wouldn’t understand. I specifically went into the Christmas aisles at a our local big-box store to test myself. I wanted to see how I would react to seeing all of the Christmas stuff that is now arriving on shelves in force. I wanted to see how badly the vise would constrict around my heart this year as Thanksgiving and Christmas approach. Perhaps I wanted to begin preparing myself for the onslaught of reminders that “It’s the Most Wonderful Time of the Year” – or, at least, the implications that it should be. For some people, it’s not. You see, this time of year as Thanksgiving and Christmas approach is always a tricky time filled with potential landmines for a parent who has lost a child.

The vise doesn’t constrict as much as it once did, but I don’t think there’s any getting around the fact that it still does and probably always will. I find that I still have to concentrate on breathing the first time I see a Christmas display. I feel it like a jab right in the heart. I see people already posting online about being so excited that Christmas is coming, that they are already playing Christmas music, that Christmas is the best time of the year for them. For some people, it is. For others – for me – it’s not exactly the Hallmark/Norman Rockwell Christmas or Thanksgiving any more. I feel like it used to be that way, and I had so much fun planning the Thanksgiving menu and couldn’t wait for Christmas to arrive. Oh, the traditions, the food, the conspiring on what special present to buy, the music, the lights. I loved it all!! I could barely function that first Thanksgiving. That first Christmas was torture. The second wasn’t much better.

I have to admit I still feel like I trudge through part of it at times – not all, but part of it – because I don’t feel the unabashed wonder and enthusiasm that I used to. It’s hard to celebrate Thanksgiving or Christmas (or even most holidays) without acutely feeling Jason’s absence. What I try to do now is to focus on making Christmas special and meaningful in some way for those I love. But, it’s still a tricky time for me, and I sometimes really have to concentrate on focusing on the positives while being aware of the holes in my life and sidestepping the landmines that are inherent with the holiday territory.

As the Thanksgiving and Christmas seasons approach, I’d like to offer an early reminder. If you are a bereaved parent, I hope you will take time to be gentle with yourself. I hope those around you take time to be thoughtful, kind, generous, and gentle with you. You don’t have to do it all. Do what you can and let the rest go. Try to remove as much pressure on yourself as you can. You don’t have to do everything you used to do. You may want to keep some traditions and/or start some new ones. It’s okay. Do what feels right to you for your family and whatever you feel honors the child you lost.

For those who know a bereaved parent, perhaps you could start thinking now about how to do something kind and thoughtful for that parent that may take a bit of sting out of the season. You can’t “make it better,” but you CAN do something. Perhaps you could send a note, telling of a special memory you have of their child. A parent never gets tired of hearing that his/her child is not forgotten or hearing a story that brings a memory to life. Perhaps you could include the bereaved family or a sibling in something. They may say no, so don’t take it personally. But they may need something to look forward to and say yes. It’s easy to get caught up in the hustle and bustle, assuming everyone else captures the same joy at Christmas, and forgetting that there are those who really struggle with loss and its aftermath during this time of year. It’s easy to assume that everyone else is enjoying the holiday season as much as you are. Even after eleven years, I still struggle with the approaching holidays and still feel at times that I’m on the outside looking in at everyone else’s joy and enthusiasm. It’s not that I don’t enjoy the holidays. It’s just that they aren’t quite the same for me any more.

I’ve written before about Christmases after Jason died: A Bereaved Parent’s Christmas; My Christmas Wish for Bereaved Parents; Christmas Day; Christmas Season – Not the “Same as Always” This Year; Caution! Rough Sea Ahead!. Here is an entry from my journal dated 12/25/2003:

It’s Christmas Day. It’s sort of been a mixed bag. I have had such a hard time getting anything done to get ready for Christmas. Doing things to get ready for Christmas meant that I had to focus on another holiday without Jason. How can we celebrate when Jason is gone? I have been trying so hard to figure out how to keep Christmas special for the rest of us without it seeming wrong to celebrate when Jason isn’t here to celebrate with us. It’s just not easy. When I went into stores to look for presents, my heart just felt like it was being crushed or squeezed by a vise. I couldn’t breathe. I would feel panic-y and have to leave before I got anything. It’s so hard to do the things we used to do. It’s just not the same.

No more all going out together on a Christmas-tree-finding adventure. How can it be the same to find and decorate a tree without our boy? Jason was the one who put the angel on top of the tree. We’d bring the tree home, put on some Christmas music, and then all decorate the tree together. I’d unwrap the ornaments and everyone would put their own ornaments on the tree. We’d put up the stockings by the fireplace. Our stockings would eventually be filled with fun stocking stuffers we had bought each other. Such a fun, festive, family time.

It’s been so hard to figure out what to do with the stockings. What do we do with the stockings now? Do we hang them up? Do we put things into the stockings for each other? How do we fill four out of five stockings? Jason’s would look so empty. We can’t not put his up. Every decision seems to have so much emotion tied to it. Everything seems to emphasize Jason’s absence.

It’s been such a hard Christmas. I tried so hard to get in the “Christmas spirit,” whatever that is any more, but I don’t think I ever succeeded. I really tried, but just couldn’t muster enough enthusiasm.

On Christmas Eve, Joe, Jenna and I went out to dinner. We honestly were all trying our best to put on our happy faces and have a good time, but we just seemed like a sad little group, I’m afraid. It just wasn’t the same. We all used to go out to dinner for Asian food and then to the candlelight church service. We’d talk and laugh and have the grandest time, full of joy at being together and anticipation of Christmas morning surprises. It was part of our Christmas tradition. Now what do we do?

We came home after dinner and watched Miracle on 34th Street. Both Jenna and I fell asleep somewhere in the middle of it. When we went to bed, tears just started flowing. I couldn’t keep up the pretense any more. I am just so sad.

I got up really early this morning to make cinnamon rolls, just as I used to do. I just wanted to cry the whole time. Do we try to keep traditions we used to have or what do we do? It’s just so hard to carry on with things we used to do. It hurts so much. I don’t know what the balance is. Both Joe and Jenna came down as I was mixing up the dough. I guess they couldn’t sleep, either. After I got the dough made to rise, we went back to bed. I realized that Joe was crying. I asked him if he was okay, and he said he was just so sad. We just held each other and cried.

The day improved once Eric arrived to eat cinnamon rolls with us and open presents. Later in the day, [our friends and their family] came over to have Christmas Day dinner with us and we had a good time together. We played games and went to see a movie. Don’t know what we would have done without them. I’m afraid it would have been a long day.

I don’t know. It seems at times we just go through the motions, but it doesn’t seem to have the same “heart” as it used to. How can we? Our hearts are broken. A huge part of our family is gone. Nothing is the same.

© 2013 Rebecca R. Carney

Happy Birthday to Me

My birthday is coming up soon, and my boss reminded me of that fact a few days ago. Birthday reminders of clients and employees pop up on his calendar, and he had noticed mine coming up. I just kind of crinkled my nose and went back to working. I’m sure he thought my response to that reminder was very underwhelming.

I like my boss. He’s a good guy. He’s generous and nice to me. That’s important to me as a general rule, but especially important in the workplace since I spend nearly as much waking time at work with him during the week as I do at home with my family. He’s really busy, always has a million things on his mind, and so we don’t chitchat a whole lot about personal things. That’s okay. I would really rather not talk about myself or my life, anyway. The point here is that I’ve never said anything to him about Jason or the death of a child. As a result, I’m sure he thought my reaction to his birthday reminder was a typical female-not-wanting-to-get-older thing.

It got me thinking about what I would say if he commented about my reaction to my birthday. Do I just minimize my reaction and let him think that I just don’t want to get any older? Or do I tell him the truth – that I would really rather skip over my birthday and most “holidays” entirely because of Jason’s death? What exactly would I say? Mentioning the death of a child can really make things awkward. Do I say something or let him be comfortable in his lack of knowledge about Jason? What if the topic of how many children I have or something of the like comes up some other time or way? I guess I just need to process this in case the topic of my birthday and lack of enthusiasm about it comes up again before the actual day.

I’ve always loved holidays and everything that goes along with them – birthdays, Easter, Thanksgiving, Christmas, 4th of July. Making Halloween costumes, planning birthday parties, getting ready to host the 4th of July at our house, baking cinnamon rolls for Thanksgiving dinner and Christmas morning. You name it. I loved it all with a passion.

I loved shopping for stuff for Easter baskets for the kids. I’d keep my eyes open for weeks before Easter for cute stuffed animals and unique things I could buy. One year I got each of them a bottle of sparking cider for their baskets. My husband kind of scratched his head on that one, but I knew that all of them loved sparkling cider and that they would probably get a kick out of having their own bottles to drink. I’d get up early on Easter morning, sit on the floor of our bedroom in front of the closet where I had been hiding everything, put the baskets together, and then set them in front of their bedroom doors so they could find them first thing when they got up. It made me so very happy to surprise them like that.

As I wrote that last paragraph, I physically felt the excitement I used to feel as I got ready for holidays and events, and it made me smile the biggest smile. But then it was followed by tears welling up in my eyes, because…well…holidays just aren’t the same for me any more. You see, holidays bring into focus the holes in my life, especially the huge hole left by Jason and the aftermath of his death. I have too many holes in my life and struggles surround those holes, and they make holidays really hard. They’re all hard, but holidays that celebrate “me” are hard for me in a different way than other holidays.

Everyone likes to feel special to family and friends and that their lives are celebrated by family and friends. I was no different. I wanted to be surprised by gifts and celebrated on my birthday, to be honored on Mother’s Day, to have love gifts or flowers from my husband on Valentine’s Day, to get well-thought-out-just-for-me presents for Christmas.

I remember one Mother’s Day it seemed as if no one had made any advance preparations to celebrate “my day.” It was one of those “Oh, by the way, Becky, where would YOU like to go for dinner?” years, and it rather peeved me a bit that not more thought had gone into celebrating “me.” Selfish. It just makes me feel so selfish now. How I wish I hadn’t been so selfish.

I guess that’s why I especially don’t like celebrating holidays where the focus is on me. I would gladly trade every single one of them just to have the ordinary days back of being together with my entire family. There were times when other things – “me” things or some activity or perceived need to be addressed – that seemed so important to me at the time. Now, I honestly can’t remember most of what they were. If I can’t remember what they are now, how could I have thought they were so important then? What really is important in this life? If I could just take back all of the times I was selfish – times when I thought I needed “me” time or when I thought I wasn’t being valued as much as I thought I was supposed to be – or when I thought I had too much to do to sit down and play a game of chess or cards with Jason, I would do it in a heartbeat.

You see, I’m just not that important in the whole scheme of things. I don’t feel the need to be celebrated any more. I’d rather the focus be on the people I love than on me. They mean the world to me.

If I could just communicate one thing to parents, it would be to cherish and value their family and those ordinary days with their kids. I see parents rushing their kids along or harping at them for one thing or another. It breaks my heart. Don’t realize how much more important those precious treasures right in front of their noses are than getting on to the next store or whatever? When those moments are gone forever – and especially if those children are gone forever – all of a sudden you see things with a new perspective. I know there are a lot of parents who are really trying really hard to do it right and who value their children beyond measure. It just seems like there are also those who forget how short those days are in the rush of adult things they feel they need to do.

Every parent has regrets, I would venture to say, and wishes they had done certain things differently. I have bucket loads of regrets and things I wish I could or had done differently. There’s nothing I can do about them now, and so I just have to deal with it as best I can.

I think I’ll just skip over my birthday this year and see if I can figure out how to reflect – or perhaps deflect – that attention to someone else so they can feel valued and important.

© 2013 Rebecca R. Carney

Taking the time

I’ve been catching up on reading the email notifications I get from blogs I follow. I know, I know. I’ve been slacking off in both my writing AND my reading!

Anyway, I wanted to share a link to a blog I read this morning written by a man whose daughter died three years ago. Like the letter I wrote to Jason on his 19th birthday, Mr. Cartwright wrote a note to his daughter not long before she died, telling her what an amazing young woman she was.

I’m so glad I took the time to listen to that little voice “prompting” me to write that letter to Jason on the morning of his 19th birthday. He didn’t get to see his 20th birthday. The pastor read the letter as a eulogy at Jason’s memorial service.

We have to take the time to tell the people we love how much we love them and how proud we are of them when we have the chance. We have to slow down our busy lives enough to spend meaningful time and have meaningful conversations with those we love. That chance may never come again.

No guilt trip; just a friendly reminder. I’m sure we all try to do the best we can with the time and energy resources we have.

Here’s the link for Mr. Cartwright’s blog post: http://spiritualwalkwithgod.wordpress.com/2013/06/29/its-been-3-years/; and here’s the letter I wrote to Jason on his 19th birthday: https://onewomansperspective02.wordpress.com/writings/

© 2013 Rebecca R. Carney

I Did Not Know What To Say Newsletter Archive

An excellent resource for the bereaved and those who love them.

I Did Not Know What To Say Blog

I Did Not Know What To Say Newsletter Archive

Over the last several years we have provided articles and interviews on a variety of topics on how to assist a loved one through the journey of restoring balance in their life after a loss. I have put together a resource list below for you to explore and/or pass on to a loved one that might benefit from these tools. 

If there is a specific topic that you would like us to include in one of our upcoming newsletters, please email us.
 

Understanding Grief 

Are Grief & Depression the Same Thing? 
by Mark D. Miller M.D.
Dr. Miller explores the differences between Grief and Depression.
 

Helping Dispel 5 Common Myths About Grief
by Alan D. Wolfelt, Ph.D.,
Alan D. Wolfelt’s article describes five of the most common myths about grief. Through understanding and overcoming these myths…

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Forever 19 or “What if?”

Tomorrow is Jason’s birthday. He would have been 31.

31. It’s hard for me to imagine Jason at 31.

In my mind, Jason will always be 19 going on 20. He will always be a young man with so much potential and a bright future ahead of him, the young man sitting on the kitchen counter telling me about his day while I fixed dinner.

Along with other memories and emotions, birthdays after a child dies are reminders of what might have been. The question of “What if?” raises its head. What if things had been different? What if he had just waited a few extra minutes before leaving our house? What if Jason hadn’t died?

What would Jason be doing if he had lived? Would he be married? Would he have kids? Who would he have married? How many kids would he have? Where would he work? Where would he live? Who? What? When? Where? How? Why? Questions, questions. No answers.

I can’t quite get a clear picture of these things. I notice the life progress of Jason’s peers and friends – getting married and having kids, buying houses, getting college degrees, getting or changing jobs, going on vacations, doing their daily lives. I can sort of conjure up an image, a life of what might have been. But it’s very fuzzy and out-of-focus. It’s all conjecture, anyway. My projections are just that – imaginary projections. They are based on the son I knew – the amazing 19-year old, funny, handsome, kind, courteous, thoughtful, intelligent young man – mixed with bucket loads of “what if’s” and “what might have been’s.”

I wish I had had the opportunity to know the “what if’s” in the life of our precious son. I wish I had had the opportunity to see “what might have been.” I wish Jason had lived.

Happy birthday, Jason. I love you with all my heart. I miss you so much.

© 2013 Rebecca R. Carney

Awards

I have been nominated for several awards since starting this blog. I feel like I have neglected to thank those who have so kindly nominated me and to explain why I haven’t followed up on these nominations.

First, let me explain why I haven’t followed through with these nominations. Each nomination comes with a list of items to do – thank the person who nominated you, nominate seven or ten or however many people, say why you’ve nominated them, tell things about yourself, answer questions about yourself, etc. As I said in my previous blog, I’ve really hit a wall in my writing. Writing is not something that comes naturally to me. I have to work at it. For some reason, the requirements associated with these awards feels overwhelming to me and feels like too much. Everything we do takes energy. I feel like I need to put my “writing” energy into writing my blog and so I have decided to forgo the award process entirely. I really appreciate the nominations, though, and the kind thoughtfulness and support that goes along with each one.

Secondly, let me thank those who have nominated me.

I Am Part of the Word Press Family Award: Transformed by the Journey

Most Influential Blogger Award: All In The Day of Me

Beautiful Blogger Award: His Eye Is On The Sparrow and Light in the Chaos

Best Moment Blog: Tersia Burger

The Liebster Award: My Journey’s Insight and Growthlines

Thought Provoking Blog Award: Marcy Blesy – Children’s Books: Lots to Say, Lots to Learn

Lovely Blog Award: For Those Who Weep

Very Inspiring Blog Award: Joy Returns

Candle Lighter Award: Step On a Crack…or Break Your Mother’s Back

Kreative Blogger Award: Step On a Crack…or Break Your Mother’s Back

Thank you to all for your support and kind nominations. (I think I found all of the nominations, but forgive me if I missed acknowledging some.)

liebster-award3 wordpressfamilyaward_2 beautiful_bloggerawardpurple_rev best-moment-award thought-blog onelovelyblog images-19untitled-75 inspiring-blogger-award