It's National Pregnancy and Infant Loss Awareness Day - right in the middle of Breast Cancer Awareness Month and on the same day as Blog Action Day, when bloggers around the country post on a selected topic, which this year is poverty. Stillbirth, again, as always, lost in the shuffle of other issues - the economy, the election, other topics deemed more important, more noteworthy, more acceptable for public consumption.
But dead babies? Are they no big deal? It seems they are only a big deal to pro-lifers who picket outside abortion clinics, holding up their grisly photos for all the world to see.
Why are dead babies, those stillborn and delivered too soon, a big deal only to their grieving mothers and fathers? Today alone, 71 babies will be stillborn in this country. Think about that. That's approximately three 2nd-grade classrooms the size of my daughter's class, vanishing every day. Worldwide, approximately 10,958 babies will be stillborn today. That's about 4,000 more lives than the total population of that town in Alaska we keep hearing about, Wasilla, population 7,028.
How many articles in newspapers, magazines, on TV or online have you seen this year about autism? Dozens, I suspect. How many about stillbirth? One? Two, tops? Unless you are actively searching for news on stillbirth, you'll very rarely find it. While stillbirth takes the life of 1 out of every 115 babies in this country, autism affects 1 out of every 150 children. Why the disparity in the news?
Oh, right, I remember now. It's because stillbirth is about dead babies, and we don't want to talk about that. But if autism is an "epidemic," as I have read in some articles, why is stillbirth, which touches more lives, not?
You - we - can change this. There is currently a bill sitting in the House of Representatives, House Bill 5979, the Stillbirth Awareness and Research Act of 2008. By writing to our representatives, we could ensure that this bill is passed. Passage would require the Secretary of Health and Human Services (HHS) to develop a national, standard definition of stillbirth and a standard protocol for stillbirth data collection and surveillance. This bill would also require the Secretary of the HHS to carry out a national campaign to increase public awareness and knowledge of stillbirth, much as the "Back to Sleep" campaign has done for Sudden Infant Death Syndrome.
We can save babies. We may not ever be able to save them all, but with research, we can certainly save some portion of those 26,000 we lose every year in the United States. No parent should go through the kind of heartbreak I have been through. No parent should spend the rest of her life wondering, 'What if?'
This day is set aside for remembering our little souls, who took a piece of us with them when they left us. Today, and every day, I remember Ben, and I remember Sam and Jack, Sophie, Henry, the twins, Dylan and Riley, and all the other babies who never came home.
Wednesday, October 15, 2008
Tuesday, September 30, 2008
Feeling Complainy
I think I need a vacation. Yes, I've already had one this year, a really lovely one with my sister, but fall is closing in and winter is looming and I hate winter. I'm tired, I'm discouraged, my husband is currently in India and the kids had no school today because of Rosh Hashanah. Mommy needs a break. And a really good massage - I hurt my shoulder a few months ago while I was weight lifting and it has never recovered. Picking my 3-year-old up all day long probably doesn't help. And I've had a nervous eyelid twitch in my right eye for months; it comes and goes but mostly stays.
I didn't want to complain here; I feel I should try to be inspiring or useful, but I'm just not today. And I feel guilty about not posting very often, but I just don't always know what to say. (This is a recurring problem in my marriage, too. What fun.)
More another day...anybody want to propose topics for me to write about?
I didn't want to complain here; I feel I should try to be inspiring or useful, but I'm just not today. And I feel guilty about not posting very often, but I just don't always know what to say. (This is a recurring problem in my marriage, too. What fun.)
More another day...anybody want to propose topics for me to write about?
Thursday, September 11, 2008
Before and After
September 11, 2001, I had just put my 8-month-old daughter down for her morning nap at 9 a.m., and I entered my office to do some work. I turned on NPR, as I always did, and heard that a plane had crashed into the World Trade Center. I figured it must have been a small, private plane that had gotten in trouble, but decided to go downstairs and turn on the TV. There I saw a 2nd plane fly into the other WTC building; there I watched people jumping to their deaths; there I watched, on my hands and knees in front of the TV, crying and praying, the buildings fall down in a mass of ash and fire.
It took me days before I even realized that, as those buildings came down, people were dying inside. Days before I could allow myself to think it. My parents and my husband were supposed to board flights that day, flights that were cancelled. My daughter was scheduled to be baptized two weeks later, and my in-laws, who were to fly over from England, cancelled their flights because of September 11.
In the following days, the world was so quiet. No planes flew over my house; generally dozens did. There were no cars racing down my urban street; the neighborhood was unusually subdued. That's what I wanted after Ben, as well, for the world to stop and acknowledge he was gone.
At the time, I felt that this was most likely the defining moment of my life as an adult, the moment where everything changed for us in America, that we - none of us - would be the same ever again. This was the permanent "Before and After" for my generation, like Pearl Harbor was for an earlier generation.
And although I was stunned by the events of that day, I wasn't surprised. When I was in college, I travelled to England and Ireland, and that was when I "got" the fear of terrorism. This was during the time of the Irish Republican Army, and while travelling through the airport in Dublin, I saw members of the Irish military in their uniforms, with automatic weapons strapped to their bodies. I got it then, a little bit of what it is like to live with the threat of terrorism every day, which much of the world has been doing for generations. Later, I lived in England and commuted to London for work, and was always aware of the terrorist threat, had train service cancelled because of IRA threats and suspicious packages placed in underground stations. I knew, somehow, that something like this day was coming for us.
I remember boarding an airplane for the first time after September 11th, sobbing in my husband's arms as I thought of all those people on those planes, what they must have felt, how frightened they must have been, how innocent they were. I thought of the families left behind and prayed to God to help them find some peace. I remember standing in the Newark airport and seeing New York City on the horizon, with two buildings so obviously gone.
I was wrong, however, about this defining moment for me. September 11th was not the defining moment of my life. Ben's death was my defining moment, my own marker of a time Before, and a life After.
Today, I remember all of them - all those who lost their lives that day, and all the ones they left behind. I remember Ben, and I remember all the babies who, every day, don't come home. I remember that 7 years ago, in hospitals and homes across America and the world, babies died, grandparents died, moms and dads and siblings and aunts and uncles lost their lives, and their deaths have gotten lost in the horror of the terrorist attacks.
I remember you.
Fragile
If blood will flow when flesh and steel are one
Drying in the colour of the evening sun
Tomorrow's rain will wash the stains away
But something in our minds will always stay
Perhaps this final act was meant
To clinch a lifetime's argument
That nothing comes from violence
And nothing ever could
For all those born beneath an angry star
Lest we forget how fragile we are
On and on the rain will fall
Like tears from a star Like tears from a star
On and on the rain will say
How fragile we are How fragile we are
- Sting
It took me days before I even realized that, as those buildings came down, people were dying inside. Days before I could allow myself to think it. My parents and my husband were supposed to board flights that day, flights that were cancelled. My daughter was scheduled to be baptized two weeks later, and my in-laws, who were to fly over from England, cancelled their flights because of September 11.
In the following days, the world was so quiet. No planes flew over my house; generally dozens did. There were no cars racing down my urban street; the neighborhood was unusually subdued. That's what I wanted after Ben, as well, for the world to stop and acknowledge he was gone.
At the time, I felt that this was most likely the defining moment of my life as an adult, the moment where everything changed for us in America, that we - none of us - would be the same ever again. This was the permanent "Before and After" for my generation, like Pearl Harbor was for an earlier generation.
And although I was stunned by the events of that day, I wasn't surprised. When I was in college, I travelled to England and Ireland, and that was when I "got" the fear of terrorism. This was during the time of the Irish Republican Army, and while travelling through the airport in Dublin, I saw members of the Irish military in their uniforms, with automatic weapons strapped to their bodies. I got it then, a little bit of what it is like to live with the threat of terrorism every day, which much of the world has been doing for generations. Later, I lived in England and commuted to London for work, and was always aware of the terrorist threat, had train service cancelled because of IRA threats and suspicious packages placed in underground stations. I knew, somehow, that something like this day was coming for us.
I remember boarding an airplane for the first time after September 11th, sobbing in my husband's arms as I thought of all those people on those planes, what they must have felt, how frightened they must have been, how innocent they were. I thought of the families left behind and prayed to God to help them find some peace. I remember standing in the Newark airport and seeing New York City on the horizon, with two buildings so obviously gone.
I was wrong, however, about this defining moment for me. September 11th was not the defining moment of my life. Ben's death was my defining moment, my own marker of a time Before, and a life After.
Today, I remember all of them - all those who lost their lives that day, and all the ones they left behind. I remember Ben, and I remember all the babies who, every day, don't come home. I remember that 7 years ago, in hospitals and homes across America and the world, babies died, grandparents died, moms and dads and siblings and aunts and uncles lost their lives, and their deaths have gotten lost in the horror of the terrorist attacks.
I remember you.
Fragile
If blood will flow when flesh and steel are one
Drying in the colour of the evening sun
Tomorrow's rain will wash the stains away
But something in our minds will always stay
Perhaps this final act was meant
To clinch a lifetime's argument
That nothing comes from violence
And nothing ever could
For all those born beneath an angry star
Lest we forget how fragile we are
On and on the rain will fall
Like tears from a star Like tears from a star
On and on the rain will say
How fragile we are How fragile we are
- Sting
Monday, September 8, 2008
Pink Rose Award
Monica, over at Hopeful Momma, very kindly gave me a Pink Rose Award, given "to those who inspire you or need to be inspired, to those who have encouraged you or those who need encouragement.” She sweetly said that I am one of the bloggers who encourages her, post babyloss, with my story of loss and my life-and baby-after Ben.
I can't figure out how to post the Pink Rose Award icon on the side of my blog - perhaps I'll figure it out soon. Or maybe someone can tell me how?
Anyway, thank you, Monica, for giving me this. I'm glad I have been of some help to you in your journey.
I hereby give this award to Jen, at The Comfy Place. She has inspired me as she battles cancer and raises her children - she is a remarkable human being. I also give this to C., who, after two devastating losses, is struggling to keep going.
****************************************************************************************
Here's what to do:
1. On your blog, copy and paste the award, these rules, a link back to the person who selected you, and a link to this post: http://smartone.typepad.com/smartone/2008/05/pink-is-my-favo.html. You will find the story behind the Pink Rose Award and other graphics to choose from there.
2. Select as many award recipients as you would like, link to their blogs (if they have one), and explain why you have chosen them.
3. Let them know that you have selected them for an award by commenting on one of their posts.
4. If you are selected, pass it on by giving the Pink Rose Award to others.
5. If you find that someone you want to nominate has already been selected by someone else, you can still honor them by posting a comment on their award post stating your reasons for wishing to grant them the award.
6. You do not have to wait until someone nominates you to nominate someone else.
Thursday, September 4, 2008
Support Early Infant Death Research
First Candle is an organization devoted to making sure babies don't die. They do research and support work relating to stillbirth and SIDS. Over the summer I received a newsletter from them with the news that the website www.goodsearch.com allows users to search the web for free, and donates money to the charity of your choice for each search.
Here's the blurb from the First Candle newsletter: "GoodSearch.com is a new Yahoo!-powered search engine that donates half its advertising revenue, about a penny per search, to the charities its users designate. Use it just as you would any search engine, get quality search results from Yahoo! and watch the donations add up for First Candle!"
I say we give it all a try - anything to help.
Here's the blurb from the First Candle newsletter: "GoodSearch.com is a new Yahoo!-powered search engine that donates half its advertising revenue, about a penny per search, to the charities its users designate. Use it just as you would any search engine, get quality search results from Yahoo! and watch the donations add up for First Candle!"
I say we give it all a try - anything to help.
Monday, August 11, 2008
This Is Not a Fairy Tale
It's a bit like a fairy tale, this story of mine. Not in the "happily ever after" sense, for we all know how my story ends. It's like the original tales, by the Brothers Grimm, where the stepsisters cut off their toes to try to make the shoe fit. Mine begins, 'Once upon a time...' just as all the modern tales do; 'Once upon a time, there was a happy couple with a beautiful daughter, a beautiful home, everything they could ever wish for, except a son. Then one day, the happy couple found out they were to have a son, their perfect family, and they had nothing left to wish for, for their happily ever after was about to come true.'
Except it didn't. And in the aftermath of death, we tried to sort out 'ever after.' For no matter how stark the real stories by Grimm, Cinderella still got her man; Rapunzel, after years of wandering, found her prince; and Hansel and Gretel escaped the witch, who burned to death. The bad met their just end; the righteous prevailed. And in my story, in your story, the righteous don't prevail, though we are left trying to learn how to live with it for the rest of our lives.
I was told by someone very wise, when I asked her how I live with this unimaginable sorrow for the rest of my life, that, one day, Ben's death would become a part of me, like my blue eyes are a part of me. Something I carry with me, always, in every moment. I clung to those words, waiting for the time when that would be true, as it is for me now. But anyone can look at me and see that I have blue eyes; only those I've told can look at me and see Ben's death etched across my face.
His death has become a part of who I am, as that wise woman said, though I wish that part of me wasn't so hard to share with those who don't know. What she didn't tell me - and perhaps what she herself did not know - was that the biggest part of me, my son's death, is the biggest secret I keep. There are no conversations that include, "I'm from Pennsylvania originally, I'm home with my kids right now, been married for 12 years, and have a dead son."
And I pretend I have the fairy tale, the happily ever after. I hide the biggest part of me from all but a select few and wonder how anyone could miss seeing the hollow emptiness I carry with me always.
Except it didn't. And in the aftermath of death, we tried to sort out 'ever after.' For no matter how stark the real stories by Grimm, Cinderella still got her man; Rapunzel, after years of wandering, found her prince; and Hansel and Gretel escaped the witch, who burned to death. The bad met their just end; the righteous prevailed. And in my story, in your story, the righteous don't prevail, though we are left trying to learn how to live with it for the rest of our lives.
I was told by someone very wise, when I asked her how I live with this unimaginable sorrow for the rest of my life, that, one day, Ben's death would become a part of me, like my blue eyes are a part of me. Something I carry with me, always, in every moment. I clung to those words, waiting for the time when that would be true, as it is for me now. But anyone can look at me and see that I have blue eyes; only those I've told can look at me and see Ben's death etched across my face.
His death has become a part of who I am, as that wise woman said, though I wish that part of me wasn't so hard to share with those who don't know. What she didn't tell me - and perhaps what she herself did not know - was that the biggest part of me, my son's death, is the biggest secret I keep. There are no conversations that include, "I'm from Pennsylvania originally, I'm home with my kids right now, been married for 12 years, and have a dead son."
And I pretend I have the fairy tale, the happily ever after. I hide the biggest part of me from all but a select few and wonder how anyone could miss seeing the hollow emptiness I carry with me always.
Wednesday, August 6, 2008
Happy Birthday to my little guy
I've just read Monica's post over at Still Hopeful and am thinking yet again of what might be, and of what is. Yesterday was a year since she and her husband lost Jack, and I am reminded again of the sting of anniversaries. But today marks a happy anniversary for us, James's 3rd birthday. We were expecting him on the 5th, but despite the 6 a.m. induction, he chose not to appear until 12:57 on the morning of the 6th.
I expect I will always think, on this day, no matter how old the two of us get, that if Ben had not died, there would likely be no James. Physically, time-wise, it would have been possible to have them both, born 18 months apart. Had Ben lived, it is very likely we would have an infant now, a child under the age of 1.5. My naive plan to have three children, about three years apart, might have been complete. That dream might have come true.
Today, I can't imagine having three kids - well, no, I can imagine it, but I can't somehow comprehend what life would be like. I am faced with the terrible knowledge that, if Ben had lived, James wouldn't be with us. I can't imagine life with the one, but without the other. And I could never make that choice, if I had to, although I believe that if there were no other choice but to have Ben, stillborn, or not to have him at all, I would take him as I had him.
But today is not about Ben, though he is never far from my thoughts. Today is James's day, and I can't imagine my life without him. Every day I am amazed by how much I love him, how much he lights up my world. I think he came here to make us laugh, which we all need. At three, he loves big trucks, dinosaurs, and making loud noises. He tells me he loves me, gives great "squeeze hugs," and is generally a crazy little man growing up far too quickly. He loves preschool and wearing his "packback" and carrying his lunchbox. He adores Thomas the Tank Engine and his stuffed monkey. He also adores his big sister, who he calls "Diddy." He has changed my world for the better and he is the reason I smile every day.
Happy Birthday, Little Man. I love you, more than you will ever know.
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