Every year, 26,000 babies are stillborn in America. In 2003, one of them was my son.

Thursday, December 30, 2010

Seven Years Without You

There's little to say today, seven years on. Ben is missed, and thought of, as he is every day. Have I healed? Yes, as much as anyone could. I am happy, despite missing Ben, despite loving him fiercely and desperately wanting to know who he would be today.

Seven years. Hard to believe.

That's 2,557 days that he's been gone. 61,368 hours. Seven birthdays. A new baby brother, now in kindergarten, two new cats, plans to move next summer. A big sister nearly 10 years old. Me, on the other side of 40. Lifetimes.

Lifetimes.

I think it's time for this blog to change, but I don't know how it will. I am no longer living so deeply in the land of broken hearts, but I still want to be here to help others, offer support to those for whom this is a new and terrible way of life. Because there is hope, there is life on the other side of grief.

Life. Never the same, but life nonetheless.

I love you, my baby boy. I always, always loved you.

Saturday, December 25, 2010

December 25th

Dear Ben,

I want to wish you Merry Christmas, and this is all I have.

Ben, I miss you.

Love,

Mama

Thursday, December 23, 2010

Tuesday, December 21, 2010

The Longest Night

Winter Solstice. The Darkest Night.

Ten days away from seven years without him.

In the quiet I think of him, talk to him. Miss him.

In the bleak midwinter, long ago, he left, and I stayed, to forever wonder.

Where are you, Ben?


Can you hear me?


Are you here?

Sunday, December 12, 2010

I Promised Myself

This December, I promised myself I would not cry. I promised myself that I was going to be all right for the first time in the seven years since Ben left us.

I promised myself, and I really believed it.

But I was wrong.

We put up the Christmas tree yesterday and James pulled out an ornament from our box of decorations, with Ben's name on it. "This was for my brother," he said, "but he died. I wish he didn't die."

Ah. Me too, baby. Me too.

And so I find myself today, feeling emotional and not wanting to. Thinking of my friend Elizabeth, whose birthday is today, only she, too, is gone, and her absence is one of two gaping holes in my life that will never be filled again.

No, I don't want to cry. I promised myself.

But I lied.

Wednesday, December 8, 2010

Monday, December 6, 2010

And the Winner Is...

The winner of the anthology They Were Still Born: Personal Stories About Stillbirth is...

Ceil.

Please contact me at virginiawilliams(at)yahoo(dot)com with your full name and mailing address and I will put the book in the mail to you.

Thursday, December 2, 2010

Watch this Video; Help People Living with HIV

Yesterday was World AIDS Day. In recognition of that, Starbucks has a music video on their site by the musical group The Killers. For every view of the video, Starbucks will donate 5 cents to the Global Fund to Fight AIDS in Africa.

Click, watch, and when you're done, pass it on. http://link.brightcove.com/services/player/bcpid609428906001?bctid=691378821001

*Don't forget, tomorrow is the last day to enter the drawing to win the book They Were Still Born: Personal Stories About Stillbirth. 

Thursday, November 25, 2010

Happy Thanksgiving

"It is literally true, as the thankless say, that they have nothing to be thankful for. He who sits by the fire, thankless for the fire, is just as if he had no fire. Nothing is possessed save in appreciation, of which thankfulness is the indispensable ingredient. But a thankful heart hath a continual feast." ~ W. J. Cameron

Monday, November 22, 2010

Mundane Monday

My local newspaper runs a column each week called "Monday Moaning." Readers can write in with whatever it is they want to complain about, and the paper runs it. This really bugs me, though the paper tries to counter it with a "Thankful Thursday."

I think we've got enough complaining in this world without giving it a forum. But then again, I have been known to use this space to do a little complaining of
my own.

So today I was running around doing errands, thinking about "Monday Moaning" and just how mundane today is...hence, Mundane Monday. Here's what I did:

1. Laundry. 4 loads.
2. Trip to Target for necessities and Christmas presents.
3. Grocery store run.
4. Exercised despite not feeling like it.
5. Listened to a podcast.
6. Did the school run, times two.
7. Tidied up, but not very much.
8. Phoned a friend.
9. Got caught in the rain.
10. Did a lot of dishes.
11. Made dinner.

So you see, yes, it was a very Mundane Monday. How about you?

*And don't forget to enter the giveaway for the book They Were Still Born: Personal Stories About Stillbirth, below.

Thursday, November 18, 2010

They Were Still Born: New Book Givewaway

I  received my long-awaited copy of the new stillbirth anthology They Were Still Born: Personal Stories about Stillbirth on Saturday.




Yes, I'm a contributing writer, and I'm pleased to say my chapter, What No One Tells You is the first chapter in the book. Contributors include Kara L.C. Jones (aka, Mother Henna), Angie Yingst (still life 365), Joanne Cacciatore (the MISS Foundation), and Sherokee Ilse (Wintergreen Press), among others. The book is edited by the fabulous Janel Atlas who lost her daughter Bea, and has a foreword by Elizabeth McCracken (An Exact Replica of a Figment of My Imagination).

If you'd like to receive a copy of this book, leave your name in the comments section below, as well as the name of the baby in your life who was still born. Contest will remain open until December 3rd, when I will draw one winner's name out of a hat.

Friday, November 12, 2010

Holiday Ornament Swap

Jumping in at the last minute here with news of this holiday ornament swap for babyloss parents. Jenni, of Demeter's Feet, is organizing this swap of handmade holiday ornaments, made by a babyloss parent for a babyloss parent.

Here's what Jenni wrote on the website, Remembering Together Swap: "Sometimes our “in real life” people don’t understand how much extra TLC we need at this season, or they fail to remember our missing children at those holiday gatherings. The gift-giving, child-centric nature of Christmas and Hanukkah can be particularly painful when you are missing a little one. Marking the end of the year and the passage of time without your baby can also be incredibly difficult. For some, the spiritual or religious elements of this season can be trying, when struggling with faith in the face of tragedy.

Our ornament swap is one way for babyloss families to give and receive support during this tough time of year."

Head on over to her site by THIS Monday, November 15th, to sign up to receive, and create, an ornament. 

Friday, November 5, 2010

Funny How Things Haunt You

I am sitting in my favorite coffeeshop as I type this, working on a book I am writing, about Ben.

As I started packing up to leave just now, a song came on the radio: "Life for Rent" by Dido.

That's the song I was listening to as I pulled into a parking space at the hospital the morning Ben died. The last song I listened to before I knew he was gone.

I haven't liked Dido since.

Wednesday, November 3, 2010

Sunday, October 31, 2010

Day of the Dead

It's the last day of my 31 days of posting for stillbirth awareness. I am both relieved and torn: some days I feel as if I dwell in this land of broken hearts far too much, while on others I simply acknowledge that this is my life. Or part of it, anyway.

Today is also All Saint's Day, tomorrow is the Day of the Dead. I don't know much about the Day of the Dead, but it seems a fitting time to end my month of blogging. I follow no rituals for this day, or tomorrow, other than tonight's trick-or-treating, handing out candy to little goblins, princesses, and skeletons. But I remember the ones I miss, who are no longer here, who have changed me.

I don't have an altar for Ben, though sometimes I wish I did. Other days I think no, it would be too much for me.

Nor do I have a place to go, to pay homage to him, to sit by his grave and offer him food and drink, candles and light. What is left of him is in my bedroom, in a wooden box sealed shut.

We have it all wrong here in America: bury the dead or scatter their ashes and do our best to forget. How do you forget the child you carried inside you, who kicked you and hiccuped and kept you awake at night, then slipped from your body silently, never to take a breath?

Yes, I want an altar, a gravestone, an offering. A way to honor one of the loves of my life.

Saturday, October 30, 2010

Stillbirth--We Need to Know More

I've said it before and I'll say it again: we don't know enough about why stillbirth occurs, and how to cut down the numbers. People are speaking up about the lack of research, the dismissal of our grief, trying to make a difference.

Kate Greenwood, a research fellow at Seton Hall's Center for Health & Pharmaceutical Law & Policy, posted on the Seton Hall Health Reform Watch blog about this very issue. Here's an excerpt of what she says; here's the link to the full post.



"While the ubiquitous pink ribbons (and pink everything else) ensure that everyone knows that October is Breast Cancer Awareness Month, less well known is that it is also Pregnancy and Infant Loss Awareness Month[1], proclaimed so by President Ronald Reagan in 1988.  As I wrote last October, about 1 in every 160 deliveries in this country ends in a stillbirth, and all too frequently no one can say why.  Stillbirth is a “largely unstudied …  problem in obstetrics.”

Encouragingly, the work of the physicians and scientists participating in the National Institute of Health’s Stillbirth Collaborative Research Network (SCRN) is beginning to bear fruit.  The August 2010 issue of the journal Obstetrics & Gynecology included an important article in which the SCRN investigators presented their “standardized method to assign probable and possible causes of death of stillbirths based on information routinely collected during prenatal care and the clinical evaluation of fetal death.”  Rigorously defining and more accurately determining causes of fetal death will both facilitate research and have useful clinical implications.  As the authors note, “[a]ccurately assigning a cause of fetal death is critically important for counseling grieving families.”

Friday, October 29, 2010

Poetry for the Grieving

The Five Stages of Grief

The night I lost you
someone pointed me towards
the Five Stages of Grief.
Go that way, they said,
it's easy, like learning to climb
stairs after the amputation.
And so I climbed.
Denial was first.
I sat down at breakfast
carefully setting the table
for two. I passed you the toast -
you sat there. I passed
you the paper - you hid behind it.
Anger seemed more familiar.
I burned the toast, snatched
the paper and read the headlines myself.
But they mentioned your departure,
and so I moved on to
Bargaining. What can I exchange
for you? The silence
after storms? My typing fingers?
Before I could decide, Depression
came puffing up, a poor relation
its suitcase tied together
with string. In the suitcase
were bandages for the eyes
and bottles of sleep. I slid
all the way down the stairs
feeling nothing.
And all the time Hope
flashed on and off
in defective neon.
Hope was a signpost pointing
straight in the air.
Hope was my uncle's middle name,
he died of it.
After a year I am still climbing,
though my feet slip
on your stone face.
The treeline
has long since disappeared;
green is a color
I have forgotten.
But now I see what I am climbing
towards: Acceptance
written in capital letters,
a special headline:
Acceptance,
its name is in lights.
I struggle on,
waving and shouting.
Below, my whole life spreads its surf,
all the landscapes I've ever known
or dreamed of. Below
a fish jumps; the pulse
in your neck.
Acceptance: I finally reached it.
But something is wrong.
Grief is a circular staircase.
I have lost you.

              --Linda Pastan

Thursday, October 28, 2010

A Letter to Family and Friends: What Not to Say after a Stillbirth

*I've written on this topic before, but it's an important one, so I'm doing it again in the hope that families and friends of couples who have a stillbirth will find it and educate themselves on what not to say to those who have suffered a loss.

Dear Family and Friends,

     Please don't tell me that my baby's death was for the best. I miss that child more than I could ever say, and the death of a much loved, much wanted child is never for the best.
     Please don't tell me I have an angel watching over me. I don't want an angel, I want my son. If I have living children, please, please don't say, "Well, at least you have your other child(ren)." Children aren't interchangeable, and though I know how lucky I am--and I am so very grateful for those children--my heart is permanently broken because my new baby is gone. You wouldn't tell me, if a sibling died but I still have living brothers and sisters, "Oh well, you still have your other siblings." Would you? People are not interchangeable.
     Please don't tell me I can always have another. You don't know that, for sure. Another pregnancy may not be possible for me, and even if it is, another child will never take away the hole in my heart left by this baby's passing.
     Please, don't tell me my child died "for a reason." What possible reason could he had died for? There is no reason on earth that could make his death feel better for me, ever. Babies aren't supposed to die.
     If you don't know what to say, simply say "I'm sorry. I'm thinking of you and I hate that this happened."Don't be frightened of my tears, and don't think that if I cry you have brought up the sorrow--it is always there, and I am most likely crying every day. I need to cry. It's part of my healing. Allow me that.
     I will never get over this. I will survive the intense sorrow and pain, but I will carry my child's death with me all my life. Every Mother's Day, every Father's Day, the holidays, the anniversaries and birthdays not shared will hurt. Please remember them, and remember my child. Speak his name. Saying my child's name is one of the greatest gifts you could give me, for I don't want him to be forgotten.
     I am not going to be the same person you knew before. Respect that. In the first year, I will not want to attend baby showers, see babies, see pregnant women, will not return to life "as normal." Give me time and space to return to the world as I am able.
     Let me know that you are thinking of me, with phone calls, cards, even e-mails. Understand I may not feel up to replying but I appreciate knowing I have not been forgotten.
     There is no timeline for grief, no magic day when I will be "over it." Please don't tell me to move on; I need time to look to the future, but how much time I do not know.
     Remember this: my child was real; I held him in my arms, took his pictures, kissed his head. I will miss him every day of my life.

Wednesday, October 27, 2010

U.S. News & World Report - Stillbirth Can Be Devastating, Unpredictable

Despite the rather obvious title of the article, I'm still impressed that U.S. News & World Report posted an article about stillbirth on their website.

The article references Dr. Alexander Heazell (mentioned in a post two weeks ago, Words from a Doctor About Stillbirth), who lost his first child, Jack, to stillbirth at 26 weeks.

The article states this:

"What is known is that stillbirths that occur before 32 weeks tend to result from different causes than those that occur later in pregnancy, said Dr. Alan Fleischman, medical director for the March of Dimes Foundation.

Factors that contribute to stillbirths earlier than 32 weeks are often similar to those that raise the risk of premature birth: smoking, alcohol use, obesity, clotting or metabolic problems and kidney or liver disease in the mother, Fleischman said.

During the final weeks of pregnancy, stillbirth is often due to a catastrophic problem with the placenta or the umbilical cord, including placental abruption, when the placenta sheers off the uterine wall, leaving the baby without oxygen and nutrients.

Little can be done to prevent these types of stillbirths, Fleischman said. But some obstetricians recommend mothers "count kicks" at the same time every day to monitor how often the fetus moves. If movement drops off noticeably, mothers should seek medical attention in the hopes of delivering a baby in distress before it's too late."

Even if I had gone into labor with Ben before he died, that knot in his umbilical cord would probably have killed him. He may have already experienced oxygen deprivation because of that knot, meaning brain damage. I will never know. So far as anyone could tell, he was normal, perfect. Even with vast quantities of research into umbilical cord knots, nothing may have saved him. Perhaps nothing would have changed his outcome, but I dearly wish I could change the outcome for someone else.

Tuesday, October 26, 2010

After a Stillbirth: How Did Your Marriage Survive?

I'm working on an article on couple communication after a stillbirth for Babies Remembered magazine. It's hard to look back on the two years after Ben died and remember how ineffectively my husband and I communicated. We were both so lost in our grief and unsure how to help each other. Too tired, too worn, sometimes, to even begin to think of helping the other. I'm not proud of that time, not at all.

I stopped speaking to him, other than to say those things truly necessary. I didn't talk to him about how I felt, ask him how he felt: I simply tried to keep moving, to find the future, to stop hurting. I only wanted to stop hurting. Little did I know that by not talking to him, I was making the hurt worse for both of us.

I referenced this study a few months ago, which stated that couples who experience a miscarriage have a 22% higher risk of breaking up over a 15-year period, while those who experienced a stillbirth had a 40% higher risk of breaking up. My reaction to it was: no kidding. But when someone told us something similar 7 years ago, neither one of us believed Ben's death would harm our marriage.

We were so wrong. We've repaired the damage now, but it took a long, long time. Some days the trouble rears its ugly head, the same things we experienced then, and we are thrust back into those dark days of being unable to communicate, if only for a few hours. It's damn hard work, fixing a broken marriage, healing a broken heart.

I wish I had fully realized that men and women grieve differently, I wish I had fully acknowledged that my husband and I were going to go about mourning Ben differently. That his way was not wrong, any more than my way was right. I wish I'd known to keep talking to him, I wish I'd been able to let him break down when he needed to.

Looking back, what do you wish you had known about keeping your partnership intact?

Monday, October 25, 2010

No Psychological Risk in Children Born After a Stillbirth

This study on children (and their mothers) born after a stillbirth, is from July 2009 (hmm...am I a little behind? Yes.), but it's still interesting.

When I was pregnant with James, I (and my husband) was terrified that, among many other things, we would view the new baby as a replacement, or that we wouldn't be able to love him as much as we loved Ben, that my anxiety during the pregnancy would have a negative effect on him.

None of that came true: James is his own, unique individual, happy-go-lucky, sweet, funny, and one of the loves of my life. I can't imagine not having him here.


So I was interested in reading about this study, from The Journal of Child Psychology and Psychiatry, of mothers who experience a stillbirth and go on to have another child. It states that "There is no evidence that children next-born after stillbirth are clinically at risk compared to children of non-bereaved mothers."

But it goes on to say:

"However, the study did find evidence of less optimal mother-child interaction. Stillbirth can be a major psychological trauma to parents. Anecdotal accounts have suggested that children born subsequent to stillbirth of a sibling may be psychologically vulnerable. . . . 
The researchers found no significant between-group differences in child cognitive or health assessments, or in teacher-rated child difficulties. However, mothers in the index group reported increased child difficulties, in particular peer problems, and there were higher levels of maternal criticism of the child's actions."

I'm not sure I understand why a mother would be overly critical of her rainbow baby, but perhaps it's not for me to understand. All I know is I adore my rainbow baby, I'm no more critical of him than his sister, and that James has brought me more joy than I could have ever dreamed of after Ben died.


I know, without a doubt, just how damn lucky I am to have him. I wouldn't change him if I could and every day I say a prayer of gratitude to whatever gods there be that I have all of my children in my life.


For those of you who have had a rainbow baby, how do you feel about what this study says? Does any of it resonate with you?

Sunday, October 24, 2010

1,200 or 10,958

My husband and I started to watch a movie last night, and during the previews, an ad came on about the number of deaths each day in the U.S. due to cancer from cigarette smoking. Perhaps you've seen it.

1,200. 

I remarked to my husband, "That really isn't very many."

For something self-inflicted, he replied, it really is. And I suppose he's right, but you know where I'm going with this.

10,958 babies stillborn every day.

Why does no one make a commercial about that?

Saturday, October 23, 2010

Traumatic Experiences and Resiliency Study (T.E.A.R.S.)

Joanne Cacciatore, a leading advocate for stillbirth families and founder of the MISS foundation, is looking for individuals who have experienced the loss of a child, whether they be parents, grandparents, aunts, uncles, siblings, or friends, to participate in a study about resiliency.

From the T.E.A.R.S. website:

"We are a team of researchers from Arizona State University,  University of Nebraska-Lincoln, and Austin College. We are exploring the experiences of those aged 18 and older who have experienced the death of a child.  The second wave of the study will explore the experiences of those who have experienced the deaths of other significant people such as partners, parents, siblings, grandchildren, and others.

The purpose of this study is to determine the individual, familial, and societal effects of significant loss and to improve standards of care to the bereaved and a model of compassionate caregiving and intervention that fosters resiliency at every level.

You can now participate in the T.E.A.R. Study here!"

Friday, October 22, 2010

Thursday, October 21, 2010

The Grief Blog

A new-to-me resource for all who grieve the loss of anyone they love. Run by a mother-daughter team of psychotherapists, Gloria and Heidi Horsley. They have a blog, answer questions, run a weekly radio show and have all sorts of articles for dealing with the grief of losing a stillborn child, a parent, sibling, spouse, and more.

We can use all the help we can get as we travel this bumpy road.

Wednesday, October 20, 2010

Causes of Stillbirth

The causes of stillbirth are many. For some, like me, their baby will die because of a knot in the umbilical cord, or a cord wrapped around the neck.

For others, they will never know what happened, why their baby died.

If you look into it, do a Google search on stillbirth, you will find articles on an increased risk of stillbirth after IVF, after chemotherapy for childhood cancer, chromosomal abnormalities, gestation growth problems, placental abruption, on and on and on.

And as mothers, we blame ourselves. For not paying enough attention, for not knowing when our baby died, for not knowing something was wrong. But all of these things were out of our control. No blame required.

I know, without doubt, that we need to know more, have more research done, more studies, more warning signs identified. Until we have national momentum to eradicate stillbirth, we will never decrease these numbers. Until we have enough people who care, who call attention to the numbers, it will never change.

Tuesday, October 19, 2010

Sometimes

Sometimes, there is nothing to say, even when the grief is fresh and raw.

Some days, it is enough to sit with sorrow, let it wash over you until it smooths the rough places, much as the ocean does to the rocks and shells it pushes up on shore.

Some days, the sorrow is more of an ache, a presence, always there, but manageable, while other days it is a sharp blow to the gut causing you to double over with pain so intense you feel you might not manage it.

It can take years to process the grief, years to learn to live with it, years to realize that though it is part of you every day, not every day will be like the early months of learning to be without. The days when the sorrow was so intense it carved your insides out of your body, leaving you a hollow, aching shell collapsing inward.

It gets better, I promise you. The grief will lessen, and you will learn to keep moving despite it. You will begin to see the flowers again, notice the warmth of the sunshine on your skin. Even the guilt you feel for noticing the flowers and the sun will subside as you learn that life is still beautiful, still worth living for.

Yes, it gets better. But it will never be the same.

Monday, October 18, 2010

One Day

One day, you will wake up and realize you are still breathing, though moments before it seemed impossible.

One day, you will hear yourself laugh, then catch yourself, stopping short, gasping in sorrow. How could you laugh, after this? But laugh you will, and you will say a silent thank you to whatever gods there be, that such a thing is still possible.

One day, you will make a decision about the future of your life and know that it includes the sorrow you feel now, not that you have moved through, moved on, or gotten over it--simply that life includes all that you now know. That happiness and missing someone aren't mutually exclusive. The two can be combined, bittersweet, the knowledge of one tamping down the vitality of the other.

One day, you will realize that you have done the impossible: you have survived, simply because you are still here.

Sunday, October 17, 2010

Perhaps They are Not Stars

Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.

      - Eskimo Proverb

Saturday, October 16, 2010

A Leave Taking*

I, who never kissed your head,
Lay these ashes in their bed;
That which I could do have done.
Now farewell, my newborn son.
  
     - by Yvor Winters
 
 *Found on the website MoreShortPoems.

Friday, October 15, 2010

Bitter and Sweet

This morning I had coffee with a friend who lost her son a year ago tomorrow. R. was stillborn at full-term, and they don't know why. My friend blames herself for his death, thinks she did too much in the last few months, didn't rest enough, didn't pay enough attention.

She is learning to live with a broken heart.

And though I can tell her it gets easier, there is only so much I can do, for until you arrive at "easier," it is only . . . hard. Some days are better, some days are worse, but one day you find you are still alive, still here, you haven't quite survived it--not so you could leave it in the past--but you are surviving it, here and now, moment by moment.

As she learns to live with her broken heart, she is trying to look forward, to believe that the child she now carries will be born, alive and healthy, in about six more weeks. I remember the terror she feels now, the guilt for having another child, the longing for both of her sons to be healthy and strong and alive. Knowing that will never be possible.

While I sat with her I thought of an acquaintance, in labor today, right now, at this very moment. Hoping that her innocence will not be shattered today, that her boy goes home, alive and well.

How hard it is, some days, being alive, knowing too much, fearing the worst, wanting the best.

For 10,958 mothers in the world, today will be the worst day of their lives. And for them, my heart is breaking even as I continue to hope for the women I know waiting to deliver their own healthy miracles.

This is life: the bitter and the sweet, sometimes so closely intermingled as to be indistinguishable one from the other. This is what it means to be alive.

Thursday, October 14, 2010

Stillbirth Outnumbers SIDS By 10 to 1

Midwifery Today has an article excerpt on their home page from Issue 74 of the journal of the same name. The article, written by Jeska Vannoy, discusses stillbirth, the lack of research into its causes, and the fact that the numbers of stillbirths are rising.


I find it so hard to accept that so little is being done to prevent and research stillbirth and its causes. Actually, I find it horrifying.

From the article:

"Unexplained stillbirth in late pregnancy is the single largest cause of perinatal death in the Western world. In the United States alone, approximately 39,000 babies of 20 weeks gestation or more died last year. Globally, 4.5 million babies never took their first breath. Sudden Antenatal Death Syndrome (SADS) has risen 20% in the last 10 years, despite "advancements" like 3-D ultrasound, increasing rates of labor induction and a rising cesarean section rate. These death tolls are estimates because stillborn babies aren't counted in any data on child death. Infant mortality rates in the US do not include stillbirth rates. Statistically, stillborn babies are not considered infants or children."


I also find it unfathomable that the 7 lb, 10 oz, 19.5" brown-haired baby boy who looked so much like my husband is not considered a real child. But I know that, for many people, Ben is simply a figment, a shadow, an almost.

But I did not feel him kick me for nine months, I did not hear his heartbeat, feel his hiccups, deliver him, to have someone tell me he was never real. I know differently. Had he not died, I would have carried him out into the world two days after his birth.

I wish the rest of the world knew that too.

Wednesday, October 13, 2010

Tuesday, October 12, 2010

Light a Candle on October 15th

Friday is Pregnancy and Infant Loss Awareness Day--sponsors encourage those who have lost an infant, or who know someone who lost an infant, to light a candle at 7:00 p.m. in their time zone to start a 24-hour wave of light.

I will be lighting a candle for Ben and Robertito, whose parents will be marking the first anniversary of his death the following day.

Who will you light a candle for?

Monday, October 11, 2010

How It Changed Me

I couldn't begin to tell you how many times I have wondered if those who knew me before Ben's death have noticed the change in me since. I wonder if that change I feel is pronounced or subtle, for though I feel the change to my very core, I know I've tried to hide it, to pretend as if I am better than I am.

For that is what I was taught to do.

And then I wonder how anyone could not notice the change in me, if they are paying the slightest bit of attention. But I also know how few of us pay attention, really, instead rushing about in displays of busy-ness that make us feel important, needed, useful. That fend off the loneliness.

Though I cannot begin to guess if anyone sees that I am different, I am.

I am older now, more weary. I have been someplace many people never go, for until you lose a child, there is no comparison, I think: no way to say, oh, my father died, so I know just how you feel. I don't think you do. You expect to lose your parents, just as you expect your children will outlive you.

Part of me died when Ben did. There has been some regrowth in that dead tissue, but mostly it is brown and hard, a scab and scar, tissue that will not heal. Never regrow. I suspect that if you sliced through my skin, near my heart, you could see that brown, mottled place inside; proof of damage done.

I am far more fearful of accidents and illnesses, of losing another child. There is almost nothing I take for granted any longer; an innocence has been lost, and I don't like it.

I am full of doubt. About God, fate, faith, what I believe. I've become a skeptic and, though I don't much like it, see no way out of uncertainty. And while I have my fair share of doubts about any kind of afterlife, I admit to jealousy of those I know and love who have died: why is it, I wonder, that they get to be with my boy now and I don't? It isn't fair.

Though maybe heaven, if it exists, doesn't work that way.

All my life, the only thing I will ever want again, is to be with Ben.

Can they see it on my face, the changes losing my son, birthing a dead child into the world, has made? I don't know. But they are there.

Sunday, October 10, 2010

Words From a Doctor about Stillbirth

Dr. Alexander Heazell, a clinical lecturer in obstetrics in the U.K., is one of us. The father of a stillborn child. And he wants the medical community, society, the world, to end the silence about stillbirth. 

In a recent edition of the British Medical Journal, Heazell writes about his son's stillbirth, noting that, in the UK, there is an average of 10 stillbirths daily, or 4,000 a year--which he points out is the number of babies one hospital might be expected to deliver in a year. He says such deaths are "under-researched and under-prioritized" because of society's reluctance to deal with stillbirth out in the open.

In an article I found on www.EmaxHealth.com, Heazell is quoted, “Thirty years ago, no one talked about cancer. Today the diagnosis and treatment of cancers is improving all the time. If parents are brave enough to speak, and doctors, midwives and policy makers courageous enough to listen to them, then the barriers to reducing the number of these deaths can be overcome. In time stillbirth, like cancer, will no longer be taboo, but a condition that’s openly debated, researched, treated, and prevented.”

Saturday, October 9, 2010

A Film About Stillbirth

I stumbled on information about a stillbirth film this week. The film, titled "Peekaboo," is in production in the UK. The production company, Big Buddha Films, bills itself as an "independent film company that focuses on making films with a strong female voice, that tackle human dilemmas, and show the vulnerabilities of human existence."


I'm not sure I can envision a film on stillbirth, and I'm not even sure I'd want to watch one. (Having lived through it is enough.) It's an interesting idea, however, and I think it might do some good to raise awareness.

Readers, what are your thoughts on a stillbirth film?

Friday, October 8, 2010

Babies Remembered

Sherokee Ilse, who is one of the foremost authorities on stillbirth advocacy in the U.S. (co-chair of the International Stillbirth Alliance, author of books and articles on stillbirth, president of Wintergreen Press, and much more) offers a (fairly new) magazine for babyloss parents, Babies Remembered.

Some of the topics she has covered include hospital support, Mother's and Father's Day, and dealing with the holidays.

The first three issues of the magazine are available on her website for free download; all issues after that are available for $12 on her site.

These are excellent resources for parents and families and another valuable tool for anyone dealing with babyloss.

Thursday, October 7, 2010

What If?

What if 5,479 teenagers died suddenly every day, for no apparent reason?

That number is half of the approximately 10,958 infants who are stillborn every day in the world. Approximately 50% of stillborn babies die without any known cause.

Do you think the world would sit up and take notice? Do you think doctors, medical researchers, governments would take action? Do you think there would be an outcry?

I do.

I also think the world would demand answers.

We are losing 10,958 infants to stillbirth every day. When, I ask you, will someone take notice and do something?

Wednesday, October 6, 2010

Stillbirth by the Numbers

If you're new to stillbirth issues, the numbers are shocking. To those of us who have traveled this road for far too long, the numbers no longer shock. They depress. They mystify--if the numbers are so high, why is there not more awareness, as there is for SIDS, for autism, for breast cancer? So here they are, the numbers of stillbirth, in black and white.

- there are 26,000 stillbirths in the U.S. each year
- there are 4 million stillbirths in the world every year
- there are 900,000 early pregnancy losses in the U.S. each year
- there are nearly 20,000 neonatal losses each year in the U.S.
- approximately 1 in 115 births will result in a stillbirth in the U.S.
- this equates to one stillbirth every 20 minutes
- in Australia, England, Wales, Northern Ireland, the rate of stillbirth is approximately 1 in every 200 births
- in Scotland the rate of stillbirth is approximately 1 in 167
- about 50-60% of stillbirths will never be explained


Tuesday, October 5, 2010

What Remains






This is what I have of Ben. A small wooden box of ashes.

A box that, at some point in their lives, and more than once, both of my living children have picked up, shaken, and asked me what's inside.

When I don't reply with an answer to their question, they normally say, "Sand?"

And I say, "Yes, something like that."

The other day James asked if we could open it, and I said no. "Why not?" he asked.

I replied, "Because everything inside would spill out."

"But you could put it back in again," he said.

How do you explain that this mysterious little box, so fun to shake and hear the "sand" inside, is what remains of the brother he will never get to know? How do you explain that his parents chose to burn the body of that brother so that, when we move from this place, we could take him with us?

I don't know.

There are so few answers to the questions that remain forever.

Monday, October 4, 2010

Searching for the Answers to Stillbirth

I came across an article written in March 2006 by journalist Suzanne Pullen of the San Francisco Chronicle and wanted to share some of it here with you. Ms. Pullen lost her son Avery in 2005 at 24 weeks.

She cites statistics I have mentioned in earlier posts and backs up my hope--the hope of stillbirth parents everywhere--that more research will be done into stillbirth. Here are a few excerpts from her article: (complete article can be accessed here)

"Searching for answers will provide little solace to many parents because so little research has been done on the causes of stillbirth -- classified by most in the medical community as the death of a fetus at or beyond 20 week's gestation. The efforts of many researchers have been stymied by the lack of standardized methods of reporting stillbirths and the collection of data from hospital to hospital, county to county, state to state. Fetal autopsies -- which are not covered by all insurance companies and have no national protocol -- are not required by law or hospital policy unless foul play is suspected."

And:

"Stillbirth has been an extremely under-researched area," said Dr. Uma Reddy, an OB/GYN with the National Institutes of Health. "There is a huge gap in information."

Why? Why is stillbirth so under-researched? When will people understand that something needs to be done?

I spoke this morning with the husband of a friend. He and his wife lost their second child, a son, at full-term just one year ago. They don't know why he died. She is now pregnant with another son and they are, of course, terrified. Neither of them hail from the U.S.; both come from different European countries. My friend's husband, a scientist and Ph.D., told me how shocked he was at the statistics for stillbirth in this country. In their native countries cases of stillbirth are much, much lower. Why? He thinks, perhaps, medical professionals in their native countries have more awareness of the issue, pay more attention to risk factors.

Yes, it's anecdotal, but--what if he's right?

We can cut the numbers of babies stillborn every year down dramatically, if we, as a nation, only have the will.

What will it take?

Sunday, October 3, 2010

Shades of Gray

A few days ago I put up a post about the difference between stillbirth and miscarriage, after I had a friend refer to Ben's death as a miscarriage.

Several readers commented that, technically, their losses were somewhere in between a miscarriage and a stillbirth, in a strange gray area where there are no appropriate words in the vernacular to describe what they endured. Even though they had vaginal deliveries and saw and held their children. One reader's sons were born at 17 weeks gestation, within those shades of gray.

Another reader's son was born at 16 weeks gestation and took one breath. Only one.

And yet another delivered her twins in the UK, where a miscarriage is classified as a loss before 24 weeks. Her girls were delivered at 23 weeks. One of them lived, one of them died.

What can we learn from all this, you ask? I think we learn that there are few areas of black and white in this world, that we need compassion more than we need absolutes. We learn that loss takes many forms and cuts far deeper than many of us can ever know.

We learn that numbers mean almost nothing at all when faced with unfathomable grief.

Saturday, October 2, 2010

Online Advocacy for Stillbirth and SUID

I have posted this before and I will keep posting it until something happens. First Candle and the CJ Foundation for SIDS are partnering to have House bills HR3212 and S1445 implemented into national law in the U.S.

This is the Stillbirth and SUID Prevention Education and Awareness Act. This bill would "standardize investigations of stillbirth and sudden unexpected infant/childhood deaths up to age 4, create a national registry for these tragedies, track risk factors, fund public health messages and provide grief support services for families affected." (from First Candle's website)

Please go to First Candle's site and use their Online Advocacy form to write letters to members of Congress who have the ability to pass this into law and make a difference for the thousands upon thousands of parents who will experience a stillbirth in years to come.

Friday, October 1, 2010

National Pregnancy and Infant Loss Awareness Month

October is National Pregnancy and Infant Loss Awareness Month. It is overshadowed by Breast Cancer Awareness Month but, in my view (as the mother of a stillborn son and the friend, niece and daughter of breast cancer survivors--and victims), no less important.

In honor of Awareness Month, I am going to blog every day about stillbirth issues. (Although I might throw in a Wordless Wednesday photograph if I need a break from the sound of my own voice.)

I would love for my readers who have been hiding out to de-lurk, say hello, and tell me why you're here. Tell me who it is you are missing.

Tuesday, September 28, 2010

What You Should Know About Stillbirth and Miscarriage

Because there is a difference, and yes, it matters. At least it matters to me, as someone referred to the loss of Ben yesterday, and the loss of a friend's full-term son, as "miscarriages."

And I am not here to talk about whose grief is worse, that of a mother who had a miscarriage or that of a mother who had a stillbirth. We get so competetive about grief: my loss was worse than yours, I lost more than you did.

That is not a place I want to go. But I do want to clarify, for any reader who may have come here not understanding that a miscarriage is not a stillbirth. Calling Ben's death a miscarriage takes away some of his reality--for he was a full-term child with a name, a weight (7 lbs, 10 ozs.), a height (19.5"), and hair (brown). I will never know the color of his eyes. He was long and lean, had long fingers like mine, narrow feet like his father's. I held him. My husband took pictures of him, we undressed him, we kissed him and rocked him. You cannot do this with a miscarriage.

So, what IS the difference, you ask? These are the basics:

* A miscarriage is the loss of a child before 20 weeks gestation. (This is the US definition; I realize in other countries, like the UK, a miscarriage is a pregnancy loss before 24 weeks.)
* More than 80% of miscarriages occur before 12 weeks gestation.
(For more info, go to BabyCenter.)

* A stillbirth is the loss of a pregnancy after 20 weeks, or 24 weeks in the UK.
* In a stillbirth, the baby has died in utero before delivery or during delivery.
* Yes, a woman who has a stillbirth has to deliver her child, most often vaginally as doctors prefer not to do a cesearean in these cases, if possible. (Did you get that? I went into labor and delivered my son just as if he were alive.)

Yesterday I also found an article online, from England's Daily Mail newspaper. This paper is not exactly, er, known for its journalistic integrity, and the article reflected that. A British actress, Kym Marsh, discussed the "stillbirth" of her son, Archie Jay, in the article.

The thing is, Archie Jay was BORN ALIVE. He died shortly after birth.

I believe accuracy matters. Perhaps I'm being pedantic angry anal, but that's who I am. Words matter. Accuracy matters. My son's life mattered.

Friday, September 24, 2010

Born HIV Free Campaign

"Every minute of every day, a child is born with HIV."

This statistic is from The Global Fund to Fight AIDS, Tuberculosis and Malaria.

There's a web campaign at their site going on right now, asking people to sign their petition, which will go to global leaders requesting support and money for the fund. Their goal is to end the mother-to-child  transmission of HIV by 2015. Approximately 400,000 babies are born with HIV every year.

From their site: "The goal of an HIV-free generation by 2015 is a global commitment by dozens of international and non-governmental organizations, who have committed to work together to make this a reality. The Global Fund’s task is to provide countries with the funding they need to achieve this."

This is doable. Will you join me in signing?

Monday, September 20, 2010

Now We Are Alone

I ran across this story on the NPR website a week or two ago. It's the heartbreaking and powerful story of a mom and dad, Jan and Linton Weeks, who lost both their adult sons in a car accident last year.

I realize none of us need more sorrow in our lives, but their story deserves to be shared.

Sunday, September 19, 2010

Truth

The truth is, we are all a little bit crazy, not just those of us who love dead children, who talk to them every day and wonder, for an eternity, why?

Truth is, sometimes we lose people not through death but through separation, through silences. Friends will not always stay -- and how I wish someone had told me that long ago, when I thought a friend was a friend for life. Experience taught me otherwise, painfully and slowly, and it's a lesson I am still trying to reconcile with my life experience. So many friends who disappeared, or cut me off, or drifted away. Friends I cut off, ran away from. People I never had a chance to tell goodbye, or people who said goodbye to me when I wasn't ready. Those I wanted, needed, to say goodbye to, but didn't have words gentle enough to do the job. Friends I no longer know if I can count on, the silences have been so great between us, are so great between us.

Truth is, others will die, others who may have long forgotten us, but meant a great deal to us once upon a time. Who changed our lives, briefly but permanently. Who we thought would be with us forever.

The world is so vast, and yet so small. Today I am thinking of several people I thought would be with me forever: one is gone, one is somewhere in between friend and stranger, and another is . . . I just don't know.

Truth is, the spaces in between us are sometimes all there is.

Wednesday, September 15, 2010

Over and Over Again

You can't say goodbye to a memory.

I remind myself of that a lot these days as I begin to prepare for a huge change in my life, one I'm not sure I'm ready for.

I'm viewing my life a little differently right now, savoring the seasons and the moments a little more than maybe I otherwise would. Knowing that my future, for the next three-quarters of a year or so, will be more about saying goodbye, coping with leaving behind what I know here. Walking into the unknown.

I don't like to say goodbye.

The change has been in the planning stages for several years now; we've been waiting for 2011 to put those plans into action. Next year is year we decided, some time ago, that we would move our family back to England, to my husband's home, back to his people, his family, all the things he has missed so terribly over the last 13 years we have lived in the States. The plans were fine, so long as they were plans, so long as 2011 was in three years, or two. But now, it's next year. And I will admit to being a little bit scared, a little bit overwhelmed, and very uncertain if this is the right thing for us to do. I don't want to move away from my comfortable routine, the stability that four or five years ago my husband and I so desperately needed. The memories.

But you can't say goodbye to a memory.

(Or so I tell myself, not quite believing it's true.)

Today I went to my ob/gyn for my annual check, the same doctor I've had since I was 28 or 29, who saw me through all three pregnancies. I've read that many women fall a little bit in love with their obstetricians during a pregnancy, and I can see why. And I think I did a bit myself. I told my doctor that we are moving next summer, and at the end of my appointment he gave me a hug and wished me well. Which made me cry.

But you know as well as I do that isn't the only thing that made me cry. I will probably never walk the halls of that hospital again, where I was pregnant and in labor with each of my children. I will never enter the room where I first heard their heartbeats and saw them kick. I will never again enter the room where I found out that Ben was dead.

Saying goodbye is not leaving him behind. I know he's here with me, but walking away from those memories, the good ones and the nightmare ones, rips me to pieces. Part of him is in those rooms, as is part of me, part of my other two children.

And once again, it's like leaving Ben, walking out the L&D doors with empty arms and stinging eyes.

I know he's here, inside me wherever I go. But I still must say goodbye, over and over again.

Tuesday, September 14, 2010

No Rules for Grief

Yahoo! Shine just posted an article titled "The Way We Grieve Now." The story opens with this: "Boarding a flight, Lisa Niemi pulled out her phone and texted "I love you” to her husband. It was a sentiment she'd often shared with her partner of 34 years, actor Patrick Swayze."

How. . . refreshing to read this. I'm a mother who has been without her second child for nearly seven years, and I still tell Ben, every day, how much I love and miss him.

Every. Day.

Every day.

For 2,447 days, I have said those words to my baby boy, even though he isn't here. And I have often thought that people would think I am crazy if they knew how often I talk to Ben. I've thought that perhaps I really am crazy, sometimes, maybe I am holding on too tight. This article put those feelings in perspective - maybe I'm not as nuts as I think I am.

The truth is, grief does make us crazy. Intensely, deeply, wildly insane. It changes us forever, and the craziness ebbs and flows and, eventually, tapers down like a candle melting, slowly burning the last of its wick. The flame is never quite extinguished but doesn't burn as brightly as it did when the match first struck the wick.

What's the thing you think people would not understand about your grief, might make them think you're crazy? Care to share?

Saturday, September 11, 2010

Hole in My Heart Only You Can Fill


* Photo from GeekPhilosopher.com. 
 
For everyone who lost someone nine years ago today.

Some holes can never be filled.

Wednesday, September 8, 2010

Still Here

One of my Facebook friends, Janel Atlas (editor of the anthology They Were Still Born: Personal Stories about Stillbirth, in which an essay about Ben's death will appear) (now available for pre-order on Amazon! And Barnes & Noble!) posted a link to this interesting article about how fetal cells remain in the mother's body for years after the baby's delivery.

Dr. Diana Bianchi (not to be confused with the Diana Bianchi who broke up Christie Brinkley's marriage to Peter Cook) is a pediatrician and researcher in fetal cell migration. She discovered, a decade ago, that fetal cells remain in a mother's body for many years, perhaps forever, after a pregnancy, whether that pregnancy is full-term or not. These cells somehow assist in healing the body, providing a therapeutic effect, migrating to the site of an injury or source of an illness, doing what they can to fix the problem.

Amazing, no?

They're still here, our babies. Still with us, still residing in our bodies. Not them, but part of them. And that makes me feel much differently about losing my son.

Monday, September 6, 2010

What I Did Not Do On My Summer "Vacation"

Remember that post I wrote in early June, "School's (Almost) Out for the Summer"?  Where I posted a list of what I hoped to achieve while my children were out of school and I became a stay-at-home, work-at-home, full-time semi-crazed mother?

Well, ha on me. Here's a list of what I didn't get done over the past three months.

1. Lose 10 lbs. I maintained. Which has to be seen as a plus, right? (Right?)

2. I did not get my children to put their dishes in the dishwasher. Well, maybe 25% of the time. That's an optimistic percentage.

3. I did not convince my children that bickering with a sibling is overrated. But boy, did I try.

4. I did not eliminate foods with high fructose corn syrup from the family's diet. I limited them, but when you've got two kiddos with you at the grocery store arguing and pleading, I've found I give in more than I should.

5. I did not win the lottery. No surprise there.

6. Nor did I deal with the piles and piles of kid artwork and other assorted schoolwork lying around the house. Let's just say I have a new plan for the fall.

I did have a lovely, relaxing vacation in Massachusetts with my family and my sister. Except for the bickering siblings part, it was terrific. And now, school is back in session, my children are doing well (so far), and James, though exhausted, has done great in all-day kindergarten. Leaving me to focus on those piles and tasks and 10 lbs for six hours each day, though I am desperate to run to school and bring him home at noon.

Catch me in December and I'll let you know how I've done on my summer "things to do" list.

Thursday, August 26, 2010

And They're Off

My baby started kindergarten this morning. He was up and dressed and had his backpack on 20 minutes early, stating, "I'm ready to go now!" We told him it wasn't time yet, and he said, "I want to go anyway!"

And I teared up all through breakfast and our short walk to school.

He's ready. And it's hard to let him go. James walked into the school door without a backward glance while all I could do was look back in time, remembering the day he was born, remembering the last five years, wondering why they went by so quickly.

He's ready. And I am not.

He saved my life, you know. James and his sister both did, after Ben died. Charlotte was my reason to get up in the morning when I wanted to stay in bed, covers pulled tight over my head, forever. Though I can't claim to have been a good parent to her in that year after her brother died, I showed up because I had to. Because she needed me. I needed her even more.

Unlike last year, when I lingered at school on the morning of the kindergartener's first day, remembering what might have been, I cried this morning in happiness and sorrow. The milestones I would have marked with Ben are becoming more nebulous now, smaller in significance. I will not know when he would have finished school, for he might have dropped out, or failed a year, or some other unfathomable thing. He may never have gone to college, or gotten married, or had children. I don't know, and I live with not knowing, having to accept it because that is all there is.

I will mark my life now with the two who lived. And it's ok. Though I can't pretend these milestones are normal, untinged with the pain of loss.

James was my second chance, my hope, my future, my joy. All through that long pregnancy filled with fear and expectation, I waited, and hoped, and feared the worst. Then he came and I can't imagine living without him.

He's ready. Ready to go off into the world, eager to learn, so excited to be big.

The past five years have been leading up to this, I know. James, and Charlotte, are both where they need to be. Exactly as it should be, exactly as I want it, except for the longing in my heart.

Sunday, August 22, 2010

At 81, He Still Blames Himself

I came across this article several weeks ago, "Hibakusha writes to his dead child," about an 81-year-old man in Japan, a survivor of the atomic bombing of Hiroshima. In it, he speaks, through a letter written to his second child, a daughter who was stillborn, of his anguish that he may be responsible for her death.

"Is some bad blood flowing within me?" he writes.  "Or, is this the payback for having survived?"

I already knew, and this only reaffirms, the guilt and sorrow never go away. But at least there will be others out there who feel just the same way.

Thursday, July 29, 2010

It All Comes Down to This

Summer is waning, much as I hate to admit it. I glanced at the calendar the other day and realized that, in four weeks, school begins. My daughter starts 4th grade on a Tuesday, and my son begins kindergarten two days later, a shortened week of two 1/2 days before beginning full days the following week.

And I was browsing our community magazine a day or two ago, looking at the library's offerings for children, preschool story times, baby sign classes, and realized: It's over. My boy is too old for story time now, we've left it behind. We've left behind the diapers, first steps, nap times, all those baby things I love.

This is what we work for, as parents, we work to leave behind the baby years, we nurture our children and encourage them to take risks, feed them their fruits and vegetables, push them out and away from our protecting arms because it is what we are supposed to do. They are supposed to grow and change and leave us.

But I don't want them to leave me.

I am just past 40 now, closing in on 41 -- my birthday is in just a few weeks. I spent the decade of my 30s focused on babies -- having them, wanting them, overcoming the grief of losing one, deciding whether or not to have anymore. We first started trying for a baby when I was 29, though didn't manage pregnancy for over a year, along with the help of medical intervention, and my first child was born when I was 31. Three years later, Ben. 20 months after that, James, just before I turned 36. Followed by four more years of wanting another, debating having another, knowing all the while that there would be no more babies for us. (I am not quite reconciled to this decision, nor do I think I will ever be.)

And though there are many years of parenting ahead of me, I am having trouble letting go of that baby-obsessed decade. I'm having trouble letting go of the best things I've ever done, trouble pushing them out of the nest. And this is what it comes down to: letting them go, when I will always want to hold them in my arms like I did when they were born.

There is so much I didn't know: how hard it would be, nor how wonderful. How fast they would grow and leave me behind.

Sunday, July 25, 2010

A Baby Candle

Some of you may recall that my husband and I light a special candle every year on the anniversary of Ben's birth. This candle was given to us by friends and used on the day of his memorial service; we light it only once each year.

Friends of mine started a company, Luna's Light (there's another link over there on the right), in memory of their sister Shannon, who died unexpectedly in her early 20s. They provide resources for grieving families. Recently (ok, not so recently; a few months ago - I am remiss in posting this) we met up for coffee and conversation, and they gave me one of their company's newest offerings, a baby candle.  (And yes, I totally stole this image from their site...a better picture than I could do! Michele & Kelly, let me know if this is not ok!)



It really is a gorgeous candle and I love having something to light "just because" I miss Ben. His other candle is special, only for his anniversary, while this is special because my friends gave it to me in his honor and I feel free to use it whenever I want. 

Click on over (to go right to their candle selection, click here - they have many more), browse around, place an order if you like or refer a friend. Tell them I sent you - they're great people and are devoted to helping anyone who is grieving a loss.

Tuesday, July 20, 2010

Go Read This Post

... and see if it doesn't change how you feel about your day.

Jennifer Lawler's daughter Jessica has a seizure disorder. When she was 9 months old, surgeons removed half of Jessica's brain. Her daughter is 13 now and they just received the bad news that Jessica has a hole in her spine, which surgeons hope to fix on August 10th. Jennifer wrote this post over on her blog, Finding Your Voice, which might just rip your own heart to shreds.

Go read it, and send a prayer, or good thoughts, or whatever you believe in, their way.

Sunday, June 27, 2010

A New Book About Stillbirth

And this time, I'm in it.

Well, not exactly "in" it; I'm actually the author of one essay in a book slated to be published in November. It's called They Were Still Born: Personal Stories of Stillbirth. I was contacted by the book's editor, Janel Atlas, over a year ago to ask if I would be interested in contributing an essay to her proposed anthology, and I agreed. I'm very excited to hold a copy of the book in my hands.

It's available for pre-order now at Amazon.

Friday, June 18, 2010

Writing and Yoga

So, I expect you've noticed the yellow icon over there about yoga and writing. I'm doing a yoga and writing challenge for 21 days, just because. I've got some lower back issues that like to crop up from time to time, and yoga helps alleviate some of the trouble. Yoga is also good for my mental health, which is more important to me at the moment, quite honestly. I'm little miss stressed, generally.

As far as the writing, well, I've been working on some things, and though I'm in the editing stage right now, a challenge is a useful thing for me. I don't have as much time as I'd like to be part of the community of individuals taking the challenge, but I'm there in spirit. So no, I'm not writing 800 words a day, but I'm editing that many most days, if not more. And getting in a few sun salutations or warrior poses too.

If you're curious about the challenge, click on over to Bindu Wiles's site. What are you challenging yourself to do these days by way of self-improvement?

Friday, June 11, 2010

Please

If you're pregnant, don't send me an e-mail with the subject "Bad News." Because when I work up the courage to read it and discover there is NOTHING truly bad in the body of that message, I will spend the rest of the day trying not to weep.

Friday, June 4, 2010

School's (Almost) Out for the Summer

With less than a week of school left for my 3rd grader, I thought I'd turn to the lighter side of life and list a few summer goals for my family. (A girl's gotta have a dream.)

This summer, I hope to convince my children of the following:

1. It only takes 5 steps to move from the left of the kitchen sink, where you normally place your dirty dishes, to directly in front of the dishwasher, where you can place them directly in said receptacle, freeing your mother up from an extra 15 seconds of work 36,322 times per day.

2. Bickering with your sibling may commence at 7:59 a.m., but not a moment before.

3. While the ice cream truck may pass by our house twice each day, you're not getting a treat any more than once a month. If you're lucky.

4. Foods with high fructose corn syrup, that are overly processed, or colored any kind of unnatural shade (I'm talkin' to you, Cheetos) are not a healthy part of anyone's diet.

5. TV is a privilege, not a right.

My personal summer goals:

1. Lose 10 lbs. (This has been a goal for the last, oh, 40 years of my life.)

2. Beat the overgrowth in my yard into submission, once and for all. (This has been in progress for 5 years.)

3. Maintain (some might say find) my sanity.

4. Organize the piles of papers, books and child artwork littering my house. Perhaps even unionize those dust bunnies.

5. Win the lottery. (But since you have to play to win, and the only time I've bought a lottery ticket was actually when my grandmother-in-law purchased one for me....well, you know.)

Anyone care to share summer goals, real or imagined?

Wednesday, May 26, 2010

Turn Around

Where are you going, my little one, little one?
Where are you going, my baby, my own?




Turn around and you're two



Turn around and you're four


Turn around and you're a young boy
Going out of the door


. . .Where have they gone
My babies, my own
Turn around and they’re young
Turn around and they’re old
Turn around and they’re gone
And we’ve no one to hold.

* * *

My baby boy "graduated" from preschool this week, and I wonder, like the words of this song, where my baby has gone. I miss him even as he is with me, as every minute seems to bring changes and with every passing moment he grows up. As he should. 

Because I lost Ben, maybe I love my children more, now. Maybe I appreciate where they are in every moment, how precious they are. But I still wish I could keep them small for a little while longer. If I could change one thing about myself, it would be this: how hard it is for me to let my babies go, how sentimental I feel with each milestone. How much I wish I could squeeze this time into a bottle and keep it with me forever.


How much I will miss right now, when it's over.

Wednesday, May 12, 2010

Life is Too Short

I think those of us who have lost a child know a little too well just how short life is. And I could write a sad, serious post about just how short life is after you've lost a child, but that's not what I'm going to do today.

How about a little comic relief instead? I'm writing this post in conjunction with TwitterMoms, who are giving away copies of a new book, "Life is Too Short to Fold Fitted Sheets: Your Ultimate Guide to Domestic Liberation" by Lisa Quinn. About the author: Lisa Quinn is known as the House Doctor on the ABC San Francisco show, "View From the Bay."

So here's my list for what life is too short for:

1. Life is too short to hold a grudge.
It doesn't do anyone any good and sucks up time and energy you could use for happier pursuits.

2. Life is too short to worry about the dust bunnies under the bed.

3. Life is too short to polish the furniture.


4. Life is too short to drink bad wine. (I might argue that it's too short to drink Californian wine, but to each his own.)

5. Life is too short to NOT each chocolate every day.

6. Life is too short to not say "I love you" on a daily basis.

7. Life is too short to worry about what other people think. And let's face it, they're probably worrying about what you're thinking, so it's all wasted energy. If you're happy with yourself, that's all that matters.

8. Life is too short to put off the reunion with your college friends. (This is a reminder to myself. I miss my girls.)

I could go on for quite a while on this topic, and as it turns out, I wasn't as funny as I thought I might be. I'm sure that won't surprise many people.

What is on your "life is too short" list?

Tuesday, May 11, 2010

A Blessing for Mothers

My virtual friend Sula Lee posted this prayer on her blog on Mother's Day. I really liked it and thought I'd share it with you:

Today we bless mothers who sat up all night with sick toddlers saying, "It's OK honey, Mommy's here.

Today we bless mothers who gave birth to babies they may never see. And the mothers who took those babies forever to be their own children.

Today we bless mothers who attended ball games, recitals, rehearsals, etc. etc. and said, "I wouldn't have missed it for the world," and meant it.

Today we bless mothers who show up for work with milk stains on their blouses and diapers in their purse.

Today we bless mothers who put pinwheels, teddy bears, or flowers on children's graves.

Today we bless mothers whose children have gone astray, who haven't the words to reach them, and yet have never put them from their heart.

Today we bless new mothers stumbling through diaper changes and sleep deprivation. And today we bless mature mothers who are learning to let go.

Today we bless all mothers: working mothers, stay-at-home mothers, single mothers, and married mothers. We also bless all women in life giving and nurturing roles. We thank you. We honor you. We bless you. Amen.

- adapted from a prayer of Dan Bottorff

Sunday, May 9, 2010

Happy Mother's Day

* To the mothers whose babies aren't with them.

* To the mothers whose children don't get along with them.

* To the mothers hoping that their relationship with their children will be better than their own relationship with their mother.

* To the mothers who are waiting, and hoping, to bring a baby home soon.

Monday, May 3, 2010

Study Finds Couples More Likely to Break Up After Pregnancy Loss

Well, duh.

A study from the University of Michigan discovered that yes, couples who lose a baby are highly likely to break up. Not really new or startling, but I suppose we can be grateful someone is drawing attention to that fact. This is the link to the study and a few paragraphs from the press release:

"ANN ARBOR, Mich. - Couples are more likely to break up after the loss of a pregnancy and unmarried couples are at even higher risk, according to new Universityof Michigan Health System research published today.

The study published in the journal Pediatrics is the first national study to look at the effect of pregnancy loss—by miscarriage or stillbirth--on relationship outcomes. It’s also the first to establish that parental relationships have a higher risk of dissolving after miscarriage or stillbirth compared to those who have a live birth.

Over a 15-year period, couples who miscarried had a 22 percent higher risk of experiencing a break-up while couples who experienced a stillbirth had a 40 percent higher risk of their relationship ending. For a miscarriage, the risk persists up to three years after the loss. For stillbirths, it persists up to nine years after the loss, according to research data."

I know my marriage suffered greatly after Ben died--we almost didn't survive his death. What was your experience? Did your marriage suffer as a result, or bring you closer?

Wednesday, April 28, 2010

If You've Ever Needed a Reason

...not to text and drive, or call and drive, I have one for you.

Watch Oprah this Friday, April 30th, and look out for a young woman named Jacy Good. I knew her mother, many years ago, and have written about her here, though I didn't name names. I taught her brother in Vacation Bible School about 100 years ago, for me, which translates to about 3 years ago for him.

Two years ago this May, Jacy graduated from college, magna cum laude, on a beautiful Sunday. After the ceremony, the congratulations, the hugs, the goodbyes, she and her parents loaded her things in the family car to drive home. Jacy was set to begin working in New York City as an Americorps Volunteer, for Habitat for Humanity. She was set to change the world.

The afternoon of her graduation, as she and her parents drove towards home, a young man on a cell phone ran a red light and into the path of an 18-wheeler, which proceeded to veer into the Good's car. Jacy's parents died immediately, and she was not expected to live. That she did live is nothing short of miraculous. While not fully recovered, she has made amazing strides. Parts of her will never function "normally" again, but she's alive. And she's on a campaign to stop cell phone use while driving.

I'm not really for voyeurism, but if you click on this link you will see the photo of her family's car after the accident. It's horrific. Even more horrific are the injuries she suffered and the sorrow she and her brother have endured in the last two years.

If you know someone who uses a cell phone while driving, please send them this link. Please ask them to stop.

Friday, April 23, 2010

Where Does the Time Go?

Hmm...sudden realization that I haven't updated my blog in a while, and I'd like to say I could blame it on warm, sunny weather and the completion of many outdoor activities, but I can't. It has been cold here, for the most part, and not conducive to weeding, planting, or mulching. I am still (always) trying to tidy up my house and, despite my vow to make this year the year I get myself organized....well, you can guess.

Time waits for no man, or woman, so they say, and that is proving itself true here In the Land of Broken Hearts. I will never be able to keep up, and just when I think I might manage it, something changes, and I feel I am always preparing for the change. Which, quite honestly, may or may not come. I try to live my life by the wonderful philosophical/spiritual advice of those life-balance gurus, The Beatles, and just "let it be...there will be an answer, let it be."

But I suck at letting it be.

Sunday, April 11, 2010

A Blog, and Book, for Babyloss Parents

Naming the Child is a new(ish) resource for parents who have experienced baby loss of any kind--SIDS, stillbirth, miscarriage, or other baby death. It's a lovely site and I thought I would recommend it to all of you.

The site's owner, Jenny Schroedel, has a book available on Amazon, Naming the Child: Hope-Filled Reflections on Miscarriage, Stillbirth, and Infant Death.

Thursday, April 8, 2010

How to Do and Have It All

I've finally figured it out! The secret to doing everything you want to do with your life!

Hire someone to clean your house once a week and come in to do touch ups on an as-needed basis.

Hire a gardener to pull the weeds that keep returning no matter what you do. Hand said gardener your credit card and say, "Go to it."

Figure out where Mary Poppins is, or perhaps Super Nanny, and hire her. Pull ye olde credit card out again, for superior childcare is expensive.

Find an appointment setter/part-time schedule keeper to keep track of, and make, appointments to the vet, dentist, doctor, arrange for the plumber to come fix the leaky faucet, purchase the yearly pool pass, arranging play dates and dinner parties, and chauffeur the children to lessons and classes and to-and-from school.

It's very important to hire a chef to purchase and prepare healthy, organic, whole food meals. Ideally this would be done as inexpensively as possible and use many coupons. For if you do not use coupons, ye olde credit card might combust from the strain.

Spend one weekend clearing out all the junk in your house. Throw it on the front lawn for passersby to take.

Obtain some Valium to help with any residual anxiety, and then get to it. 55 books on your reading list? No problem! Career in need of revitalization? You're free to revitalize it! Spending quality time with the family and providing for their every need while earning enough money to pay for the extras? Easy! Learn a foreign language and lose 10 pounds? What are you waiting for! You now have a beautiful, clean house, a stunning backyard and beautiful meals instantly available. You too can do it all!

*If these tips fail you, I suggest throwing your hands up in the air, saying, "fuggedaboutit" and joining the circus. Which sounds like a damn fine plan to me right now.

Wednesday, March 17, 2010

Stillbirth & SUID Prevention, Education, & Awareness Act

I've blogged about this before, and I hope the next time I blog about it I'll be able to tell you that Congress has passed this act and the hard work of saving baby's lives has begun.

The Stillbirth & SUID Prevention, Education & Awareness Act would provide research money to investigate stillbirth and SUID as well as create a national databank of infant deaths, potentially leading to prevention of infant death. (And I realize I am preaching to the choir, but I hope someone might stumble on this and become informed.)

Why? Well, about 26,000 babies are stillborn in the US every year. 50% of those deaths are unexplained. That's 13,000 babies.

Let me repeat that: 13,000 babies are stillborn each year AND NO ONE KNOWS WHY.

Another 4,600 babies succumb to SUID (Sudden Unexplained Infant Death) in the first year of life. Another 200 children between the ages of 1 and 4 die for no apparent reason.

Let's tally that up: 26,000 + 4,600 + 200 = 30,800.

30,800 - 13,000 (babies who are stillborn and the cause is known) = 17,800.

Approximately 17,800 babies die each year without discernible cause.

That is not acceptable.

If this bill is passed, it might be possible to discover why many of those 17,800 babies die, and it might be possible to prevent babies from dying in the future.

For more information, please visit the CJ Foundation for SIDS. There is a link on the home page where you can click and write a letter to your members of Congress.

Thank you.

Wednesday, March 10, 2010

Sunday, March 7, 2010

International Women's Day - March 8

Monday is International Women's Day, and I've joined a community of bloggers around the world who are blogging about women and hunger as part of a World Food Programme initiative to raise awareness for the one billion people around the world who go to bed hungry every night.

From the WFP website:

"Some 60 percent of the world’s chronically hungry people are women and girls. This is because women often have unequal access to resources, education and income, and because they participate less in decision-making.

And when hunger and undernutrition affect women, they also affect their children. More than 19 million children are born annually with low birth weight, often the result of their mothers receiving inadequate nutrition before and during pregnancy.

Women as solution

In many countries, women form the backbone of the agricultural sector and food systems, making up the bulk of agricultural labourers.They also play a key role in guaranteeing food security for the entire household.

Experience shows that in the hands of women, food is far more likely to reach the mouths of needy children."


What can we do to help?


- Make a donation: 25 cents is all it takes to fill a cup to feed a hungry schoolchild a meal. $16 US dollars buys a 25 kilo sack of rice.
- Play the online game Free Rice, which asks you to define words (improving your vocabulary in a fun way! great for word nerds like me) and donates rice for every word you correctly define.
- Spread the word, through your blog, Facebook, Twitter or other online social group. Click here for more information.

Wednesday, March 3, 2010

For Grieving Dads

Kelly Farley, a bereaved father of a daughter and a son, has created a website for grieving dads. He is aiming to write a book designed just for grieving fathers, and I must say, I think this would be a welcome addition to grief literature. Here's a bit from his site, Grieving Dads.

"This project is designed to reach out to all bereaved dads and to provide a conduit to share their stories. One of my goals is to bring awareness to the impacts that child loss has on fathers and to let society know that it’s okay for a father to grieve the loss of a child. A father shouldn’t have to hide his pain or feel ashamed to show his emotions."

He is looking for fathers to answer some questions, via his website, as part of his research for the book. If you, or your spouse/partner, or someone you know, might be able to help him out, send them his link.

Friday, February 26, 2010

Snow Day


First day school has been closed all winter - we're a hardy bunch.

Thursday, February 25, 2010

Global Report on Preterm & Stillbirth

I received notification of the Global Report on Preterm & Stillbirth, which was just released. It identifies causes of stillbirth and prematurity as well as interventions that could prevent or improve what study researchers term "under-addressed outcomes." In otherwords, stillbirths, which happen to 3.2 million families each year, according to their report--that little thing no one wants to talk about.

I find it interesting how the researchers quoted in the release admit that far too little attention has been paid to preterm births and stillbirths. I can only hope people pay attention.

Here's a little more about the paper, with link:

"The Global Report on Preterm & Stillbirth, published with the BMC Pregnancy and Childbirth’s latest supplement, identifies known causes and 21 proven interventions that could now be widely used to improve these extremely distressing yet under-addressed outcomes. Additionally, it outlines the urgent need for increased focus and attention on research. This is crucial for understanding the magnitude, causes, and consequences of preterm birth and stillbirth, and for speeding up the development of diagnostics, treatment and prevention strategies.

The report, led by the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), and supported by the Bill & Melinda Gates Foundation and Seattle Children’s, is a collaborative effort undertaken by an interdisciplinary team of maternal, newborn and child health experts from around the globe.

“We can save more lives, but we urgently need more action and resources to better understand the causes of prematurity and stillbirth, and to guide development of cost-effective interventions,” said Dr. Craig E. Rubens, executive director of GAPPS. “For the first time ever, experts from around the world have agreed to a comprehensive, evidence-based approach to solving these global tragedies.”

Monday, February 22, 2010

Does This Mean I've Made It?

I've been getting a lot of spam comments on my blog recently....anybody else? I've been blogging here for a few years now, and nothing, then, suddenly...they're everywhere. I've deleted some, given up and left some. Some are complete rubbish - nonsense - some appear to be in Japanese, Chinese, or Russian, I don't know.

How do people do this, leave spam comments on blogs? I really have no idea. What I find interesting/weird are comments like this one:

"Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now. Keep it up!
And according to this article, I totally agree with your opinion, but only this time! :)"

And this one:

"It was rather interesting for me to read that blog. Thank you for it. I like such themes and everything connected to them. I definitely want to read more on that blog soon."

Yep, I love reading blogs about dead babies. It's so much fun! And like you, dear spammer, I can't wait to read more! I love the themes of dead babies and everything connected to them myself; why don't you call me and we can discuss it all day long? And to my dear other spammer, I'm glad you think I'm getting better and better at this blog thing. I am a professional writer, though, so I'm a little disappointed to hear that my older articles aren't as good as my new ones. Though I have been at this deadbabymama thing for 6 years now.

And how, exactly, do you agree with certain articles about dead babies and not others? What opinion of mine do you agree with? Perhaps the one where I state that having a dead baby sucks?

Please, keep reading, and keep making inane comments. Can't wait to hear more from you.