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.

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?

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.

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.

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.

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?

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.

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.

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.