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.

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.

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.

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.