For Now, Farewell

I've put off writing this post for weeks, unsure of what to say. Because I'm not saying "goodbye" as I am saying, I'm moving on from here, but into what, I don't know.

We moved to the UK nearly seven months ago and are still adjusting, all of us. That takes a lot out of a person and I am no exception. We'll be moving into another home in July, though I don't know where, or when, exactly. My children need me in a way they haven't before: they need more reassurance, more hugs and kisses, more time. I am trying to decide what to be when I grow up: I need a job for my own sense of self, my sanity, not to mention that a paycheck would be, well, helpful.

So that is where I am: figuring it out, hoping, unsure. I've so valued this safe space where I could come to talk about Ben, for as we who journey in this land of broken hearts know too well, those safe spaces are few and far between. I hope I've helped, for that was my intention in writing here: to help those who come after me, to reassure them that they will survive this, even though it doesn't feel possible. Even though it will take years to believe.

I'm not leaving the stillbirth community, though I don't yet know how my future participation in it will shape up. I'll let you know. In the meantime, please, if you want to keep in touch, send me an email (it's up there in the right hand corner) and I'll be there. I'm also on Facebook and Twitter, but again, email me and I'll tell you how to find me.

Thank you for sharing this journey with me. Thank you for letting me remember my son, and allowing me to get to know your babies too.

Eight Years Without You

Every year since 2003, at 11:34 am on the 30th of December, I have looked at the clock and thought, "And now I knew." Ben was gone but the long process of labor and delivery loomed, phoning my husband to tell him the terrible news, alerting families and friends.

In the space of a moment, a life changed, a life ended. A lifetime of things not done, words not said, plans and hopes and memories never made.

Eight years. Unimaginable that anyone can live that long without something--someone--so important. But live you do, because there is no other choice.

Grateful

Grateful for those who aren't afraid to say his name. (Ben.)

Grateful for those who try to understand that he is still my son, that I miss him every moment of every day. Grateful for those who realize I miss all the things that could have been. Grateful for those who understand you don't "move on" but you incorporate the grief into your life.

Grateful to those who aren't afraid to tell me they remember him and can only imagine how much it hurts.

Grateful that he is not, just yet, forgotten.

End-of-Year Charity Requests

One request comes from the MISS Foundation, with this:

"2011 has been a tremendous year of growth for the MISS Foundation. A new board of directors, a new executive director, a new national office, a new accounting system, new database, new interns, new policies, new procedures, new volunteers, and sadly, and most importantly many, many, many new MISS Families needing support after the death of their beloved child....

The MISS Foundation serves these families and thousands of other bereaved families around the world without the help of federal funding or grants. The MISS Foundation is able to care for its families from individual and corporate donations. Not unlike many nonprofits in this depressed economy, donations have not kept pace with the need for services, so much so, that in 2012 some of our programs are at risk of being discontinued because of the extreme lack of funding. We desperately need your help!  Remember: No one does what we do to help families facing infant and child death: counseling, advocacy, research, education, and support. 

In the spirit of holiday giving, gratitude, and loving precious children gone too soon, please help save MISS Foundation programs and consider a $100, a $50 or a $20 donation. Every dollar helps the MISS Foundation save families, families like yours, on the most unthinkable journey...

We can’t save every child. Please help us save their families…"

*Donations can be made online here.


Another funding request comes from Big Buddha films, which is working on an independent film about a couple who lose three children. The trailer is powerful and a bit heartbreaking. Imagine something like this being screened at one of the big film festivals, like Sundance. For more info, see here.

Say His Name

Ben.

That's all. Just Ben. It's not hard. It won't hurt to say, it won't hurt for me to hear. It will be sweet, in fact, to hear you say his name for what may be the first time ever. (How can you not say his name to me? He was a real child, after all.)

Ben.

That's all.

For Thanksgiving, a Poem

Because I am thankful for, among many, many other things, poetry, I give you this, by Mary Oliver.

Morning Poem 

Every morning
the world
is created.
Under the orange

sticks of the sun
the heaped
ashes of the night
turn into leaves again

and fasten themselves to the high branches ---
and the ponds appear
like black cloth
on which are painted islands

of summer lilies.
If it is your nature
to be happy
you will swim away along the soft trails

for hours, your imagination
alighting everywhere.
And if your spirit
carries within it

the thorn
that is heavier than lead ---
if it's all you can do
to keep on trudging ---

there is still
somewhere deep within you
a beast shouting that the earth
is exactly what it wanted ---

each pond with its blazing lilies
is a prayer heard and answered
lavishly,
every morning,

whether or not
you have ever dared to be happy,
whether or not
you have ever dared to pray.

Still Life 365 Spoken Word Blog Round Up

Angie, over at Still Life With Circles, suggested this blog round up of videos. I'm a bit late chiming in, but better late than never.

This Looks Like Progress

I'm hesitant to say it, simply because I'm a cynic and because the issue of stillbirth, and raising awareness and working towards prevention of stillbirth, is so dear to my heart. However, I've been impressed and surprised to see a little more awareness of Pregnancy and Infant Loss Awareness month in more traditional media venues, acknowledged by people and groups we've actually heard of.

For example, on Facebook, as well as on their website, the natural cleaning products company Seventh Generation posted a note about Pregnancy and Infant Loss Awareness Day, October 15th, in recognition of the millions of women who lose a baby every year. Would we have seen that a year or two ago? I think not, though I am curious as to what, if anything, prompted the company to add such a post to their wall. I am both surprised and very grateful to them for mentioning the day itself. It gives me hope and makes me feel proud that I have used their products in the past. Not sure if they are here in England, but if they are, I will be supporting them as a customer again.

The Washington Post included a blog post about October 15th in their online forums in a column by Janice D'Arcy. I can't say if this ran in the print version of the paper, but I'm pleased that it ran in online under the headline of one of the US's larger papers (so many notices are in small venues; this one is likely to pick up more notice).

If you get a chance and feel so moved, thank the people and companies you see making an effort to acknowledge stillbirth. These are small but positive steps in the right direction, and they deserve our thanks if we are to continue making strides in education about grieving and loss.

Stillbirth Statistics

From the recent series of articles printed in the British medical journal The Lancet, which coordinated a study with the World Health Organization:

• 2.6 million third-trimester stillbirths worldwide each year;
• 1.1 million could be prevented, The Lancet estimates, with simple interventions like folic acid supplements before conception, diabetes management in the mother, and detection of hypertension, among others;

Stillbirths are an invisible public health epidemic, with no national or global initiative to track or prevent.

I don't speak out because I am grieving, or because I am depressed, or because I am dwelling on the fact that Ben is dead. I speak out because I love him, and because if more people know that almost 50% of stillbirths can be prevented, if society has the will to research, fund, and educate the population, (as with SIDS research and education), we can make a huge difference in many, many lives. We can spare parents the sorrow my family has experienced.

Let me make it clear: yes, I still grieve for my son, it's only natural. There are a lifetime of moments I will never experience with him. I miss him, always, every day. I'm here now because I want to make a difference, not because I am dwelling in my loss. You don't get over it, but you learn to incorporate it into your life. That's what I've done.

I can make a difference. That's why I'm here.

Pregnancy & Infant Loss Awareness Month

It's that time again...October. I wasn't going to bring it up, much, over here, but today I was reminded, yet again, that I am supposed to be over losing Ben.

And so, let me ask you this, those of you who think I should be "over" it. If your husband of 40 years died tomorrow, how soon would you be over it? If your 3-year-old grandchild died next week, how soon would you be over it? If your 35-year-old son died today, how soon would you be over it? Do you not think you would carry it with you for the rest of your days? Do you think you would not think about that particular beloved every day?

I lost one of the three best things I have ever done. And I will talk about him (though I barely talk about him I know you think I dwell on his absence far too much) because I love him. And he is my child every bit as much as the two I have here, living and breathing. And if talking about Ben, and advocating for stillbirth research and support can change the outcome positively for that 50% of babies whose lives might be saved, then no, I will never get over it.

The Story of Ben

I make the mistake, all too frequently, of thinking that Ben's story belongs only to me. Yes, I cling to it, to him, possessively, a mother bear ready to fight for her cub. I think that he is solely mine because I carried him in my womb, because he spent all of his life, his living, within me. I want him to be all mine because I have so little to show he was ever here.

There are other stories of his life and death that I forget. His father's story. His grandparents' and aunts', uncles', cousins' stories. His brother's and sister's stories.

All of these stories are incomplete, just like mine, but no less valid, no less real. I was reminded this morning of that reality by James, who cried in bed as I prodded him to get up, get ready for school. "I miss my brother," he said, as a tear rolled down his cheek. And while I don't think he was crying because he misses the brother who lived and died before he came to be, I could only think of how different our lives would be had Ben lived. That James and Charlotte will have their own stories to tell one day of how they think their lives changed because one of us is gone.

I want Ben's story to be mine only, because I am selfish, because I miss him, because I am his mother. But all of us lost something the day he died. All of us, whether we acknowledge it or not.

Sedona Grief Retreat

This retreat has me wishing I still lived in the U.S. for many reasons. One of them is Kara Jones, aka Mother Henna.....she is an awesome creative, bereaved mother, teacher, coach and all-around cool person. She, as well as the amazing Joanne Cacciatore, bereaved mother, professor, and founder of the MISS Foundation, are putting on a grief retreat in beautiful Sedona, Arizona on October 15th, which Infant Loss & Remembrance Day.

This retreat is open to anyone grieving a loss and not limited to infant bereavement. I would love to go and learn from these wise women, not to mention spend a weekend in Sedona--my husband and I traveled there for a wedding anniversary many years ago and I would love to get back to the breathtaking scenery and wide-open skies we found there.

If you're able to attend, I'd love to hear about it afterwards.

May Your Love Bring Us Love

There is nothing I can say about the events of 10 years ago that someone else hasn't said better, with more wisdom, more insight. When I remember that day, I think of the silence, after the towers fell, stepping outside on a beautiful, glorious September day, and there were no cars moving past, no airplanes flying overhead, no schoolchildren calling.

Only silence.

And today I give you Bruce Springsteen singing a song from his 9/11 album, The Rising, Into the Fire.

Well the sky was falling and streaked with blood
I heard you calling me, then you disappeared into dust
Up the stairs, into the fire
Up the stairs, into the fire
I need your kiss, but love and duty called you someplace higher
Somewhere up the stairs, into the fire

May your strength give us strength
May your faith give us faith
May your hope give us hope
May your love bring us love

Cleveland, OH Fundraising Concert

Until 5 weeks ago, I was a resident of a Cleveland suburb, and I met Norine Tuck-Ringwalt, also a suburban Cleveland mom, as a volunteer for the Star Legacy Foundation. Norine lost her daughter Areila this past May. Unfortunately we never had a chance to meet in real life, but only know one another through the wonders of the internet.

Norine has organized a concert this Sunday, September 11th, to benefit the foundation, at Brother's Lounge, 11609 Detroit Ave., Cleveland, from 5:00 to 9:00 pm.

If you can, please attend. It's a long flight for me, but I will be there in spirit. For more information, go here. And thanks.

An Article on Stillbirth from the NY Times

Mainstream press about stillbirth is always a welcome surprise, and though I'm a bit late to pointing this out, the NY Times published a piece about stillbirth on August 15th. I'm happy to see it, though I have to take issue with some of the language used, like this paragraph:

"It often is a devastating experience. “As soon as they learn they are pregnant, most women consider their unborn baby their child, and for many a stillbirth is like the death of a child,” said Dr. Robert Goldenberg, an obstetrician-gynecologist at Drexel University College of Medicine."

It isn't often a devastating experience, it is a devastating experience. And a stillbirth is not "like" the death of a child, it is the death of a child! My son was full-term, full-size, perfect and ready to go home, except that he was dead. He was a perfect child who happened to die three days before he was due.

While this article is welcome and necessary, we still, as a society, need to work on the language we use to describe stillbirth. But maybe we are starting to get there.

This Must Be the Place (Naive Melody)

Home. It's where I want to be, but I guess I'm already there. 

Right Where I Am: An Update

Over 160 parents have taken part in Angie's Right Where I Am project, and Angie recently shared Jack at Random's amazing blog post where he compiled a line from every single one of the Right Where I Am posts (Every. Single. One. As of July 18.) into a kind of poem which he calls Right Where We Are. Then, at the bottom, he included all of our baby's names.

It's beautiful. Go take a look.

PS: We leave the country tomorrow; I'm glad to know that, wherever I am, you'll still be here. I've needed you on this journey, and I hope I've helped you too.

Hard to Say Goodbye

I've never liked goodbyes, since long before Ben died. But in the seven years since he died, goodbyes have gotten a lot harder to say because they bring back his life, and death, the first and only moments we had with him to tell him hello and goodbye all at once.

My family and I are in Pennsylvania right now, getting ready to have a party for my parents' 50th wedding anniversary. This weekend also marks the last time we'll be seeing my family for quite a while, for in 11 days we are moving to England to begin a new life. In some ways an old life, too, as my husband is British, and we met, and were married, there nearly 15 years ago. We spent the first year of our marriage living and working in England until my husband was transferred to Ohio by his company. Thirteen years later, we are going back.

And tomorrow I have to say goodbye to my family, to our cats, who will be moving to Massachusetts to live with my sister, say goodbye to another chapter of my life. In a way, I feel I am leaving Ben behind too, for the only place I ever knew him was in Ohio, in the hospital where I delivered him and kissed him goodbye. I know I am not leaving him, but thoughts of pulling away from the hospital doors on the afternoon of the day he was born haunt me. They always have. I left him, not because I wanted to, not because I had any choice. Those moments ripped me apart and I've never been the same since.

And I wonder where I'll find him now, for this is where Ben is, where I feel him with me on those few occasions when I do feel him. I hope I'll find him again, 3,500 miles away, that those feelings won't be left behind.

But today, I just don't know.

The House I Keep

Jhene Erwin, writer/director/producer/actor, wrote and filmed a short movie, "The House I Keep," about overcoming the loss of a child to stillbirth or miscarriage. In her particular case, she lost two children to miscarriage. Trying to heal after those experiences led her to create "The House I Keep."

At The Gates Foundation blog, Jhene writes of trying to overcome the tension between grief and the outward, socially expected appearance of "normal." When there is no such thing as normal. She talks also about the stigma of losing a child, the very necessary work of talking about our lost children, of allowing women and men the space to grieve. To know that we did nothing wrong. To know that our babies are not forgotten.

Talking about our babies heals. Not ignoring them.

Wow

I'm a bit speechless after reading this on a UK website:

'Rennie Gibbs is accused of murder, but the crime she is alleged to have committed does not sound like an ordinary killing. Yet she faces life in prison in Mississippi over the death of her unborn child.

Gibbs became pregnant aged 15, but lost the baby in December 2006 in a stillbirth when she was 36 weeks into the pregnancy. When prosecutors discovered that she had a cocaine habit – though there is no evidence that drug abuse had anything to do with the baby's death – they charged her with the "depraved-heart murder" of her child, which carries a mandatory life sentence."

How can she be charged with murder when, as thousands of us know in the U.S., her baby was never really born? My son was never born, he was only ever dead--for all I have to prove his existence is a death certificate, not a birth certificate--and no, I've never been able to wrap my head around that.

While I will be the first to tell you that doing cocaine during pregnancy is one of the stupidest things ever, I'd also like to see some evidence that it contributed to her baby's death.

The article goes on to tell the story of another woman:

"Amanda Kimbrough is one of the women who have been ensnared as a result of the law being applied in a wholly different way. During her pregnancy her foetus was diagnosed with possible Down's syndrome and doctors suggested she consider a termination, which Kimbrough declined as she is not in favour of abortion.

The baby was delivered by caesarean section prematurely in April 2008 and died 19 minutes after birth.

Six months later Kimbrough was arrested at home and charged with "chemical endangerment" of her unborn child on the grounds that she had taken drugs during the pregnancy – a claim she has denied.
"That shocked me, it really did," Kimbrough said. "I had lost a child, that was enough."

I realize there is more to both of these stories than any article can relay, but really? I'm aghast.