Friday, December 30, 2011
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.
Tuesday, December 20, 2011
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.
Wednesday, December 14, 2011
"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.
Monday, December 12, 2011
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.)
Wednesday, November 23, 2011
Under the orange
sticks of the sun
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
And if your spirit
carries within it
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
whether or not
you have ever dared to be happy,
whether or not
you have ever dared to pray.
Friday, November 4, 2011
Monday, October 17, 2011
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.
Wednesday, October 5, 2011
- 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;
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.
Saturday, October 1, 2011
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.
Monday, September 19, 2011
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.
Wednesday, September 14, 2011
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.
Sunday, September 11, 2011
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
Tuesday, September 6, 2011
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.
Tuesday, August 23, 2011
"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.
Sunday, August 7, 2011
Tuesday, July 26, 2011
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.
Saturday, July 16, 2011
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.
Sunday, July 10, 2011
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.
Monday, June 27, 2011
'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.
Thursday, May 26, 2011
Seven years. Five months. A lifetime. One little lifetime, to be exact, seven years and 5 months of missing a small boy who would be in first grade now, but is not. Who would be tormenting his big sister just like his little brother does, but is not. Who would be one of the great joys of my life. (Who is.)
Where am I on this journey of missing Ben? Ah. I am accepting. I am sad. I miss him with every breath that flows in and out of my lungs. The story of my life started the day he died: I don't think that's a sentiment you can understand unless you've been in these shoes. (But maybe not.) All that came before him--or much of it--was ordinary, unexceptional. And then Ben died. That is the beginning of my story.
I am better than ok. But the hole in my heart does not go away, does not fill in. It has scabbed over, there is a scar, and if you probe it too hard the hole might open again. But this is how grief is. I want Ben back with every part of my being but I have also accepted that this will not be. For if I had him back, I might have to give up James, and I could not lose him too. Yet I cannot have all three of my children, here and now, alive and well. And so there is a shadow, ever present, marking what was.
I am afraid of pregnant women; I'd prefer all pregnancies were kept secret until the baby arrives. I know all too well what there is to lose. My innocence is gone, never to return. But there is also a joy I thought was lost to me forever; it springs up like a tenacious flower after the lawnmower has passed overtop: nothing will hold it down, cut it off. It disappeared for a time but has returned, changed.
People told me losing Ben would make me stronger, make me better--but I dispute that. It changed me, certainly. I am more sorrowful, more introspective, more aware that all of us--the whole world--suffers from a broken heart, and that the pain manifests itself in different ways. Sometimes in anger, hatred, silence, or compassion.
I hate that people will still not acknowledge what we've lost, will stand in my house on the anniversary of his death and see my tears and say nothing. I more than hate it; it infuriates me, drives me to a rage beyond... reason? Or maybe just beyond. I want to say his name every day but know this will not happen; for some, silence is the only response they can manage, for reasons known only to themselves. And I try to accept that, knowing that some days I simply can't.
What I have: my living children, my life, they are good. Incomplete, but happy. I am lucky, and I know it, every day. I am so, so very lucky.
Saturday, May 21, 2011
If you're really worried, I'd suggest doing what I'm doing right now: finishing off the chocolate.
Saturday, May 7, 2011
Wherever you are in your mothering journey, I wish you peace on Mother's Day.
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
Thursday, May 5, 2011
If you are interested, the editors of r.kv.r.y. interviewed me about my writing and how loss is incorporated into my work. The link is here, if you want to read it (you will have to scroll down the page a bit).
(Self-promotion does not come naturally to me, so thanks.)
Monday, May 2, 2011
I'm sharing this video from Lancet TV, an arm of the British medical journal The Lancet, which published the study about stillbirth I mentioned in my last post. Richard Horton, editor-in-chief of that journal, made some wonderful remarks about stillbirth and how the tragedy of stillbirth has yet to become an important issue in maternal/fetal health today.
Please watch it, and pass it on. Knowledge begets understanding, and people need to know.Richard Horton on Stillbirths » Maternal Health Task Force
Thursday, April 14, 2011
According to The Lancet, 2.6 million women suffer a stillbirth every year, with 98% of those women living in developing countries. Worldwide, the rate of stillbirth has dropped only 1.1% per year since 1995.
Dr. Carole Presern, Director of The Partnership for Maternal, Newborn and Child Health, said: “Stillbirths need to be an integral part of the maternal, newborn and child health agenda."
From the World Health Organization website: “Almost no burden affecting families is so big and yet so invisible both in society and on the global public health agenda.” Joy Lawn, M.D., PhD, Director of Global Evidence and Policy, Saving Newborn Lives/Save the Children, and a lead author of this study.
Sunday, April 3, 2011
Thursday, March 24, 2011
Wednesday, March 16, 2011
Because a miscarriage itself isn't traumatic enough.
As wild and outrageous as I think Mr. Franklin's bill is, it makes me wonder: how far might this go? I don't believe this bill will pass (please God) but if it did, what about mothers like me who give birth to a dead baby who appears outwardly normal? What if you are among the 50-60% of parents whose baby is stillborn for reasons unknown?
Will they come for you?
Ben died because of a knot in his umbilical cord, and I was so strangely grateful that I knew why he died. I can only imagine how much worse it would have been to not know the cause of his death. And I can only imagine how very, very much worse it would be if some legislator got the idea that maybe my child's stillbirth was prenatal murder and I needed to be investigated, maybe even charged with murder.
Sound far fetched? Yes, I think so too. But this legislation in Georgia is outrageous enough to make me believe it could happen. Or be considered. As Americans, can we accept this? As bereaved parents?
I can only assume Mr. Franklin has no idea what it means to have a miscarriage. I wonder if he has experienced real loss. I could rant about politics here, but I won't. But I wonder, whatever happened to compassion?
Wednesday, March 9, 2011
No. You don't.
Sunday, March 6, 2011
"As for time passing: It’s been two years since my mother died. I — like my entire family, I think — am certainly less in grief’s grips than I was a year ago. But it’s not gone. I’m changed by it, the way a tree is changed by having to grow around an obstacle. Every now and then I see article by journalists or scientists who say studies show grief should pass in “six months” or what have you. But loss isn’t science; it’s a human reckoning."
What those who haven't suffered profound grief have yet to learn is that the anguish doesn't "go away." That those suffering don't "get over it." Grief stays, weaves its way into your DNA and is carried along with you, changing as the days march on, ebbing and flowing like the tides.
There are no absolutes in grief, no timelines, no maps. No day when you are "over it." It is not a malady which can be cured with pills or potions or the passing of days and years. I'd like to live in a world where there is more compassion for the bereaved, more understanding, less trying to hurry through. Less quantification by scientists and therapists and researchers, and more human understanding. Is that too much to ask?
Thursday, March 3, 2011
Said Prof. Jean Golding of the Avon Longitudinal Study of Parents and Children, "This study is important to the families of women who have lost a baby, since it is so often assumed that they get over the event quickly, yet as shown here, many do not.
This has implications for the medical profession as well as the woman and her family."
No. We don't get over the "event" quickly. As a matter of fact, we never get over it.
Wednesday, February 23, 2011
Friday, February 4, 2011
Yep, that's me.
It's one of those days when, despite my best intentions, not much is happening. Sure, I have some beef stew in the crock pot, have washed several loads of laundry, even worked out. But: the papers on the coffee table and kitchen table? Still there, despite telling myself I would sort them out all week. The dishes piled in the sink? Um, yeah, I'll get to them.
I'd much rather curl up on the sofa with a blanket and hibernate.
Funnily enough, I had to wash the pillows on my bed today. I do this about once a year, and it never goes well--the washer never spins them long enough, and I can never figure out how to program the washer to give them extra spin time, and I end up with a sodden mess that takes days to dry out. (Though I do think I may have figured out the extra spin time problem today.) But could I let that random project go today? Oh no. Had to get it done. Go figure.
And now, to save you from the boring life I lead, I offer a random selection of my favorite quotes. There is no common thread running between them; some inspire, some make me laugh. I'm sure you can figure out which is which.
"Insanity: Doing the same thing over and over again and expecting different results." - Albert Einstein (I believe I am the perfect embodiment of this quote after the week I've had.)
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt." - Bertrand Russell
"You must do the thing you think you cannot do." - Eleanor Roosevelt (Ah, but this week I am tired of doing the thing I think I cannot do.)
"You must be the change you wish to see in the world." - Gandhi
"Every blade of grass has its angel that bends over it and whispers, 'Grow, grow.'" - The Talmud
Any quotes or other bit of inspiration you might like to share?
Wednesday, January 26, 2011
I was a stay-at-home/work-at-home parent at the time, so the FMLA did not apply to me. The FMLA allows 12 weeks of time off to take care of an ill spouse or family member without fear that you will lose your job because of your absence.
From Kelly's blog:
"It is my opinion that the death of a child is one of the worst experiences that anyone can endure. Many employers allow for bereavement leave up to 2-3 days. Employees are expected to use their available vacation time after the 2-3 days of bereavement leave have been expended. If the employee exhausts both of these benefits and still requires additional time off the employer has grounds to terminate the employee.
I find it unacceptable that the death of a child is not included as a protected reason to qualify for 12 weeks of unpaid leave as part of the FMLA. If you agree with me, I ask you to do two things: 1) Click on the link below and sign the e-petition and 2) Share this link with people you know by emails it to your contacts."
If you agree, go here, and sign the petition.
Monday, January 24, 2011
Billy Donovan. John Pelphrey. Anthony Grant. NCAA coaches. Grieving fathers supporting each other, and reminding us that it never gets easier. But at least we're not alone.
Wednesday, January 19, 2011
-- Dwight D. Eisenhower, via BabyLoss Mamas & Maggie, on Facebook
Friday, January 14, 2011
A place to find what I needed after Ben died.
So how is it, for me, after seven years?
I have incorporated loss into my daily life, though some days I find myself whispering in a quiet moment, while doing dishes or folding laundry, "Don't go." In the first month after his death, I begged him, every day, to please, please come back. Now, though I hate that he is gone, that desperate longing for his return has waned.
But I still tell him I miss him, daily. I suspect I always will, even when I think I should stop because maybe I am holding on too hard.
I didn't think I could keep living after losing him, but I did, and I am. There are times when the pain returns, mostly around his anniversary, when I cry and rage and hate just how unfair it is to be here without Ben.
Seven years later, I am happy, but the sadness is always there, to some degree. I try to focus on the love he left behind, the love we have for Ben. I have carried on without him, at times reluctantly, at times because I am still here and need--want--to live my life. A good life, even a beautiful life.
A life still worth living. Never the same as before, but lovely nonetheless.