Mad, mad, mad.

This was bound to happen, but it pissed me off more than I thought it would.

So I was interviewed by a local newspaper about the group that I run. The woman who interviewed me was very thorough, and while she clearly had no context for understanding what it would actually feel like to lose a child and was obviously quite surprised by some of the things I had to say, she asked good questions to try to get a handle on what she needed to know. She was very intrigued that "people like us" take photographs of our dead babies. "You can do that?" she asked me incredulously. I told her that yes, you actually could, that it had once been very common for people to photograph their dead but had fallen by the wayside with the arrival of home cameras (which allowed many fortunate people to have photos of their loved ones alive). She asked whether she might be able to print a photo of myself with Charlotte in her paper, if her editor would allow it. She'd have to check with him.

Now I know, as the words are escaping her mouth, that there is no way in hell the editor of this conservative, Springfield MA newspaper is going to publish a photograph of me, unclothed in a hospital bed, with my deceased child, also unclothed, across my bare breast (no nipple, though!). Just the same, I encourage the woman to encourage him to publish it. I tell him about the positive reaction Mothering Magazine had when they braved the criticism and published the photo. I tell her how important it is to make this real for people. I send her the photo. I know it will be rejected.

So today she calls to arrange for the photographer to come to my house to photograph me "with my children". The editor, she reports, "couldn't withstand" the photograph of me with Charlotte. "It really upset him," she told me.

Oh, that poor editor. Imagine him being upset by that photograph of me. Imagine him having to step out of his charmed life for a moment and fathom that some people have to LIVE with the reality EVERY SINGLE DAY that their child is dead. Pity that poor man for having to face me for a brief moment, to know that all I have left of my daughter is a black and white photograph. How upsetting.

I informed the woman that I was deeply offended by her publisher's decision. I then asked her if he would permit me to be holding a photograph of Charlotte, just a head shot, in the picture that the photographer took, so that it would be very tiny. She left, asked him and came back.

Nope.

So I told her that perhaps my living children wouldn't be in the picture after all. I told her they could choose to include my children, or not. I really wanted to tell her to tell her editor to take the article and stuff it up is a** but frankly I appreciate the publicity of the article, whatever it includes, and certainly it will inform lots of people who might otherwise never hear of our group which is of huge value to me.

So what I've decided is that once the article is published, (and I'm scheming ways to include Charlotte in the picture otherwise, don't you worry) I am going to try to organize a letter writing campaign to the newspaper regarding the article and in response to the fact that there was no photo included. So I hope that you will be willing to send a postcard for me when that time comes. I'll keep you posted. I really am so much more pissed off than I thought I would be. Even though I knew, knew, knew what they would say. Knew it! But it bit my soul deep down. Truly I wanted to cry.

(I also felt a lot of rage, and wrote and deleted a lot of expletives while writing this. I don't like to think of myself as a huge F word person but let me tell you the F bombs flew)

Legislation

This is the Stillbirth-SUID bill that is going to be introduced in Congress. Imagine somebody paying attention to this issue. It is almost a miracle.

The Stillbirth and SUID Prevention, Education, and Awareness Act would improve the collection of critical data to determine the causes of stillbirth and Sudden Unexpected Infant Death (SUID), increase education and awareness about how to prevent these tragedies in the future, and expand support services for families who have experienced a stillbirth or SUID loss.

Every year, there are more than 25,000 stillbirths in the United States. Many of these deaths are the result birth defects, infections, umbilical cord problems, and chronic conditions of the mother. However, there is no known cause for as many as half of all stillbirths, leaving many parents without answers to the reasons for these deaths. This bill would expand current activities related to stillbirth and increase education and awareness among health care providers and families. Specifically, it would:

· Expand current data collection activities to additional states to identify the causes of stillbirth and ways to prevent it in the future.
· Create a public awareness and education campaign to educate women about the risk factors for still birth and the importance of prenatal care.
· Expand support services, such as grief counseling, for families who have experienced a stillbirth loss.
In addition, there are more than 4,600 sudden unexpected infant deaths each year and another 200 children between the ages 1 and 4 die without any obvious cause for their death. Many such tragedies could be prevented if there were a better understanding of the reasons why these infants and children died. The Act encourages states to complete scene investigations to better understand why these children died and establishes a national database to track these deaths and identify risk factors to prevent them in the future. Specifically, it would:

· Encourage states to complete scene investigations and autopsies to help determine causes of death and collect uniform data.
· Provide funding to train state and local personnel on completing scene investigations.
· Expand successful child death review programs to review the circumstances surrounding infant’s and children’s deaths in their community.
· Establish a national database to track these deaths and identify risk factors to prevent them in the future.
· Create a national public awareness and education campaign to educate parents and caregivers about known risk factors.
· Expand support services, such as grief counseling, for families who have experienced the loss of a child.

Senator Lautenberg (D-NJ) will be introducing the Stillbirth and SUID Prevention, Education, and Awareness Act in the coming weeks. If you would like more information on the bill, please contact Apryl Clark at 224-3224.

It was three years ago this March morning that I woke up to sunlight streaming into my bedroom window with little Aoife, swaddled snugly in her little, blue-and-white flowered blanket, tucked tidily into the bed between us. I remember watching her and Greg sleep, both of their faces were turned towards mine, and just breathing deeply. Everything seemed so calm, so calm. She was healthy. I was healthy, and I felt so fit and well having had such an effortless birth. I could manouver myself with ease and the anxiety that had hung over me like a dismal grey cloud upon bringing Liam home was not there; over the past two years I had gained trust again, trust in myself as a person capable of sustaining life, I knew I could do it.

I remember also a morning in May, it was the 15th, and I woke up on that day to sunlight streaming in a different window. On that day I was flattened, I was mashed. I had nothing left of me to speak of. I was downstairs, on the pullout couch, claiming that I was too sore to climb the stairs. In truth I could not bear to see the door to the little room that was supposed to be hers, so I stayed down there on the pullout for almost a week until I could summon up the courage to face what lay beyond the closed door. And that morning the sun streamed on my sleeping husband's face, and I picked up a notebook that was half filled with his French assignments and I wrote the first thing I had ever written that meant something to me. It was a beginning in many ways.

And back again, it is not even three years later, and my second sweet child is in my room, having been dressed by his grandparents, and he is so eager to see his new sister, to kiss her and love her and to be loved by me. I remember the slight terror that he would squash her, and then the overwhelming miracle of having not just one, but two of them there with me. Could it really be?

I still wonder.

Deep in the heart of a birthday weekend, the world whirls around me and I spin with it, riding the beautiful ride of children and laughter and loving this life, loving this life...
Imagine that six years ago I still did not know what would come, and that five and a half years ago I truly believed I would never, ever be happy again.
My the world spins quickly when you break it down.

More to come...
I must find calm.

My 3

I love it when something just slips out of my mouth and confirms for me what is already true. I love it even more when somebody hears what I am really saying. I was talking to a friend about how, when I take Aoife somewhere that I usually take Aoife and Liam to, I really miss Liam intensely (usually he is at nursery school when this happens). And this is what I said:

"Whenever I take Aoife to a place that I usually take all my kids to... uh... I mean both my kids to, I really miss Liam."

My friend, Gina, let out a sigh. She heard the slip, too, and wished it could be true. Wished I could take all my kids somewhere, anywhere.

I can hear some people's response to that now: "Oh, but you do! Charlotte is with you all the time!"

Yeah, but not so much, really. I'd really rather have the whiny, back-talking, sticky, overtired almost-six-year old than all this spiritual wisdom.
Having the thought, the notion, the idea that perhaps your daughter's spirit is, indeed, always with you is a pretty shitty consolation prize when what you wanted was just the daughter, for whatever she would have been.

Go make something!

Here's what feels good: making stuff. Last night I sat down with my sewing machine and a piece of material and about 45 minutes later had the cutest little twirly skirt for Aoife. I was so satisfied for having carved out the time to create something cute for her. She was so delighted in the morning.

We also have gotten back into the habit (once had, yet long abandoned) of baking our own bread. We do have a bread machine but the bread tends to be dry, and our real homemade recipes were very labor intensive. Until this recipe came along:

Get a huge bowl or container and mix (as in stir with wooden spoon) 6.5 cups flour, 3 c. water, 4.5 tablespoons of yeast, 4.5 tablespoons of salt. Leave it on the counter for 2 hours. Then put it in the fridge, and when you want bread, pull a blob out, roll it in flour, and leave it on the counter for half an hour while your baking stone heats up to 450. Then put it in for 30-35 minutes, and you've got bread. No kneading, no work, it's amazing. We have experimented with combinations of whole wheat, bread flour, white whole wheat, etc. and it seems the best results are when at least half the flour is white.

The things that I work on with some regularity, which are sewing, knitting, and other crafty pursuits, are always the things that will get pushed to the back burner of my life when things seem too thick to muster. It surprises me because people will say to me, "I don't know where you find the time to do those things," and I think to myself, you silly, you just have to make it, which is true. You just have to say, Thursday night is my night, and if there are dishes on the counter, I put them in the sink where I can't see them and I do them on Friday morning because now is my time to sew. But as much as I think to myself, you just have to make the time, how easy is it to NOT make the time? To feel overwhelmed by the closet that needs cleaning, or by the pile of work that is on your desk, or by your SADNESS because your baby died? But every time, no matter what it is that is preventing me from making something, whether it's a sewing project, or creating some art for somebody, or cooking something wonderfully delicious after the children are tucked into bed, once I start doing it, I am absolutely taken with what I am working on and couldn't be happier. I also, once I have started to work on something enjoyable, couldn't care less about the things that I'm not doing.

So just do it. Pick up your knitting, or get a pattern for something cute. Bake something you've never tried before and invite a friend over to try it out. If you're babylost, like me, think of something you can make for your baby-- a cross stitch, an embroidered something, or something to embellish their special place in your house. Making things feels good, and if you don't know how, just try it. Get a book. Use your hands. It is so good for the heart and soul.

And the truth is, about the things that bog me down? It's all things that are self-imposed. Nobody else cares if my art closet is a disaster. My work that I do at the hospital, while it is amazing and so fulfilling, I am making my own deadlines and projects up as I go along. I hear people talking about the things that prevent them from having fun, obligations at work, and so on. I wonder what would happen if sometimes they said no. For me, I know I need to recognize the things that make me the best possible person, who is happiest and the most productive, and make sure that I make time and space in my life for all of those things.

Because I could, you know, die tomorrow, and I want to make sure I'm happy on the way out. I do like to think that my first little girl, through all the sadness, has really helped me to be happier all around.

Salted Strawberries

There were strawberries on sale at the grocery store a few days ago, obviously grown somewhere very far away under perhaps questionable circumstances, but strawberries nonetheless. But unlike the strawberries one usually sees in March in the grocery store, these ones I could smell the moment I entered the store, and they were huge, and bright, bright red, and swollen with nectar. I bought two boxes, and greedily brought them home and left them on the counter so that they would be warm and soft when we ate them.
The next morning I poured myself and the kids bowls of Cheerios and cut four or five of the reddest looking ones on top, and the juice was pouring down my fingers they were so ripe and divine.
We sat down to eat, me and my two miraculous children who rose from the ashes of my shattered life like little, golden phoenixes, their blond hair touseled from sleep and their cheeks rosy. Their lips shone with the milk and strawberries as they slurped up this delicious breakfast, and I looked at them in awe as the combination of ripe-tasting strawberries and Cheerios cereal brought me right back to June of 2003, when Greg's parents picked us pounds, and pounds of strawberries.
They didn't know what to do with us, lying limp around our home surrounded by wet kleenex, the wet spring air blowing in the windows as we sat and mourned. So they did what many people did and they gave us things, because they didn't know what else to do.
So I took those strawberries and I cut them up and put them on my cereal in the morning, and every single morning, I would sit at our wooden kitchen table, and I would lean over the bowl of cereal, and I would cry as I ate my cereal, and the tears would drip off my nose and my chin and they would land in my cereal bowl, so that the last few bites of my cereal were salty and warm and almost a little disgusting.
Not that I cared.
I was eating only out of habit, with a slight secondary purpose that there might be something way down the road worth living for. Certainly Charlotte had taught me the power of a mother's love, and to render this worthwhile I would have to keep myself alive to give it another go. As if I could imagine that possible. It was not possible at that time.
I had nothing truly worth living for in that moment, just myself and the thought that if I were to die I would inflict that same anguish that was crippling me upon those who loved me, and so therefore I ate my cheerios, even when they were warm and soggy and salty, and my heart ached and I wondered vaguely, rather than hoped, that something good could rise out of this catastrophe.
And so there I was the other day, nearly six years later, looking right at them, the beautiful results of my most dreadful tragedy, the two that I could never trade even if I could get her back. Fortunately for me there is no choice to make, I have what I have and it's not Charlotte, and I can hold her next to my heart and feel that it is swollen bigger with love for everyone around me because I have loved her.

The memory was triggered, the memory of the sadness that ties like a thick rope across your chest and threatens to suffocate you and stop your heart, but which I have beaten down to a thread that I wear like a badge. It is a badge of love for Charlotte, I will not let you go, I will feel the pain, I will keep you. And how I will love your brother and your sister, how I already do. I wrap myself delightfully in the blanket of their joy.

The Lost

A red moon, huge and swollen, hung over the horizon as my little silver car wove past trucks on the 401 East as I droned on towards Kingston, seeking sleep and solace. The highway hummed but it was down to three lanes, my hands relaxed on the wheel for having left the whirling rush of Toronto and the weekend traffic behind me. The radio was off, so I could hear myself inside my head. The dark was wrapping itself tightly around me, and I was warm, and felt incredibly full of love from the day that had passed. But my heart wept, it wept.

I looked at that moon and I wished that my cousins could see it, my cousins whose baby slipped away from them last Wednesday in the earliest hours of the morning, as they slept next to him wishing for just one more day. I wished that they could see this fiery ball, this amazing, magnificent, absolutely collosal moon rising over the eastern sky on the evening of the day that they had formally said goodbye to Andrew, because if they could have seen it, it would have been their first of many signs that he would never leave.

Through their whole ordeal, I can tell you with absolute certainty that there was not one single day where I did not think of them and hope with all of my being that their child would live. And I like to believe that I did this differently from the way other people did, because other people did it because they did not want him to die, and while I (obviously) also did not want him to die, I also squirmed in anguish at the knowledge of what it would feel like for them if he did. Not only did I want the baby to live because he was beautiful and loved and had this amazing fortunate future ahead of him, not only did I want him to live because his parents and his sisters adored him along with hundreds of other people, not only did I want him to live because he deserved to, but I also actively just wanted so desparately for his parents to be spared the agony of his loss.

But it was not to be so.

Today is Monday, and I am imagining this as the day that they are bringing their little girls to school and suddenly realizing that it is over, it is over, and that the pieces have been picked up for the most part and now they have to do.... what? Where to begin? The settling in of everything being gone, of the new life beginning, is the most dreadful acceptance to come. The reluctant, resisting thought of I do not want this life, I do not want this to be me that they have been struggling with for seven months now has come to a new level, because action is over. No longer can they fight this life with conversations with doctors, new procedures and treatments, with perfectly synchronized schedules that provided their sweet Andrew, for the 201 days that he was at Sick Kids, with a loving caregiver at his side for all but eight hours of his stay. Just to give you a fraction to symbolize this, Andrew was alone at the hospital for only eight out of 4,824 hours, which is one six-hundred-and-third of his stay. Or approximately .16583% of his time there. This is some amazing work on the part of two parents who also managed to eat dinner as a family with their two little girls almost every night of the week during their whole ordeal.

But today? They eat dinner together and tuck their girls in and there is nothing left to do, and this is where suddenly now I do feel like I have much in common with them, particularly the mother, because I can feel the iron vise closing on her heart, the absolute ache and deep stabbing pain that brings you to your knees and rocks you to the core of who you are, because you made something that you loved harder than anything and somehow you couldn't keep that baby here. I can feel that ache in the middle of my body which persisted long after all remnants of childbirth were gone, that searing fire that told me my heart would never be whole again. I can hear fragments of others' laughter, of mothers conversations around me with the ears of the grieving, in a place where the mundane can seem unbearable in the face of the insurmountable tasks that lie ahead.

I want to write that mother a letter that is a thousand pages long, I want to try to tell her that if she lies for seven hours on her face and cries until her voice is hoarse and she can barely open her eyes that someone else has done that before. I want her to know that when she cries in the grocery store or wants to sideswipe a good friend who makes an insensitive comment or if she is hurt by somebody close to her that somebody else has been there.
There is too much to tell. Where would you begin?

Helpless

It is hard to be helpless, but we often are.
I have a cousin, and we have never been close, and his baby is dying right now.
They brought him home from the hospital last week on palliative care.
And so what can I offer?
The answer is, probably nothing.
Nothing at all.
When I think of their struggle with the leukemia, and the seizures that followed, and the multiple infections and bleeds and everything that came with everything, I feel as if I have nothing that I can even offer to them.
But when I think of them at home on his fifth birthday, with a cake and his siblings and no Andrew to show for it, I do feel like I have so much I want to offer.

Honestly I know that probably they will never want a thing from me. But I am sitting here anticipating the heartache that they will feel, and I think that when somebody's gone, and you have this void in front of you, things seem a little more universal.

All this makes Charlotte's death seem so simple and easy. And that's hard for me, too.

The Happiest Day...

Tonight I pulled my sweet smelling, dripping wet Aoife out of the bathtub, and she laughed and told me she was four years old.

"No, you're not", I told her, "I was there when you were born. It was one of the happiest days of my life. Tied for the happiest day of my life."

And I thought to myself, tied with Liam's birthday, but what about Charlotte's? How do I classify that?

It wasn't the happiest day of my life. My baby died in my womb, and I had to birth her to silence. It was a dark, grey, rainy day and I didn't know what to do with myself. I laid in the bed and dozed on the epidural which I gratefully accepted to try to numb the pain of my loss, hoping that some alleviation of physical discomfort might allow me to expand within to allow for the emotional roadwork that lay ahead. I felt dismal and cheated, numb and dissociated, and quite uncertain of what to expect in the coming hours. I needed to get away.

And then she was born, and the world as I knew it fell away like a curtain being snipped apart in little strips, because suddenly I was a mother and I knew about the secret mother love that nobody could ever truly put into words that could be understood. In that very moment of awful truth, when my baby emerged from my body and lay on my belly, lifeless, I fell in true love for the first time, and I felt joyful for having made such a beautiful creature, regardless of circumstance. I felt infantile in my delight in her tiny details, in my curiousity of her little body, in my passionate care for her whole self. The feeling that coursed through my veins as I held her and kissed her and came to know her as well as one could on that day was....

what was it?

was I happy?

I was not happy, because I was knowing that whole time that she was gone, and that she would leave me soon, and I could feel my heart welling and swelling in my chest and I knew that it was just on the cusp of breaking. But I was proud, I was so proud, and I was so full of love.

So it was not the worst day, either.

But what brings it up on the pedastal, back up there almost next to Liam's birth day and Aoife's birth day is this: If I could re-live one day of my life, I would relive that day, I would go back to May 13, 2003. And I know I could not change the outcome, and I know she would still be born without a cry. But if I could hold her again, and if I could kiss her tiny face another time, and hold her tiny fingers, I would, truly, be very, very happy.

Gone

We did not bury Charlotte, and there were times that I yearned for the formality of this, the graveyard, the gravestone, the truth of one's being. Life can be proclaimed through a headstone, if that makes sense, whereas my daughter in her little white urn can be found nowhere by nobody, unless you happen to be in my bedroom when I'm not looking.
But this is the other truth, one I have never spoken, which is that after we cremated Charlotte I had a number of moments where I could hardly face myself for having made the decision. Flickers of fire and heat and disintegration and ashes would creep into the edges of my consciousness and it was all I could do to push them away. What had we done? We had turned our daughter into nothing at all. We could have dressed her beautifully and laid her calmly to rest but instead we undid her, we destroyed the perfection that had been her body. My heart ached.
And then I pictured if she had been still there, beneath the earth, and I knew this to be true: if she had been somewhere, I would have been unable to keep myself from her. I would have laid myself across her grave, I would have scraped the earth away with my fingernails bleeding to try to reach her. I would have been incapable of knowing that she was somewhere, that she did still exist, and that I could not reach her. I can see myself now, tearing at the ground, blinded by tears, trying to get to my baby.
But I do still feel empty knowing she is nowhere. Returned to the sky, to the air, but there is nothing left, and my body yearns for her still, all nearly six years of lankiness and something I will never know.

Milk

The image is me, and I am in the shower, facing the flow of the water. I can hardly stand the feeling of the water on my breasts because they hurt so much. After Liam was born, I used to practically weep for myself when people would complain of their engorgement; engorgement while they were nursing a living child. I could never open my mouth to say what the pain is like to feel the milk of a child who is no longer there, to feel the bursting of breasts unaware of the tragedy that has befallen their body.
The midwife has told me that I should avoid this, the water contact, that I should avoid any and all stimulation because anything will cause more milk to be made. I should try not to get them wet and I should try not to touch them and I should keep them bound as tightly as I can at all times, and ice them for the pain. I was popping pills like candy for the pain, but truly it did not do any good. What was the pain that I could feel, the throbbing and pulsing of the rock-hard flesh into which I could not even think of pushing a finger? My breasts wrapped all the way round into my back, and they were ridged and dimpled with the swollen ducts. They were purple, they were not human. They ached, they ached. But my heart hurt more. This was a minute piece of what my pain was.
And I wanted the milk, as much as it hurt me in more ways than one, I wanted it as evidence, as the truth of what had happened: I had been made a mother, I was being christened by this bath of life-sustaining fluid. This here, this sweet, white, sticky milk that dripped down my belly and fell onto my feet was my holy communion of motherhood, it was the thing that told me yes, you are still a mother. And so even though I wasn't supposed to touch them, I did touch them, and I let the water run on them and I watched the milk pour out into the bathtub and swirl down the drain, a cloudy puddle of a life that could have been.

(And so I say to you, all you mothers to be out there, all you swollen-bellied fountains of fecundity, if you can, if it is at all possible, unless mother nature prohibits you for one reason or another that is real, NURSE your baby because she needs that milk, please don't let there be another drop wasted unnecessarily)