Tuesday, March 31, 2009
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.
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)
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.
Monday, March 30, 2009
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.
Sunday, March 29, 2009
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.
Monday, March 23, 2009
"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.
Saturday, March 21, 2009
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.
Thursday, March 19, 2009
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.
Monday, March 16, 2009
There is too much to tell. Where would you begin?
Monday, March 9, 2009
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.
Thursday, March 5, 2009
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.
Tuesday, March 3, 2009
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.
Monday, March 2, 2009
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)