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One year ago, on February 15th, at 3:27 in the afternoon, Eliana Meredith entered our world. She was beautiful, and soft, and perfect, and an utter joy to me. As I sit here now, one year later, I hardly know what to say, or think. It is still so unbelievable to me that it all actually happened, or that it has been this long already. As much as I grieve and agonize over her death, though, I will never regret her birth. Even in my sadness, I will still celebrate her life. If my pain is the price of having been able to love her, no matter how briefly, then I will gladly pay it.

When I was pregnant with her I watched Steel Magnolias-I know, call me crazy. The line that stuck with me, that still sticks with me, is “I’d rather have five minutes of wonderful than a whole lifetime of nothing special.” I would rather have had my two months with Eliana, than to have never known her at all. It hurts that she’s gone. It hurts unimaginably, sometimes unbearably, but she was worth it. And now, one year later, sitting here without her and crying even while I write this, I can say that February 15th is a good day, a happy day. It was the day I met my precious Eliana, and that will always be something to celebrate.

Happy birthday, little one. I love you always. -Mommy

I’m in love. No, don’t call my husband please. The object of my affection is no threat to him. I’m in love with the rainbow baby. The day he was born I held him for …. about eight hours. Do you think that’s excessive? It was hard at first to be sure. I cried on the way to the hospital. I cried walking in. I cried in the elevator. I cried when I got to the room, and when I first held him. So much fear and joy and sadness and wonder, all tangled up together.

The worst part, though, was after the nurse gave him a bath. He was crying, so I went over and held his hand and stroked his head. Then it hit me forcibly that this was the same thing I used to do with Eliana-same overhead warmer, same hand holding and head stroking, same whispering that everything would be okay. It was like a knife in my heart, an instant transport back to those horrible, endless days and nights at her bedside. I stood there sobbing, onto my shoes instead of onto him, though. He was upset enough over the bath already. What a lucky little thing, too young to know that sometimes everything is not okay, not even close to okay.

The next day I was thinking about him, and musing about the fact that he is the first child besides our three girls that I have ever bonded with ….and then the panic set in. I’m moving! What in the world was I thinking? Why didn’t it occur to me beforehand that I would have to leave him? That if I allowed myself to love him, my heart would feel it as another loss? Should I have held back, built a nice safe wall to protect me from any more pain? Was I so anxious to love a baby again that I was foolish to do so with one I won’t even get to see very often? Should I have kept a tighter reign on my emotions? How did I not realize this until after I fell in love with him?

Interesting questions to be sure, but all a little too late. I love this baby, and it already hurts to think about leaving him. I don’t know why I’ve never had (or really tried to make) a connection with the other kids I could have been “Auntie” to, but I was finally ready to try it. Unfortunately, it seems I won’t get the chance now. When I said I wanted to love him from a distance, I didn’t mean from a whole state away. Any emotional distance I thought I was going to have went out the window the first time I held him. What do I do now? I’m in love with the rainbow baby, but I won’t get to see him grow up either.

The Mask
By: Gwen Flowers

It doesn’t fit me very well,
But it matters not, you see.
Because most people do not want
To see the real me.
It’s much too painful for them.
So they avert their eyes.
Their platitudes are only words
that I’ve come to despise.
They can’t bear to confront it.
They don’t know what to say.
They think if I ignore it,
The pain will go away.
But I cannot ignore it.
It is too deep and real.
And those who’ve never lived it400
Just don’t know how I feel.
No one wants to face it
When a baby dies.
They quickly try to hush
A grieving mother’s cries.
They say I should be moving on.
They don’t know what they ask.
So, to spare their feelings,
I put on the mask.

One of my closest friends is pregnant and is due on February 21st, just 6 days after Eliana was born. Needless to say, we have had many discussions about the various emotional responses we’ve both had. I am both terrified and excited about the possibility of her child being born on the same day. What an incredible cyclical sort of irony there would be in that-a living testament to the reality that life goes on. It never occurred to me to ask, but I realize that her baby must have been conceived somewhere around the time that mine was dying.

To be honest, there are few people in this world that I could have been truly happy for if they had told me that news at that time. She happens to be one of them. It has been both painful and healing to watch her go through her pregnancy. It’s like watching a fuzzy movie of myself one year ago. The discomforts, the growth, the expectations, the waiting-all the things I went through at the same time I went through them, but from a distance.

Because it’s her, I don’t hate her for her pregnancy. I don’t hate her for her happiness, or for her complaints. Because it’s her, I don’t assume she is naive about the fact that sometimes babies die, and I know that she does not take this gift she’s been given for granted. She knows, and that makes all the difference.

I have a much harder time with strangers, or for that matter, with acquaintances who know I lost Eliana, but who never said anything to me about it. It may be unfair, since I don’t know for sure what has happened in their lives, whether they have ever lost a child. Unfair or not, I have to fight the resentment I feel over the thought that they don’t know how lucky they are, and anger over all the times I have to sit and listen to them griping about inconveniences I would give anything to have back. I want to scream at them to shut up and go hug their babies, that they might not have them tomorrow. But I don’t.

Would I have listened if some crazy lady had started ranting to me about appreciating my kids while I still had the chance? Would I have understood if a newly bereaved mom had cried to me to not wait until it was too late? Was I only able to truly let in the horrible, unbelievable truth of child death after it had already happened to me? Was it just too terrible for my mind to accept until I no longer had a choice, because I was living it?

Does my anger and resentment toward the clueless really just stem from jealousy over their lack of knowledge of this agony I now call my life? That may be it. I’m jealous-of not knowing, of not feeling, and of not understanding the grief of losing a child. I don’t want to know what this is like. I want to be clueless too.

I wish I could go back. I’d give up my greater empathy, my fundraising, my collection drives, what I’ve learned and how I’ve grown, who I’ve helped and all the people whose lives have been touched by my baby’s story. I’d give it all up to turn back the clock. It was too high a price. Losing Eliana is not worth whatever I may have gained from the experience of going through it. Selfishly enough, it’s also not worth whatever others may have gained from it.

Nobody is given a choice, though, about whether they want to go through hard things. I would certainly never have chosen for my child to die, no matter what good may result from it. And I suppose if I had been given a choice, I probably would have thought that going through my friend’s pregnancy, with it’s eerie deja vu timing, was way too hard too. Better to put it off-too hard to deal with right now. But as soon as she told me, the whole thing just felt right-difficult, but right.

And now, I’m greedy for this baby, so anxious for him to be born. I want to hold him in my arms and be comforted once again by the thought that most babies are healthy, that most babies don’t die. I need to cry on his little head, both in sadness over Eliana being gone, and in amazement over the miracle of birth and life. He is both a reminder of the past, and a hope for the future. I need to love him, but from a distance. I need to test out the waters of opening up my heart again to a baby, to work through the fears and confusion and guilt of loving again after losing her. I’m grateful to my friend for loving me enough to put up with all the weird, convoluted emotions I already feel for her little boy.

The people on the grief support forums have a term for a child born after they’ve lost one-a rainbow baby. That’s what this unborn child is to me. He may not be my rainbow baby, but he is the rainbow baby. He’s the baby born after Eliana, the baby that represents promise-promise for his parents, promise for me, promise for the future, and promise for the world. There will always be pain, but there will also always be joy that follows it, just like the rainbow after the rain. Sometimes it appears right away, and sometimes we have to wait a while to see it. It has been a long, rough storm, and I’m looking forward to seeing a rainbow.

Happy New Year. What does that mean to me now? That at some arbitrary division of days I’m supposed to feel like I can just start over fresh? That since I have a new calendar I can forget whatever happened during the time the old one hung on my wall? Much like someone who moves to a new place to outrun their problems, I find that mine have followed me here. I’m still the exact same bereaved mom today in 2009 that I was yesterday in 2008.

I started thinking yesterday about what I was doing at this time last year. I was eight months pregnant, getting big and heavy and uncomfortable. I was torn between being desperate for the baby to come out, and terrified of how I was going to handle three kids once she was here. I was seeing my midwife, and chiropractor, and cleaning obsessively. I checked and double-checked my lists, and made double batches of food to freeze for later. You know, all the normal things an eight months preggo woman does. And the only thought that comes to mind with these mental pictures is “normal.” It was all so normal.

It’s like watching a horror movie. You hear the music start to change, you see the character heading toward danger, and you want to yell at them. You want to warn them about what’s lurking around the corner. You know what’s going to happen, and you want to scream for them to stop and go the other way. But they can’t hear you. The script is written, the scene has been shot, and there is nothing you can do to change the way it’s going to play out. You can only sit on the edge of your chair, biting your nails, waiting for the ax to fall.

The excitement, love, fear, drama, and pain of Eliana’s life and death have been carved into time, unchangeable, unerasable, uncorrectable. She’s a part of history now, instead of a part of our world. Screaming to the unsuspecting, naive woman of last year is utterly pointless. Trying to warn her of the impending disaster won’t change anything. Just like the new calendar on my wall doesn’t change anything.

Every day now is an anniversary of a day last year when I was looking forward to Eliana’s birth, instead of mourning her death. That wonderful time when I actually fretted over something so minor as how to fit two toddlers and a nursing baby on my lap all at once for story time. Before I knew that I should be on my face giving thanks for the gift of having them here in the first place, because they can be taken so suddenly. Oh, to be that clueless woman again.dsc_0045-1abw_filtered

So it’s a new year, but it’s the same old life. Full of the same sorrows and regrets of the last eight months, and the ugly reality that being wished a happy new year doesn’t mean it will be so. I can hope, but I no longer expect. I don’t really know if that is good or bad, but I do know that it makes me very sad. The woman from one year ago now walks around with an invisible broken heart. The show is over, and it was definitely a tear-jerker.

People frequently say things to me, that perhaps they truly believe are going to comfort me, or perhaps they truly don’t think before they speak. Either way, I’d like to dispel another myth. Here it is. The fact that I have living children does not make up for the one that is dead. The fact that I can have another baby does not make up for the one that is dead. The only thing these statements say to me is that the people who speak them really have no clue what they are talking about.

When someone makes one of these remarks, my first thought is usually something along the lines of “Okay, then how about you stick one of your hands out here and we’ll chop it off. Sure, it will hurt a little at first, but you should be able to get over it quickly because you do still have another hand, right? As a matter of fact, after some arbitrary amount of time (determined by me, not you) I do not want to hear you ever mention that you are having a difficult time dealing with the loss of your hand. Don’t ask me for help. You just need to be strong. No complaining. That will just tell me that you are ungrateful for the hand you have left. And would you mind terribly keeping your stump hidden? Looking at it makes me uncomfortable. Hey, where are you going?”

Do you see my point? Nobody would use that kind of reasoning when talking about their hands. Why in the world would that kind of logic apply to one of my children? Bottom line-it doesn’t. It doesn’t apply at all. It is faulty reasoning.

I love my living children. If I am lucky enough to be able to have another baby, I will love that child too. I love them so much it hurts. I love them more than my life itself. But they do not make up, could not ever make up, for my Eliana not being here. They are not machine parts, easily interchangeable. They are people. They are my children. I cannot swap one for another, and in doing so, somehow patch the hole in my heart. The Eliana size hole is there to stay. It cannot be filled with anything, or anyone else. I could have twenty s41588cb110832_5more children, and I would still grieve for my precious baby.

I miss her, will always miss her, much as I suspect you would miss one of your hands (or one of your children) if you happened to lose one of them. That which is precious cannot be replaced. It would be foolish to try. And it is foolish to ask me to do so.

Here I Sit

By Deanna Parish

Here I sit

Living inside this shell of a life

Moving forward but getting nowhere

So tired that I don’t even care

Here I sit

Living inside this shell of a marriage

Talking but not sharing our mutual pain

Feelings too difficult to explain

Here I sit

Living inside this shell of a mother

Loving but yet afraid of the cost

Knowing the grief when a child is lost

Here I sit

Living inside this shell of a person

A body alive but not really living

Too little left to keep on giving

Here I sit

Living inside this shell of a home

Pretty but hiding the ugly ache

No amount of time will ever shake

Here I sit

Living inside this shell of a faith

Asking but afraid of His reply

To why my dreams have all run dry

Here I sit

Living inside my shells so frail

Trying to protect them to no avail

One small blow will do them in

And crush the woman sitting within

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I was sitting in a waiting area of sorts a few days ago, while my kids were in a class. From that vantage point, I could look into the room where my children were, and also see the pool outside. A few other people were sitting there too, and none of them seemed to know anybody else. So when the man nearest to me started talking, I wasn’t really sure who he was addressing. Maybe all of us. Maybe just himself. I don’t know, but his words struck me like a blow to my chest. He said “Do you see that woman in the wheelchair getting into the pool? That is courage.”

I agreed with him, but my mind started going in a different direction, as it often does these days. I am a classic example of a person displaying what is called “the narcissism of grief.” I have the uncanny ability to take the most unrelated topics, and morph them into something about the death of my daughter, and the grief resulting from it. That day was no different.

Like the woman we saw through the window, I suffer from a handicap, something that cripples me and makes me less than whole. My condition makes life harder, more painful. It makes the seemingly simple tasks almost more than I can handle sometimes. People look at me funny. Some just don’t care that I hurt. Some wish I would go away so they don’t have to think about my situation. I wonder why this happened to me. I wonder why this should have to happen to anyone. I wonder about my ability to go on, to keep struggling with this burden thrust upon me, unchosen, unwanted, and unending.

But I still choose to live. I choose to try and make some meaning out of this suffering. I choose to keep fighting-against my own feelings of futility, against rude or thoughtless behavior from people who don’t understand and maybe don’t care to, against a world that would rather pretend that infant death doesn’t happen, even if it means abandoning the parents who are going through it.

So, symbolically speaking, I choose to get into the pool. Even though it hurts me to do it and hurts others to watch it. Even though it exposes my weakness, and makes me more vulnerable. Even though it forces me to ask for help, and admit how needy I am. And even though I run the risk of slipping, of going under and coming up sputtering, maybe again and again.

There is no right way to get into a pool. There is only the act of doing it, despite the fear of drowning during the attempts. I, and the many, many people I know who have lost children, are doing exactly that. We may not be diving in, but we end up in the water eventually. And as that unnamed man so eloquently stated that day, “That is courage.”

I’ve spent most of the last week crying. My Eliana was born on the 15th, and died on the 19th, so at least a week out of every month is now very difficult for me. At what would have been her six month birthday I thought I was doing pretty good. Then seven months hit and it was much harder. I’ve just passed her eight month birthday and in many ways I’m even worse than I was at the very beginning. The blessed numbness is gone, leaving only the raw aching.

If someone just had heart surgery, they would be given pain-killers without question. We would think it inhumane to not medicate them after such an invasive procedure. But here I am, a physical part of me ripped away, and I have no pills. There is no prescription to make it hurt less, to ease the agony of having an Eliana size hole bluntly cut from my heart. My God, it hurts, and there is no comfort.

The ragged edges catch, on thoughtless words, and unexpected memories of her. My wound is ripped open, over and over again, by the sudden sight of other baby girls, or by the relentless weight of my own sorrow. My heart is shredded, and there are times all I can do is sit and cry and moan. I can’t move. I can’t breathe. I can’t do anything but sit, enveloped in the pain, doing nothing but feeling the immeasurable grief of this life without my child, of knowing what I’ve lost.

The suffering comes in waves, though. It’s not always suffocating. It’s not always unbearable. But like a wave, I know it will always come back. The time in between may get longer. The manic feeling of unending tears may not last as long as it did the last time. But it will always be there, waiting to overtake me yet again. This is my new life, the one I’m forced to live since my Eliana died in my arms. My God, it hurts, and there is no comfort.

Today is the National Pregnancy and Infant Loss Remembrance Day, and it’s also the day Eliana would have turned 8 months old. I lit one candle in remembrance of my baby, and some more in memory of all the other children who are no longer here. I wanted to share this with you, but I did figure a few people would not be overly impressed with this “DAY” since there seems to be a “day” for just about everything now.

This got me thinking about our vast array of holidays we can choose to celebrate. Talk Like a Pirate Day is one of my favorites. Not because I actually talk like a pirate on that day, but just out of sheer fascination that someone not only thought it up in the first place, but got enough other people interested that it’s become a “day.” Ever heard of What if Cats and Dogs Had Opposable Thumbs Day? What exactly are we supposed to do on that day? Just sit around wondering what kinds of mischief our pets would get into if they did in fact have opposable thumbs? I’ll tell you what the cats would do. They’d leave. Most of them don’t like us that much to begin with. A thumb would come in very handy on the front door. I’m sure the dog would be more than happy to give them a boost.

So I’m sitting thinking of all these goofy, meaningless days, and wondering why people have heard of things like National Go Barefoot Day, but they have not heard of the Pregnancy and Infant Loss Remembrance Day. Or why so many people would be much more comfortable with me talking about VCR Day, than they are with me talking about a day in remembrance of my precious baby who died. To tell you the truth, it’s enough to make me wish it was the International Moment of Frustration Scream Day. Too bad I missed that one three days ago. I guess I’ll have to settle for writing this blog post.

But really, folks, let’s get serious. Horrible as it is, children and babies die way more often than anyone wants to think or talk about. But being forced into silence leaves those of us who are grieving feeling very much alone. Is it any wonder we cling to each other when those who are supposed to love us spend more time running away or chastising us than they do trying to really care or help?

I would like to ask those of you who know someone who has lost a child to please, please, just call them up or send them an email and say you are thinking of them. Tell them you are remembering their child, and use the child’s name. Would you like it if we referred to your kids as “him” or “her” or “the baby” all the time? Or even worse, as “IT”? They have names. We love to hear them used.

Please reach out to those you know are hurting. We know you are uncomfortable. We understand. If you don’t know what to say, a hug or a sincere “I am here for you” would be fine. Just saying we are in your thoughts is a very nice thing to hear. Saying our child is in your thoughts is even nicer.

Make a Difference Day is coming up soon. I suggest you start making a difference right now, by showing some of the love we know is in your hearts. Love not shown might as well not even be there at all. We need your love, more than you can possibly know. You cannot fathom the depth of this pain, and we wouldn’t want you to. We just ask that you be here for us as we try to live through it.

Sincerely,

Deanna, on behalf of myself and the other bereaved parents

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