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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.

I should be asleep right now. We are supposed to be getting pictures taken in the morning. But as I was putting Elisabeth to bed, she started sobbing, choking out that she misses Eliana. This happens, not frequently, but enough that (sadly) I am used to it. Used to it or not, it breaks my heart all over again each time it happens.

She talked more tonight than usual. She kept asking why Eliana had to die, and said how sad she was that the doctors couldn’t fix her. She cried about not getting to hold her more, and that she didn’t get to come see her more often at the hospital. She was so upset that Eliana was taken so soon after I had her. Her face was lined with pain when she told me she didn’t get to kiss Eliana goodbye at the funeral. To experience my child dying is the worst thing I have ever gone through. Watching my other child try to deal with her death is the second worst thing.

Toward the end of our talk, Elisabeth brought up having our pictures taken tomorrow. I asked her if she would like to take Eliana’s teddy bear with us to be in the picture, since Eliana can’t be here with us. She said she wanted to. It was something I had been thinking about doing all along, but it’s nice that it can be something to comfort Elisabeth too, not just make me feel better.

To be honest, I was having serious issues with the idea of having family pictures taken again. I know, I know, you don’t have to say it.  It’s something we need to do.  We have to do it for the girls.  I’ve heard all the admonitions. Perhaps unless you have lost a child you cannot really understand my strong resistance to having our photos done again.

My baby is not here. Eliana will not be in these pictures. Eliana will never be in any of our family photos again.  It seems so wrong sometimes to go on doing the normal everyday things that she cannot be a part of any longer. These thoughts race through my head, round and round without resolution. Motherly guilt and feelings of obligation compete with the gut-level conviction that I don’t want them done again……ever.

I’ve heard more than one person say that they have tried to complete a puzzle, only to discover that there is one piece missing. Do you know what they did with the puzzle? Donated it? Kept it and ignored the missing piece? No. They threw the puzzle away. I think there is something about being human that makes us hate an otherwise beautiful image that has one little missing piece. Just like I, motherly guilt and all, am going to, on one level, hate the otherwise beautiful image that is going to have one piece missing. The face that won’t be there is just as loved, and just as important, as the faces that will be there.

Elisabeth was able to go to sleep after letting her sorrow out. I’m not so lucky. Here I sit, typing away instead of getting my beauty sleep. I may look a little tired in those pictures tomorrow. The smile might be on my lips but not reach my eyes. At least I’ll have a good reason. Before I even see the proofs, I’ll know that there will be something wrong with them. I’ll get some anyway, but I’ll know that behind the image is a family grieving the loss of their daughter, their sister, and their granddaughter. It will be a picture of a family that is incomplete.

And always will be.

Sadly, about 25,000 babies will die during or prior to birth this year in the U.S. alone. Another 10,000 or so will die during the first few months of life. Thousands more will die during their first year of life in accidents, drownings, and from illnesses. Thousands more toddlers, young children, teens, and young adults will die.

These deaths leave countless families with aching hearts, their lives irreversibly changed, transformed forever. The month of October is a month to pause and remember the precious lives gone too soon, not only in the U.S., but also around the globe where every minute 20 children die from preventable causes such as hunger, pestilence, poverty, and war.

The effects of a child’s death are intergenerational and long-lasting- in particular, the psychosocial tumult can devastate individuals and families. Like a pebble tossed into a still lake, a child’s death ripples outward in waves in despair that are often unrecognizably related to the tiny stone. Across cultures and throughout time, the death of a child is recognized as one of life’s worst tragedies.

In my many years working with bereaved parents and siblings, I have witnessed these effects. Women in their 70s and 80s hear of my work and seek me. They want to tell me their stories of loss and sorrow. No, they need to tell their stories, for they are still whispering, shamed by the secrecy so common decades ago. They seek redemption. I ask, “What is his name?” and they often look surprised at my asking, follow it with tears, gratitude, a hug. “Thank you. I haven’t spoken his name in 37 years.”

One 80 year old woman wrote to me, “My daughter died in 1947…I want to join your group and get her birth certificate and finally remember her so that I can die in peace…” Siblings often recount to me stories of their brother or sister who died 40 or 50 years ago, still anguishing that “my mother was never the same woman after that…”

These deaths change us permanently. It is critically important to understand these experiences, to embrace and support those facing such traumatic losses, and help them find their voices. We need to, as a culture, pause and remember so that families can live their lives out of the closets of shame to which they were once condemned. Meaninglessness leads to purposeless and purposeless to hopelessness. If we can grant the compassion, empathy, and support so desperately needed, the outcomes for the bereaved can provide the underpinnings for a changed world.

It is my great hope this October that every bereaved family who has experienced the death of a baby or child at any age and from any cause has the loving and compassionate support they so duly deserve. Lend your heart, lend your hand to them, so that one day- when they are ready- they can extend their hand to another.

In memory of all our children who died too soon…

Joanne Cacciatore, PhD, FT
All Rights Reserved
(c) 2008, an excerpt from Dr. Cacciatore’s blog

My wish list started growing at a crazy rate since Eliana died. It’s full of things that I wish I had done differently, or done better, or not done, or known. There are things I wish I had asked, or said, or thought about. There are things I wish I could understand, and things I wish I had never learned. And there are plenty of things I just plain wish were not as they were. But we all know that wishes don’t always come true, and unfortunately for me, my wishes will never be granted.

I wish I had grown a healthy baby, one whose own body had not betrayed us both. I wish she was as perfect on the inside as she was on the outside. I wish I had never taken her to the hospital. I wish I had taken her to the hospital sooner. I wish I had not agreed to the surgery. I wish the surgery had worked. I wish I had never put her down even for a second. I wish I had taken videos of her instead of just pictures. I wish I had put off the surgery for a couple weeks so I would have had more time with her. I wish I had never handed her over to them at all. I wish I had read less, watched TV less, and just paid even more attention to her. I wish I had listened to my gut instinct about what was going to happen, so I could have taken that into account in our decision making. I wish I had broken the rules more often and slept with her next to me. I wish I had taken more time before taking her off the machines. I wish I had taken more time after taking her off the machines. I wish that no matter what we decided, that it would have had a better outcome. Above all else, I wish that I could have my baby back.

I wish that I did not know first-hand that sometimes babies die. I wish that I did not know what it feels like to have my child take her last breath in my arms. I wish the pain was not eating me up inside. I wish I didn’t wish that I could follow her. I wish that wishes came true. And I wish I didn’t know that sometimes there are no second chances.

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