You don't want to read this (and I don't want to write it)

I've been really haunted the last few days after watching Zinnea's film offering in the International Infertility Film Festival. After struggling with infertility, Zinnea finally got pregnant in 2004, only to discover that her daughter had a fatal birth defect called Congenital Diaphragmatic Hernia (CDH). Instead of terminating (as her doctors recommended), Zinnea and her husband decided to go to term. Mia Marvelle passed away six days after she was born.

In her film, Zinnea includes the incredibly private and deeply wrenching images of her holding her daughter and weeping. And photos of she and her husband holding their daughter after she's passed and saying goodbye.

After watching the film, I found myself gasping for air and sobbing inconsolably. This isn't a shock; many, many things have made me cry here on the internets. So many of us have suffered and lost, and I've cried right along with many of you.

But I couldn't stop thinking about those photos. I couldn't sleep that night; they kept drifting into my mind and I would start to cry again. The strength of my reaction took me by surprise.

It wasn't until about 3am that I finally figured it out.

I was jealous.

Every time I think I've done all the processing I need to do about losing the boys, I find a new area that I haven't dealt with yet. Of course I'm not jealous of the horrific loss they suffered; what I'm envious of is the fact that they got to see their baby, to hold her, and to say goodbye.

I've had inklings about this before. A few months ago I allowed myself to wonder what, exactly, had happened to Nicholas and Zachary's bodies. But as soon as I had the thought, I shut it down. I wasn't ready.

And I'm still not ready. I don't have any desire, whatsoever, to again probe the grief that surrounds the loss of my sons. There's a lot of shame there, and anger, and guilt. Oh, God, so much guilt. But God doesn't agree, apparently. I am supposed to deal with it.

Not long after I lost the boys, I expressed my rage and anger here in this blog. I hurt some people in my anger and one person pointed out that others had lost "live babies" after all, so I shouldn't be---well, honestly, I'm not sure what I wasn't supposed to be. I guess I was being reminded to keep my grief in perspective. But I still feel pissed off that things went the way they went. I still feel ripped off. I feel like the randomness of the universe, the luck of the draw, or worse, "God's plan" doesn't make any fucking sense and is completely and utterly unfair. I don't care what others suffered. My "lot" in relation to the boys SUCKED.

Thinking about the day we lost the boys now, all I can remember is that it all happened so fucking fast. Remember, I went from going in for a routine anatomy scan to having to terminate the pregnancy in less than 24 hours. I was so ill that I didn't get to participate much in the decision making process. No one at the hospital said to me, "Yes, delivering your sons will be more risky, but at least you'll get to see them and hold them and say goodbye." No one said, "Do you want to make arrangements with a funeral home?"

Instead, they just said, "You are dying." This was all Charlie could hear--that not only was one son dead, and the other was dying, but so was his wife. No one came to him and said, "Have you thought about what you want done with their bodies?" All they said was "We have to terminate. NOW."

We were alone, afraid, and sick. Options weren't offered. I was the patient, not the boys. No consideration was made for Nicholas and Zachary.

Instead of getting to say goodbye, to look at their faces, I was just knocked out and the boys stripped from my body. I'm left with the shame and guilt of--God forgive me--treating my sons like standard medical waste. My sons. My boys.

I wish, oh, how I wish, that I'd done things differently. That I'd gotten them cremated and been able to scatter their tiny ashes. That even if it would have been awful, the worst pain in the universe, that I would have been able to see their faces just once.

I wonder if Zinnea sees reflections of Mia's face in her (living) daughter Naima? I often wonder if the boys would have looked like Tori does; if they would have scrunched up their noses like I do when I laugh, like she does, or if they would instead use their eyebrows like Charlie does. I know I wouldn't have been able to tell that from their tiny and unfinished faces at only 22 weeks gestation. But, oh, god. I wish I'd tried.

I know I'm one of the lucky ones, now. I do have a living child. So many of us don't. But this--this sadness--will never leave me, I'm afraid.

It's never over, is it? Even while I was sitting on my front porch last night, holding Tori, watching her extend her hand as she tried to reach up to the wind chimes Anne gave us, I felt the deep wound that the loss of the boys caused. Even while I find myself sinking deeper and deeper into joy because of Tori's magnificence, I still find myself the owner of a bruised and battered heart.

I guess I always will.

Comments

[cursingmama]

Some wounds never heal, and even those that heal will leave scars. Learning to live with the scars, learning from our scars, and helping other prevent the same kinds of scars is what we do. Its too bad our first instinct is to hide our scars.

[Becky]

I come here because of this, your honesty. Thank you for being strong enough to be honest, even thought it hurts.

[Chrissi]

Your words are amazing even in grief. We each have our own grief and have to learn how to live, I don't believe it's up to anyone to judge us on how we learn to live again....but we must learn to live again. I am so sorry you feel such guilt, Charlie couldn't lose you.... I honestly don't think a husband has any other choice. My heart still goes out to the two of you even with darling Tori for your loss of the boys.

[Gwen]

Your story is so heartrending and your grief so raw and real, it hurts to read about it. But you know what I think when I do? That by telling your story, by sharing your experience, you are giving someone else the information and the strength they need to handle their own sorrows better. Before my sister had multiple miscarriages, I never thought about what they really meant or how important grieving and saying goodbye to your lost children is. How could I? It was so far out of my experience. Just like for you, when your boys were taken from you so tragically. You didn't know to do anything differently. Now you do. And now you can share that knowledge with others and be a part of the informed decisions they make.

[Whitney]

Somehow, I never realized you didn't get to hold or see your boys. I don't know how I missed that. That's got to make it so much harder! I'm sorry again that this happened to you.

[Celeste]

Can your pastor help you hold a memorial ceremony for the boys? Maybe there is a way to have a tangible ritual that will help you in some way. I have read about a park in Japan that is dedicated to the souls of lost babies. Could you use some kind of memorial you could sit with and think about them? I realize you don't have their remains, but maybe there is something you can use to turn into ashes that you could bury or scatter, even if it is just copies of ultrasound scans or even printed posts from your blog.

I hope this doesn't sound stupid. I'm just thinking out loud here that maybe in some small way, a ritual would be a comfort.

When the time is right, maybe you could speak (or write) to somebody at your hospital so that in the future, they would know to save a baby's remains so that the parents have the option on how to proceed with them. Maybe that would help, knowing that you helped to keep another family from having an extra measure of pain. My apologies if you have already done this and I missed it, or if this all just sounds like total assvice.

Hang in there, Cecily. Some things just have to be gone through.

[Catherine]

A friend recently lost her newborn daughter to CDH and I was jealous of her. Because in that moment, she was holding her daughter while my sons were buried under the hard earth.

I think we always long for the things we didn't get. I held my boys...but it wasn't enough...not nearly enough. I should have unwrapped Alex from his blanket. I should have dressed Travis myself. There is always going to be more that I wished I'd had. But what I'm really missing is that lifetime of memories I didn't get. The regrets I have are just symptomatic of feeling that bigger loss...that giant gaping hole in my life.

You were cheated of a lifetime. There are going to be moments when you are keenly aware of that...there are always going to be things that remind you. Having a living child changes the grief somewhat but it does not eliminate it. Now you know what you lost. That is a blessing and a curse all rolled up into one.

But no matter what you feel...guilt should play no part in any of it. You did the best you could. That's all any of us can do in the moment.

[Meggan]

Just had to say, telling someone else to keep their grief in perspective is such bullshit!

I think all of us have some regrets. I had a miscarriage at 16 weeks and chose to see the baby (though the doctors tried to persuade me not to), but didn't find out if it was a boy or girl and didn't touch or hold it. And I still wonder about that almost every day.

Thanks for continuing to share your thoughts and feelings about your boys.

[Elena]

Hi Cecily,

I think the scar on your heart for your sons is one that will always be there and I don't necessarily think that's a bad thing. My scar for my son is what connects us. We are the living memorials for our dead children. In a way I find that comforting.

Cecily, you know that I am a big advocate for prenatal hospice. Part of the reason why is that they would provide some of the services and ask some of the questions parents in your situation never had the time to think of or ask.

That all said, I wonder if perhaps God is calling you to something like that? Just a thought.

Elena

[Yatima]

Oh Cecily, I am so sorry; I am so sorry.

[baggage]

I'm so sorry. It must be so much harder not to have that bit of closure. I'm so sorry.

[Laura]

Cecily, you are such a dear person. I wish that the medical community could have offered you more options in the past.

[Green]

You know, I don't think that's your guilt to have to hold on to - that should be the guilt of the people who rushed you through and treated your sons like medical waste. It's on them. You were relying on them, as you should have been able to, and the hospital dropped the ball. Not you.

Not the same, but similar: My grandma, who I was very close with, died suddenly in 1994. I still haven't dealt with it, because it hurts too much. It's one of those "if I start crying about her, I don't think I'll ever stop" things, so I shelve it and though i think of her often and talk about her, I can't deal with her death.

[Amy]

(o)

[Wendy]

I'm sorry Cecily. The medical community often fails families in respects to our dead babies. They should have better training in how to help a family say goodbye. It's not fair you didn't get to see your boys and unimaginable that you were not given the choice about what to do with their bodies.

[jax]

One day you will find peace.

[heather]

Thank you so much, Cecily, for allowing me /us this view into your perspective. I have learned so much in the way of sensitivity by learning about what you have gone through. It would be awesome to see some reforms made a that hospital ( all hospitals) that would ensure that more was done to consider HOW you would live, than just IF. I am sure, no matter what, the grief would be equally immense, but I can ( only ) imagine the closure that it would have helped to bring to have been able to reat your sons like the much wanted babies that they were; anyone who reads this blog ( anyone who knows you, I imagine) knows that you,given the proper opportunities, would have done things differently; shame on that hospital.

[Aurelia]

I'm sorry Cecily, I pray that my recent email wasn't the cause of your pain. I thought you had cremated your boys, although I knew you didn't have photos. I thought you knew what happens to the bodies of infants under 20 weeks or 500 grams.

So, deep breath here, I'm betting the hospital has photos and mementoes anyway. Standard practice for over 20 years in many hospitals is too take photos, nice ones, putting the infants bodies back together and wrapped up in blankets and hats so parents can get photos later.

They do it even if the parents order them not to, because almost all of them change their minds later. They might have photos, or footprints, or something.

As for burial, at 22 weeks, in your state (If I have the right state?) they cannot just treat bodies that size as medical waste. They are cremated and buried or scattered somewhere. Some hospitals have special scattering grounds. Others have funeral homes and cemetaries who take care of this.

Cecily, if you can't bear to ask, maybe one of your friends or Charlie can check with the hospital. If I was there, I would do it for you.

They may not have anything, they might be the exceptional case, but it really might be worth checking.

I'm so sorry about this. I got to hold my son who died at 21 weeks, but not my daughter who died at 16 weeks. I wish I had delivered her and seen her and held her. She had already passed away, and I could've delivered her but the Doctors made it sound so impossible I didn't. But Cecily, remember this, you were close to death, you could NOT have delivered the boys. Yes, the hospital could've done many things differently, but you had to have a D&E.

I'm holding you in my heart right now...

[Sheri]

I think Elenea is on the right track.... " you know that I am a big advocate for prenatal hospice. Part of the reason why is that they would provide some of the services and ask some of the questions parents in your situation never had the time to think of or ask. That all said, I wonder if perhaps God is calling you to something like that? Just a thought. "

When I read that, it was a like a lightbulb going off....

[maricar]

Honey, I'm hurting along with you. I think loss is loss. My boy was long gone when I saw him but it doesn't make it any easier. Not sure if I made it even harder on me with what I decided to do. Not many people know what a dead 18 week gestated baby looks like. I know the jealousy all too well.

[Anne]

So I’ve tried to write something at least 3 times and nothing comes out right. I’ve haven’t had to stand where you’ve been but it isn’t hard to imagine how painful it must be to think about the Boys, to think about what could have been and you’re right Cec that will been with you forever. I know the Boys will be with you forever no matter what it just really sucks (REALLY REALLY sucks) that in addition to the sadness and what ifs you feel at their loss you also have to deal with how you lost them. It really isn’t fair (not that pain and loss ever is fair).

And speaking of wind chimes, I miss mine, I put them in storage, I need to go and get them back out. Kawika always smiled so sweetly when we’d go and play with them. I’m so glad Tori likes them and I hope they always invite good chi into your home.

[Ceece]

my soul, my heart, my everything hurts after reading this and I've never experienced this loss.

I just want to send you hugs and vibes and prayers.

I too second the ideas of holding a private memorial session or seeing this as a calling to aid other families.

Lovies to what ever you decide.

[Birdie]

Thank you for sharing your story and for your honesty.
And I agree that it is rubbish for someone to tell you to "put your grief into perspective"...just because something "worse" (and who's judging that anyway!?) has happened to someone else doesn't make your situation suck any less.
So there.

[Julie]

Cecily - you, Charlie & Tori are in my prayers. I hope you find peace - some how some way.

[HeatherP]

It's never over. You just have to accept that you did the best you could, the very best, under the circumstances.
I delievered my son in a live birth. An hour later, he was dead. If I could go back and do it all again, I'd do some things differently. But, (most days) I'd rather go forward.