Wednesday, April 2, 2014

I Carry Your Grief With Me

Because of social media, much of what would have been hidden at one time is now open. I myself am able to see an outsiders perspective of child loss... But with an insiders knowledge.

I can not claim that I understand how another parent feels when they suffer loss- because as different as each individual child is, so must the grief be.

We are not mourning the loss of a general "someone", a stranger- we are mourning the loss of a unique individual. One who has never before been here and one who never will be here again. One who had different habits, needs, and created different memories with the mourner.  

I do, however, feel such weight when I see another family suffering. And it is a physical weight. 

It's a deep, in the muscles and sinews weight. In my shoulders and under my skin.

I can honestly say that in some ways, I carry your grief with me. And I mean this with the upmost respect- a respect that acknowledges that in saying this I am not trying to step into your sacred space. I am not claiming your sorrow. I am not trying to interject myself into your situation. 

But I see you- and I carry your grief on top of mine. And because I carry your grief on top of mine, it is always- and always will be- with me.

I hope that for some people, the help in others carrying their grief is seen for what it is- a mourning of your child. 

I carry your grief with me.

I carry it up high on my shoulders. It makes me stoop, bends my knees. 

I carry your grief with me.

I sometimes feel that last touch- as vividly as if I were inhabiting your body. My fingertips itch with the feel of that soft flesh under my skin. That reality of "last time" sets in, in my own mind and it is incomprehensible. As incomprehensible as it was for my "last time."

I carry your grief with me.

I can not fathom the loss you bear- but I will bear it with you if you'd let me- shouldering your burden on top of mine. Holding it aloft so that once in a while, you get the opportunity to breath. 

I carry your grief with me.

I mourn the loss of birthdays, of sweaty feet in sandles, of tangled hair and smudged up noses. I mourn the loss of sweet good nights and of too-early good mornings. I mourn the loss of your innocence- both emotional and tangible. 

I carry your grief with me. 

I see the cruelty of an earth where your sweet child does not breathe any longer. I see sadness and terrible stories of abuse and neglect on the news- stories that make you shake at the unfairness of it all- and I shake with you. 

I carry your grief with me.

I make no mistake- your grief is wholly your own. You feel the sharp sting of your loss like I never could- but I carry your tender heart in the palm of my hand, guarding my words and actions in order to create a sacred space for you and your child.

I carry your grief with me.

When you can't sleep, going over the "if onlys", I am awake too. I am in my questioning place- and we can walk through those rooms together, if you'd like. 

I carry your grief with me.

When each and every pregnancy announcement is projected into your sphere. When it seems like everyone else is out there having a great time, while you are just trying to breathe- I carry that too. 

I carry your grief with me.

I keep it in a sacred space. A place where each and every tear is recognized. A place where there is an understanding that a calendar is not just a book of days, but a record of what will always be missing. 

Only a parent who has lost a child can comprehend how intimidating a calendar can be.

I carry your grief with me.

The years of longing- of groaning under the silence because of your tact. The grief you feel when those around you try to "fix" you. Offering platitudes and reasons and books and stories of what "so-and-so" did in the same situation and all sorts of things that just won't make your child come back. 

I carry your grief with me.

In the middle of the day, when you are doing a mundane task- and the reality of what happened hits you for the hundredth (thousandth... Millionth) time.


I carry your grief with me.

When you open that box. 

And you take out those clothes.

And you crush them to your face, in hopes that some scent has remained.

And for a moment you are transported back to a place where no one could help you carry that grief. 

And then, when you close that box and return to normalcy. That letting go, door-shutting action does not go unnoticed. I carry that too. 

Because that is an altogether different type of grief, and one that deserves close-watching and accolades. 

Not everyone makes it through this.

I carry your grief with me. 

Out into the world, I take it with me like I take my own skin- attached and breathing, alive.

My own grief has gained such a foothold in me, that it would be remiss if I treated it as anything other than a vital organ. It has situated itself into my own heart, deep, like a thorn. It is there that I carry your grief with me. Embedded deeply within. Part of my ever-evolving parts.

I carry your grief with me.

And when the mourning is through, I will remember your child. 

When your mourning is through, and you can see the sunshine again and the world becomes a beautiful place, once more- and that it's ok to love fiercely and let go at the same time- I'll carry your grief with me then, too.

For all the days that pass I will carry your grief with me. 

I will remember her name.

I will remember her life.

And most of all, I will remember your love. 

That love that cherished and protected a most precious gem.

Thank you for giving me the opportunity to carry your grief with me.

Wednesday, March 19, 2014


I don't need to be fixed.

I used to think that I was broken- that there was something irreparable about me. 

I'm not. 

I bend under pressure sometimes, and sometimes I have terribly sad days. 

But I'm not broken.

So please stop trying to fix me.

I don't need a platitude.
I don't need advice.
I don't need anything.

Honestly- you couldn't give me what my heart aches for, on those sad, sad days.

Because my heart is aching for her.

Please don't try to mitigate my grief because you- you who have never experienced what it is to be lying in a physician's office and hear the words "incompatible with life"- you have no idea what this is like.

I am not broken.

I am, however, defiant.

I will continue to speak her name loudly and clearly. She is my child. I am her mother. Not a day will ever go by where I do not say her name.

I understand you more than you think- much more than you understand me. I know that you truly believe that you are helping. I have been you- but you have never been me.

You believe that I am somehow stuck. 

That somehow, you have the magic pill that will make me say, "A-ha!" That I'll wake up one day and be able to put this behind me. 

You don't. 

So stop.

I would like to continue on this vein, but I'll go with this, to cover everything that you (essentially) said:

In reference to God's plan:

My daughter's death was not part of God's plan- God's plan was for all of us to be perfect and in perfect communion with Him. 

Death was never part of the plan.

My daughter's death was a result of sin- suffering and pain and misery and all of those things that we were never meant to partake in.

This next part is going to sound prideful- but it's not, it's a humbling thing. 

I carried around the entire story of the creation and the Fall in my body for 34 weeks- and you're going to try to tell me about God's plan?

Explain to me again, how sin and death entered the world, and how every person is the recipient of Adam's faulty decision making. Now put it in the context of my Beatrix- maybe your mind will just touch on the reality of what really happened. 


Have you been forced down to your knees by a hand so strong that it was able to steal the breathe from your child's body, before that child had even begun to live?

Have you ever held your infant child, with her internal organs located on the outside of her body, as she died- have you had to make the decision to remove life support from a baby who had just begun her life?
Removed IV lines and stickers from heart monitors from your dead child because you didn't want her body discolored? Did you try to see what color her eyes were, only to learn that at death the pupils of the eye expand to such an extent that the color of the iris is completely covered?

They say that God doesn't give you anything that you can't handle. 

That's not true- I've said it before and I'll say it again: God gives you much, much more than you will handle. More than 1000,000,000x what you could handle.

When you have experienced this-bloody and bruised, when you are so weak that you can't stand, when you have lost the will to live- because yes, there was a time when I lost the will to live- then you can come back and explain to me how I'm supposed to be feeling right now. 

When you have held your child, cold and dead, in your arms. Then you can advise me on my grief.

She was dead. I felt her heart stop beating under my fingertips. 

Have you ever seen death up close? 

If no- stop trying to tell me how to behave.

Held it in your hands? If no, stop trying to fix me.

For an extended period? When changes begin to happen? No? Then don't give me advice on how to cope.

Was it someone you loved? Your child? No? Why are you still attempting to "help" me?

Stop. Just, stop.

You have nothing to say to me about this subject.

Some of us are given such glorious illustrations of the power of God- the necessary acknowledgement that while we believe that we control everything, the smallest part of the smallest part of everything on this earth is His domain.

So please, don't tell me about God's plan. 

I know about it. 

The real plan. 

Not some schmarmy idea of good feelings and unbroken hearts- by the way, a little off subject, but along the same lines: please, for the love of all that is good, stop referring to my daughter as an angel. Not only is that theologically incorrect (not one religious body on this earth teaches that humans become angels), but it also makes her seem less than real. It makes her seem separate, but she wasn't. She was whole and red-blooded, flesh and bone. She came into the earth in pain and suffering (mine) and left cold and silent- not angelic, but completely and beautifully human.

So, the next time that you see something that I post and feel like you need to give me advice- don't. 



I'm fine, except when I'm not fine.

And you, nor any idea that you may present me, will have any power to change that "not fine" feeling. 

Just be my friend. Let me be passionate about what I am passionate about... Which is my children. All of my children.

And don't view my situation as something that needs fixed. 

(And I fully understand that while reading this you are clucking about my anger in your head. Just to clarify- I am angry. I am angry that anyone who had journeyed with me over the last three years dares to attempt to offer me a solution.)

I don't want your help recovering- because not only do I not believe that child-loss is something anyone recovers from, but because I don't want to recover. 

I'm fine with me. Where I am. This is a part of me. If you dislike it, there's really not much I can do about that.

Tuesday, March 18, 2014


Did I do everything that I could have?
Did I do everything that I could have?
Did I do everything that I could have?
Did I do everything that I could have?
Did I do everything that I could have?
Did I do everything that I could have?
Did I do everything that I could have?
Did I do everything that I could have?

I thought I would get to the point. 

I had lots to say. Loads of flowery explanations and phrases and stuff to fill this post with meaty ideas.

But this just about sums it up.

Thursday, March 6, 2014


Today is a tough day.


One of those out of the blue days where my heart is ripped open and laid bare and I wonder and am angry and am humbled all at once.

One of those days that doesn't come too often anymore.

One of those days that I thought were somewhat behind me, where I would love to crawl into the back of my closet and sleep for a week.

One of those days where the tears are fresh on my eyelashes and my nose has that tingling feeling- that "I am poised to cry, so please be gentle with me" feeling.

One of those days where missing her is a physical ache- where my body aches for her and my arms can not be satisfied with anything less than her weight.

Only someone who knows this ache can take seriously the claim that every muscle in my body- every cell- cries out for relief. 

And the only relief would be her, alive.


Sometimes, even though I am where I am, it's difficult not to be where I was.

Saturday, March 1, 2014

Be fruitful and multiply

About that.

My husband and I were talking about M's future. Her life, as we imagined it. We talked about her children, and our hopes that if she chose, she would be able to mother them without the same heartache that had befallen us. 

Imagine that- having a baby who may one day be a mother. 

I have two older sons, and while they may one day be parents- they were not born with the capability for life already in place.

My daughter has the seeds for countless generations already in place and waiting inside of her body.

And those seeds were, at one time, in my infant body (so to speak), and in my mother's body- and so on for countless generations. 

I look at this sweet tiny girl, toddling around on her unsteady legs and I am awed that her generations are already in place. 

My Beatrix had many anomalies that affected many parts of her body- but her reproductive organs were smashingly perfect. She had two minuscule ovaries full of her own generations, and a small womb. 

I remember the sadness with which I heard the words- "here are her ovaries", from one of the physicians as they looked over test results- fetal MRI, I believe. 

That was one of those moments when I became fully aware of all that would be lost- that an entire piece of my family was being wiped out in one fell swoop. And it was a messy cut- a slap in the face.

Her future intended would love, marry, and create a family with some other mother's daughter. 

Her children would remain unnamed. All of those lovely children, half of whose genetic makeup was already present in her body- gone. 

Can you imagine? She was the end of her own family line.

It's difficult to contemplate- that missing future.

Sometimes the sadness isn't because of what was, but what will never be. 

The potential unfulfilled. 

I can't forget the way that her heart beat under my fingertips- I have that forever, and my pulse will match that discordant rhythm at the end of my life.

But I will never hold her own newborn daughter in my arms.

Wednesday, February 19, 2014

Your Child is a Gift

Just a bit of a set-up here: this post is about Carrying to Term with a lethal anomaly. The general concept could apply to any baby loss situation, but the actual context is a situation like mine with Beatrix.

Thank you for understanding this, and being respectful of what my experience- and the experience of many other moms- is. 

Not all people who are diagnosed with this type of pregnancy situation will make the same decision that I did- but this is my daughter's story, so I am telling it from the perspective of our choice after her diagnosis.

Sometimes I have the (sad) opportunity to talk to a mom who is currently pregnant and who has received a Limb Body Wall Complex diagnosis. A mom who is just beginning her journey and who has decided to continue her pregnancy.

This is always a difficult conversation to have, as I am so far beyond that desperate place and even more so, I am at a decent place as far as my own bereavement.

I don't want to be guilty of using one of those hated euphemisms- the "it will get better in time" or, "everything happens for a reason". I am somewhat close to "normal". And even though I am a loss mom, I am still at risk of saying the wrong thing. 

This is especially difficult when I'm speaking with someone who shares my religious beliefs. This post will be from that perspective. It may be a little jumbled up, as I work through what I am trying to say, because it's a difficult concept to see with any clarity.

I have worked hard to find acceptance with my own faith and I have come out of a very dark place with that faith still intact.

It's hard to remember, sometimes, that each of us has to walk that walk on our own- that this is one path where the occasional companion will lead you in the right direction, but ultimately, it is a solitary journey.

There was a question that I was recently asked, and I hesitated to answer it because I didn't want to be sharing a bland statement of an idea that this mom just wasn't ready to entertain. 

The question?

"Why is God punishing me?

I hesitated to answer that because I had been there. And I didn't want to hear platitudes then, any more than I am sure she doesn't want them today.

But I did answer.

"You are not being punished- you have been given a gift. Any other mom would not have been able to love and cherish your baby like you do- you were chosen BECAUSE you are such a beautiful mother. You see your baby as what she is, beautiful and worth the sacrifice- and only a truly loving mother could do what you are doing. 

You have said - she is worth this. 

She is so important that even if her life only lasts minutes- her mark in this world is so necessary that I am willing to lose part of my heart for her."

That's what I have been ruminating over since I sent that message. Her response, in case you're wondering? 

"I needed to hear that."

In the whole carrying to term dynamic is a mindset that favors viewing the child as a gift, not a punishment. 

Now, this isn't to say that the whole loss mom guilt thing is not figured in there. It is. I feel incredibly responsible for Beatrix's diagnosis and death. I always will. 

Neither does this mean that we see our children's diagnosis as a positive or view our situation as some type of sick martyrdom, or a Munchausen by Proxy type of illness, as some opponents of carry to term imply. 

What I want to say is- my child is (was) a gift. I wasn't "punished" with a terribly sick baby. 

I was given her small life- and that life was something precious and valuable.

The rarest stones are usually the most sought after. But in this type of "situation", these rare gems are routinely seen as a punishment by those who would choose not to grab on to them with both hands and hold tight.

It was an honor to hold Beatrix's hands in mine. Can you imagine? Such an honor to have been chosen to be her mother. 

Not punished with her- how could anything so beautiful be a punishment? How could anything so precious be a punishment? 

I use that word again, not as we generally mean precious, but as it was meant to be used- to signify something:

  1. Of high cost or worth; valuable.
  2. Highly esteemed; cherished.
  3. Dear; beloved.)

We need to know this. 

We need to be consciously aware of the value of our fragile children. We need to intentionally understand that there is nothing- not one thing- that is a punishment in this experience.

Part of it is the perspective from which you are looking at your experience. 

I looked, from the beginning, at my experience from the perspective that God knew what He was doing. Of course, like any normal person I questioned that wisdom when I was at my lowest, shaking my fist in anger- but deep down the struggle was more about reconciling my own understanding of things with His. 

It was the fight elucidated here. Any post tagged "faith" is part of that fight- and what I write here is such a small window into what actually is.

I recognize now that my struggle was more about willfulness than viewing her as anything less than my beautiful child- about acceptance of my lot in life. 

It was never truthfully about feeling punished. 

My daughter was such a gift- if you stumble upon this searching for a carry to term answer because you have received this type of diagnosis- 

your child is a gift. 

Safely tucked away in there, hidden in the shadows. 

Your child matters to the world. 

Every second of your baby's life is part of a history that we have only the slightest inkling of.

My child- that tiny girl that I held as I cried- that I held as she was continuing in her journey home- that child has the capability to change lives. And I want to be clear- I am not saying that I have the capability to change lives-but that she has the capability to.

Your child is a gift. 

Your child is so important to the story of humanity that people may be afraid to be a part of their experience- but that isn't saying something about the value of you child. There is something primal and honest about this experience that some people may not be ready to see.

My Beatrix opened a window into something deep inside of me- feelings about the frivolity of everyday life were brought to the forefront. Most people don't want to know about those things. They are happy with watching the occasional sad news story and shaking their head over an item that they don't agree with. 

We can't. These beautiful babies force us to look at things with an eye towards eternity, which is the reality that everything revolves around.

This is a gift. This is necessary- so necessary. So valuable.

Your child is a gift, one that may be meant to be shared through some type of advocacy, or one that may be meant to sleep secretly in the deepest parts of your heart.

Please make no mistake, you have not been punished. You have been given something of great worth. A baby that was chosen specifically for you. 

This little human, your baby, is so important to the world, so necessary that even if their life on this earth lasts for seconds, their mark will be something that will shine for all of time. 

And as an ending note to you- momma- you chose to let them make their mark- to let them live the natural course of life- to disbelieve the concept that your baby is/was a punishment. 

You chose to see the value of their existence, and received the ultimate gift of holding those tiny hands. 

Brushing that downy soft hair. 

You had the privilege of knowing them more deeply than any other person ever will. You felt every single movement that they ever made, were the first and one of the only voices they ever heard. 

You were their everything. 

Your child is a gift. A baby can never be a punishment, no matter how flawed her form may be.

And you- you are the receiver of that most precious gift. 

Cherish the time that you have been given. 

Love that baby freely. 

And don't ever let anyone try to convince you that your baby was anything less than an exceptional privilege- especially not yourself.

This is one of my greatest gifts:

Tuesday, December 31, 2013

Happy New Year

Happy New Year, baby.

You would have been three this past month. I had all of these fancy things to say about missing you. But I find that writing them out and putting them all together into intelligible language is an impossible task.

So, I'll keep this simple. 

I missed you this year. 

I missed your lisping speech. 

I missed your ponytails. 

I missed your preferences and dislikes.

I missed taking you to your first movie. I wonder what we would have gone to see.

I missed you getting into my pocketbook and making a mess of all of my cosmetics.

I missed you having a favorite baby doll.

I missed moving you into a "big girl" bed.

I missed painting your nails.

I missed you learning your letters. 

I missed you picking flowers, and bringing me crushed bouquets.

I missed seeing you as a big sister and as a little sister.

I missed your sass.

I missed your "I love you mommie".

I think people wonder about how you can possibly miss someone who was in your life for such a short period of time. 

I answer back that you were not in my life for that short time only- that you are still here, growing in leaps and bounds. 

The strangest thing about this situation is that unlike other people who I have loved, and who have died- you are aging in my head. 

I miss the human that you are-would have been.

In my mind's eye, you have a longer body and longer hair and speech and knowledge- and you are whole. My mind never sees your "anomalies". 

I see a small girl clomping along with my high heels on, a string of beads, and way too much lipstick. 

There is no twisted spine. There are no misplaced or forgotten organs. Your legs are strong and long and smooth. You are vibrant and warm. 

You are alive.

You are my oldest, other daughter. 

My girl.

Not just the baby who died. Not just a sad story in the past- and most definitely not a source of pain.

Well, not so much any longer.

I can feel the joy entering in again- in slow spurts. It has taken time and I don't know how much is due to your big brother and little sister. I have learned not to question the good- the joy is just there and I am grateful.

I will continue to miss you in the coming year, I am certain. I will pine for you on some days.

On some days I will walk in a fog of longing, that physical sensation of holding you in my arms will be difficult to work through- the phantom baby syndrome.

On some days I will come back here and write about how darkness is enveloping me and how I don't think I can take another step.

I miss your tiny hand in mine- how could I not have days where the entire world is an empty place because you are not here?

I will miss you most desperately, each day as I go through the tasks that move me from moment to moment.

One task leading to another, until a full day of working leads into one day, leading into one week, leading into one month, leading into one year, and finally all of these quiet little tasks will lead into the stuff of one lifetime- I will miss you most desperately over the course of one lifetime- mine.

I will continue to miss you until I can no longer recall the feel of your lips against mine. Your soft skin. Your feet in the palm of my hand. 

And on the day that I do not miss you, then I think it is safe to assume that someone here, will be missing me.
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