Friday, October 21, 2016

Dear Donald Trump...

Dear Donald Trump,
You can put me in jail, but I've already been there.
My brain and heart were confined to four walls with a constant refrain of, "why?"
I've done solitary confinement for far longer than any judge would have mandated,
And I've done it in the most crowded of rooms.
And while there I was tortured.
I was water boarded daily by pregnancy announcements, growing bellies and pregnancy glow.
Cooing infants, shrieking toddlers, and happy families left me blind.
I've loved, I've lost, I've had empty arms and I've held the weight of multiple worlds on shoulders forced to be as strong as Zeus
If one day I find myself burning in your version of hell,
I will gladly take that punishment knowing that my fetus never suffered pain.
And when I see you there, damned for all eternity,
I still wont shake your hand.
Compassion and empathy cost nothing more than the expansion of your heart and mind.
They ask that you remember that your world is not the only world,
That you are not the focal points of the universe.
You don't even have to walk a mile in someone's non-designer shoes,
You just have to believe they exist.
Sincerely,
A black swan on the opposite side of the bell curve



Monday, May 4, 2015

Our Journey Through TFMR

There are moments of your life that are burned onto your retina, and the script from the narrative lives within your mind; its quality, pristine.  That's how July 23, 2013 live within me.  It plays in the background, providing background music that is sometimes soft, and sometimes so loud that it overwhelms me, and I think it's it's July 23, 2013 all over again. 

The 19 week anatomy scan at Maternal Fetal Medicine that day took almost 3 hours.  I watched it on the screen until the tears overwhelmed me to the point  I could no longer see.  I closed my eyes and willed the world away.  I felt the table tilt back, "Sometimes this helps the baby move.", the technician said softly, but I continued sobbing knowing that truly, the technician knew I couldn't watch anymore because it was too painful.  My husband sat in an uncomfortable chair next to the table, quoting statistics, walking through p values, and standard deviation, trying to somehow rationalize the numbers we were seeing - the numbers telling us that our baby who was due on 12/25/13, would actually be arriving weeks later.  His face was white, his voice shook; he couldn't hide the fear that was welling in his heart.  But he never cried in front of me that day.  He held my foot during the amnio.  He tried to spout science to a scientist.  And he excused himself to the bathroom when he had to fall apart. He held it together because he thought he had to be strong for me.

When the MFM came in the room, she had a laundry list of things she wanted to discuss.  After each image she showed, she would say, "But that's even my biggest concern.".  Until she got to the pictures of the brain.  My fetus, the love that we had believed was the perfect combination of our genetics, was missing a large portion of his brain.  Did you know that it's possible for a fetus to develop sans cerebellum?  That for everything that makes a human a human, to be missing?  I'm a molecular geneticist by education; I live and breathe science. The one thing I had invested so much of my life in, had failed me.

The next week passed in a blur as we waited for our "day of testing" at Columbia-NY Pres, to meet with the experts, the doctors who had the tools to perform fetal MRI, fetal surgery, hell, they can use a printed 3D heart to save a baby's life .  They could fix our future, right?

They couldn't.  The human brain is perhaps one of the most complex structures that exists; when the main functional areas are missing, there is nothing that can be done.  My fetus wasn't even moving in-utero because the programming just wasn't there.  His limbs, which were weeks behind, were unable to receive signals to move - to punch me, to kick me, to suck his thumb like we see in oh so many cute ultrasound pictures.  

I am a mother; yet the most important decision I made for my child was the decision to end his life before it even properly began.  This decision was the ultimate act of love, of compassion, of empathy that we could have given to him.  We ceased his suffering, and we made the decision to shoulder it on our own.  There is no shame in that decision.  There may be people who try to vilify us for decision; but those people do not understand.  You don't understand the position anyone who opts to TFMR until you sit in their shoes.  When you're laying on the table, or sitting in an uncomfortable chair, and expert after expert is telling you the same thing; that your child will never know that s/he exists, and will likely live in immense pain, if he was able to make it through gestation and birth.  Do you know how hard it is to stare someone in the eye, and tell them that their 20 week old fetus, an amalgamation of two people so in love that they created a child, that their little one is missing a vital organ, or a piece of their brain, and will never, ever live a day on their own?  Or if that they do have the opportunity to breathe a few gulps of air, they will be in infinite pain and will remain that way until they pass ?  Do you know how difficult those words are to deliver to a couple whose hands are intertwined beyond belief, with tears running down their cheeks, their hearts in pieces on the floor, and their minds and souls on another world? 


My husband and I always imagined that I would break his hand during delivery, while his son was entering the world around his estimated arrival date; he never imagined I would be doing it nearly 4 months early, when we both knew the baby would never survive.

The loss of a fetus, or a baby, whichever term you prefer to use, whichever one brings you peace, is a record that doesn't stop; it's a soundtrack that is played on repeat; a symphony whose movements transition from joy and happiness, to sadness and despair in an instant.  And this song plays indefinitely in your mind, and it radiates through you, and it influences every decision you make; whether or not you even realize it.  Life changes.  Life is never the same.


We made the decision to shoulder a lifetime of pain so that our little one would never have to feel a moment of pain.  For us, that is the ultimate gift of love and compassion.  It is the only act of love that we were able to ever show "Olive", and, for us, it was the best gift we ever could have given him.

Thursday, January 1, 2015

Full Christmas Post

I was chopping root vegetables Christmas Eve when it hit me that a year ago I was doing the same exact thing prior to leaving for my in-laws.
But everything was different then.
In 2013 with every slice of sweet potatoes, turnips, parsnips, and the like, the knife made a loud thud on the carving board. I barely heard the loud noise, even though it echoed throughout the kitchen. A stiff glass of apple brandy with an ice cube sat next to the cutting board, and I struggled to look through red, swollen eyes. The bottle of apple brandy was my best friend Christmas Eve & Christmas.
Everything hurt and at the same time nothing hurt. Occasionally my brain reminded me that I was supposed to become a mother the next day, on 12/25, and at those moments it took all my strength to fight back tears and keep my hand from wandering to my stomach.
I tried so hard to forget, to forget the baby boy that was supposed to grace my household at that time. Tried so hard to stop reliving that day at the perinatologist where one by one our dreams crumbled. My husband having to leave the room to cry because he didn't want me to see the tears running down his cheeks, because he thought he had to be strong for me. As he watched me sob through the anatomy scan, as each measurement taken by the tech revealed no growth; as the tech searched in vain for areas of the brain that never formed in my fetus. He watched as I bit my lip and stiffened when the long needle punctured my skin and entered the amniotic sac, withdrawing fluid that we hoped would provide answers, but at the same time knowing that perhaps no answers were better than answers in this situation. As I implored and begged the little fetal heart to stop beating on its own.
Up until that point in time my husband was the only man in my life who never cried. He grieved the loss of olive for far longer than I, was afraid to touch me for months because the pain was still so strong, and spent every single day of my subsequent pregnancy in a pit of silent fear that history would repeat itself. Attempting to comfort himself in statistics, but there is little comfort in statistics when you have already been a black swan.
December 1 2013 I went to my psychiatrist and told him I wanted to try getting pregnant again in the new year, and I had to wean off my meds. Christmas without the meds that helped numb the pain of Olive's departure was difficult, hence the brandy. Hence the hiding alone in the basement, or bathroom, to stifle my sobs so no one would hear them. I surrounded myself with family that year, hosting my family and my in-laws, figuring that misery loves company. We could all be miserable together.
But this Christmas is different. In January, in a drunken haze, I decided to "try" for a baby again. One month later, after visiting a medium whose last words to me were, "Your grandfather wants you to know you should stop drinking coffee.", I took a pregnancy test; a second line glared back at me.
I sobbed. and I sobbed. and I sobbed some more.
It took me a week to tell my husband that I was pregnant again. I just couldn't do it. I wanted to hold all the fear inside me, and selfishly harbor the secret, so that in the event that something went wrong, whether I miscarried or receive another fatal diagnosis during the anatomy scan, only I would feel the pain. I desperately wanted to protect my husband from a repeat of what had happened with previous pregnancies, and most importantly, from reliving and repeating our termination for medical reasons. At that point we had not received results of the whole exome sequencing, so I did not know if the issues that were not compatible with life previously were genetic, which would increase the possibility of history repeating itself. No part of me believed that I would actually meet the ball of rapidly dividing cells that inhabited my uterus.
There is no bottle of brandy this year. There is no sobbing behind locked doors, or stiff embraces between us. There's no numbness. There is still pain, and there is still sadness, but it now lives in the ether around me and has become a fluid that I carry with me everyday. It ebbs and flows, it comes in waves that crash into me, and it often recedes just as quickly.
A year ago today I was convinced we were doomed to spend every Christmas alone. I never would have dreamed that only a year later, our hearts would be swollen with a love that we never knew was imaginable. I never dreamed the following Christmas there would be a bassinet sitting next to our bed.
I never dreamed I would actually be a mother.
But I am. And I was a mother last year also. A mother who had been faced with one of the most difficult decisions in circumstances that no one should face.
I type this with tears running down my cheeks. I still cry for the son that I never got to hold. That never got to feel the love of his mother. Having S didn't eradicate that pain, and it never will. The first few days after I brought S home I cried for the son I didn't bring home 10 months ago. S doesn't replace Olive. Nothing and no one will ever replace Olive. He will always have a piece of me, and he will always be a piece of me. He changed my life in ways much different than S did and ever will. My experience with Olive has made me a better mother to S, and has made the disenchanted scientist in me appreciate just how difficult it is to bring life into this world.
Olive also gave me another gift, as we learned he had a dominant mutation for ARVD - one that he inherited from me. Through this learning we had S tested immediately after birth, and he also has the gene and will now be followed by cardiologist for the rest of his life, despite the low penetrance of ARVD associated with the mutation. Our molecular learnings from Olive may eventually save S's life. And mine.
People, even family members, are often surprised when they learn that I still often think about Olive and the termination. They assume that since there is now a child in my arms, everything is okay, and that I just move on. It doesn't work that way.
A child born never replaces a child that never came to be. Life doesn't work that way. I carry both with me everyday, despite the fact that only one is tangible.

Thursday, December 25, 2014

Christmas 2014 - A new child doesn't replace a lost child.

I was chopping root vegetables this evening when it hit me that a year ago I was doing the same exact thing prior to leaving for my in-laws.

But everything was different then.

In 2013 with every slice of sweet potatoes, turnips, parsnips, and the like, the knife made a loud thud on the carving board.  I barely heard the loud noise, even though it echoed throughout the kitchen.  A stiff glass of apple brandy with an ice cube sat next to the cutting board, and I struggled to look through red, swollen eyes.  The bottle of apple brandy was my best friend Christmas Eve & Christmas.

Everything hurt and at the same time nothing hurt.  Occasionally my brain reminded me that I was supposed to become a mother the next day, and at those it took all my strength to fight back tears and keep my hand from wandering to my stomach.

I tried so hard to forget, to forget the baby boy that was supposed to grace my household at that time. Tried so hard to stop reliving that day at the perinatologist where one by one our dreams crumbled.  My husband having to leave the room to cry because he didn't want me to see the tears running down his cheeks, because he thought he had to be strong for me.  The single man in my life who never cried, who grieved the loss of olive for far longer than I, who was afraid to touch me for months because the pain was still so strong, and who spent every single day of my subsequent pregnancy in a pit of silent fear that history would repeat itself.  Attempting to comfort himself in statistics that had already worked against us.

December 1 2013 I went to my psychiatrist and told him I wanted to try getting pregnant again in the new year, and I had to wean off my meds.  Christmas without the meds that helped numb the pain of Olive's departure was difficult, hence the brandy.  Hence the hiding alone in the basement, or bathroom, to stifle my sobs so no one would hear them.  I surrounded myself with family that year, hosting my family and my in-laws, figuring that misery loves company.  We could all be miserable together. 

But this Christmas is different.  In January, in a drunken haze, I decided to "try" for a baby again.  One month later, after visiting a medium whose last words to me were, "Your grandfather wants you to know you should stop drinking coffee.", I took a pregnancy test; a second line glared back at me.

I sobbed.  and I sobbed. and I sobbed some more.

I won't detail the pregnancy here, I'll save that for another post, but it took me a week to tell C that I was pregnant.  I just couldn't do it.

So, this Christmas is different because as I was writing this, this face was staring at me.



There is no bottle of brandy this year.  There is no sobbing behind locked doors, or stiff embraces between me and Chris.  There's no numbness.  

A year ago today I was convinced we were doomed to spend Christmas alone.  I never would have dreamed that only a year later, our hearts would be swollen with a love that we never knew was imaginable.  I never dreamed the following Christmas would be full of baby snuggles, smiles, and love radiating from everyone.  

I never dreamed I would actually be a mother.

But I am.  And I was a mother last year also.  A mother who had been faced with one of the most difficult decisions in circumstances that no one should face.  

I type this with tears running down my cheeks.  I still cry for the son that I never got to hold.  That never got to feel the love of his mother.  Having S didn't eradicate that pain, and it never will.  The first few days after I brought S home I cried for the son I didn't bring home 10 months ago.  S doesn't replace Olive.  Nothing and no one will ever replace Olive.  He will always have a piece of me, and he will always be a piece of me.  He changed my life in ways much different than S did and ever will.  

And, since I'm hysterical now, I will end this here, to go and hold my son on his first Christmas morning. 

Wednesday, April 30, 2014

13 week U/S of Olive

Note: This is not the new baby!  I am posting this here to show someone!


Tuesday, February 18, 2014

Tears of Frustration

We were watching a "Modern Family" rerun tonight, and I found myself a sobbing mess.  Gloria was announcing to Jay that she was pregnant, and there was so much happiness and joy in the scene that I was overwhelmed with emotion.  And jealousy.

Because there is neither happiness nor joy when I am pregnant.  There is only fear.  I hate the fact that I can never feel comfortable when I'm pregnant.  That I can't look at baby clothes and nursery furniture and squee, designing a nursery and starting to put hopes and dreams in my pregnancy.  Once you've been burned a few times, the pain remains. You never forget the feeling of warmth as it takes over your bottom half; the feeling of you stomach falling and your heart breaking as you run to the bathroom knowing full well that you're going to be greeted by a flash of red.

You never forget these feelings.  They color every moment of your pregnancy.  You sit there, waiting for the next drop to fall. Waiting for the straw that will break the camel's back.  You wait, and you wait, and you wait, because you can't let yourself get excited or hopeful, because you know you're setting yourself up for failure.  It's easier to wait for it, to expect it, than to be caught off guard by it and feel as if your world is crumbling down around you.  If you expect it to happen to you, you can't ask, "Why me?" when it does happen.

I crave a boring pregnancy.  But, even if it's physically boring, it will never, ever be mentally boring.  I have a team of 4 doctors, and I speak to one of them daily.  Whether it's for emotional release, or comfort, or because they want to make sure that nothing is falling through the cracks, there is always a message or a missed call from one of them.  And I love them for that.  I love my high risk ob, and my gyn for calling to check-in on me.  For telling me that they'll test my hcg & progesterone every 120 hours if it will make me feel better.  My gyn told me that once we know there's a heartbeat I'm welcome to call her whenever I need to be reassured, and she will book me with the ultrasound tech.

But, I can't see this pregnancy.  If this pregnancy makes it to the first ultrasound (Mar 3), we will not be looking at the screen.  We will not be viewing this pregnancy until after a successful anatomy scan.   I have to protect myself this time, and I have to protect my husband.  There's only so many heartbreaks that a heart can endure before it just stops playing.  I don't want to get to that point.  I can't get to that point.  It's better for me to be seemingly disengaged, to keep myself from getting too attached.  I did that to a degree last pregnancy; I never expected to meet that baby.  This time my guard is up even higher, at least until the anatomy scan.

I wish I could be a normal pregnant woman.  I wish that I could glow, smile, and be immune to all of the things that could go wrong.  But I can't.  That wasn't my journey.  This is my journey, and while we have to make the best of it, I can't help but feel so so angry, and so so robbed.

Sunday, February 16, 2014

Here we go again...

Last Sunday I afternoon, day 24 in my cycle, I decided to take a pregnancy test because, well, I now have a 24 day cycle and I had positive ovulation tests from CD 10 -12.  It was the first cycle I decided to use LH strips because I figured we would either try this cycle or next cycle.  

After I got out of a quick shower I was greeted by....


Not simply a positive test, but a GLARINGLY positive test.  Not even a squinter.  A completely in your face, lady you have a fertilized egg implanted in your uterus (or an hcg secreting tumor somewhere).

I cried

and I cried

and I cried some more. 

Because I am terrified.


Wednesday, September 4, 2013

First period after D&E

32 days after my D&E my period returned.  I started feeling crampy around day 31 and knew that it was around the corner.  I also had tons of bright red cervical mucus on 8/20, so I assumed ovulation would be 8/21 or 8/22, which means that my period is here, pretty much 14 days exactly after I ovulated.  

I don't know what to feel.  I was recently pregnant; I thought it would be a year before I saw a period again considering I would be breast feeding.  I never thought I'd see my period in September 2013.  

I also can't believe how quickly the body moves on from the pregnancy. With an empty uterus my body just moved on, reset its program and once again started ovulated, preparing for another pregnancy.  How quickly the body forgets, while the heart and mind hold on, desperately hold on.  My period feels like it officially closes that physical chapter of my life, the chapter that will forever be known as the "olive chapter".  But my mind and heart will keep the chapter open, continuously writing and adding chapter after chapter, composing a book. 

I also find some solace in my period, in my body so easily returning to normal.  I know that there are some women who would kill for their period to come regularly, and those who required medical intervention in order for their period to return post D&C or D&E; so I should be thankful.  Part of me is, believe me, some of the tears I cried when I ovulated, and when I got my period were for the fact that my body seems to desperately want to regulate itself.  It seems to be returning to its "before" cycle - and that's more than I could have asked or expected.  I'll be thankful for that gift.

Friday, August 30, 2013

Ten perfect fingers & ten little toes (a poem)

You had ten perfect fingers,
Five on each hand.
I'm reminded of them each time I look at my hand.
And when I hold your father's hand,
I'm reminded that those ten perfect fingers,
Were a combination of ours.

You had ten little toes,
On two itty bitty feet.
Every time I wiggle my toes,
I wonder if you wiggled yours,
When you were inside of me.

You had ten perfect fingers,
and ten little toes,
But you never would have known they were there.
You would have never been able to grab those toes,
Or count on those fingers,
Because the neural wiring
Just wasn't there.

I keep a picture,
Of five of those perfect fingers,
Faced down in my center console,
When I step in to the car I'm reminded of my little angel
watching over me.

I hope where you are,
that you're watching me,
and that you're able to use those ten perfect fingers,
to grab those ten little toes.

I'll never feel your hand in mine,
Those soft fingers will never graze my face.
They'll never grab at my finger,
and hold on for dear life.
My dear angel,
it just wasn't your life.
The millions of tears that I cry,
will never make it your life.

Perhaps one day,
When my time on earth is through,
I'll feel those ten perfect fingers
and I'll kiss those ten little toes.

Copyright 2013 VMHC @ http://myjadedinnocence.blogspot.com/

Tuesday, August 27, 2013

Grief

Why can't grief be one directional and linear?  Why must it be circular, a loop that leads back to nothing but sadness.

Monday, August 26, 2013

everyday I wake up with the same broken heart and wonder how to even begin putting the pieces back together.  

even though I never met you; I miss you.

I miss the past  

Sunday, August 25, 2013

Things that exhaust me

things that exhaust me:


  • The never ending voice in my head telling me, "I am ok, I will be ok, life will go on."
  • Smiling and laughing while out with my friends, because, well, it's "good for me to be out" and it gives the appearance that life is going on
  • Life going on, as if nothing has changed
  • The fact that everything has in fact changed
  • Hiding my tears behind sunglasses
  • Feeling like I need to keep my tears from my husband because he has already moved on to acceptance, and we don't need the two of us inhabiting my hell.  I don't want to reopen the compartment he has been been able to close.
  • My body returning to "empty" (hormone levels, uterus, etc.)
  • Knowing that my uterus is in fact empty
  • Occasionally hearing the voice that screams, "I am not okay!" and desperately trying to close that compartment
  • The seemingly never ending cycle of anger turning to grief turning back to anger
  • Wondering why my baby wasn't fit for this earth, when every single day crack addicts and 15 year old girls give birth to physically normal children
  • Acclimating myself to our new "normal"
  • Accepting that this is our new "normal"
  • Remembering that everything has changed
And, ultimately....
  • Accepting the fact that I had absolutely no control over what happened, and have no control over future pregnancies. 

Sunday, August 18, 2013

Maternal v. Paternal Grief & Judgement

Friday night C and I had dinner with 2 other couples.  Both couples suffered losses later in their pregnancy.  2 of the losses were TFMR, and 1 was an actually delivery and loss incredibly late in her last trimester.

While we feel alone, we are not alone.  We are never, ever alone.  Shame, grief, and deep sadness may keep us from sharing our stories, from being straight forward and broaching the statement.

I am a mother; yet the most important decision I made for my child was the decision to end his life before it even properly began.  This decision was the ultimate act of love, of compassion, of empathy that we could have given to him.  We ceased his suffering, and we made the decision to shoulder it on our own.  There is no shame in that decision.  There may be people who try to vilify C and I for decision; but those people do not understand.  You don't understand the position anyone who opts to TFMR until you sit in their shoes.  When you're laying on the table, or sitting in an uncomfortable chair, and expert after expert is telling you the same thing; that if they were in your shoes, they would end it all.  Do you know how hard it is to stare someone in the eye, and tell them that their 20 week old fetus, an amalgamation of two people so in love that they created a child, that their little one is missing a vital organ, or a piece of their brain, and will never, ever live a day on their own?  Or if that they do have the opportunity to breathe a few gulps of air, they will be in infinite pain and will remain that way until they pass ?  Do you know how difficult those words are to deliver to a couple whose hands are intertwined beyond belief, with tears running down their cheeks, their hearts in pieces on the floor, and their minds and souls on another world?  Until you have had to give or receive this information, you have absolutely no right to judge anyone sitting in those seats.  You have no right to judge or condemn the couple whose ultimate act of love and compassion is to opt to shoulder a lifetime of pain.

Millions of women cry every Mother's Day; women cry for the children they have lost, for the children they are yet to have.  Women cry for the children they desperately want; whether they be babies who never graced the earth on their own, or babies that couples dreams about daily, and hoping beyond hope to one day conceive.

These women cry in silence; grieve in silence.  Walk into the bedroom and shut the door, and sob either guttural sobs or silent tears for the babies that have been taken from them.  Babies conceived in love; fetuses only weeks or months old, already cocooned in the love, hopes and dreams of their parents and their grandparents.  Millions of tears fall on Mother's Day; millions of fake smiles are worn, nods of understanding exchanged.  But, these women push down their feelings, and continue with the day, continue with their lives, because if they do not, if they give into the pain, to the loneliness, than they lose the hope of becoming a mother.  And the loss of that hope, is a tragedy far beyond comprehension.

Many of these couples have other children.  They continue parenting their other children, despite the pain.  They push it aside and continue to be role models and pillars of strength for their other children.  But, when someone asks them how many children they have, they pause.  They count the number of living children, and this is the answer that the person expects, but some of these women desperately want to include the the children who didn't make it; the ones that live in on their heart, mind and soul. The children who may never run around the living room, but are constantly running around their mind.

Then there are the men.  The men who were waiting, ready to become fathers.  Whose chests once filled with pride as they told others of their impending new addition.  As they shared memories of their childhood, and what they couldn't wait to show and teach their sons.  Eagerly awaiting the chance to meet their little boy, to show him the ways of the world, to educate him and to help him become a respectable man of the world.  These men were also hoping to feel a tiny hand in theirs; and a little voice saying, "I want to be like you dad.".  Words that now are only a distant memory, and a hope for the future.

Some of these men were preparing for daughters.  For dresses, for pearls, or for softball, and field hockey; whatever their little girl desired.  They were already fiercely protective of their little angel from the moment they heard they would have a daughter.  Part of them changed.  Their protective, paternal instincts kicked in. They would look at their wives and imagine their daughters as mini-versions of their wives; intensely beautiful, inside and out.  And now, that image, is one that will be forever frozen in time; compartmentalized in the recesses of their brain, only to be opened in moments of weakness; perhaps on Father's Day.

I feel for C in a way I don't feel for myself.  I know our pain and our paths of grief are different. I carried Olive for 20 weeks; because we had lost before, C was reserved, and it wasn't until we passed the first trimester that he began kissing my stomach good-bye every morning, saying good-bye to his son.  He stopped doing that on 8/24, as it was late on 8/23 that we knew that our son was likely not fit for this world.  C witnessed my break down, but held my hand through it all.  Through every second consultation, through every visit to the ER when we thought it may finally be over.  He watched his wife be torn to pieces while in his mind his hopes for his son, his future of fatherhood, shattered.  The man even held my hand while the laminaria was inserted, as I sobbed, both from pain/discomfort, and from knowing that this very procedure confirmed the end of our son's life.

C had always imagined I would break his hand during delivery, while his son was entering the world around his estimated arrival date; he never imagined I would be doing it nearly 4 months early, when we both knew the baby would never survive.

The loss of a fetus, or a baby, whichever term you prefer to use, that brings you peace, is a record that doesn't stop; it's a soundtrack that is played on repeat; a symphony whose movements transition from joy and happiness, to sadness and despair in an instant.  And this song plays indefinitely in your mind, and it radiates through you, and it influences every decision you make; whether or not you even realize it.  Life changes.  Life is never the same.

Small acts of kindness

I like to acknowledge small acts of kindness; especially those that truly go a long way with the recipient.

Today's acknowledgment, and thank you goes out to the obgyn I saw for 6 years, and had to transfer out of when I hit 1 weeks.  She saw me through multiple miscarriages, comforted DH & I when we lost in January, and was genuinely so happy for us when we got pregnant this time.  She told me when she saw ultrasound pics on her desk - she cheered for us.  She also called me when she heard the 18 week prognosis from my current ob, just to see how I was doing.

On Friday I was waiting for my re-check I heard my phone vibrating.  I couldn't answer it, but when I finally got to it, noticed the number resembled that of my normal obgyn.  At my 12 week ultrasound my core ob finally congratulated me on my pregnancy (she knew up to that point I was too scared to hear that word), hugged me, and told me she would miss me.  She said that at my 11 week scan (post a bleeding episode) the u/s tech handed her the u/s images she started cheering, because she was so happy that the blood was benign. 

Well,  it was my original ob that was calling Friday morning.  her voicemail made me cry.  She called just to tell me she was thinking of DH & I, hoping that we are well, and that if we ever need someone to talk to about this pregnancy, or as we approach the next, that her door is always open to us.   The fact that I randomly crossed her mind, and that she actually picked up the phone just to ask, "How ARE you?", actually caring about the response, means so much to me.  In my occupation I work with physicians on a daily basis, and so few of them actually move me and remind me that there are doctors who go above and beyond their typical call of duty.  (oncologists & REs generally being the exception to this statement.) 

Right now, I am floored by the kindness of this doctor and the fact that she went out of her way to call me.  Just to say she was thinking of me, just to make sure I'm okay..   I'll call her back this week and thank her, and I hope she will be able to understand me through my tears - tears that are a mix of gratitude and genuine sadness.

Wednesday, August 14, 2013

Quotes & Statistics

Whenever anyone quoted statistics to me, saying, "oh, the odds are 1:1,000,000".  All I could think about was that 1.  That regardless of the number on the right, there's still a number 1 on the left side.  And every time I met a pregnant woman, a successful pregnant woman, I thought to myself, well, you are one of the 1,000,000.  When I was a member of a pregnancy forum, I actually sat there and thought, "all of us will not make it.  at various points, people will begin to leave.".  Inevitably, I was one of those people.  I was the dreaded number of the left side of the statistic.  I can only happen that I can be that number only once.  I can come to term with the early miscarriages, where the chances are as high as 25% - perhaps I've just been unlucky.

But, just once, I only need it to be just ONCE, I'd like to be the number on the right.  I'm always the number on the right when it comes to the lottery, and contests, and everything fantastic; I'm never that 1, never when I want to be the 1.  Now I am the one, and I pray with all my might to a god I don't even know exists, that for once, I can be in the 'normal' distribution.  Why is that so much to ask?  Why is that seemingly so difficult?

I don't have much energy to type much more tonight, so a few of my favorite quotes about loss...
~~~~~~~

I carry you with me into the world, into the smell of rain & the words that dance between people & for me, it will always be this way, walking in the light, remembering being alive together. - Brian Andreas

I never knew emptiness could weigh so much, she said.  I can barely hold it.  So he sat beside her & reached for her hand, and they held it together. - Brian Andreas

♥ “Each new life,no matter how brief, forever changes the world.”
♥ ‎”There is, I am convinced, no picture that conveys in all its dreadfulness, a vision of sorrow, despairing, remediless, supreme. If I could paint such a picture, the canvas would show only a woman looking down at her empty arms.” -Charlotte Bronte
♥ “There is no foot too small that it cannot leave an imprint on this world.”
♥ “Your absence has gone through me like thread through a needle. Everything I do is stitched with its color.” W.S. Merwin
♥ “I held you every second of your life.” -Stephanie Paige Cole
♥ “We are grieving, We are not contagious, We are not sad all the time, We laugh, We smile, We cry, We weep for being happy, We live, We talk, We feel, We come from every background, We are sad, we lost a baby, We are…” -Jennifer Davis
♥ “Strength does not come from physical capacity. It comes from an indomitable will.” -Gandhi
♥ ‎”It has been said time heals all wounds… I do not agree. The wounds remain. In time, the mind protecting it’s sanity covers them with scar tissue and the pain lessens, but it’s never gone…” -Rose Kennedy
♥ “How very quietly you tiptoed into our world, silently, only a moment you stayed. But what an imprint your footprints have left upon our hearts.’” -Unknown
♥ “If I had lost a leg, I would tell them, instead of a boy, no one would ever ask me if I was ‘over’ it. They would ask me how I was doing learning to walk without my leg. I was learning to walk and to breath and to live without Wade. And what I was learning is that it was never going to be the life I had before.” -Elizabeth Edwards
♥ “It’s a happy life, but someone is missing. It’s a happy life, and someone is missing.” -Elizabeth McCracken, An Exact Replica of a Figment of my Imagination
♥  “Do not judge the bereaved mother.
She comes in many forms.
She is breathing, but she is dying.
She may look young, but inside she has become ancient.
She smiles, but her heart sobs.
She walks, she talks, she cooks, she cleans, she works, she IS,
but she IS NOT, all at once.
She is here, but part of her is elsewhere for eternity.”

♥ “Hope is the feeling that the feeling you have isn’t permanent.” -Jean Kerr
♥ “Hope is all I have left; if I lose hope, I lose everything.  I refuse to go there just yet.  I'll hope for the future, because without that, there is no future." VMHC
Most of the above are from http://facesofloss.com/resources/quotes - credit given to the author when the name was available.





Tuesday, August 13, 2013

Mind fuck

The actual D&E was on 8/2, and after a week of bleeding, it seemed to start to slow down on Friday.  I was so happy with seeing barely nothing.  I thought I'd finally be able to put the physical piece behind me, along with the fears of losing my uterus.

Then, today, while making dinner, it returns!  And it's the most terrible, awful feeling in the entire world.  It's amazing how a single sensation can send shudders down your spine, cause you to break out into a sweat and drop your stomach to the floor.  It's similar to feeling warmth when you're pregnant, but when you're pregnant you also feel your heart literally stop and fall to the floor.

What a mind fuck.  I just want the physical portion to be over.  I need to put the physical aspects of this hell behind me so I can focus on packaging up the emotional baggage.

Just go away, damnit.  Go away and leave me and my uterus to heal in peace.

Sunday, August 11, 2013

Loss impacting others, more guilt & the future

I feel like my main iPhone photo album (when you go to camera -> pictures) is just a linear history of a heart breaking.  There are photos of the positive pregnancy test from last July.  The one decision I will always regret.

Then there's the positive line from December.  I remember that morning so vividly.  It was a week and a half after we returned from Paris; our selected locale for trying to conceive for the first time.  We thought, how romantic to begin such one of the most loving of endeavors in the most romantic city in the world.  I remember putting my hand on my pelvis, and quietly saying "hello.".   I remember trying so hard to take a picture of that light, but oh so present line, so I could text it to my sister for confirmation that I wasn't going crazy.  It was 12/21.  I didn't tell C until Christmas morning.  Then I remember on 1/2, making a frittata, happily chopping vegetables, excited to use a new roasted tomato and artichoke spread that I had found at Williams-Sonoma.  But then I felt a warmth.  And it was like my heart stopped.  Instinctively I knew what the warmth meant; I knew that the pregnancy was over.  Little did I know that the next couple weeks would be crazy because while I hemorrhaged on 1/2, the pregnancy progressed for at least a week, and completed itself at the end of January.  Which is why we didn't try again until the end of March.  And, as luck would have it, I have a picture of the positive line from that single March event; it's another picture on my iPhone.

In December (and April) called my doctor for a routine blood test - she likes to monitor hcg levels and progesterone in women who have miscarried.  I had all the blood work, received all the confirmations; but never a congratulations.  My obgyn office does not congratulate a woman until she passes the first trimester.  As someone who has lost, I see why they do this, and I am thankful for this practice.  For first time mother's, they sometimes wait until after the 8 week ultrasound confirms a heartbeat.  I think that happens more when the women want to be congratulated.  I fit solely into the other camp, the one that does not want to be congratulated until the terrifying first trimester is over.

I find it to be so crazy that there are women that go through this process blissfully ignorant; convinced that their pregnancy will result in a baby; screaming immediately from the rooftops. Maybe I'm weird, but I just don't have that in me.  There's just so much that can go wrong; so much pain that can be caused; I just can't bring myself to help create hopes and dreams and excitement in others, knowing that in the back of my mind that it may not last.  No one but C knew I was pregnant in December - I told him on 12/25 and was able to keep it from his family the entire time, even though we were there for 4 days.  Somehow no one noticed I wasn't drinking.  Or I made virgin drinks and pretended they contained alcohol. I told my mother only after I miscarried.  I'm relieved I did it that way.  I'm relieved I saved her the pain of losing that grandchild - or rather, of expecting it to arrive only to find out that it wasn't destined for us.

And, considering for us, no pregnancy has ever truly lasted the test of time, I don't know when I'll again share my pregnancy.  This time around we told C's parents on Mother's Day because we had seen the heartbeat and I was about 8 weeks.  We told my parents the day after via Facetime because my sister graduated from college on Mother's Day, and I didn't want to take that day from her.  I wanted it to be about her, as it should have been.

Next time, I guess we tell after the anatomy scan?  After the CVS?  I mean, if the amnio and microarray from this pregnancy are clean, then we have to wait until after the anatomy scan as a 'perfect' CVS just wouldn't be enough.

I feel like with every pregnancy I'll be afraid of breaking not only my heart, but the hearts of all of those who love us.  How fair is that?  How do you deal with those feelings, too?  Knowing that the loss touches and breaks the hearts of everyone close to you?  I know I'm not responsible for the feelings of others, but once you have caused such intense pain in others, even when it's beyond your control, it's hard to imagine how you will react when put in that place again. My cries for the son I lost are the most primal, guttural screams of pain that I ever knew existed.  I contrast that with the joy on my mothers face when she opened the frame containing an ultrasound picture, how she jumped up and down, tears of joy streaming down her face.

All of that is gone now.  And I played a role in robbing it from her. From everyone.  It's like a highlight reel that runs through my brain that just cannot be stopped.  Everyone acts strong for me when they're with me, because they have to put on that facade; but I know that's all it is; a facade.  I know that the people we love still break down over this loss.  And those close to us with children grab their children and hold them closer, thanking whichever god they believe in that they were not us.  Hoping with all hope that they are never us.   And our friends who haven't started trying yet probably partly think we are pariahs, and hope that our bad luck/ju-ju won't rub off on them.

This event, these events, will truly reverberate in every word, every action, every decision we make in the future.  They have reshaped the way that we look at the world.  That song about painting with all the colors of the wind?  Well, our palette has forever changed.

Saturday, August 10, 2013

Guilt

I often feel guilty for never speaking to my son while he was there.  In fact,  I recall sitting in the car, openly apologizing to him for my lack of verbal communication.  I told him I was sorry I couldn't find the words to speak or talk to him, but that I still needed confirmation.  I still needed to know that he was in for the long haul.  I told him these words when I "thought" he could hear, per the baby books of course, even though I knew he couldn't understand.  If he heard anything, he just heard the "blah blah blah"that the Charlie Brown characters hear whenever an adult speaks to him.

But still, I felt so guilty.  I would ask C if it was wrong of me.  At 18 weeks I was barely showing, it looked like maybe I ate an extra doughnut and couldn't button the top button of my Hudson's - so I bought maternity jeans - the only purchase made that put faith in my being in it for the "long haul".  I rarely ever touched my stomach, if I did, it was because I was uncomfortable and wanted to reinforce that there was, in fact, a baby in there.  Since he was a little small, it's possible I wasn't showing for that reason, or, it's possible I was bound to be a late shower.  My uterus did move up, so next time I may show earlier.

We went to Bellini, PBK, and I had planned a trip to Boston to go to RHB&C to look at nursery furniture.  There were a few other specialty shops on the list, but C & I went to Bellini & PBK together.  And I'll never forget the day.  He fell in love with a set at Bellini and wanted to buy it right there.  He was so ready, he was so "in".  But I wasn't.  My heart was still reserved and told him we had to wait.  The saleswoman assured us many times that the most we would lost if we canceled the order was $50.  What she didn't realize is that I didn't give a crap about the money.  If we were canceling that order it meant that it was because there would be no baby to sleep in it; that no baby would have come home.

I've told my therapist that if we are blessed with a next time, I won't be able to look at the ultrasound monitors or televisions until after the anatomy scan.  I won't be able to see anything on the screen.   A simple nod from the techs will be enough.  I waited until 14 weeks to start a pregnancy journal for this baby.  C put all the ultrasound pictures into the book, and put the book in the box, and the box is in storage.  All that is left of our son is in storage.  Whether or a storage unit, a hospital storage freezer, or recesses of our brans that we refuse to allow ourselves to enter.  That is where our son lives now.  C made the mistake of reading the journal before he put it in storage.  He was glad he did it while I was sleeping because he cried.  He cried at my words because my words told even the baby that I waited so long to write in his book, because I couldn't believe he was real, and that he would be coming home to us.  In it I wrote the story of the first time C heard his heartbeat via fetal doppler one morning at 9 weeks. We had had 2 ultrasounds at that point and saw Olive, but hearing his fast, strong heartbeat was a completely different experience.  C said hello to him and told him he sounded like a train.  and then nearly 11 weeks later, he said good-bye.

I wonder if I'll ever stop feeling guilty for thinking maybe I was at fault for not committing 100%; for needing so much to believe that my baby was healthy, and that in December he would be in my arms.  But now, with our ending, can you even blame me?

Friday, August 9, 2013

Thought of the day....

We've had unprotected sex during 4 fertile windows, have gotten 4 positive pregnancy tests, yet have no children.  Did you know it's possible to bat .000 while batting 1.000?

It has been a week since my surgery and while awash with emotions, I'm also quite numb.  I thought that it would bring me closure, but I feel like it's brought me nothing but grief.  The only true closure in a pregnancy is having a living, breathing, kicking baby in your arms.  True closure does not come in any other way.

I miss my son.  I miss waiting to feel his movements.  I miss knowing that he was inside of me, kicking and punching, and sometimes growing.  I miss the family that we had planned on becoming this Christmas. I miss me, the woman I was two weeks ago.

I'm so angry at myself because I never believed my little man okay.  I used to constantly ask my husband how we would react if something was chronically wrong with him.  I rarely talked to him because I was so afraid of losing him.  As I may have said earlier, I sobbed during my entire anatomy scan at 18 weeks because I just knew something wasn't right.  I left my 13 week early anatomy scan (done at the request of my peri) knowing something just wasn't right, even though no one said it.  Everyone tried to pacify me.  Asked me if I needed help dealing with my anxiety.  It breaks my heart that I was right.  It breaks my heart that I didn't show him more love when he was inside of me.  That at a point I actually asked him to stop trying so hard.  I told him I knew his program was failing, and that it was okay, mom and dad would understand, if it just stopped.

I'm a trained scientist and MBA.  I've always found comfort in statistics.  I've looked to science and math for answers.  And now I feel like they've both failed me.  DH and I have become the dreaded black swan.  We now inhabit the tail end of a distribution - a harsh, final line on one side, and a vast empty space distancing us from "normalcy" on the other side.  I ask myself constantly what I want from the testing - what, if anything will bring me peace.  Do I want the microarry to find something that will enable us to jump to IVF with PGD?  Do I want the full exome sequencing to be normal? 

Do I want to be told oh, just keep trying, you guys at least have good luck getting pregnant? how many more times can we roll the dice ourselves before it breaks us?  Do you ever become immune to this pain?  When we become pregnant do we just assume that it isn't going to work, live in hell during every moment of the pregnancy, only celebrating when we have a child in our arms?  Or do we wait until the threat of SIDs decreases?  If we are lucky enough to get pregnant again, when do I start loving that baby?  When do I let my guard down, and accept it with open arms?  What is our capacity for pain?  Do I want to get to a place where I become immune to this pain? When will I be able to love a fetus growing inside me rather than worry it's just going to depart too soon.

It only needs to work once.  Just ONCE.  I know it's one of the most complex processes (if not the most complex) process, but for millions of people it works every.single.day.  I beg to whatever is or isn't out there listening, for us to have that one time.  One day.

Thursday, August 8, 2013

Rolling the dice.

I have a normal karyotype; though we've known this since January.

Awaiting the fetal microarray.  Flasks are already for exome sequencing, so DH and I have to go to Columbia and sign off on more paperwork and have more blood drawn.

And, while talking to my genetic counselor, she received a fax.

DH has a normal karyotype.  Honestly, I'm shocked.  I know on one level this should make me happy because dealing with a translocation isn't really fun; but, it comes with a set path forward.  We would have known our path forward.  It would have been rocky, uncomfortable, and long; but we would have had a set path.

Unless the microarray or exome sequencing shows something major, it looks like we are going to end up rolling the dice again.

I can't help but feel like even when we get a BFP, I'm still going to roll snake eyes.