Chapter 2

Chapter 2

“None but a coward dares to boast that he has never known fear”

~ Ferdinand Foch, French general (1851 - 1929)

The week of the ultrasound came and the excitement was almost too much to handle.  My husband was sent home to adjust to a day shift schedule for this week so he could go to training.  It was almost as if he was always meant to be there to see his son that day.  So there we were on October 16^th bright and early on a Monday morning; a giddy couple ready and waiting to find out the news.

I did my best to give a urine sample even though I didn’t have to go.  Then we waited in a side office while our room was being readied for us.  The nurse came in and took my blood pressure.

After a few minutes more I was sent to a room where the ultrasound was to be done.  Dr. B. walked in with a smile on her face.  I lay down and she rubbed the warm jelly on my stomach while Isaiah positioned himself on the other side of the table to view for the first time the video of our son.  I was holding his hand when the doctor asked if we wanted to know what it was.  When we said yes she positioned the camera around and took a picture pointed out to us that it was a boy.

“We’re having a boy!” I thought in excitement.  I could see the big grin on my husbands face.  He was so excited.

Then Dr. B. said she thought she saw something wrong.  “What, wrong.  What do you mean?” I thought as I listened to her.

I listened as she explained that it looked like his organs were on the outside.  She said it might be Gastroskesis but she couldn’t be sure.  Then as my heart began to sink she told me not to worry with a smile on her face.  “It’s not fatal,” she said.  She told us that the condition was fixable but just to be on the safe side she was going to schedule me to be seen at the local hospital for a more in-depth analysis.

She then went on to ask me if I wanted to get lab tests done and when I said “yes” I was lead down the hall where the nurse came in and took some vials of blood from me.

After that we went to the front desk where I was handed the phone to get the information for my visit to the hospital.  They asked me all sorts of questions from who they could contact other than my husband in the area and what religious preference I wanted, my address and insurance information.  Then she asked me if this Wednesday would be okay and when I said that would be fine she told me she’d set me up to be seen at 10:30.  And I walked out of the office at total ease knowing that my son would be okay because I had total faith in what my doctor had said.  The only thing that played on my mind was the ultrasound picture with the little arrow next to the word, “Boy.”

I spent the rest of that day working at my church.  I remember it was not only raining incredibly hard that day but it also was hailing like I had never before seen in my life.  It looked like the ground was covered in snow there was so much ice.  After running up to the front door I quickly broke the news to Trinity, my pastor, that I was having a boy.  Excited for me he told his daughter the news as well.  It wasn’t until later that I mentioned that there were any problems with him.  He told me he wasn’t worried and I told him I wasn’t either but he also asked that on Wednesday when I get the news to let him know and I assured him that I would.

The rest of Monday and Tuesday were our last happy pregnancy days.  We called our families to let them know the news.  When I told my Mom that they had seen something wrong she told me about another kid she knew who had the same problem.  She said that he’d had some small problems growing up but that he was otherwise a normal kid.  Even she told me to not worry.  Apparently, the issue was fixed with a few surgeries and then he was fine.  I hadn’t even really thought about surgeries until that point.  Well, duh Rachel your baby boy has his organs outside his body.  What do you think they are going to have to do to get them back in?  Okay so after thinking about that I was a little bit nervous but knowing that he would be well and fine after the fact made it not such a horrible thing for me. 

Then came that horrible Wednesday morning when my world would change forever.  I got up early to take Isaiah to his training.  We hadn’t even thought to ask if Isaiah could get out of his training to come with me knowing that the answer would be a big fat, “No.”  When I came home I showered and left extra early to make sure I could find the hospital since I’d never been there before.  I found it easier than I thought I would and called my Mom to kill time while I waited.  When 10:00 rolled around I got off with her promising that I would call her when it was over to update her.  As a last minute thought I stuffed a few pieces of scrap paper and a pen in my pocket with my keys and my phone in case I would need to write down any information.

I knew I was looking for the fourth floor but where on that floor I needed to go I had no idea so I asked at a desk along the way which direction to go.  It was all the way on the other side of the hospital but I was early and didn’t mind the walk.

When I checked in I was asked to check my information and sign a screen saying that it was all correct.  Then I was handed a clip board where I had to answer a number of questions, most of which I had to strain my brain to remember dates and other random facts about myself.  When I was done with that I remember running across a magazine that looked interesting about a new movement in the Protestant church to get as rich as possible.  I was disgusted but it kept me occupied.

Then a very nice lady with short brown hair came out into the hall and called my name.  I went back with her relieved to not have to finish that story.  She brought me to a dark, slightly cold room with a bed in the middle which I proceeded to hop up onto.  She chatted away at first in a very good mood.  She asked me if I knew if it was a boy or a girl yet.  Happily I answered that I had found out it is a boy and how excited I was.

I think it was shortly after that when I noticed the change in her face.  She had stopped smiling, her face became stern and it seemed as if she was straining her eyes to see the screen while she was biting her lower lip.

She started jiggling my belly to get the shots she wanted.  She would change the screen from black and white to color and back again taking picture after picture.  At one point she asked me to lie on my side to try and get a good shot.  She had me pull my pants down even lower than they were because the baby was sitting so low she couldn’t see his face.  It was so low; in fact, that I could tell some of my pubic area was exposed.  This went on for what seemed an eternity.  Twice while I was laying there my phone rang ironically singing the Reliant K song, “I’ve gotta get out of here and I’m begging you I’m begging you to be my escape.”  I apologized for forgetting to turn off my phone but it didn’t matter.  I knew that people were calling to find out the news and here I knew that something was horribly horribly wrong and I couldn’t share that fear with any one.

Finally the sonographer said something to me.  She told me that she was going to go get the doctor to come and view my baby in “real time.”  She pulled the towel over my tummy and left me there staring at the blank screen to wait.

It felt like a million years of silence had gone by but finally this doctor walks in, who introduces himself as Dr. F.  He doesn’t look very old.  He’s got short black hair, and he’s maybe in his thirties.  The look on his face was one of a forced sympathy.  It was a look that said, “It’s inappropriate to be happy right now.”  I will never forget Dr. F because he gave me a hard look at reality.  He gave me the gift of seeing the world through a new lens.

He gently pulled back the towel leaving me suddenly feeling more vulnerable than I’d ever felt in my life.  It was worse than those nightmares you have where you are giving a speech only to realize you are up there naked and totally exposed.  This was real.  I couldn’t wake up this time.

I watched his face as the sonographer moved over my belly to get the shots he was looking to see.  He had his hand over his mouth in a fist.  It was as if he was trying to contain himself.  I try and tell myself that he wasn’t smiling but even now I look back and I can see the curves on the edges of his mouth and the wrinkles under his eyes as he spoke to the woman as if I wasn’t even in the room.  I just keep thinking that what was wrong must have been a goldmine to him.  We all get excited over our work from time to time.  If our hobby is our joy then that is fine but if our work is what gets us excited then this man was the kid in the candy store.

He couldn’t contain himself as the picture panned over my little boys’ heart.  With obvious excitement he shouted to the woman, “Oh, get that shot of the heart.  That is a beauty!”  Then he realized what he’d just said and how he’d slipped up.  He looked straight at me not even trying to hide his smile making what he’d said even worse by telling me, “I meant the picture not your son.”  He then just shut up because he knew he couldn’t rectify that with out making himself look like more of an ass.

They kept talking to each other taking more and more pictures.  I was just staring at the screen watching my son moving around.  He was jerking this way and that.  I remember at one point one of them commented on how his left hand was always down by his foot.  Then at one point Dr. F looked with amazement in his voice at his back and commented, “Wow, that back really isn’t very straight, is it?”

I could see from looking at the screen something I couldn’t believe I never noticed before.  The lower part of my son’s back was so crooked it looked almost like a lowercase J.

It was really sinking in now that my son was going to be very ill and that what ever news I got would make this one of the worst days of my life.

The table I lay on seemed to be getting heavier and heavier.  I struggled to keep my eyes open in the dimly lit room.  I struggled not to give into sleep as I continued to watch my little boy poked and prodded at.  Now, looking back I wish I could re-live that moment over and over again.  It was the last time I got to see my son alive.  It was the last time I saw his little heart beat.  It was the last time I saw him struggle.  My precious little boy, how I wish I could see that again.

I don’t know exactly how long it was that I was on that table.  But finally they printed off some of the pictures they had taken.  The doctor looked at the sonographer and asked if she could find an empty room where they could sit down and talk with me.  I was told that I could clean up and that they would be back in a minute.  So I used the towel to wipe off my stomach as they ran off to search for another room for me.

It took an eternity for them to come back and that was a good thing.  It took a lot of physical effort to even sit up and standing took even more out of me.  I was biting my lip in agony while I attempted in a hunched over position to take a few steps.  That was how it was for a few minutes.  I was just barely making my way back and forth across the floor while trying not to cry I was in so much pain.  I didn’t want them to come in and see me like that so I forced myself to stand up straight and keep on going forward.  I was finally getting to a manageable position when the doctor came back in to the room I was pacing.

He led me immediately across the hall to an empty waiting room of sorts.  There were children’s toys strewn about the floor and Parenting magazines on all the tables.  He asked me to take a seat and I chose the nearest one to the door probably because I didn’t want to be there and that was the fastest exit.  But I knew I couldn’t leave.  I was like a rat in a maze, confused and in mental distress trying desperately to run away but unable to just get out.

What happened next was one of the most intimate moments of my life and I shared it with a man who was not my husband but a doctor who as I said before didn’t seem to understand how vulnerable I was let alone how scared I was or maybe he just didn’t care to look at me that way.  I was his work, his job and not a Mother with feelings and emotions and love for her little child.

He took a seat from a table right across from me and turned it around to face me.  He was only a foot or two away from my face.  I could feel his breath on me.  Now I think I can say I know how the fly in the spider web feels as the Black Widow gets up close and personal with its prey.  I can relate to the sensitive emotional pain a woman feels as she has been raped.  That is what it felt like he’d done after what he told me.  I was completely exposed, ripped open and a part of me was murdered that day.  He leaned over, his elbows on his knees.  My instinct was to lean back in my chair against the wall that wasn’t moving away like I wanted it to.  I was powerless and couldn’t get away.  I was cornered and trapped.

Looking straight into my eyes he said firmly but with care, “Okay, Your baby has issues with it that make it incompatible with life.”

I couldn’t hear any more after that.  He kept talking but those words resonate inside me still. 

“Your baby is incompatible with life.”

So final; so certain the words were spoken.

Those words have taken the intimacy away from my marriage.  They have left me unable to think I can ever have fun sex again.  My innocence is now gone forever and never again will I touch my husband in the same way.  There will always be a little bit of that day in every sexual experience I have for the rest of my life.

Dr. F stood up and grabbed the marker from the dry erase board and in a sloppy doctor’s handwriting explained all of what he’d found and what some of the things he believes could have caused it.  He told me about his bilateral cleft lip and what that looks like.  He told me about his left club foot.  He told me about his Severe Scoliosis and how it looked to him like the only organ that was inside of his body was his bladder.  He even told me about how his little heart was in the wrong place and may or may not be inside of his body.

He started to tell me about ABS or Amniotic Band Syndrome and what that is.  He told me how these bands from my womb work like barriers breaking down and destroying the baby.  I felt like a murderer.  How could my body do something like this?  How could it destroy my child?  How could it betray me this way?  Before he could go on to explain what else it could be a woman came into the room.

I remember she seemed unsympathetic.  She said she knew he didn’t want to be disturbed but some one was on the phone that insisted he talk to him.  So the doctor excused himself leaving up a board of sloppy handwriting and pictures that was my son’s death sentence for something that was simply more important to him.

I pulled out my pen and paper and quickly jotted down all of what was written on the board.  I felt like I was doing something wrong.  My hands were shaking and my heart was racing, afraid that he would come back in the room before I could write down everything he’d written.  I felt like I was stealing information I didn’t deserve to have and like I would get caught in some terrible act and have to explain myself.  No one came in the room and I stuffed the folded paper carefully back in my pocket.  My mind was then left to wander.  My son was going to die.  My body was destroying him.  It was slowly killing him and here I was alone in this knowledge in a hospital room full of reminders of happy parents and happy children.  They were reminders of something I suddenly felt I didn’t deserve.

My eyes began to well up with tears and I wanted to burst out screaming.  I wanted to moan at the top of my lungs.  I wanted to make terrible noises of grief.  Instead, I bit my tongue.  With every wave of grief I bit harder resolved not to cry here.  I was not going to cry in front of these strangers.  I’d rather swallow the taste of copper as I bit harder and harder to make me think more of that pain.

After a few minutes a kinder looking man walked in.  This was the Genetics counselor, Mr.H.  He was older and balding with a blue LDS pen hanging around his neck.  He sat down in the same chair and explained to me that I would have to talk with my husband about our options.  He told me that I could, “Come to term early,” or that I could, “Continue the pregnancy and then do an autopsy.”  I’m so glad that he didn’t actually say the word, “abortion,” because I know that my mind would not have been able to register the gravity of my situation at that point.  He told me that it was okay to cry but I wouldn’t allow myself to although I could have.  I could have folded up onto the floor and had a 2 year old tantrum full of screams and incoherent blubbering.  He told me that it would be my choice to do an autopsy but that they would request one.

He wasn’t even dead yet and he was explaining to me how they needed to do an autopsy.  He went straight from his birth to his autopsy.  I didn’t get it that they never expected me to have him born alive.

I was told that they would take my ultrasound pictures to a medical conference on Friday and that I would be called that afternoon to see if they had any better things to say but that they doubted I would be given any more hope.  They said it was a pretty solid diagnosis.

With an assurance that this was not my fault or my husbands he let me go with, “these things just sometimes happen.”  I was a zombie walking away as if in a daze.  It was as if I was floating down the hall.  I saw a man holding on to his two children walking towards me.  He gave me a smile and while I smiled back I really just wanted to wail.  I was jealous of him.  I was jealous of his beautiful daughter with her tight black curls pulled back into pigtails and his son in his red fall coat.  They were a family together and I wondered if I would ever have that.

I made it in some kind of daze all the way to my car.  It was as if I was walking outside of myself.  It was as if I were being picked up and led to where I needed to go but once I got there everything changed.  I was given a new insight to the footprints in the sand poem that is so often quoted when we are having troubles in life.  I got in the car knowing I had to call my Mom and I suddenly became very heavy.  I called her and began to sob on the phone while telling her everything.  I couldn’t help it any more.  When I got off the phone with her I sobbed even more.  I couldn’t control the shaking of my body as I took in everything I’d just been told.  I was so alone.  I had been asked upstairs where my husband was and I told the truth about him having mandatory training that he couldn’t get out of.  It wasn’t fatal after all so how could he have come?  If they had only known but now here I was unable to move or to control my waves of unbearable emotion and I had to now find a way to drive home like this.  I had to drive home with the knowledge that I had to go through this all over again with my husband later that afternoon.

The drive home was a blur.  The rest of the afternoon was a blur.  I cried for hours.  I became a pillar of mourning.  I was violated and inconsolable.  I was in my corner which is darkest in my mind.  When Isaiah called I was afraid.  I knew what was coming.

I picked him up and the only thing I could think to say was, “do you want to go out to eat tonight?”  The last thing I could do that day was cook.  I was physically incapable of doing such a huge feat as that.  He agreed and suggested Subway.  He started telling me some grotesque story about how they had sliced open a live pig’s main artery to school them on how well quick clot works.  At least that got me distracted for a moment about how glad I was that I was now a civilian and would never have to worry about using something like that.

But it wasn’t distracting enough.  Isaiah knew something was wrong.  He asked me but I just told him that I couldn’t say yet.  I asked him to just let me get to the parking lot and I would tell him there where I could stop the car.  I’m sure that short drive was an eternity to him as it was for me earlier that day.  He knew that something horrible was about to change his life forever and yet he had to sit there and simply wait in silence.

So there we were; in front of a Subway where I pulled out my little scrap of paper to read to him.  He listened intently as I read to him what was wrong and what could have caused it.  He listened with tears welling in his eyes as I told him that our son was going to die.  He began to cry as he asked me if it was something he did.  I had to tell him the same that I was told it wasn’t our fault and that, “sometimes these things just happen.”

I wonder now if I’ll ever really believe that.  How does something like this just happen if it isn’t something that we did?  That thought still wanders around in my head every day.  Would I have been such a horrible mother?  Was it some deplorable thing I did?  Was it the car accident?  Was it being around our rabbit?  Was it something I ate?  Was it one of my deployments?  What did I do to make this happen?

He looked at me and asked, “How can you say all this so cold and clinical like that?”  He was crying visibly now.

I wanted to grab him and hold him close and just say, “Oh, Sweetie. If only you know how my heart is broken.  If only you knew how my head is pounding and eyes are burning right now and how they are empty from all the tears I have been crying.”  But he turned away from me and stared out the window as he continued to whimper like a beaten dog.

When we entered that restaurant that night we were a broken couple.  We were beaten.  We had been defeated by life.  Both of us were now empty and living on autopilot to just order and get out.  I wasn’t hungry.  I was more sick than hungry but I ate that night in silence.  I ate for my son and continued to eat each day for my son.  Everything I did from that moment on was always for him.  I think that in some way it will always be for him that I continue with my life.  It will always be in his honor that I grow a little more each day.

D-Day for me will always be October 18^th, 2006.