Chapter 3

Chapter 3

“Every blade in the field,

Every leaf in the forest,

Lays down its life in its season,

As beautifully as it was taken up”

~ Henry David Thoreau,

    “Your Love One Was So Special”

That night was awful.  I had mustered up enough strength to e-mail a representative at the Utah Chapter of March of Dimes to see if there was anything I could do.  I cried so hard as I wrote to the following:

“Hello,

I don’t know if I’m contacting the right office but I was wondering if the March of Dimes would have any recommendations for my family.  My husband and I have been trying for quite a while to get pregnant so it was wonderful when we found out we are.  I’m now just at 17 weeks and went in to find out the sex of the baby but got more than I’d hoped for.  The doctor had said that she thought she saw something wrong with the baby so she sent me to McKay Dee to get a better look.  I went in at 10:30 today and was there for two hours.  I found out that what my doctor said I didn’t have to worry about was really a laundry list of abnormalities.  The baby has the following:  Bilateral Cleft Lip, Ectopia Cordis, Left Club Foot, Large Abdominal Wall Defect (the only organ actually inside the baby is the bladder) and Severe Scoliosis.  They said they don’t know what has caused this but believe this could have been brought on any of the following that I could have: ABS or Amniotic Band Syndrome, Pentalogy of Cantrell, or Body Stock Anomaly. 

These doctors are going to a convention on Friday and plan to discuss my case there but as of now they have given me two likely options.  The first option is to come to full term where they fully expect the baby will die or to “come to term early,” which is not an option to me.

Does your organization have any recommendations of specialists in the area I can see or any other options that are possibly more hopeful?  I would very much appreciate all the help I can get right now. 

Thank you,

Mrs. Rachel Thompson”

As I had promised I also let my pastor know what was going on even though I never expected to be telling him what I did.  I thought it would be more hopeful but instead the news was devastating.

That night I didn’t sleep.  I got up with my husband the next day and after he left I laid on the couch staring at the blinds in my robe for hours.  I couldn’t think of anything else I could do.  My baby is going to die.  That is all I could think of.  My baby is going to die.  My baby is going to die and I’m killing him.  There is nothing I could do.  I couldn’t even figure out how to stand at that point.

Then some time that afternoon my Mother called me.  She had been doing research.  She had made me hopeful some how after she talked to me.  It was after the conversation I had with her that day where I started down a long road of endless searching.  I would not give up on my son.  I think one of the first things I did was to muster up the strength to call the Utah Chapter of March of Dimes.  I wanted to talk to them myself rather than to wait for a reply.  I know I was crying on the phone while I talked to this woman even though I was trying not to.  I told her that I’d e-mailed the day before from the website.  She wanted to find out who had gotten the e-mail and she would call me back.  She never did find out who it was that it went to but she told me that there really wasn’t any way they could help me.  They just raise money and aren’t in any position to be giving me advice.  She did tell me about a place I could call.  It’s an organization called, “Utah Birth Defects Network,” that works closely with the March of Dimes. 

I didn’t know how they could help me.  I’d been doing research on-line to understand what each of my son’s birth defects were and what they looked like.  I called them anyways.  I told my story to the woman on the other end who was sympathetic to my story.  Her name was Marcia.  She was so sweet but she really didn’t have any further advice for me.  It seemed that she was as resolved to have me give up and let my son go as the doctors were.  She told me that she was in no way medically qualified to tell me any differently but she offered me the advice of requesting to be referred to a specialist which I already had been.  The doctor at the hospital who gave me the diagnosis was a parinatologist even though I didn’t realize it at the time and considered and “expert” in his field.  She told me to ask for a second opinion but she also seemed certain that the doctors I had seen were good doctors when I finally told her their names.  The last bit of advice she could offer was to make sure and ask if there was any immediate danger to me during this pregnancy.  That thought hadn’t occurred to me at this point since I really didn’t care about any one but my son.  Looking back I think at the time if I could have offered up my life in exchange for his I probably would have done it knowing that it would have saved his life.  I think most good parent’s feel that way when they find out their kids are sick.

So with that I was at a dead end.  I didn’t know what else to do but to wait for them to call me tomorrow afternoon and see what they say and ask if it would be possible to be referred to some other specialist for a second opinion. 

I spent the rest of the day trying to find the best children’s hospitals in the country and finding the ones with Air Force Bases near by.  I was sure that this situation would warrant a humanitarian assignment to some where in the country that my son could get some glimmer of hope. 

By the end of the day I had a list for my husband to give to his superiors of our son’s problems and what could cause them and what we need from them to be able to get through this.

The next morning Isaiah took that list in to them and told them everything that had happened.  They sent him home early to be with me because I had told Isaiah I really didn’t want to be alone on that day and I don’t think they believed he could work under those circumstances anyway.  He was put on the day shift after that so he would be available for the appointments I knew we would be busy with.  But they told him it was unlikely that he would get a humanitarian assignment for this.

They also sent him home with a thought for me to ponder.  Did I know if my OB doctor knew the results of Wednesday’s appointment?  Come to think of it you would think she would have called me once she found out what was going on.  Maybe no one had told her anything yet.  Well, I guess I ought to call her and tell her all of what I found out.

I pulled up her number from my papers and waited for some one to pick up.  It was one of the nurses who answered and she asked who I was when I said I’d like to know if I could speak with the doctor.  Her tone seemed to change after hearing my name.  She said, “Dr. B. has gone into surgery today and will be out all next week recovering.  What do you want?”  I was a little taken aback at her curt reply to me and at the same time a little upset that I had called at such a bad time.  I felt bad for her and I felt bad that I was calling when she just had surgery and should be recovering.

“Well, I just wanted to know if she had gotten the reports from my hospital visit on Wednesday.  There were a lot of things wrong with the baby.  Do you want to write them down to let her know?”

“She already got the reports but I can leave a message with her if you have anything else to ask.”

Honestly, that was all I had called for but I resolved to give her a message to get in touch with me, “Can you just tell her that I would like to know where to go from here?”

And with that the phone conversation was pretty much over.  I got off feeling worse than I had before.  I now felt like I needed some one to talk to and at the same time felt guilty that I was upset that Dr. B. had gone into surgery on that day.  On top of me being upset that I was carrying a baby who I was being told was doomed to die I now felt guilty that I was upset I had to wait a whole week to call her back and then I felt bad that she was in surgery and angry at myself for being so selfish.

It’s not like I can expect that every ones lives around me are just supposed to stop moving and pamper to my needs all of a sudden.  If she needs a surgery then I can’t help that.

My husband made me lie down and take a nap after that but I wouldn’t unless my phone was right next to me on the couch with a pad of paper and a pen next to it.  If it rang and I was asleep I made him promise that he would pick it up.  He was not to leave the room with out it.  Only once he promised was I able to fall asleep for a few hours that morning.

My sleep didn’t seem to last for long.  I still had to wait once I woke up.  I couldn’t concentrate on anything else.  I just sat there staring at it.  I wanted to call my Mom but I was afraid they would call so when she called me I got her off the line.  I told her I would call her once I heard back from Mr. H.  She wanted to tell me about what one of her teachers had told her.  My mind seems to escape me now as I try and remember but some one who knew one of her professors at school had a child much like mine and he not only lived but he was going to school in regular classes now.  I had earlier received a similar story from a friend of mine who works with disabled children.  She also told me that one of her “kids” was born in much the same manner and though she is in Special Ed she is alive and well.

I was hearing stories of hope that were making me want to move back home.  Even my Mother-in-law who works at a law firm was told by a co-worker that her child was born in much the same manner and not only is alive and well but also plays baseball and is physically active.  It seemed that my son was not as bad off as these doctors were saying.

It seemed my desire to just have the phone ring was fulfilled only it was my husbands’ phone.  Dang it!  His sister was calling.  She wanted to talk to me.  She was telling me about a hospital that is one of the best in the country that takes everyone no matter of their ability to pay.  Literally half way through a sentence my phone started to ring.  I cut her off and said, “I’m really sorry Andrea but I have to get my phone.”  I left her bewildered at what had just happened as I handed her to Isaiah and answered my phone.

It was Dr. B.  So, it wasn’t exactly who I was expecting but it was a start.  First I started with telling her how sorry I was that I had bothered her right after having a surgery.  She told me not to worry about it.  So then I basically told her that I wanted to do anything I could to save my son’s life.  I told her I was willing to move anywhere but that I would prefer to go to St. Louis or Chicago as that was close to home and they were both very good hospitals. 

She came back with, “They did tell you that this baby is incompatible with life, didn’t they?”

“Well, yes but I don’t want to just give up that easily.”

I then told her about the stories I’d heard about other kids living through similar situations.

She came back with, “Who told you that!”

Okay, so that wasn’t quite the response I was looking for and I told her who it was that I’d heard the stories from.

She then asked me to just wait a month for them to do another ultrasound because they couldn’t be sure yet if his heart was inside or outside of his chest and if it’s inside it makes his chances much higher.  Then she told me that if she thinks that he has any chance at life maybe she would look into seeing what kind of specialists would take me across the country.

She also said that she would check up on me and that she might even make a house call to sit down with us and go over everything with us in the comfort of our home.

I was resolved to leave it at that.  I had to wait a whole month!  I was going mad waiting a whole day for a call back and now I was being faced with the possibility of waiting a whole month.  How could I live that long?  It already felt like my whole body was tearing apart at the seams.

I wanted to walk across town and smack her cripple butt into next Tuesday.  You leave me hanging on a thread with a maybe and a promise that you’ll check on me.

I was left to again stare at the phone waiting for it to ring.  My heart was racing at the thought of what these other specialists would say.  I was told not to expect that they would have anything different to offer me but I was hoping beyond hope that they would have some good news.

Finally, when I was about to give up and thought they had forgotten me I got a call.  It was Mr. H. calling me back.  As it turns out they didn’t have time to prepare my case and ultrasound pictures to bring it with them to the conference.  My heart sank.  He told me the next conference was November 3^rd and they would bring the information then.  He wanted to check up on me and see how I was doing.  What had I decided was his next question.

I told him the same thing about wanting to do everything I could to save my son.  I don’t think that was what he expected.  He told me there may be a possibility of doing another ultrasound before they go to the next conference.  He also told me he would check up on me and he asked that if I had any questions to please call him.  I couldn’t think of anything to ask him then because my head was just spinning.  I was in a combination of shock and denial.  More importantly I was my son’s last hope and the weight of the world was on my shoulders.

I hung up suddenly realizing that I hated that man.  I hated him with the real gravity of the word and not just in the way it’s taken lightly in our society.

How could I call him back with questions?  I’d already been a bother to Dr. B. by calling at such an inopportune moment and they hadn’t even had time to take my information to the conference.  When would they have time to talk to me?  When would any one have time to talk with me?  Why did I suddenly feel like the worst kind of unwanted burden that any one could be faced with?  What had I done that was so wrong?

I suddenly felt very betrayed and alone as I hung up from that phone call.  My whole world seemed to be looking forward to November 3^rd which was 14 whole days away.  What would I do until then? 

I did the only thing I could think to do at that moment; research and lots of it.

You see from the time I was very small I had gained an odd curiosity with doing research.  I think it started when I would ride my bike through the local cemetery and see those old exquisite headstones.  I would go to the local library and look them up discovering the story of the historical figures that had founded my hometown.  There were civil war hero’s buried there and there were interesting lives of people long forgotten. 

As I grew up it flowered into a love of history and random facts.  I have a slight obsession with the History Channel, the Discovery Channel, A & E and the National Geographic Channel.  If I couldn’t watch documentaries I think I would go mad.  And when it comes to proving people wrong I will sit for hours trying to find that perfect link to prove that I am right and you suck.  Unfortunately, when you are on a forum and your responses are more than 3 paragraphs long as mine usually end up being a few pages long people will just skip them because you can’t keep their attention.  Not only that but they get annoyed at having to use their scroll button and tiring their finger. 

I took this same habit of spending hours a day reading page after page of research into my son’s diagnosis.  I would read things written by doctors and then have to use a medical dictionary to decipher most of the jargon but I didn’t care.

My computer became my new best friend.  My Mother was also doing as much research as she could.  She was ignoring her schoolwork to be able to find out information for me.

Pretty soon I had a list of questions written out to ask the next time I went in.  I began typing them down so I could revise them if needed.  Most of them were written in anger and frustration so I would often go back later and change some of the questions while omitting others.  By the time I did get in to see Mr. H again I had a list of almost 90 questions I was ready to ask.

At some point we started seriously talking about me going to St. Louis for treatment.  They have a wonderful Children’s Hospital with a 24 hour staff and they had specialists in all of my son’s problems that would be there at all hours of the day.

I was told to call them but finally it was my Mother who called them.  The person on the other end of the line told her to hold on while he got the Doctor in charge for that shift.  My Mom thought that was amazing that he took time from his busy schedule to speak with her.  The doctor was a very kind man.  His name was Dr. C.  He listened as my Mother relayed to him everything that had happened so far.

What he said made me want to cry.  He told her that even though he didn’t know if he would have any better outcomes that they did have the staff and ability to do everything they could to save my son if that is what I chose and gave her the information for who I needed to contact to be referred to the hospital.  He also added the most amazing thing I’ve ever heard.  He said to my Mother that if ever I needed some one to just talk to even if I couldn’t come to St. Louis to have her call him because he knew that right now he knows that I need support.

What a blessing!  This man has never met me.  He’s incredibly busy every day and I’m not even his patient and he wants to just be there to listen to me.  Dr. C is and will always be an angel from God in my heart.

That was all I needed to hear to know I was going to St. Louis.  Here I was being ignored and blown off and I felt like I was doing something wrong but in St. Louis there was not only help but there was hope.  I clung to that hope as if my life depended on it as I’m sure at that moment it did.  If I didn’t have that to get me through the days to come I would have snapped and gone too far into a depression that no man could have broken me from.  Everyone has told me since then that I’m stronger than I think but there is only so much that any one person can handle and that is what I needed so I didn’t give up.

I had felt up to that point like God was questioning me and I needed a savior.  Every day it seemed I had begun to see and hear the words, “Trust in God.”  I would see them on paper, on my computer on the television.  It felt like a constant reminder that I wasn’t doing something right but in this one single person I felt like I was okay.  I felt like I had an answer.

It was true that I felt like something I was doing was wrong but what was it?  What did He want from me?  Even in God’s eyes I felt like I wasn’t good enough, not that I ever would be but all the same I think I’d begun to fear him more than ever before.  I was afraid that I was turning away from God.  I didn’t know how I was but I felt that I was all the same.  I was afraid I’d done something so horrible that I’d have to spend the rest of my days crying for forgiveness.

It was on that Thursday night that I got my first taste of feeling like maybe it wasn’t me.  Isaiah and I had gone to our house church just to occupy our minds for a little while.  We wanted to do something that wasn’t thinking about our son.  It was there that we spoke with our pastor about everything that had happened so far.  We told him how we were planning on trying to go to St. Louis if it was possible.  He told us that Children’s Primary in Salt Lake is a really good children’s hospital and that I should try to be seen there before I leave. 

Looking for support on this he turned to a couple that was there who recently had taken their daughter to that hospital.  He asked them if they thought it was a good hospital and his response was angry and hurt.

The dad looked straight at me and said, “The people at that hospital let my daughter die.  They could have done more to save her but they gave up and just let her die.”

So, I’m sure that isn’t the response our pastor was looking for but for the first time I felt like it wasn’t just me.  I’m not a bad Mommy.  It really is them.  I’m not a bad person and I didn’t do anything wrong.  The rest of the night we just talked about the video and kept our son out of it.

That was how it went.  I spent that week-end trying to escape.  We went to the mall on Saturday just to get away from the world.  It didn’t work.  My little one was with me everywhere I went and though I tried to be happy for his sake as my Mother told me to be I just couldn’t.  I couldn’t find a way to smile.

Even later that night when we sat and talked for hours with our friends Steve and Marian I couldn’t help but bring up what was going on.  It was just too engrained in my mind and I had to talk to some one about everything.  So we all sat there in their living room at the end of the night praying in a circle for God to protect us and to lead the way.  I think our prayers were answered that night.

You see, that was the day that I said the silent prayer to God to please heal my son or not to make him suffer more than he had to.  I asked him that over all things His will be done.  Do I regret that now?  No, I don’t.  That doesn’t mean I don’t want my son here any less.

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.

Chapter 1

Chapter 1


“…You are fearfully and wonderfully made…
I knit you together in your mother’s womb…
You are made in my image…
Your name is written on the palm of my hand…
My love is not based on what you can do for me…
I love you for who you are…
You don’t have to strive for my approval…
My favor rests on you…
I will never leave you nor forsake you…
You are mine…
Rest in my love…”
~The Holy Bible


A crusade by definition means, “Any vigorous, aggressive movement for the defense or advancement of an idea, cause, etc.” At least that is what it means according to dictionary.com; one of my favorite sites being the dunce that I am.

The question is how does one come across their crusade? For most of us it’s an experience that happens to other people but one day you find out that you are human like everyone else and bam! You hit a brick wall that makes you grow up and lose your innocence. You realize that you will never be the same person and that you care about something that was once so mundane that you never paid attention because it didn’t affect you and never would. The truth is that we all become a statistic of some kind at some point of our lives even if it’s the way we die.

I am a statistic. I am the one of about 4 out of every 100 women that you have met in your life that has experienced infant death. It’s a cruel statistic that no one talks about.

We advertise smoking, poverty, aids, drinking, drugs but you never hear about your friends who suffer in silence every day for the rest of their lives. It’s the silent statistic.

I was lucky. There were people there for me to talk to. I was able to research and find organizations that can help me. Most people aren’t that lucky. Most people have school, careers, other children or other things that keep them occupied. Admittedly, I was in a “transition” from my military career to becoming a full time student. I was actually taking a semester off just because I could so I was spending my time doing volunteer work because that is what I wanted to do. So, when you do volunteer work you can’t be reprimanded for walking away and that is just what I did when I got the diagnosis so I could dedicate my new life to the silent crusade.

It was actually while I was on a mission’s trip in July of 2006 that I first began suspecting that I was pregnant.

Isaiah and I had been trying to get pregnant so when I started having irregular periods I did nothing about them fearing that I would be put on birth control. A year or so earlier I went in complaining that I was having painful, long, heavy flow and was told that the only option to fix it was birth control so I just ignored it choosing instead to rely on aspirin, a blood thinner, and Midol to deal with the “problem.”

So when I was late I wasn’t really thinking that this time it could be for real because that was never the case in the months leading up to my actually getting pregnant. If I had the option now of going back and being put on the pill to get rid of the excruciating pain I was going through every month I don’t know if I would have done it knowing what lied ahead. All I can say for sure is that I do not now regret nor will I ever regret being a Mother to David.

Seeing as how my last period was 3 weeks long I didn’t think much of being more than a month late. I stopped writing those little X’s on my calendar a long time ago.

So we were off to Denver to work in a homeless shelter called, “Socks Place.” Dean Livingston had opened the shelter a few years earlier while feeling that God was calling him to help the street kids in that area using the motto, “Bringing a Father’s Heart to the Fatherless.” He was so amazing that we both instantly felt that if we could have moved to Denver just to be around him and those kids every day that we would.

It was while I was working there that I realized that the flu-like symptoms I’d had the week before were not going away. Every day I felt sick to my stomach and I’d have to run off to the bathroom hoping that no one needed to go right after I got out. I was standing all day cooking and out talking to the kids and I started joking with my husband at night how badly my “butt” hurt. I would try and laugh it off by asking if he could give me a massage but in the mornings I started to notice that I had to walk bent over in pain to take the few steps to the bathroom. By the end of the week I had to take breaks to sit down even though we were so busy cooking and in the morning the pain in my butt was getting so bad that it was tingling all the way down to my toes and it took me considerable effort to get moving. It was after that I started to realize that this was more than just some bug that was going around.

I kept this thought mostly to myself only mentioning in passing to my husband of what I suspected. I don’t think it really registered with him because I hadn’t taken a test and therefore was not really pregnant. He knows I’m a worry wart the same way I know he’s sarcastic so when I say, “What if I’m pregnant,” it’s drowned out by all the other, “What if’s,” that come out of my mouth every day.

Now I’m willing to admit how I lied. No Mother wants to think that it’s something she did that could have caused the death of her child whom she loves more than anything so when I was asked if I smoked or drank during this pregnancy I said no.

The truth of the matter is that a good way to get to know these kids is through cigarettes. If you have the ability to go buy a box and bum to them it’s an easy way to start a conversation with some one whom not only lives a different lifestyle than you do but basically lives on a totally different planet than you. While I was in Denver I smoked like a chimney.

My husband and I had not had alcohol in months, which is odd if you know me. I’ll just say that I’m a more “traditional” Irish woman when it come to alcohol and also I’m Catholic, meaning I have a natural tolerance level equivalent to a six foot lumberjack unless it’s vodka on the menu but I’d been avoiding it because living in Utah most of my friends just don’t drink and because I was trying to get pregnant. But on this particular day in Denver at a popular Italian restaurant my husband remarked, “How can you not have a bottle of Lambrusco?” That happens to be the table wine we would drink all the time while stationed in Europe.

You see, Isaiah managed to sprain his ankle while attempting to jump over a flower pot the night before. Yes, I said a flower pot but that is something you will have to ask him about. He was sore and wanted to take the edge off by getting a drink. I was hesitant but knowing how it feels to be dubbed a, “lush,” I didn’t want my husband to be looked down on for suggesting alcohol around a group of people who I didn’t know what their collective opinion was.

I agreed so he wouldn’t be alone. As it turns out it was much like a Sam Adams commercial where we order alcohol so every one else thinks they need to be less like “stereotypical” protestants and jump on the peer-pressure bandwagon with us.

Oh and did I mention that me, the Loosy Goosy Catholic girl, married a good upstanding Protestant boy? I guess he wasn’t always “upstanding” but that was how I managed to find myself surrounded by wonderful Assembly of God believers on this particular Mission’s Trip. Hey, if you have a problem with it you can take it up with God because that is who he assigned me to marry and I think we both love the traditions that each of us hold. It works for us so I don’t see a problem with it. It’s funny looking back though. At one point in my young life I was so sure I was going to grow up and be a nun. Somewhere along the line that changed. I rebelled and now I found myself totally dedicated to a life for God but almost completely separated from my roots in Catholicism. It doesn’t matter what dogma I follow because there will always be some one who doesn’t like it.

So that night I had a normal size glass of wine which if you ever drink wine in a nice restaurant you will find that 90% of the glass is empty for some reason. I know it sounds bad but to me it’s all going to end up in the same place so why keep refilling it? Who do you know that honestly drinks alcohol because they enjoy the taste? This was the one time in my life I was glad it was only table wine. I sipped it like I’d never sipped in my life. Some how I managed to make that glass take me all dinner so Isaiah wouldn’t give me a refill.

Think of how I felt later when I realized that I made that fatal choice to have a glass of wine. I read one Mom’s encounter of guilt as she realized her child was sick to analyze all the things she could have done better or not have done at all and if she had a normal baby like her other pregnancies she never would have thought twice to have any guilt at all over those things she did “wrong”. That really put into perspective not only what we do every day that can effect us forever but also how much something that seems small like this can affect you, at least in an emotional way, for years to come if not for the rest of your life. Being Christian I’ve even had fleeting thoughts of an eternity in Hell as punishment for murder even though I’ve asked forgiveness and am truly sorry. This is the way of grief, to make you feel like the leftovers from last week stinking up the trash.

As soon as I got home at the end of the week I took a pregnancy test.

“Was that a positive?” The second line was so light that I thought I was checking at the wrong time of the month or maybe it was really a negative. So we went and bought a box of 3 more tests. I tried them over the course of the week first thing in the morning and I was still confused. They didn’t say anywhere on the instructions that the line would be so light you might think it could be a trick of the light or your yearning to be a Mom that could just make the line appear when it’s not really there.

“Fine,” I thought as I took the car to the clinic on base. You can walk in to get a pregnancy test so I thought I would just get this done and be able to know for sure in a few hours. The ladies behind the counter took my ID that stated right on it, “TA 180.” In military terms that means that I’m officially a civilian but I have 180 days of full Tricare coverage before I officially become a, “dependant,” of my husband Isaiah.

They typed in my social security number and it pulled up nothing.

“We’re sorry but it according to this you have no coverage.”

“What!” I thought. “How can I just not have coverage? My ID says right there that I’m covered.”

“We can’t get any lab tests done on you until you get this fixed with Tricare. I’m sorry.”

So that started a turn of events that took me hours to get fixed before I could even get the blood test I needed to just see if I was pregnant. It seemed like I was going from office to office all morning. I was supposed to be doing administrative work at the church and obviously I wasn’t showing up so I called my pastor and told him I was at the hospital. That, of course, sent him into help mode instantly asking me if I was okay and if I needed anything. What should I say, “No, I just think I’m pregnant and can’t get my insurance to let me get a test done.” That would only make him worry more so I just told him I needed lab work and there were issues I was trying to work out with my insurance so I wouldn’t be able to come in today.

Finally, I got the lab work done. I was supposed to go and talk to the doctor but since walk-in hours were now over I had to wait until even later in the afternoon to come back in to see her. Of course, I thought that would be great because she could tell me while I was there if it was negative or positive.

That afternoon rolls around and I’m biting my nails to find out if this is it or just a scare and she doesn’t know. Grrrrrrrr!!!!! She asked me some questions like if this is a wanted and expected pregnancy and such. I told her that we’d been trying for almost a year if you took out the months we stopped trying for my deployment. The last thing I’d wanted was to be dubbed one of those women who got pregnant just so she doesn’t have to deploy. Yes, even though I volunteered to jump on the plane people would still assume I was a “Dirt Bag Airmen” as we so affectionately call them.

She told me that having the test done so late in the day she might not have the test results for me until Monday.

Monday! I was going nuts as it was and not being able to smoke or drink to calm my nerves probably would have sent me into a panic.

But at almost exactly 4 on Friday, August 4th I got a happy phone call. I was, in fact, about to start my journey to Motherhood. First I told Isaiah and then we proceeded to tell every one about the happy news. I wanted to let my Mom know first but this was the one time that I call when she is not home. I was so frustrated. I finally called her cell phone after listening to the answering machine 5 times or more. My family was at the grocery store and more specifically they were at the check out when I called.

I broke the news in front of all the other customers, my Dad, my smallest brother and sister and the check out clerk. My Mom burst out crying tears of joy at the news that she was about to become a Grandma.

And with me being so excited the whole family knew by the next day what the happy news was. I was getting calls from relatives I hadn’t talked to since Easter and happily chatting away about how wonderfully crappy I felt and what foods I’d been craving and all of the innocent topics of a pregnancy. I remember breaking the news gently to my grandmother by saying, “Well, I’ll just say that my Mom is going to be a grandma,” so I didn’t have to say, “Guess what you are getting old because you are about to be a great-grandma!” I love my grandma so much and I didn’t want to give her a heart attack before she could see my new little baby.

So that was that. I was a happy pregnant lady. I was constantly sick and I don’t think I’d ever wanted apples and oranges so much in my life. If it was midnight and I needed fresh squeezed orange juice or apple cider we “had” to make trips to the only store open at that time of night, Wal Mart.

Things went relatively well aside from a small fender bender I managed to get into on August 8th, only days after finding out I was pregnant, that cost me almost a $300 fine. I was in a more ornery mood every day than was normal for me and bless my husband for dealing with that but things were mostly text book. I was having such horrible back pain all the time. I talked with my Mother about it one day and realized that not all women have this so early in the pregnancy. When I talked with the doctor about it she told me not to worry. The baby was just pinching a nerve and I couldn’t do anything about it other than gripe and moan.

Isaiah was working the night shift in his new shop and he would have bad days only to come home to me yelling not to him but at him about how horrible those people he works with are. That was the biggest drama I had in my life; my worry over my husband and my anger that was now beginning to be directed at the Air Force.

Then with much excitement my four month appointment was getting nearer and nearer. I was telling everyone we weren’t going to find out what the baby was but keep it a surprise. The closer I got the more excited I got to start buying cloths.

I remember walking down the isles in the local department stores and seeing something in pink that I would think was just too adorable. Something was telling me blue and I some how knew it was a boy. Let’s just call it a hunch but it was a hunch that my Mother also shared so who knows if it was more than that.

There was another feeling looming deep inside of me that I now have to wonder about. Something was telling me that it was not my time yet to raise a child. The word, “miscarriage,” would from time to time play with my mind the same way that the word, “boy,” would play with me. Any time I got that feeling in my gut I would push it away while I welcomed any other feelings I had about wanting so much to be a mother.