The Value of Life – Part I

I’ve sat down so many times to write this story over the years.  Each time I felt a little closer to being at peace but not quite ready to let it all go.  So here it goes…another attempt to be at peace…

It didn’t take almost losing my life for me to understand the value of life.  Rather it was trying to create a happy healthy life that taught me.  Lately while looking at my beautiful baby boy, I am struck by the thought of what almost wasn’t.  There is this incredible feeling of guilt that weighs on my heart thinking that the thought of terminating him once crossed my mind.  It wasn’t a light consideration either when faced with a strong possibility of a severely sick child.


At times I thought I was a coward.  When my amniocentesis results came in with a possible deletion on chromosome 4, I collapsed on the floor.  My heart was racing so loud, I could hear it as if it was being blasted through a set of speakers.  As I googled as quick as I could type, scanning and reading as rapid as they were appearing on screen, I started to hyperventilate and then came the sobs.  The uncontrollable sobs where I couldn’t even catch my breath and everything started spinning around me.  Severe mental retardation… heart defects… atrophy… club foot… cleft palate…  It took me over 20 minutes to compose myself enough to pick up the phone and call my husband who was at work.  Those 20 minutes I sat feeling completely alone in the world.  I could barely speak.  Amnio… bad… deletion…4… defects… retardation… physical abnormalities… come home… please… help me… and then I hung up the phone and collapsed on the floor again with the tears coming so fast… I wanted to die… I never wanted to die so badly in my life.  I didn’t want to feel this pain ever again and here I was… all over again… Every emotion that I had shoved way back in my head of Emma’s death was rushing back and fast.


I remembered sitting in doctor’s office, the concerned look on his face as he stared at the sonogram.  The calmness and positiveness he tried to maintain when explaining his concerns and sending us for additional testing.  I was hanging onto every possible positive thing he said.  The odds were suppose to be in our favor.  I was not a high risk candidate.  I pish poshed his concerns and took the tests… simply to humor the doctor.  I sat in the hospital almost defiant that I wasn’t going to be a statistic.

As more and more doctors came in and out, watching their silent but all too loud glances at one another, the knowing nods, the whispering… I started to cry.  They didn’t even have to say anything and I knew something was wrong, very wrong.  I dressed and followed the doctor’s into their consultation room with tears rolling down my eyes and my husband trying to comfort me even though he had no idea what was to come.  He kept telling me to hear what the doctor’s had to say and not jump to conclusions but I just knew.

As the doctor’s talked, I stared at them.  I was wishing they’d all go away.  I was wishing they would disappear and this was all a bad dream.  I tried to remain calm and focused.  I asked as many questions as I forgot their answers.  I only heard what I wanted to hear.  I heard only the possibilities and never the buts… My husband heard all the buts and they were big buts.  He being the more rational one of the two, heard the doctor’s and in his most logical, reasonable manner agreed with the doctor’s that I should terminate the pregnancy right away.

I remember wanting to scream but nothing was coming out of my mouth.  All I could do was sob.  I told everyone to go away.  I even wanted my husband to go away.  I declared no one was going to take my baby from me.  I remember them trying to rationalize with me that this was the best thing to do.  It would be over and I could move on.  I could start the healing process sooner.  I was completely outraged.  Bombs and Missiles were going off in my head.  It would be over and I could move on!!!  How dare they!  My husband became the enemy even if he didn’t know it.  I hated him.  I loathed him.  He and the doctor’s wanted to take my child from me.  I became the protector.  She was in my body, it was my body and no one was going to tell me what to do.  She was MY baby, not theirs.  The had no faith, but I believed in her.  My husband begged me to listen, told me he couldn’t see me like this, that he needed to see me happy again.  He wanted me to smile again.  We could have more babies, other babies.  She wasn’t going to make it.  She was going to die.  Her dying now would be the same as her dying in my arms, but he hoped this way would be less painful.  He begged me not to torture myself and let the healing process begin.  End it now and we could start all over again.

I became numb.  They doctors talked mostly to my husband as I sat in silent protest.  I heard them make appointments with genetics, schedule the surgery, recommend a therapist.  I just sat there expressionless.  A part of me, the ration me was lurking there and knew they were right but I didn’t want to stop fighting for her… and for me.  I needed to make her known.  I could feel and hear others thinking that because she wasn’t born yet, she wasn’t real. It made me want to scream, “she exists!!!”  I enlisted a friend who helped me document the last few hours of her life.  I struggled to hold onto anything I could.  I tried my best to be strong.  I tried to come to terms with her inevitable death while going back and forth in my head on whether or not we were making the right decision.  A part of me knew they were right, yet I felt they were so wrong too.  I knew some people felt she wasn’t a real person yet, being unable to sustain life outside of the womb, and that angered me.  That her life wasn’t one to consider unless she was born and able to breath.  I made myself a promise that her death would be dealt with dignity.  I arranged for her cremation and searched earnestly for the perfect urn for her tiny remains.  I finally settled on a bronze and mother of pearl urn that fit in the palm of my hand.  She wasn’t to be forgotten, I would make sure of it.

The day of the surgery I only cried.  The only request I had from the surgeon was one last sonogram picture.  When it was over, I held onto that picture of her.  She looked so peaceful, I’d like to imagine sleeping and unaware of what had happened to her.   I felt completely alone.  No one understood my pain.   I spent countless hours in the middle of the night when I was sure my husband was sleeping, crying my eyes out.  Hiding out in extra long showers where I could let the tears flow without the looks of pity from my family and friends.  I spent a lot of time trying to figure out what went wrong.  I blamed myself.  She was in my body and I didn’t take good care enough of myself to keep her safe.  They said it was a fluke, somehow during the chromosome separation, 18 didn’t split.  I even convinced myself everyone was blaming me too.  Was it when I missed a prenatal vitamin dosage?  Was it using all those chemicals on my skin that I now know are toxic?  Was it BPA related?  I wanted so desperately to have answers that I would never get.

There are still days I question if we made the right decision.  No matter how sure the doctor’s were of her inevitable fate, I still lived in the what ifs.  I sometimes torture myself and visit online support boards, ignoring the pain the families were going through with the birth of a Trisomy-18 child and instead feel a little jealous that they got to meet their baby.  There are still days I wake up in the middle of the night crying for her.  Despite having my two precious babies, she’s the life I will never forget.


It took  over a year before I had finally accepted I would never truly heal after my daughter Emma’s death but that I could pick up the pieces and move on… In the weeks following Emma’s death I channeled my grief into a goal to get pregnant again as soon as possible.  I knew nothing would replace Emma in my heart, her remains sat in the urn right by my bed.  Sometimes I carried her with me in secret.  I wanted so desperately to have a do over.  To move on, start over again like they all promised me.

So while my husband assumed I was simply reconnecting with him, I just wanted to be pregnant again.  Despite my husband’s insistence that I wasn’t ready and it was too soon, I didn’t care.  I couldn’t win.  I hid my grief from everyone because it seemed like that’s what they wanted from me — to be over it.  Then they would tell me that I wasn’t grieving enough or the way they wanted me to.  I went to therapy every week in a show that I could take care of myself.  I was fixing ME.

A few months later I did finally conceive.  Instead of the expected joy that everyone feels with a new pregnancy, mine was replaced with fear.  I remember my doctor saying to me at my first prenatal appointment that this was the one that was going to be perfect.  God knows I deserved it after I lost Emma to Trisomy-18.  I held onto his words so tightly and prayed every night for a healthy baby.  I felt like I held my breath the entire pregnancy.  Despite each appointment with its bright, cheery and happy outlook, I still frowned and waiting for the ball to drop.  When I was diagnosed with Pubic Symphysis Separation early on in my pregnancy, I thought it was just the beginning of many more problems to come.  It became a challenge for the doctor and his staff to see a smile on my face.  From the moment Ava was born, she was a blessing and the doctor was right.  She was perfection, a precocious, funny little girl who steals everyone’s heart.  Since the day she was born she became the light of our world.  I finally felt like all was right with the world again.  I had my baby, the littlest love of my life and she was perfect.

to be continued