The fear of the unknown.

Suddenly, I was very nervous.  I wanted to laugh at myself but my gut instinct told me to listen. I had never needed any medical tests before.  I was extremely healthy.  This ultrasound was my first ever.  As was this pregnancy. 

The room was small and dimly lit.  The high tech machines hummed away.  I was shy about exposing my bare abdomen to a stranger.  The poker faced technician didn’t help.  My bladder was full and uncomfortable and I was determined not to complain about it. 

Sixteen weeks into my pregnancy and the fear I had been trying to control was taking over. My sister’s child was born with several different genetic conditions.  Her baby was terminally ill.  B was now five months old.  The results of the genetic testing were still to come.  As genetics go, it was possible for my baby to look like my sister and be as medically fragile as B. 

I was struggling, trying to wear my ‘everything is fine’ face while my heart and brain screamed on the inside.  Four months of worry and fear. 

I kept this all to myself.  I did not talk to Mike about my fears.  I believed verbalizing my worst fears could possibly make them come true.  I knew if I shared my feelings with Mike I would never be able to play optimistic again.  It was silly and incredibly selfish of me to deny Mike access to my heart.  He was just as worried but did not want to upset me.  He took my lead and also stayed quiet.  We needed each other more than ever yet we denied each other because of that very same need.

The ultrasound took too long although I had nothing to compare it to.  I just knew.  The technician never spoke the entire time.  I attempted to engage her but her non verbal responses taught me to be quiet.  Her wand kept returning to the same place over and over.  When she saw me trying to view the screen she moved it away from me.  My anxiety grew with every new squirt of cold lubrication. 

Finally, she asked if I wanted to see. There was a black and white image of a large headed baby.  No different than any of my sister’s ultrasound photos of B.  Except, this photo made me tear up.  The technician pointed out my baby’s spine, heartbeat, head, legs and feet and one arm and hand.  She instructed me to go get changed. 

One arm and one hand.

One arm and one hand.

One arm and one hand. 

I changed quickly.  I needed to get out of that office.  I walked past the room on the way to the exit.  I heard the technician call my name.  I stepped back to see her, still at the machine. 

“Yes.”

“Have you taken any drugs since you became pregnant?”

She wasn’t even looking at me when she spoke.  Odd, because it seemed to me she was yelling and hitting me at the same time. 

“No. Why?”

“No reason.  I will send the report to your Doctor.  He will discuss it with you.”

One arm and one hand.  Take any drugs?  One arm and one hand.  Take any drugs?

My fears were coming true but not the way I had imagined.  I needed more information and I needed it quickly.  I made an appointment for the next day with my Doctor. 

My Doctor has known me since I was two years old.  In fact, my entire family is doctored by this man.  He knows everything about all of us.  I was sitting on the examination table when he entered the room.  I was already teary eyed.  His body language prepared me for bad news.

He explained the technician was unable to see one of my baby’s arms.  My head was down, I could not look at him.  I was trying so hard not to cry sob.  He was speaking quickly; he would touch my arm now and then as he spoke.  He was saying it could just be the positioning of the baby and other reasons.  But, we both knew, there was no arm to see.  He wanted to do a second ultrasound in six weeks.  I agreed submissively.  I wanted to do it then. 

I told Mike what the Dr. had said heavily emphasizing the positioning and other reasons.  Somehow I found my fake face and used it well.  For six weeks I faked every minute I wasn’t alone.  Alone, I cried uncontrollably, I screamed into pillows and stared at my reflection in the mirror with terror.  The unknown was torture.  The truth was pain. 

May 1992, at six months gestation, my Dr. told us our child would be born missing part of her forearm and her hand.  There was also a question of a heart disorder. 

There it was.  The fear had been verbalized.  The worry had come to life.  The pain was enormous for us both. 

Finally, Mike and I were able to be completely honest with one another.  An emotional explosion erupted from us and between us.  We had so many questions and no answers.  We promised to never withhold our feelings from one another again.  We knew we needed one another.  There was no protecting ourselves from the truth.  We needed to deal with the truth together.  The absolute worst was that we had no control from that moment on and neither did our child. 

The next three months became a medical mania for us.  We were referred to a city hospital, to be cared for by high risk obstetricians and neo natal pediatricians.  Every appointment was someone new.  Each specialist had a different opinion and diagnosis.  These appointments ended with Mike and I embraced in tears as we drove home. 

We took control.  We spent my last trimester with the promise to give up on the specialists’ guesses.    We were told the baby’s heart was healthy.  We knew there was some amputation.  We agreed to accept the unknown until the birth.  Then we would do whatever we needed to do for our child. 

Our love for each other deepened and matured that summer.  We grew up together.  We were each other’s everything.  We excluded ourselves from friends and stuck close to family.  We could deal with each other’s pain only – that took all of our energy.  We feared feeding on anyone else’s sympathy and compassion and we were not ready to hear any positive rational, ‘I knew someone who...’ just yet. 

We had three months to mentally and emotionally prepare for our child’s arrival.  Those ninety days were a gift.  We were able to selfishly mourn our child’s missing limb.  We were able to pity the baby and ourselves, without judgement from others.  We were completely self absorbed in our disappointment, anger, sadness and fear. 

Mike and I held each other together.  We took turns in strength and weakness. Typically, we found humour some days.  Often, we would catch one or the other trying to do something one handed.  We were preparing ourselves. 

August 1993, our baby was born.  The cry, the pleased mumbling from the surgical team, the announcement, “it’s a girl”, “You have a healthy girl!”  Time lapse began.  Slow motion took over.  Perhaps it was the drugs...

A.J. was 9lbs 5oz, with a full head of dark hair.   She was screaming!  She was beautiful. 

Mike got to hold her first.  He cried as he kissed his new baby girl.  I can still recall the feeling of her skin when Mike brought her to my lips for that first kiss. 

A.J.’s health was our biggest concern.  Seeing her so obviously healthy brought forth a euphoria I have never felt before.  We were elated.  We loved her. 

A.J. was born missing two thirds of her right arm.  Her elbow was fused keeping her arm straight.  She had a partial palm and one digit.  We were ready to support our baby in whatever way she needed.  We had purged all of our pain before she was born.  We were prepared to teach her to be strong and positive about her amputation. 

Little did we know, how much she would teach us in the years to follow.  Our fears and tears were proven to be unneeded as we watched her grow into a beautiful, intelligent and capable young woman. 

 

 

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