Part II : Marcus’ Story

Continued from Part I

I couldn’t believe the thoughts running through my head.  I couldn’t believe that once I cursed God for Emma’s condition and now I was infinitely grateful for such a clear cut diagnosis.

My sister said to me at one point that God only gives you as much as you can handle and I remember staring at her in disbelief.  Well actually I was probably more pissed than anything.  I think I rolled my eyes when she said that and even wanted to hit her.  I could not believe that God would want me to go through this again.  What kind of God would grant me the gift of life, only to take it away again shortly after.  What kind of God would do something like repeatedly to one person thinking that she could bare this yet again.   I found it hard to believe in a God so cruel.  If there was ever one thing in my life I wanted and knew I was meant to be… it was that I was to be a mother.

Here I was again, being forced to make a choice — live or die, die or live.  I started hyperventilating again, something I hadn’t done since Emma.  The cowardice side of me wanted to go right in and end this pregnancy now.  I wanted it to go away, pretend this wasn’t happening to me.  I wanted a do over.  I didn’t want to feel the pain.  I felt out of control.  One part of me wanted to run into the kitchen and start smashing every dish in the house, another part of me wanted to end my life right then and there.  All that kept running through my head was that I can’t do this again, I can’t do this again, I don’t have the strength, I can’t , I can’t, I can’t.  I wanted someone to help me and yet I knew no one could.  I felt so desperate and in deep despair.  I told my closest friends, hoping for some peace, encouragement or something to hold onto — not their fault, but none came.  I whispered help me and no one could hear me.

Then the survival side of me kicked in and I thought to myself, someone has to help me.  I went professional — I called my therapist who I hadn’t spoken to since I mentally resolved I had talked enough about Emma and it was time to move on.  All the things I thought I could change with Emma came rushing back to me.  I needed to take control this time.  I needed to know what was happening, to make more informed decisions.  I needed to be the rational one.  I couldn’t crawl into a hole and cry.  I needed to be strong.  I had Ava to think about.  RATIONAL, RATIONAL, RATIONAL.  All the while I was thinking this, my mind and body was doing the complete opposite.  I showed my family that I was taking care of myself.  I did all my own research, I asked tons of questions, I never cried in front of them.  I was the picture of rational.  But when no one was looking, I played my pain to music.  I would sit in the bathroom, water running with my iPod on.  I allowed myself to cry through ONE song, a few minutes that I allowed the pain to seep in.

I set up my first therapy appointment and even went there alone.  I came back and boasted that it helped… when in reality I couldn’t even bring myself to talk during the session.  She was patient.  I refused to talk and stated so.  I was so angry I didn’t know what to say.  I didn’t want to feel my feelings, I wanted it all to go away.  So she asked questions and I kept my answers brief and succinct.  I knew it was like pulling teeth.  I just couldn’t think of anything to say that I haven’t said already.  That was IT… I’ve done this ALREADY!  I was in sheer disbelief that this was happening AGAIN.  Again was all I could focus on.  These feelings were the same I had the last time and I was sooooo over feeling them.  Instead they were replaced with anger.  I still cried my tears in private when I allowed myself to absorb the events of each doctor’s visit, each consultation, each test — but mostly it was anger I felt.

I needed someone to blame and while I beat myself up mentally, I lashed out at the doctor’s, the nurses, the geneticists — still in quiet silence.  While I smiled and bit my tongue every time they made a mistake, lost our test results, said there was delays or additional testing needed, I went home, critiqued them to an unholy standard and cursed their existence.  My therapist said it was okay for me to be angry.  After all they did lose my drawn blood for a genetics test resulting in another day of waiting in the lab for a blood draw.  They did come back and tell us that they made a mistake with the chromosome deletion  — it was not Chromosome 4, it was actually 16.  They did say they knew nothing about 4 and even less about 16.  They did say the results would take 3 days when it really took 8 days.  They did say repeatedly that they did not know what significance this deletion meant.  The choice was ours… live or die, LIVE or DIE.

As I grasped for straws and went for second, third and fourth opinions, a true friend emerged.  It was this doctor, a prominent endocrinologist at Cornell Medical Center, that got angry for us.  Enough was enough.  No more testing unless they could give us real definitive answers and they could not give us any.  We had to choose to enjoy this pregnancy or… end it and move forward.  He erred on the enjoying side of things and I was inspired.  He gave me the hope I needed to pick myself off the floor.  It seemed all so clear all of a sudden.  This was my son, my baby and no one could tell me what was wrong with him.  The sonograms looked perfect.  Every anatomical exam and EKG test showed him to be in picture perfect health.  These were the only definitive things they could give me and I was going to hold onto every last beautiful perfect image until they showed me something to worry about.  I did subject myself to bi-monthly sonograms but looked forward to them as another photo for the scrap book.  If they didn’t take any during the exam, I made sure to vocalize and get one.  I let them measure and look to their hearts content while I went home and stared at his beautiful pictures with my husband.  I ignored the little big here, little small here remarks and just loved him.

When my pelvis split again, I just laughed.  If this was the worst that could happen to me, I was fine with it.  At one point my OB said to me, you’re doing so much better with this split than the last.  I turned to him and said, don’t get me wrong, the pain is far worse, but I can handle it if it means a happy healthy baby.  I have to survive, HE has to survive, this was our choice.  If this was the burden I had to bare to ensure so, than so be it.  Not to mention, I’ve done this whole pelvis split thing before, I knew what to expect, how much pain I could take, what my limitations would be.  I was more prepared for this than anything else.

I won’t say Marcus’ birth was easy.  I went through a month of pre-term labor before the doctor felt it was time for Marcus’ to grace us with his appearance.  He said it was clear the little man wanted to get out.  Mixed with fear and excitement at him arriving a month early, I found out the reason for my pre-term labor was a window in my uterus — the scar tissue from my previous c-section didn’t heal properly causing a potential for uterine wall rupture.  My pre-term contractions were attributed to pressure in this area causing a bubble that looked like it was inflating and deflating over and over again.  Aside from that, his arrival was perfection.  He arrived and we were bursting with love at his perfection.  He did have a sacral pit and tons of mongolian marks that made him look like a beaten infant but otherwise, he was perfection.

Some people might think it strange that Emma’s ashes sits above Marcus’ bassinet.  I think its fitting.  A representation of her as an angel looking down over him.  I’d like to think that Marcus’ is drawing strength from her.