almost perfect

“Body cells replace themselves every month. Even at this very moment. Most everything you think you know about me is nothing more than memories.” - Haruki Murakami

 

I remember sautéing garlic after the gender reveal ultrasound.  I was making dinner.  Just like every other night.  But this night would prove to be different.  It was the night of the phone call when I heard the words "we think something is wrong."

I remember grabbing a pad of paper so that I could take notes as I listened to the doctor talking.  I asked him to spell some of the words for me.  Because he was speaking a different language and expecting me to understand.
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He said, "We think that something is wrong."  I remember smelling the garlic burning.  

After the phone call,  I remember being so angry, because we had already shared the news of "a healthy girl" [hooray a girl!!!] with our friends and family, and now we had to recant that information, because now there was something wrong.   Not even thinking past that anger to the fact that we just got some really bad news.  Just being pissed & detached in that floaty dissociative place that feels like you are watching your own life pass before your eyes.  

We had to wait until Monday to have another ultrasound.  It was - in our then present time - our first excruciating wait.  We didn't know then, how normal waiting would come to be.  

Monday gave us more information but fewer answers. They said,  "It's this...which could also mean X, Y, Z, but it may not mean XYZ."  They said, "We will just have to wait until she is born to really get a handle on what's happening." And, "she will most likely need one surgery and then her life will go on."  Next I was labeled a high risk pregnancy, which would mean more observation and monitoring than I wanted and a planned C-Section.    I tried to charm my way out of a planned C-Section, but that didn't work.  I began to understand the levity of the situation when they OB mentioned the fact that she would most likely die if I tried to deliver vaginally.  

The weeks went on and my fear and questions grew in proportion to my growing belly.  Why did this happen?  I did everything right.  I didn't drink, smoke or do drugs while we were trying to conceive.  My first pregnancy and childbirth had been normal and that's what we expected this second time as well.  What would happen to her?  Why aren't doctors giving us answers?  Can we avoid surgery?   Do I really have to listen to these people?  I was faced with some significant feelings of loss of control.

For the first time in my entire life, I started going to therapy while I was pregnant.   It was one of the best decisions I've ever made, and one of the first times as an adult, that I reached out for help.  Because at the time,  I believed that I was not someone who needed support.  I believed that I was above asking for help.  I believed that I would be perceived as weak if I asked for help.  During therapy, we spent lots of time working through my anxiety, talking about coping skills & stress reduction and brainstorming options about what would happen after she was born.  

Each week at the high risk pregnancy office, her bump grew and was measured while she was inside of me.  They documented millimeters and centimeters of growth.  The recorded minutiae.  I kept asking how big will these bumps be when she was born?  I wanted answers, but no one would tell me.  I remember saying "show me with your hands how big this mass will be", but I never got an answer.  I had an amniocentesis, recommended by the genetic counselor, and that told us that she didn't have a specific genetic syndrome associated with her mass.  But it didn't give us any more information beyond that.

Her planned birthday was August 14th, but she came early, as she's been doing things on her own terms since 2002.  On August 6th, my blood pressure was high and my OB decided that it was time for her to be born.  So Marc drove home and grabbed a bag and arranged care for our young son.  He met me back in the hospital a few hours later.  And she was born in the afternoon of August 6th.  

There were tears and laughing and happiness and worry because our sweet little girl was here, in the world, and was born with some unexpected medical challenges.  But she was here and with us and was alive and had an amazing squeal.  She had her first MRI on her second day of life.  At that time, we had no idea how normal MRI's would become for her.

Before we were discharged for home, she was evaluated by the hospital pediatrician.  After he poked and prodded and inspected, his parting words to us were "she's almost perfect, if it weren't for that mass."  I remember smiling uncomfortably, frozen and heartbroken at his words.  

At the time in my post-partum, newly medically involved mom life, I had no words to respond to the sting of his comment.

But I have so many words about this now.