Monday, July 9, 2012


They told us repeatedly that we would have the results by the end of the day today.  They never came.

Moments before "close of business," I'm distracting Olivia on the Merry-go-round at Playland and see Michael bolt for a quiet place to talk on the phone.  A call had finally come in.  After repeated messages and conversations.  Each time we revolved around I tried my best to read his body language.  Nodding.  Slumped shoulders.  No expression.  The music just rang in my ears as I became convinced it was bad news.  I covered the ground between the horsies and him in seconds.

"No news." He went onto explain that the lab just didn't have the results.  We should never have been told (by three separate counselors) that we should expect results today.  "So sorry, but there's nothing more we know."  I was enraged.  How cruel, to drag us along in expectation and only offer a shred of information when results didn't come.  I cried a hard, ugly cry in the middle of the street behind a public bathroom, not caring who saw me or who wondered what would make me act like that.

I was angry at Michael.  For being so nice to the counselor.  For not demanding more information.  Essentially for not being me and doing what I would have done if I answered the phone.  In retrospect, I was too hard on him, but I felt betrayed.  I was hurting and he should have hollered at the person who hurt me, he should have argued until he got an answer.  There's no room for nice guy in medicine.  But it's the nice guy in him that I love, which makes my reaction unfair.

I called the counselor back while standing in the street.  Explained to her that this just wasn't good enough.  We deserved answers.  We had done everything they told us to do. They owed us the respect of a clear reason why.

Long walk home, streaked with tears and moved forward with completely numbed legs.  All I could think about was why were we being punished?  Why does it have to be worse?  Isn't it bad enough that he's sick?  Why do we need to go through this to learn if he's really, really sick?  Tired, beaten anger followed me home and fueled a small handful of further conversations with counselors.  Self righteous tears streamed down my face as I negotiated with a counselor to actually call someone in the lab -- a person, a real human being -- and find out if the test had been run and when.  I was done with hearing about the guidelines and wanted to know what the hell was happening.

Turns out we weren't going to get a result today after all.  The first slide on which they performed the FISH microarray test yielded results, but not enough to reach the threshold of that would lead to a conclusive "result."  No mention of if they saw deletions or not...I had no energy to ask.  They had to run another slide through the same process.  "The lab is hopeful to have an answer in 3 more days."

And this was the first moment I truly felt defeated.  I bargained with myself all week.  Just make it through the weekend.  Make it to day 7 and you can finally know.  Keep your chin up, be sociable when friends visit, find other topics to talk about, pretend that this isn't on your mind constantly...just get through.  And then you'll know.

Or not.

I'm afraid.  I'm fearful of how this might change his life.  How it would change all of our lives.  And yet I can't go there yet, not until I know whether he is 22q.  I can't grieve the loss of a chromosomally "normal" child unless I know that child was never meant to be.  I just simply don't have the energy.  All of our trials during this pregnancy have taken their toll.  A hard IVF.  A slow beta.  A grossly enlarged yolk sac.  Waiting for impending miscarriage every week.  Waiting to have a CVS.  Waiting for the results.  Abnormalities on the anatomy scan.  And that dreaded day I sat in the conference room with three kind people who told me my life was going to be remarkably different than I ever thought.

And now we wait again.  Three more days of vacation spent on the edge of an emotional knife.  Thank goodness for Olivia.  Without her, I doubt I would have held it together this long.  She helps her Mamma be a tough cookie.  And I love her so.

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