Tuesday, January 3, 2012

Test Results.

When I was little, I hated having my hair brushed.   My hair was prone to knots and tangles, and like most kids, getting my hair brushed was not high on my list of childhood priorities. Like most mothers, mine wouldn't let me out of the house until the knots were removed and the tangles smoothed.  I'd fuss. I'd fidget.  I'd wiggle.  I'd complain.  No matter how slow or how gentle she went, I'd cry that she was brushing too hard and that I was sure she was pulling chunks of hair out with each pass of the brush. I remember the hairbrush she'd use.  She'd bought it from her cousin, an Avon lady.  It was seafoam green with daisies and it had white nylon bristles.

One day when I was five, we were standing in my room in front of the mirror and she attempted to de-knot my hair.  As part of the daily ritual, I  fussed and complained.  Trying to avoid my mother's brush strokes, I twisted and turned and squirmed.  Finally, my mother had enough.  She moved to swat my backside with the brush, but in one quick movement, I had attempted to protect my butt with my hand.  Unintentionally, the brush came down on the bony part of my wrist. A red mark instantly appeared.

I howled.  Not because of pain, but in response to my mother.  I can still recall the look on her face.  Fear.  Regret.  Guilt.  She cried.  She apologized repeatedly.  The hit on the wrist didn't scare me.  Her intense reaction did.  (I think I got the Dorothy Hamill haircut shortly after that, thus ending the ongoing hair battle.)

I was confused by her reaction.  I didn't understand it.  I was fine. Why was she so upset?  I wasn't able to fully understand, fully appreciate her reaction until I became a mother myself.

Now I understand.  As a mother, my first and foremost responsibility is to protect my children from all harm.  It is done without question, without thought.  It is biological instinct.

I started writing this blog as a way to take my mind off waiting for the latest results of M's genetic tests.  I am downright lousy at waiting.  I am impatient by nature.  Writing gave me an outlet, a way to organize my  thoughts and pass the time.  The blog was born.

M was brought back to genetics at the recommendation of his neurologist.  His latest neurology report read:  "Subtle functional deterioration."  The words he spoke to me, "I'd like you to take M back to genetics.  We need to rule out diseases causing degeneration of the cerebellum."

And back to genetics we went.  Blood was drawn and the eight week waiting period for results began.

The geneticist named two syndromes he was going to test for.  The first syndrome wasn't all that bad.

The second made my blood run cold.  Not because it was degenerative (it isn't.).  Not because it was the worst possible scenario for M (it wasn't.)...it was because of what the geneticist said:  "It is the most common cause of inherited mental retardation and is passed through maternal pedigree."

Simply put:  If M had this syndrome, it wasn't because of some random coming together of Mr. A's genes and mine.  It wasn't a random faulty chromosome.

If M had this syndrome, the only cause, was me. Let that marinate a bit.

It would be my fault alone.  My child's intellectual disability, the medical issues, his uncertain future:  All because of me.

And worse still, the chances would be good that Miss J would also carry the defective gene, inherited from me.  Though she was unaffected, she could pass this syndrome on to her children.

I feared that I had screwed them both.  I feared that Mr. A would look at M and would feel hatred for me.  I feared what my in-laws might say about my inability to produce a perfect grandson.   Would Miss J hate me for ruining her chances at having a healthy biological child, if that was what she wanted later in life?

I had no test results yet the guilt was overwhelming.  So was the sadness.  The grief.  The ache.  The numbing pain.

I kept thinking back to the hairbrush incident, back tot he day when my mother feared she had hurt me.  The day that the red mark left on my body hurt her more than it hurt me.  I understood.  Totally.  Completely.  Had I hurt my children?  Had my DNA left a bad mark on them?  The outcome is different...a red welt versus a lifetime disability, but the maternal feelings are the same.

A few days ago, my cell phone rang as I was holding a bowl for M to vomit into.  I looked at the caller ID. It was the geneticist.  Impatient me had waited eight weeks for the answer and now I was catching a waterfall of vomit and couldn't take the call.

Later that day I returned the call. I did my best to sound cool and collected. The results of the tests were negative.  All of them. He did not have either syndrome. I made the genetic counselor repeat them to me.  I made her read the results over the phone.  I made her explain it. She probably thought I was a nut, but I didn't care.  I needed to hear it.  I needed to fully comprehend the results.  I needed to know there was no possibility of mistake.

After I got off the phone, I sat for a few minutes in silence.  I let it sink in.  I let the news process in my brain.  I allowed the weight to lift.

Two syndromes have been ruled out.  For that I am grateful. I still wonder though...what does M have?  It is never simple.  I still worry.  I worry we will never find out what M has.  I worry that we will.  I worry that maybe I will not be strong enough to hear the truth. As much as I hate to admit it, I worry.

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