Wednesday, January 4, 2012

Down's Syndrome: the education of me (part 2)

Start with part one :)

It was New Year's Eve, 2010.  I sat in the dimming hospital room and had just urged the visitor who knocked on the door to "come in".

"Hold on a second honey, the doctor is here." I said to my 9 year old daughter, who had called to check in from Grandma's house.  I was expecting the usual "he looks great" but what I heard rocked my world.

I was alone, William had back surgery just a week prior - so he wasn't staying with me as he usually would (he also could not drive yet)  My mom's health is not good and I didn't want her to stay at the hospital, and my dad was really the only one who could help William if he needed anything.  The other kids were at my in-law's house.  I had confidently sent everyone away, secretly thinking that I would enjoy the peace and quiet!

The doc started by introducing himself and handing me a business card.  I listened as he said that he had been talking with the nurses and other doctors (thinking "uh huh - can we move on, I'm on the phone...") and that he thought that Aaron should be tested for Down's Syndrome.  My heart started beating faster, I felt the room close in.  I told my daughter "I'll call you back honey."

He started recounting signs of Down's Syndrome and whether or not my perfect baby boy had them.  Something about curved pinky fingers (he didn't) and a single crease on the palm of the hand (he did on one hand).  Extra space between the toes (he didn't) and low and rear-set ears (he did mildly).  Slanted eyes (a little) but no extra fold of skin.  Thick, protruding tongue, he had that.  There were more, thirteen I think...

The physical signs were enough to warrant the chromosome tests - did we want to do that now or wait until later?  Oh, and sometimes babies with Down's Syndrome have heart defects and lung problems, did we want to test for that now or wait until later?

My head was reeling, my mind racing to catch up to what I was hearing!  How could this be happening?  He looked so normal - there must be some mistake.  I felt sick to my stomach, like I was going to vomit.  My throat was tense and I knew that I would cry, but not now.  Now, I had to focus.  I had to pay attention and be rational and make a good decision for my baby.  I asked questions about the tests and how invasive they were, how necessary they would be, what they would tell us and how long they would take.  I told him to go ahead and do both of them.  I was relieved that the heart test would be back soon, disappointed that the karyotyping would take several weeks.

I called my husband.  Now I cried.

I called for my sweet Aaron to come nurse.  And cried some more.
My parents came to visit.  I told them.  We all cried.

I texted a few close friends.  They all cried with us.  My best friend even sent me a picture of the product of her days of crying; puffy eyes have never conveyed such love before!

Aaron's heart scan came back perfect.  I harbored hope that would mean he was normal.  I Googled "Down's Syndrome Babies" and compared the photos and descriptions, thinking "it's not true" - while secretly beginning to recognize slight traces.  We decided not to tell the kids or "everyone" (aka Facebook posts) until we knew for sure.

The next few weeks were a crash course in my own ignorance and judgmental nature.  All I thought I believed about special needs children and families would be tested and hung out to dry.  What was left was the realization that I was not as nice as I thought I was.

To be continued...

Part 3
Part 4

Don't stop - there's lots more good stuff...

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