Friday, February 6, 2015

Babies With Down Syndrome

I've never given birth.  That being said, I can only imagine the anticipation that happens with the growing life forming inside of you; the preparation and the knowledge that life will never, ever be the same.  Standing on the cusp of Motherhood, the most blessed of all titles, the greatest of all bonds, the most revered of human experiences.

Imagine then, being presented with a child who has Down syndrome, whose disability isn't even masked beneath the bloom and the powdery-sweet smell of New Baby; whose difference is obvious at the first glimpse of the eyes.

Then, all the prenatal preparation is suddenly shifted into -- now what?  What will happen?  How will the baby learn?  Will he/she be able to learn?  And the knowing that your role is parent is, indeed, a permanent role.  Forever the parent, to someone who will be forever, in many ways, a child.

Combine this with the notorious batch of postpartum hormones and, well.  Eek. 

Therefore I have empathy for the mother in the scenario broadcast today by ABC news:  Samuel Forrest's wife bears a child, named Leo, who is diagnosed with Down syndrome.  The mother threatens divorce if Samuel keeps the baby.  Samuel wants to keep Leo, and his wife follows through with her ultimatum and leaves them.

I could see my dad stepping up to the plate the same way.  As explained in our story, THE NORTH SIDE OF DOWN, my mother didn't want another child.  She'd already borne eight, and lost one.  She was done.  She went through the steps it takes to ensure that this would never happen. She had her tubes tied.

But it happened.  Amanda came along anyway.  And in what amounts to a tremendous double whammy for Mom, Amanda was born with Down syndrome.  I remember how serious the situation was.  As I described in our book:

I thought of Dad’s announcement to us all, on that day, forty years before.  “Your new little sister is a Mongoloid.” 
              His tone was somber and he watched us carefully for a reaction.  He had sat us all down, all seven of us, so that we could understand the depth of this new development.  We lined up with our sun-tanned faces serious and all eyes in various shades of blue, widening with the new unknown responsibility.  The baby, Dad explained, was going to show up with slanted eyes and a large, protruding, pointed tongue.

                At eight years old, I took this all very seriously.  From Dad’s description, the baby sounded like some sort of freak.  But my heart immediately went out to her.
                Then she arrived.  She didn’t look like a freak.  She was a pink and golden infant with perfect skin and tiny, plump clenched fists.  It had been five years since we’d had a baby in the house, and when this one opened her eyes, I saw they were navy blue, so dark that the pupils were indiscernible.  I fell immediately, violently in love.  I had never seen a baby more beautiful.  I even loved her name:  Amanda Christina Bowman Bailey.  Maybe it was my age, or perhaps it was the fact that she was different from other babies, but my tender mothering instinct kicked in.  This became my baby.  I dressed her.  I fed her.  I changed her.  I held and talked to her for hours.  I sat by the crib and watched her sleep.
                 Well into her forties by that time, Mom hadn’t wanted another baby.  She had actually undergone surgery for a tubal ligation before getting pregnant for Amanda, but the doctor had tied off a blood vessel instead.  It was an error that was ripe for a major lawsuit, but my parents never pursued it. 
                I was too young to understand depression.  I just knew that Mom was sleeping an inordinate amount of the time, which gave me the freedom – as well as the responsibility - to mother the baby. 
So I did.  I changed her diapers, worked with her on speech, played games with her.  There was no way to anticipate the uproarious, witty, outrageous and funny character this baby would eventually become.  But she was a sweet baby with a ready smile and she hardly ever cried.  And today, Amanda is inspiring the masses as a published author!

I have a notion that if Mom had had any idea of the wondrous, illuminating gift that was bestowed upon us that day, she might have felt a little better about the whole thing.

I like to think so, anyway.

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