Happy World Down Syndrome Day and Mishayla's Light

Today, March 21, is World Down Syndrome Day!!  Today, people with Down Syndrome will be recognized at the United Nations, and other places around the world.

So in recognition, I would like to react to a blog post I was reading.  Amy Becker, is the mother of six year old Penny, who has Down Syndrome.  Ms. Becker discusses her own perceptions about Down Syndrome before the birth of her daughter, and how her perceptions changed when Penny was born.

She beautifully renders the first time she saw Penny in the blog.  She discusses what she knew about what people with Down Syndrome look like, and what Penny looked like to her.

She didn't look a thing like a baby that has Down Syndrome is supposed to look like.

What are some of the physical characteristics of Down Syndrome anyway?  Here are a few:

Flat Nose
Thick Neck
Epicathal Folds of the skin around the eyes
Short stature
Cherubic expression.

This is just to name a few supposed characteristics.  Prior to Mishayla's birth, I never knew any of this.  And like Amy Becker, my husband and I were told by the doctors that she probably had Down Syndrome, even though it was not officially confirmed until a chromosome report was completed a week later at UCLA Medical Center. 

But I do remember vividly the first time I saw her.  Since she had been immediately diagnosed after birth with esophageal atresia, and was being transferred out of the hospital where I had her, as well as being premature, she was in an incubator in the NICU unit.  My husband and I, and my son Jared, who was 10 years old at the time, were allowed in to see her before the helicopter came to medivac her to UCLA.

I recall seeing this baby that looked like an angel.  Her skin was ivory white, like porcelain, and her hair looked blond. I remember marveling at this, having a child that was so light featured, because my features, and my husband's, are dark.  And for some reason, I remember a light.  I have no recollection of where this light was coming from. I don't think it would have been inside the incubator, or shining into it either.  But I remember her face being illuminated. 

That is what she looked like to me.  Angelic perfection.  Like Amy Becker, I didn't see any Down Syndrome at all.  All I saw was this miracle of new life.

To this day, when I look at Mishayla, I don't see any of those "characteristics" either.  I see this beautiful girl, slowly emerging into a young woman, long shining dark hair, and striking hazel eyes that are full of joy and pleasure whenever she smiles. 

In other words, it is her essence that I see.  And I know others see it too.  Most of her teachers have told me that "Mishayla is a happy kid." Mishayla still has that light around her that I saw the first time I ever looked at her.  To those that know her and love her, she always will have that light; it is her own gift to the world.

It is my hope as she grows, and goes out into the world, that light, and that essence, is what the world sees from my daughter.  Down Syndrome? Not significant at all!!

So Happy World Down Syndrome Day to Mishayla, to Penny, and to all people with Down Syndrome and their families.  We are truly blessed.