Tuesday, March 21, 2017

World Leah Day

Today is World Down syndrome Day.

It is a day that the world advocates for, educates about, and celebrates Down syndrome.

Today is chosen because the date, 3/21, is used to represent the three copies of the 21st chromosome which is the genetic abnormality that causes Down syndrome.

Most of my friends who are parents of kiddos with Down syndrome are doing something to celebrate their children today.

Assemblies to discuss Down syndrome in their schools.

Wearing crazy socks.

Letters sent home to classmates to explain their kids a little better.

Goodies purchased or made with the Down syndrome colors of blue and gold, and are being passed out all around the world.

It really is a big day except around here.

I have a hard time with today.  I never know what to do.

My world is engulfed with all things Down syndrome but I do everything I can to protect my baby's world from Down syndrome.

I don’t ever think about Down syndrome, except I never stop thinking about Down syndrome.

My perspective differs greatly than what the text books teach.

My view does not include three copies of the 21st chromosome.

Or a learning disability.

Or a speech delay.

Or small ears.

Or small feet and hands.

Or cute little curved pinkies.

When I look at Leah, I see my beautiful baby who seems to bring a little piece of heaven to everyone she meets.  I see strength.  I see determination.  I see happiness.  I see stubbornness (she gets that from her daddy).  I see intelligence. 

I see a child who will grow to impact the world in ways I never can.

I never see Down syndrome.

But then again, do I?

Does Down syndrome really mean beauty? Or heaven? Or strength? Or determination? Or happiness?

Stubbornness has to be a Sones thing.

These generally aren’t the focus of all things Down syndrome though.  When we educate and advocate, the focus tends to be on the text book stuff.  

But those things have very little to do with my sweetie.

I don’t want to celebrate the scientific, biological, or academic differences my beauty may possess.

I want to celebrate her countenance and the way it impacts the world, which I do believe may be connected to having three copies of the 21st chromosome but those scientific studies haven’t really happened yet…

How do I make the world see THAT?

When I can figure it out, I will be ALL IN for World Down syndrome Day.

Till then, we’ll celebrate World Leah Day!

But if you know this house, every day is World Leah Day… Trust me. ;)