Our story: A vision of majesty at Greek Easter

We just returned from a long weekend in L.A. (Lower Alabama) celebrating Greek Easter. Here’s the majesty I saw.

I say “Greek Easter” because my wife’s stepfather–affectionately called Papou by the kids–immigrated from Greece and is a member of the Greek Orthodox Church. The Orthodox follow a different calendar (the Julian Calendar), so some  years our kids have enjoyed two Easters: when Western Christians celebrate and then “Greek Easter.” It’s an experience: tons of food, wine at the crack of dawn, eggs dyed red with Rit, and wall-to-wall Greek music.

Papou immigrated to the Malbis Plantation. It’s a sprawling expanse with dozens of century-old live oaks. In the middle of Papou’s back acreage is a majestic, dual-trunk live oak that by its size must have been there since the beginning. Each year, I try to take a photo of the kids in front of it.

Here’s a photo from when they were 3 and 4:

The photo at the top is from this year when they are 8 and 9 (and shows the size of the tree a lot better).

Because we’ve been attending Greek Easter each year, many family, friends, and neighbors have gotten to watch our children grow up. Without fail, each year they all comment on “how big your children are getting,” “how much Juliet has sprouted up,” and, “look at how tall James is.” This isn’t because they are tall for their age. But, they haven’t seen the kids everyday like their parents have where the growth is so incremental as to be almost imperceptible.

This perspective on growth returns to a common theme I hope to convey with these posts about our story.

When Juliet was born, I fast forwarded to seeing an image of giving my daughter away at her wedding, to that image being shattered when the nurse said she thought Juliet had Down syndrome. Then, all I could see is the mistreatment and ridicule that those with intellectual disabilities are abused with by those referred to as “normal” or “typical” or even “advanced.” The worry of her being bullied consumed me in those early days.

What I failed to appreciate is the amount of time that would elapse before those worries and fears could possibly happen. While cradling her in my arms as a baby, I was depressed and weeping about events that wouldn’t occur for years.

As the days, then weeks, then months, and now years have passed, I’ve come to appreciate both how justified those worries are, but how unjustified that consuming fear of them was.

Sadly, many of us considered not intellectually disabled think it is funny and fair game to ridicule and humiliate those labeled intellectually disabled. Even worse, some truly evil people will physically and sexually abuse individuals who like my daughter, have an intellectual disability. It remains my number one fear that my daughter will be a victim of this abuse.

So, these fears and worries are justified.

But it was not justified being consumed to the point of depression when she was born.

Because what I could not appreciate–as almost anyone who has received the diagnosis, either prenatally or postnatally similarly cannot foresee–are the thousands of days I would have with my child. To raise her. To teach her. To hopefully establish a safe social network of friends, teachers, coaches, and neighbors for her.

Just like when that live oak sprouted from an acorn, no one could envision its majestic limbs, canopy, and size that it has grown to all these decades later.

Just like those who only see Juliet once a year for Greek Easter can not envision her growing up as she has.

You just can’t see that far out to see how life will develop for your child. Any child. Even those who society, school systems, state insurance programs, and doctors will easily and immediately label: “Down syndrome,” “intellectually disabled,” “mild to moderate mental retardation.” Even with those labels, it does not tell you what your child’s life can become.

We look forward each year to Greek Easter. To the celebration with our married-into Greek family and friends. To the Greek music. To the wine and the ouzo, the lamb and the olives.

And, I look forward to seeing Juliet grow up. And, I hope it is a life of majesty.

UPDATE: 

J & J, July 2016