Wednesday, August 29, 2018

Building a Wall

Brady P. and I sat in the late morning sunshine on the shore by the Jamsen's Fish Market and Bakery.  I shared bites of our turnover with him as he threw rocks.  He was between the low sun and me, so his face was mostly a silhouette. 

A little girl, about 4 years old, was on the beach too.  Her blonde curls sparkled in the sunshine and her face was smudged with chocolate donut from nose to chin.  I chuckled.

As she walked past us, I moved my feet back to give her room.

"I'm looking for treasure," she announced.  I looked at her open palm filled with beach glass and other shiny things.

"Well, there's lots of treasure here!" I assured her.

She scooted around to the other side of Braeden and gave him a look.  From her perspective, the sunlight illuminated his face.  Then she looked at me and asked, "Why does his face look like that?"

My heart stopped.  Surely she didn't mean that he looks different because he has Down syndrome.  I shifted my bum in the rocks. 

"Look like what?" I asked, unable to hold back the wall of defense that was quickly building around me from the inside. Suddenly my belly button was shooting out bricks and laying them high and tight.

"Like that," she pointed, unsure of how to describe it.  Unsure of what she saw was different.  She was just a curious 4-year-old ready to learn and be molded by an advocate: me.

Now, I wanted to ask her what she specifically noticed was different.  I was going to ask if she saw something different in his eyes.  Or his nose.  Or ears...  How does a person, let alone a young person, who has never seen and learned about someone with Down syndrome know that they look different?

I have spent hours looking at two pictures side by side in a text book.  One child had Downs, the other did not.  I could not figure out how to compare the two.  I did not have words to say, "This child's eyes are shaped like this, and this child's eyes are shaped like that."  And so on.

I don't know why, but I can't do it.  I can't depict the subtle differences, even though I know they exist.  Yet when I see the whole face of a person with Down syndrome, I know why they look different.

But I wasn't going to say all that to a four-year-old girl on the beach.

Instead, I internalized all the pain of what is to come in Braeden's life because I can't verbalize the differences, and I added a few layers to my wall.  I let someone's innocent curiosity pass through my over-protective mom filter and turn me into a greatly offended being instead of just seeing it for what it was.

I could no longer see over my wall.

I looked over at Brady P, whose face was still a silhouette.  I couldn't see enough of his features to compare them to hers to try to explain why his face looked "like that."

So I pretended his face looked like hers.

"Is his face messy?" I asked, about to erupt.

She thought for a moment.  And even though it may have not been messy from thimbleberries, she said, "Yes."

"Well," I sneered with a rubber neck, "Your face is messy too!"


I exploded.

Yeah, good job, Amanda.  You just told that four-year-old girl off for making fun of your son, even though she wasn't making fun of him, she was just curious.

I sat there fuming behind my giant wall.  The wall I just built to supposedly protect Brady P. and keep all my anger inside.

I felt heavy and disgusted.  I felt like this dark dragon with yellow eyes was flying around me -- between me and my wall.  I could barely even see Braeden anymore.  Not through the evil I just unleashed.

The girl walked away.

I failed.

Do you know why I failed?  Because that was the first time someone asked me about his appearance in an inquisitive way.  Sure, I've been asked, "Does he have Down syndrome?" and that is a simple answer.  Yes.  It doesn't require an explanation about something I can't explain.

So I sat with my anger right there on the sunny beach.

I had a couple choices.  I could sit with that guilt on my heart, a dragon circumnavigating my body and a wall taller than I could see, and feel sorry for myself and Brady P. because I didn't have the words and may never find them.

Or, I could forgive myself.  I could realize that it's okay, and just because I failed one test, doesn't mean I can't pass the rest.  I know where my shortcomings were in that moment.  I know how my own mind and heart filtered someone else's words, so I could let them hurt me.

She did not say those words to hurt me; I made them hurt myself.

After I bashed down that wall I put up in such a hurry, I was able to let the dust and rubble settle.  I could see it for what it was.  It was a prime opportunity for learning in its purest form about the subject I wholeheartedly want to share.

And I blew it.

But I will do better next time.  I can ask the curious person, whether they are four or forty years old, "What looks different to you?"

Then maybe we can both learn together.

Photo credit Steve Brimm

Here is a picture taken by my friend Steve at a wedding this spring. B-man looks all dapper, but his extra chromosome steals the spotlight.


  1. THIS is why this young man is so lucky and why you are so adored !

  2. This is so beautiful Amanda, even four years later