What are you hiding in your underwear drawer?
I know, personal question.
Or a love letter.
Or a gun.
I’m hiding something in Jayden’s underwear drawer.
It’s to the left of his socks.
On top of the “brief” dreams that one day he would be potty trained.
Bandanas. There. I said it. Fine if he was a cowboy or making a bandana dress for his sister, but these bandanas represent a clear next step in the progression of Sanfilippo.
He wears them so he doesn’t soak his shirts with his drool.
No mom wants to be embarrassed of her child.
Embarrassment is defined as: an emotional state of intense discomfort with oneself, experienced upon having a socially unacceptable act or condition witnessed by or revealed to others. Usually some amount of loss of honor or dignity is involved, but how much and the type depends on the embarrassing situation. It is similar to shame, except that shame may be experienced for an act known only to oneself.
Also, embarrassment usually carries the connotation of being caused by an act that is merely socially unacceptable, rather than morally wrong.
Have you ever felt embarrassed by someone you love?
Maybe they wear a dumb shirt.
Or say the wrong thing.
Or there’s just something about them you can’t change.
There comes a point in Sanfilippo where you just can’t hide it anymore. You just stand out in the crowd. And, if I am being honest, there are times I just wish we fit in.
Like at dinner.
Or with our friends and their kids.
And birthday parties and the grocery store.
In the beginning, Jayden looked “normal” enough to blend in as long as he didn’t talk or make noises. We could still navigate public places with only a few glances as he ran by. When we added a wheelchair, we actually got fewer “curious” stares and more “sympathy” looks.
But here on Boyce Lane, drool is a normal part of life.
No one cares. I take my sleeve and wipe his drool.
Every morning, we systematically remove him from a toddler high chair, wipe his belly, his neck, his hands, in-between his fingers, his toddler tray, and sweep the floor. Thankful he can still feed himself.
Do you see why it’s easier to stay home? I bet you’re uncomfortable just reading this, let alone if we were eating next to you at a restaurant.
During dinner one night, a friend’s child asked, “why is that boy in that chair?” What do you say? Like I know, what am I, a disability expert? So, I just tried my best to say his brain doesn’t work like hers. God made him to do different things down here.
Bandanas symbolize just one more difference that we want to hide, but can’t.
It makes me sad.
And, it makes me mad.
But most of all, it makes me mad that I’m sad and mad. I wish I had the perfect answer for every question I get asked. I wish I wasn’t embarrassed of his bandana and could parade him around confidently without a care in the world about who was looking. I don’t have all the answers. I still get embarrassed.
But I do it, anyway.
I take my family in public, anyway.
We color code his bandana in an effort to blend, and we go for it, anyway.
Scared? A bit.
Hurtful? At times.
So why do we leave the safety of Boyce Lane?
Because I am a work in progress and people are too. Disability will never be understood if we keep hiding. So we keep trying to answer 2 year olds when they ask great questions. We expose ourselves and our children to the elements so we can all be better because of it.
And the desire to share Jayden with the world comes from the beauty behind the drool. The more frequently people see differences, the less different we all become.
I want the world to see what I see when I look at him.
A crooked smile, bright eyed, masterpiece.