Tag: siblings of special needs children

Paradox

Sometimes the very thing you never thought you wanted becomes the very thing you would die for.

Sometimes the dying gets real – putting to death pride, offense, ignorance, whether it’s within ourselves or in those around us.

I never thought I would have a child with Down syndrome. The concept was foreign to me as I would soon find is to so many. No one thinks “it” will happen to them.

I wanted no part of it.

At one time, I would have been one of those shouting, “Hallelujah,” when a diagnosis of Down syndrome was negative.

And I would have said, “I’m sorry,” when a parent got a diagnosis.

I would have continued to say, “I don’t care if it’s a boy or girl – as long as it’s healthy.”

Maybe I would have inadvertently and ignorantly used the R-word.

I would have, until I knew better.

But my most gracious God gave my husband and me a gift, wrapped in a slightly different package. Opening this gift opened up a whole new world.

It gave my other children the gift of compassion and fierce love along with the courage to defend and be proud of him and love those like him.

 

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In life, the paths we anticipate to travel change in a moment and our journey changes for a lifetime.

A single chromosome.

Something too small to be seen with the naked eye, yet displays itself for the world to see.

Today, that world celebrates that little something extra.

But many still fear Down syndrome. For many it is the enemy. Many wish it away and even fight to eliminate it by eliminating those with it before they even have a chance to be born.

It’s not the desired outcome.

The irony is that the undesirable are often the most loving and become the most loved.

Today as I scroll through my Facebook feed I see the beautiful faces of those being celebrated and read words of those who celebrate them.  Famous people and not-so-famous people alike honoring those they love.

Down syndrome in my world isn’t uncommon. I live with it, around it, through it. It envelopes and surrounds.  I am always aware and never preoccupied.  It is never far from my thoughts and yet it is never on my mind.

An extra chromosome. Minuscule yet enormous.

An enigma, this Down syndrome.

Such a part of him, but not who he is.

Yet he is all he needs to be.
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Embarrassed

It happened today.

A slight blush shone through his little freckled cheeks and small tears hung in his blue eyes. His head hung a little low, and I knew what was coming.

“Mom, those kids were staring.”

His face couldn’t hide the mixture of embarrassment and self- ashamedness for being embarrassed by his older brother.

This kind of embarrassment only comes with having a stare-worthy brother.

As we parked for our end-of the-year celebratory lunch for Josh, I felt a twinge of angst. My eight-year old asked if we were taking the food home.

“Don’t you want to eat inside? What do you want to do? “I prodded and probed for his true “why” for asking and though he said it was fine to go in, but the truth was the proverbial elephant in the room.

The unspoken. The un-admittable.

Embarrassment.  And shame for being embarrassed.

According to Wikipedia:

Embarrassment is an emotional state of intense discomfort with oneself, experienced upon having a socially unacceptable act or condition witnessed by or revealed to others.

Joshua’s condition is considered socially unacceptable by some.

And though he does not know it, those who love him do.

His brother doesn’t want to feel this way.

But he’s eight. And things are a big deal at eight.

So as I tried to explain that they may just be curious, and even if they weren’t  we need to stand up for Josh and not worry about what others think, and people just don’t know what our lives are like and all the blah, blah, blah…

In my ramblings, I struggled between anger at those boys who were staring and my boy embarrassed about it and myself for feeling it sometimes myself.

I will clearly state that we not embarrassed by Joshua. We are not ashamed of him. Embarrassment creeps in rises up when those who do not understand him make us feel like he is less.

I needed to glimpse into my young son’s heart. As my own heart poured out sympathy and shared his pain so intensely, I felt Joshua’s pain unaware. My soul tore for each for different reasons.

“They think he’s weird. And that might mean they think I’m weird.”

“Well, I’m weird,” I said in some lame attempt to somehow make this whole “thing” better.

Then I told him that we needed to love Josh more than what people thought about him.

My oldest son, who often does with Josh what I cannot, had moments before pulled him out of the booth when he didn’t want to leave , put him in his car seat, then took him out of the van when we arrived home.

As we walked in, my soft-spoken and gentle son said to his youngest brother, “You know, I used to feel that way too.”

And I asked, “What changed your mind?”

He simply stated: “What you said.”

I can’t change people’s minds. I can’t know what they are thinking. I don’t know if they are curious or think my son is weird.

I don’t know if they are whispering prayers of thanksgiving that they don’t have a child like mine.

I could say I don’t care.

But I do.  I hate the stares. I hate them for all of us.

I hate that we look at people through our eyes instead of God’s.

And as I told my son in eight-year old language, “God loves all of us the same. God loves Josh as much as he loves you. God loves the homeless man drunk and smelly on the street as much as he loves the man who lives in a mansion.  We should all love each other like that. But unfortunately, people don’t.”

Later, we talked a little more and I asked him if he felt bad for being embarrassed and he said he was. Because he loves his brother.

But he said that people think Josh is stupid and they might think he’s stupid.

“So what can we do about it?” I asked.

I can love my son more than what people think about him.

Is that enough?

And what can we do about it?