Thursday, June 14, 2012


We encourage Ryan to talk.  "Say it," we sign, in a plea to hear from his heart.  To know why he screams.  Why he cries.  Why he hits.

We pour over the knowledge we can bear to take in, and chew and chew the mouthful that is autism.

Then, just as we think we're getting a part swallowed... just when we're about to take a breath... more is forced past our lips.

When I try to talk to someone else, so often I fear that all I can talk about anymore is autism.  Ryan, Richie, Maelynn, Eric, and how it shapes our lives.  I fear that my family, my faith, is pretty much all I'm concerned with.  I mean, I like to sew, I like to make bows and things for Maelynn, I like to do things for others, but I so often walk away from a conversation kicking myself.

"You talked about it again."

"Can't you talk to one person without bringing up things like ABA, speech, OT, the BARC, ARDs, aides, IEP's, and the like?"

No, I guess I can't.

I used to talk more about our lives.  I used to be a bit more open, a bit more easy to get to know.  Then the first realities of rejection hit, even in small ways, that made me afraid.  Weary.  Tired of explaining.  Tired of listening to the ideas of what might fix, or what someone else might think his diagnosis should be.  Tired of explaining and defending not autism, but defending myself.  Defending the experts.  Defending the fact that the diagnosis exists.

Maybe that's because it hasn't quite made it to my core.

Maybe that's because I just have to hear myself say "he has autism"... or maybe it's in defense of the explanation that forcing those words out still hurts.

I'm working on opening again.  I'm working on trusting again.  But it's going to take some time.

And until then, if I seem like a horse in a fire while I'm talking to you, it's because I'm working on holding in a bite too big in the first place... a bite I never intended to take.  Talking to friends recently, we discussed how it is to have a child with a special need, and the seeking to find a cure, a cause, a reason... something to maybe punish ourselves for, I guess... something to pledge to never do again.  Something to blame, to curse, to shun, to abolish, to avoid so that no other child will have to live through this.

But all we could come up with, overly simplistic for some, and certainly not anti research, was this bit of wisdom...

It just does.

It just happens.

They get it, these friends.  But there's so much to the rejection, the seclusion, the shutting the windows, the blocking out the chance for vulnerability that so often ends in pain, that even someone as understanding as they are is cannot always break through the wall of terror that sadly, I've built for myself.

Brick by fearful brick.

Bricks formed of a mix if fear of others' opinions, fear of making myself vulnerable and being rejected again, and fired in the kiln of lies that whisper from my past experiences and fueled by my selfish pride.  Bricks in a wall at which I'm constantly chipping away, and with each chunk, I get a little more relaxed and a little stronger at the same time.  As the Lord uses more people and experiences and the word to grow my faith-roots stronger and deeper, planted more firmly in truth with each verse, each sermon, each book, each friend fertilizes those roots.  Along with the positive, the frustrating, the gut-wrenching, the sad, the miserable times blow my tree about. With each gust, breeze, and wind the faith-roots grow deeper, reaching for more truth... or sometimes the same truth... and eventually the winds calm a bit, and I'm better.   God is becoming bigger and bigger to me all the time.  People are becoming less scary. What they might say scares me a little less.

The thing is, we hear all the things people say.  The attitudes they have toward us once they really experience what our life is like.  The truth is that we're not likely to avoid being hurt. Whether it be a statement made flippantly or of ignorance or a fiery dart thrown with deadly accuracy, hurt feelings hurt.  They just do.  As much as I believe in spreading awareness of kids like Ryan, I can't place too much hope in people hearing about him and kids like him and immediately caring and completely changing the way they view people.  No amount of awareness can completely cut out bigotry.  We will try.  We will work, we will share, we will stand up... but in the process, the blast-furnace gusts of hate will eventually make their way home.

So why bother with people?  Why bother if you know, eventually, hurt will come?

We need each other.  We were made to operate as a body.  We who trust in Christ are told to encourage and support each other.

2 Let us hold fast the confession of our hope without wavering, for he who promised is faithful. 24 And let us consider how to stir up one another to love and good works, 25  not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near. ~Hebrews 10:23-25, ESV

And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken. ~Ecclesiastes 4:12

It makes sense.  It may not at the outset, but it does.  And when it doesn't, we trust, forgive, heal, and remember that we're being trained to bend with the wind, always supported by the roots of our faith. 

And I've discovered that, for every one person who says something ugly or does something mean, there are a whole roomful who support us and Ryan and are really, truly interested in encouraging us if we will give them the chance. 

You know what?  I bet the same is true for you.  If it's not yet, it can be. 

Thanks be to God for growing us, strengthening us, and giving us what and who we need. 

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...