How safe are you?

Friday, Britton was out of school.  He's an early riser, and it was only 75 degrees, so we decided to go for a bike ride.  It was a really awesome ride, and we were enjoying ourselves.  I noticed that lots of people walking and riding were smiling and waving at us.  I can't really see what he's doing back there, but I figured he must have a huge smile on his face.  He was stimming with his left hand which looks very much like waving.  Hello fellow walkers and riders.  :)

I had a big plan for all the errands we were going to, all running through my head as we rode.
I was praying that Britton was up for it.  That we wouldn't go anywhere he couldn't handle.  That no where would be super crowded, and that I'd be able to handle whatever happened.  As I was riding along the bayou, I noticed this big white bird.  Now, I don't really know what it is, but I always see it and wonder.  It's a REALLY BIG bird.  I think it's some kind of bird that you normally see at the beach.  As that thought crossed my mind, I begin to hear a still small voice.

"Most these birds live at the ocean.  He'll never taste fresh fish, he'll never smell the ocean breeze, he will always eat bugs and catfish."  I thought, So why does he stay?  The answer was obvious, because he's safe, that's why.  No predators along the sewage filled bayou.

I was so stunned by the thoughts going through my head.  It took me a minute or two, but then I got the connection.  I struggle so hard with taking Britton into the public.  I never know what's going to happen, it's always like Russian Roulette.  Will he stay with me, will he run off?  Will people get angry, will they stare nonstop?  On and on the fearful questions pummel my subconscious.
But I realize, that I have a choice, just like the bird.  I can stay by the bayou... eating bugs, or I can take a huge giant leap of faith every single day, and smell the ocean breeze.  So today, we went to Costco, then to the car wash, then to the bank, and ate lunch at Willie's Icehouse.  Some people really rather not think about the disabled, they are really bothered by my "putting us out there" for them to have to see.  Others however are inspired and grateful and kind.  There will always be both kinds of people, there will always be those who Britton inspires, and those who cringe and stare.  But because I really want him to smell the ocean, to eat fresh fish, and soar on the ocean breeze.  I'll just keep praying for God to protect us from the "predators" that we will inevitably encounter.  There are so few of us willing to step out there with our disability for the world to "appraise."  I have to say that I am stunned by how rude and uneducated so many people are to the disabled.  For those of you who wonder, you shouldn't stare.  BUT... you should acknowledge.  If you are afraid to look, and you quickly look away, it can seem like  you're either disgusted or freaked out.  So, do what you do with ANY stranger.  Just look the person in the eyes, and smile.  It would okay to even say hello.  Britton has stunned me time and again, by speaking back and replyng, "Hi."  I do find that if I can convince him to wear his t-shirt that says, "Autistic Genius" that people are less fearful.  The fear of the unknown seems to be a huge part of it.  For Britton, he looks so normal, lots of people are just trying to figure out if he's "normal" or he's not?

I consider today a success.  We went, we saw lots of folks and we didn't cause anyone to run in fear.
It was a day of soaring on the currents, a day of eating only fresh fish.  I'm not always brave, some days I take him through the drive thru cause it's really busy inside and I'm not up for it.  Yep on those days we might as well eat bugs.  It can be after a difficult situation in the public, and I cower sometimes for weeks.  I'm not alone, many moms and dads have never taken their autistic children to the movies, grocery shopping or out to eat.  Some of them have spent their lives between home and school, and a school bus.  That's it.  More and more schools are refusing to take children out as well.  Insurance premiums are just too high.  So, if you've never seen someone with autism out shopping, don't be surprised.  Even though they are 1 in 54, they are pretty much sitting beside a sewage filled bayou, eating bugs and bottom feeders. (Mostly hiding in their homes, or schools)  It's a scary world out there.  I'll never see that bird again and think or feel the same way.  I'll hope he eventually disappears and I'll believe he finally woke up one day and decided that really living is worth far more than being safe.  What do you think?  Should we play it safe, just eat the mosquitoes and flies, safely scoop up the catfish out of the sewage filled water?  Or should we risk it all, by getting on a plane once a year and flying across an ocean to paradise?  Should we gamble that people will be kind, and even if autism has a melt down, it will be worth the risk?  You've seen my pictures, you know I'm a gambler at heart.  So here's to eating fresh fish, chasing the sun across the water, and here's to that white bird.  May he take flight.

Maybe in the next life it won't matter so much.  But here, and now... it's hard to imagine that it won't.  I don't seem to be able to help myself wondering why God intervenes sometimes, and seems to turn a deaf ear other times.  My soul feels bruised, mangled, worn.  I cry out day after day and wonder what I have done for God to ignore me.  So many families get reprieve.  At least enough healing to get language, have some hope, see a possible future.  Others, like us, just aren't as deserving, or needy, or perhaps God loves them more?  I know, I shouldn't go there, but the truth is, we all do.  When things get super hard, I begin to wonder why God ignores me.  I wonder what did I do this time.  He obviously owes me nothing, but my son could not have committed any sins, since this disease began to ravage him before he was even two.  I know it's not rational, I know it does not fit with God's word... it is just what I FEEL.  When I get this tired, it's hard to deal with what I know versus what I feel.  What I feel just comes boiling to the surface like some nasty oil well about to erupt.  It's not good.  I decided to be extremely transparent.  My hope is that if you are battling something equally difficult, that you will feel comforted to know you are not alone in your depravity.  No, no, not depravity.  Let's go with despair.  I had a friend tell me that you have to be prepared for the consequences of real honesty.  I have no idea if I'm prepared for it, seems insignificant in this battle.  I personally think honesty saves me.   If tragedy really exposes who we are, I must tell you I am the most depraved of all men.  I cry incessantly.  I beg God, I ask God, and eventually I blame God for not caring enough.  Again, all NOT GOOD!
There is a tiny light of good news in all this... it's that God listens and tolerates my despair.  He always leads me back to His word and attempts to encourage me.  I just have days where I do not feel it will be possible for me to hang on any longer.  How dare I blame God, for what I know God clearly opposes? It's a good question.  God definitely operates on a different timetable than impatient human beings expect.  From Abraham to Moses, David and so many others.  I learn that God moves in ways I would neither predict nor desire.  A record of God's faithfulness in the past combines with hope in a better future for one end:  TO EQUIP ME FOR TODAY!  Right now is my most important moment in this journey, because today is the only time when I have any power.

I watch my very brave husband battle this autism monster.  He seriously does it without many tears, with his face set like stone.  He is determined to eradicate this monster from his only son.  To somehow liberate his family from this living death of a life.  He just marches on, without complaint, with the most incredible resolve.  I've never known a better man.  He is God's man.  I know that God must be so proud of him, I am another story.  Yes I am that woman who feels sorry for Job's wife.  LOL  I recently went back to research to be sure he didn't ditch her for a new wife when God restored everything.  Sure enough, there she was.  Enjoying the fruits of her husband's faith.  That gives me some hope. (feel free to laugh)

This latest twist of autism fate I didn't see coming.  I knew something was wrong back in early Spring, but we battled away, the same way we always had.  I didn't know I was NOT HELPING.  Now, that he has been ravaged by this strep virus/bacteria that I didn't even know was there.  Just one more battle his body is attempting to fight.  I'm just praying his body is up for another assault.  He isn't able to sleep much because of it.  They say the strep inflams the brain and causes all kinds of awful things.  He hallucinates, he stares at things for long periods of time.  He cries out.  He has been attempting to reach over and close my eyes for about a month.  (It feels like he might poke my eyes out) So as long as I wear sunglasses, (even in the house) he's okay with it.  If I take them off, he will come and put them back on me, or incessantly try to put his hands over my eyelids.  I know, who knew autism could get any weirder?

When he finally crashed in exhaustion somewhere around 12:30am, I was looking at him, praying for him.  Thinking, if you had cancer, if you had some awful disease that people understood they would pray for you more.  They would feel concern for you and your family.  But, no, because this disease is created by a greedy pharmaceutical industry, with the backing of the whole government.  They spend millions of dollars on their propaganda, saying that autism is caused by any and everything.  (e.g. refrigerator moms, Genetics, what the mom ate during pregnancy, what the mom DID during pregnancy.  What the mom was exposed to during pregnancy.  Starting to see a pattern?)  A researcher that was recently interviewed said that "autism has been proven to be genetic."  I threw my rubbber glove at the television.  (THAT is a bald face lie)  It has been speculated.  But if you ever thought it through for even a second you'd realize that 1 in 54 children can't be a genetic problem.  We've never had a GENETIC pandemic.  There is no such thing.  They use the genetic thing because they want you to blame the parents.  THEN, YOU FEEL SAFE!  Get it?  That way you don't worry about those pesky autism rumors and vaccines.  You just slap your baby on the vaccine conveyor belt and not let those silly autism parents worry you.  We all know it's their faults and they're just looking for someone to blame.  Yeah, I wish.

I write a lot.  Journals, blogs, just all kinds of things.  I write poetry.  Yeah, I know hard to believe.  But I often find things I've written, in books, cries of lament penciled in my bible, in spirals, just laying around.  I recently found this one.  I was stunned by how I've felt the same for years and years.  As each new battle rages... it's really the same war isn't it?  But as I think of the battle that raged when I wrote this, I remember that I got through that battle, and what I felt and believed was changed by it.  Remembering my relationship with God takes effort and intention.  I cannot pull out a video and watch the history and growth of my relationship with God, there are no photo albums of living in faith.  Only God sees my heart, and my battle scars.  This is our relationship that is forever under assault.  By the same token, the "monster" is His enemy too.  After all, "if God be for us, who can be against us?"  Let's slay this monster and burn the debris.

My precious child is held a captive..

Imprisoned by a ravaging disease

The torture is constant and endless

And only God can set my boy free.

So I pick up my sword each morning,

I hold it up all through the night.

This monster rips and destroys

I must battle him, and relentlessly fight.

Somedays I sense the enemy weaken,

Somedays he drops back in retreat.

But most days he laughs at my efforts,

Knocking me back in defeat.

Is there no place to end this fighting?

The vigil I keep is ever long.

The weapons I wield are so heavy.

But deep in my heart there is a song--

It’s true it’s my child this time,

As you watch from your life of ease.

But the monster is not too selective.

It’s on your child he’s wanting to feed.

So I strap on my helmet each morning.

I lift my shield every single day.

I pray that someone will hear me

That God will show me the way.  

When the battle overwhelms and destroys

On days that I can’t hear the song.

I’m pleading for you to wake up.

To open your eyes and believe what’s wrong.,

It’s an army of families marching,

I think I heard the sound of their cries.

Forming a wall against the monster,

A fortress against the world’s lies.

Listen I’m sure you’ll hear it.

It’s a shout, a call to fight.

No longer will we suffer in silence.

No longer will we hide from the light.

The monster has taken some serious blows,

His wounds are swelling and sore.

His companions try desperately to shift your gaze.

But the pain is just too hard to ignore.

They pretend he isn’t really a monster.

They pretend they’ve taken his claws.

But they’ve lied as they’ve stolen our children.

Their greed is directing their cause.

Some children have crawled to the surface.

Some children are now running free.

But my child still battles the darkness.

Silenced by this ravaging disease.

So mothers don’t give up your vigil.

Don’t lower your shields to rest.

The monster is licking his wounds just now,

But he’s seeking your family next.

Oh God of all poisoned children!

Please stand and fight beside me now.

The monster continues to ravage and chew,

We must stop him, but we need to know how.

Hold me tight as I’m keeping watch,

Keep me awake when the battle grows long.

Lift my arms when they fall in weakness,

But most important let me hear your song.

Help me sing about hope and about longing.

Help me believe that he can some day be free.

Help me love in this black, evil battle.

Help me forgive those who aren’t willing to see.

I need to sing out loud and forever!

I need to be heard over the lying throng!

Please help me sing loud so my child can hear...

Please empower me as I sing your song.

Father of light and Father of kindness.

My hope and strength in this dark, foul place.

My eyes have have adjusted to the darkness,

My weary limbs seem to keep up the pace.

A crack of light has pierced this prison.

Showing truth everywhere it shines.

As the crack grows larger and larger

I know that victory will someday be mine.

One more time I lift up my shield,

One more time I look in Britton’s face.

The hope and trust that shines in his eyes.

Is enough, to make me pick up the pace.

Lift your shield we have monsters to slay!