What They Don't Know

This Boy

Ten years ago he crashed into our world.

A Lost Boy.

He spent his days sitting inside a shed.

Surrounded by 20 other miserable, biting, howling boys.

He was so precious. Locked inside his silent world where he had hidden.

So cautious.

His moods ranging from a smiling adorable dimpled six year old to haunted eyes to screaming fits.

He surprised us.

We were told he was severely mentally disabled but in those first days - he surprised us.

Though he did not understand a word spoken, he sat quiet and listened as we read book after book to him. He drank in the pictures. Memorizing them.

Later - when he escaped his hell - and we walked the streets - he would point - showing us things that were in his books.

His fingers were stiff and unyielding. But he could draw with his toes.

All he needed was a stick and some dirt.

He spoke only a few words. The trauma of the shed shut him down.

But that didn't stop him from laughing. He surprised us with his laughter.

We found little pleasure in where he lived but joy burst out of him.

He smiled. He laughed.

When we weren't there they made him sit. Confined inside a shed.

Or locked inside the building.

Our boy. He was never made for sheds.

He was never made to be confined.

Ten years ago he broke free.

Ten years ago he left hell. He said goodbye to the sad world of the Lost Boys.

I marvel at his resilience.

He astounds me at all he has done these last 10 years.

That severely mentally disabled boy loves books. He loves to read. He flew through series after series this past summer.

He loves to sketch.

He loves to build.

He loves machines and ships and planes.

He never shuts up. He still struggles to fully express himself, but he uses 'Aaron-speak' and always gets his point across. And he is always talking. 

He is in high school now.

It's a challenge but he is making it.

He has to work twice as hard as the other students but in Aaron-fashion - he just plows ahead.

It's hard being Aaron.

What he lost in his first six years is not easily made up. 

His arms and hands are unforgiving.

He walks on legs that don't move with ease.

When we first came home he endured months and months of castings and surgeries on his feet and knees so he could walk without falling. 

Then surgery on his arm so he could feed himself.

At first it worked.

But his arm grew. And it turned. And so he had another surgery to reposition it. 

But then his elbow froze.

It is now unbending. Unyielding.

He's had more surgeries on his other arm and thumbs to make them more functional.

Function for him is nothing like function for us.

Yet he never complains. Ever. 

Life has thrown him a lot of curve balls.

The mountains he has to climb on a daily basis would put most of us to shame.

He has expressive and receptive speech disorders - again from six years of neglect.

He struggles to do simple tasks that the rest of the world takes for granted.

Yet he wants to do everything himself.

Don't tell him he can't.

Because he will figure out how he can.

He is a fighter.

My boy. He's a fighter.

In November we try again.

Another surgery.

It's number ten since he's been home.

This one has never been done on someone with arthrogryposis.

They are going to reconstruct his elbow. Round it out in hopes it will bend.

He will have two doctors operating and a lot of watchers.

He's already been told that it may not work.

He's already been told that the pain of therapy afterwards is going to be hell.

What they don't know is that Aaron lived in hell.

He knows all about it. 

He's tough.

The toughest boy I know.

We let him choose.

He didn't take that decision lightly. He spent time thinking about it. Weighing his choices. There is an easier surgery, one with less pain. But the results would mean a permanently stuck elbow.

He could have said no altogether. Just live with what he has now.

The pain is a huge factor. His doctor described it to him in vivid detail. Therapy will require an hourly 'ripping' of the elbow. 

But our boy is tough.

He weighed his choices and said yes.

Not that he's not scared. We are too.

We don't know if it will work. But he has nothing to lose and everything to gain.

And if it does work then it gives hope to other children with arthrogryposis.

He said yes.

He's going to tackle this surgery the same way he tackles everything else - with determination, resilience and a toughness that puts the rest of us to shame.

And we are going to be behind him cheering, praying and encouraging him all the way.