Friday, October 30, 2020

Ground Breaking Surgery!

Next Monday.

Aaron and I leave early early Sunday morning so he can get a COVID test at the hospital. 

(I had my COVID test this past week)

Monday is surgery.

He is nervous. 

He is excited at the idea that he may have an elbow that bends.

But he's definitely a bit stressed about the surgery and the therapy involved. 

He will be at the hospital for 5-7 days.

I'm nervous too.

This surgery has never been done before on someone with arthrogryposis which is a bit nerve-wracking. We want the best for Aaron. We want this to work so that he can have increased mobility and independence. This holds so much hope for him. It's a delicate surgery. Aaron has NO biceps and his bones are tiny and not the strongest. I'm grateful he is in the best hands possible or we would never consider this.

Leaving Mary for 5-7 days scares me. Rob tucks her into bed with me around midnight each night and I snuggle with her and keep tabs on her seizures. 

I shouldn't be nervous. We have 2 different monitors in her room and ours and she wears a seizure alarm. Rob will have access to both monitors and I will be able to watch her on one of the monitors from Philly. 

Rob is the BEST Papa in the entire world. He's better at reacting to her alarms blaring than I am. He is stronger and can carry Mary when she is seizing. He has given her more rescue meds than either of us can count. She's in the best hands possible. 

But still... Mamas have a hard time leaving their kids and Mary makes it doubly hard. She throws curve balls at us so often that we always live on high alert.

We are stepping out in faith this next week. Believing that God holds both our kids in His loving arms. Knowing that He knows what we need before we have to ask. Knowing that He will carry us through the next few weeks.

We are definitely asking for prayer.

Prayers for peace. Prayers for steady hands and wisdom for the doctors. Prayers for pain control. Prayers for Rob at home with Mary. Prayers for protection over her - especially in the night hours. 

Last Sunday, Aaron was anointed and prayed over in church. It was a precious time and we are grateful for a church body who is surrounding us with love, support and prayers.

Those prayers carry us through.

Thank you to those near and far who will be lifting Aaron up to the throne.

It's a ground breaking surgery with so much potential for both our son and others!!

I will be posting as I can next week so stay tuned...

Monday, October 5, 2020

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.