Thursday, June 9, 2016

Not What We Expected~Processing (Medical and Timothy)

Up at 6:15am, we squeaked out the door at 7:30.  We were running about 15 minutes late (as

Today we went to a local orthopedic hospital.  This was Timothy's big day.  Today was a day of answers.

(We doubled up appointments with Jael as well.)

Many of the kids wanted to go, only a couple didn't.  Anna and Hannah (another teen we LOVE) stayed with Ben at home.  We knew this would be a long day.

I will admit to my eyes being about half open as I type and everyone making sandwiches for dinner.  Unusual, but we are all dragging tonight....and processing.

We pulled up with minutes to spare.  We couldn't park in the parking garage, because well...the Mobile Ark (chuckle).  It worked out well though, we pulled in beside the beautiful new park the hospital has for the children.

Checking in went smoothly, though I had to wade through some serious paperwork for Timothy (since he was a new patient).

We were called in to the "Trophy Clinic" (every clinic has a little symbol).  The room filled with doctors for Jael's check-up and Timothy's big diagnostic appointment.

The doctor looked up at me and said, "He has Arthrogryposis."  This is something we suspected, so not much of a surprise there...and they did what we had been waiting for.  They ordered MANY x-rays.

Timothy was a bit concerned, but he was SO patient through all the x-rays.

The results were not exactly as we had expected.

Here's the rundown.

Many of Timothy's joints/bones have issues, which we knew. He's VERY functional though (and precious). We are being given a referral for his hand (to a specialist).  They will decide whether surgery to straighten it will bring greater use.

His hips are out of socket, both of them.  Typically a child has surgery as a baby and it usually is very successful.  Since they were left untreated for four years (and after looking at the x-rays) surgery could very likely do more damage than good.  They are leaving them out of socket at this point.  (We still have many questions.)

Deep breath...the next was hard to hear.  Though they are casting Timothy's feet, it will most likely not be for the reason we've hoped.

It was another if...
IF he had casting (and possibly surgery) as a baby, the outcome would most likely be great.  He didn't.  The casting is (most likely) just going to change the angle of his ankle some.  Most likely they will have to amputate his feet and fit him with prosthetics so he can walk.

I will be honest.  This brought a wave of emotion.  Since the video of him walking, this was taken off the radar.

I felt a bit like I was on a rollercoaster.

I felt (and feel) so honored to parent Timothy. He's such a gift and it blows me away the Lord chose us to walk through this with him.

I was mad, just plain angry. None of this had to be this way. I'm wasn't angry at any specific person, but that children have to have their feet amputated instead of treated early...that my son has to live with his hips out of socket (at least for now). 

I was sad. We expected amputation a possibility before the video and sending it to the doctor. After the video came, we actually thought, "Wow, I bet you surgeries and casting may fix this." It's not that amputation surgery scares us.  It's that it wasn't on the radar.

Finally, I see how people have been woven into the tapestry of our lives for just this moment. It's such a sweet joy.

I reigned it in.  I was surrounded by beautiful happy kids and they didn't need to see this processing.  They are amazingly matter of fact about the whole situation.  They know we are all made differently and there is blessing in that.

The appointments ran so long (and we still had another appointment for Jael) that we had to eat at the hospital.  We found the least expensive and had brought our walking cups again.

Then I heard it.  For the first time we heard a Christian song playing at the cafeteria.  We've been there many times....MANY, but this was the first time.

God is a wonderful Father.

Trust In You by Lauren Daigle

Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less.

The next verse is this...
When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Here's the thing.  God has moved mountains and parted waters to bring Timothy home.  He knew this would be ahead of us.  God is not surprised.  He brought Timothy home to a place where he could meet some wonderful doctors and get treatment.  He gives Timothy his testimony.  He creates us beautifully different.  

The kids hurried through their food in order to have time to go to the hospital's park.

This was like a pirate ship almost AND a teeter totter.

He looks mad.  He wasn't.  He was Spiderman.

The gamut of emotions I put aside, though they were just under the surface.

We still had one more appointment.  Jael was getting her new prosthetics with a new suspension system.  They did a beautiful job making them and she was SO proud!!!

She also had light up shoes...oh yes...every little girl loves light up shoes (wink).

We finally loaded up the car as we blasted the local Christian radio station.

Tears finally filled my eyes, though until I was alone talking to Thomas they didn't break through.

Big picture, our son is healthy...he's happy...and big picture everything will be okay.  Until that picture settles in, we process.  We find joy in God.  I told my husband today....

"The gift of our kids is like two people rummaging through the trashcans of sin...slimy nasty, dirty...and God taps you on the shoulder and hands you a diamond and says, 'Take care of this.' "  We are all sinners.  We blow it royally.  We all walk this world saved by Grace.  Yet God saw fit to let us parent this beautiful diamond.


"You have searched me, Lord,
    and you know me.
You know when I sit and when I rise;
    you perceive my thoughts from afar." Psalm 139:1-2


  1. God knew when Timothy needed you, and he sent you "for such a time as this". I know how difficult it is for you to see your son suffer, but this timing, too, was in God's perfect plan.
    Thank you so much for the update!

  2. I love that song by Lauren Daigle. Its's so appropriate for this situation! I'm sorry things didn't turn out quite as you had hoped, but I know you will get through it. Timothy is blessed to be part of your family!

  3. No idea if this will be helpful or not ... I'm just a faithful blog follower, not a medical person ... but maybe a 2nd opinion would reveal a different approach for Timothy's feet? Just can't help but think of Conner Patterson (adopted from Ukraine at age 6 w/ club feet & casted, now he walks - see Feel free to ignore this, as I certainly understand the boys' diagnoses may be too dissimilar for such a treatment comparison. Blessings to your family!


In the joy of following our Heavenly Father, we sometimes choose to proceed with a whisper, a verse, or a downright matter how we follow Him, the momentum that follows is like nothing we've ever experienced before.

Join the is a beautiful place to be. It's not always easy, but then the best things never are.

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