Looking Back to Look Ahead

2012 was a really rough year for our sweet Toby.  In some ways, I was so thankful to say goodbye to 2012; and greeted 2013 with open arms.  Over the past month I've been going back and reading Toby's caringbridge site from start to finish.  The main reason has been to organize all of his medical information - I've been typing up spreadsheets by year - recording every doctor visit, test, x-ray, ER visit, diagnosis, surgery, hospital stay, therapy session, nursing visit, etc.

Am I crazy?  I just might be.

It's actually been therapeutic and helpful to organize all the information.  This way, I'll have it on hand for that next surgery or doctor's appointment.  It's also been amazing to see how far God has brought us - and Toby.

It's also difficult to look back.  After we've had a rough spell, I prefer not to stop and think about what happened or how bad it really was or could have been.  It's time to look to what's ahead - keep moving forward.  I remember seeing this saying on a runner's shirt that said, "Never look back unless you are planning to go that way."  (Henry David Thoreau, I believe).

The reality of Toby's next surgery is starting to hang like a dark cloud over my head.  We are anxiously awaiting the call from the doctor's secretary to give us a surgery date.  Over the past two months, I've blissfully been in denial and able to put it out of my mind.  Toby's back is healed, and so I have chosen not to think about what's ahead.  Just the other day Toby said, "Mom, I just wish my back was straight again."  I want it to be straight too, I'm just not ready to live through another surgery, hospital stay - I want to be on the other side of April, well into May or June looking back and seeing a "whole" Toby again.  I get weepy if I think about it too much.

He's been so independent these past few weeks.  We have been blessed with a wonderful new day nurse that is patient with Toby.  She includes him in his care - he is learning to do his own trach care, g-tube care, cathing, etc.  He's getting dressed and undressed on his own (well, when he's really motivated).  He's using his transfer board - getting in and out of bed to his wheelchair and back again.  It's been wonderful.  This surgery is going to change all of this.

Lately, I've been hearing Toby say this, "When I get bigger and don't have my wheelchair anymore, I'll be able to ________ (do such and such)."  He thinks he'll out-grow his need for his wheelchair.  He also thinks that every surgery he has will fix his body so he can walk.  Some days, I gently explain that on this side of heaven, he may never be able to walk on his own - he'll always need braces, a walker, etc. Other days - like today - I just let it go.  I don't like shattering his view of reality, life will do that to him soon enough.

Here is a picture journal of our fall.  Warning - there is a very graphic picture of what Toby's wound looked like below, so you may not want to look ahead if you have a queasy stomach or can't handle the site of blood/flesh. 

October 23rd, 2012 - Spinal cord untethering.

November 13th, 2012 - First VEPTR Insertion

Look at that boy - so straight and tall

November 28th, 2012 - Wound Vacuum Insertion (Warning - graphic photo of progression of Toby's wound from beginning through healing process)

 (Left to Right) 1.  Wound right after they removed the rod and took cultures 2. Wound with the vacuum attached.
3. Healing  4.Completely healed

December 11th, 2012 - Left VEPTR popped off rib cage, then surgery to remove all rods.  I've never seen him in that much pain.  He could barely make it every 4 hours for the next dose of narcotics.

I have no idea what this next surgery is going to hold for Toby or for us.  I know that God is God yesterday, today and tomorrow.  He already knows and is faithful.  Today, I am taking the time to look back and focus on God's faithfulness, and how He carried us through - knowing that His character does NOT change, and He will carry us through whatever lies ahead.