This is my goofy little one - who is constantly looking for things to crawl into.  Today he managed to make it into a cereal box.  Quite proud, he was.  What a nut!

I spent the last few days trying to sort thru and organize Cody's medical records - all 4 years of them!  They had become stacks and stacks (and stacks) of a disorganized mess.  I crave order, but rarely get it.  And this is one area that really needs to be in shape as I am constantly faxing medical records here and there.  So tonight I went thru 4 years of Catscans, MRI's, EEG's, labs, clinic notes, etc.  I think Cody's logged about 5 MRI's, 4 PET scans, dozens of EEG's, a lumbar puncture, a muscle biopsy, an endoscopy, G-tube surgery, VNS surgery, the list goes on and on.  I made files for all of our country wide trips to see experts....Detroit (twice), Oregon, Arizona.  I felt my temper flare as I went through our Arizona folder.  We went there when Cody was just 18 months old to see an expert at the Barrow Neurological Institute.  The #1 recommendation he wrote was:  'get muscle biopsy for suspected mitochondrial disease.'  I will never forget arguing with our Neuro in Portland when we brought him the report from the Arizona expert.  The Oregon neuro said he would not perform a muscle biopsy as it would be a waste of time because Cody did *not* have mitochondrial disease.  I pleaded.  I brought it up a couple of more times.  Then I relented since the Oregon neuro was the only epileptologist in the city and I didn't want to make him mad and lose him.  Lo these 3 years later it turns out (after a muscle biopsy that our wonderful Seattle neuro agreed to) Cody DOES have mitochondrial disease.  Grrrrrrrrrrrrr.   

Then there was the gastro Dr. in Portland who treated Cody for reflux for months - only to find out in Seattle that it wasn't reflux - but 'rumination syndrome.'  Grrrrrrrrrrr again.  I know that everyone's imperfect, even doctors.  But it's so hard to see mistakes made at your child's expense. 

So there I was, sorting thru these 4 years of records, remembering it all.  Feeling it all - anger, sadness, exhaustion at all the tests, appts, searching for answers.  And ultimately I simply said, "Lord - I give you this 3 foot tall stack of records.  I give you the past - including all the mistakes the medical professionals made, and the mistakes I made.  I give you the future - including the mistakes that will probably still be made by all of us.  This world isn't perfect.  The medical system isn't perfect.  And I am not the perfect advocate.  I give you it all and ask You to work with......and in spite of.........all of it." 

If I don't release stuff like that, it will drive me crazy.  I literally have to let it go - or else be tormented by it.  Four years of nothing but constant Dr's and sickness.  I forget the depth, height and weight of it until I see it all represented in these records. 

In the midst of all my filing, Cody was going ballistic because he's wanted to go outside every second all week long.  I had taken him out several times already today, and it was dinner time, yet he was clamoring at the door making the sign for 'open' over and over.  Casey was here and I had a helper to boot.  I almost asked her to take Cody out but decided to do it myself because she had been really working hard all day and I didn't want to ask for too much.  So off I went - putting Cody in his stroller - getting his shoes on, a blanket over him.  

And here is where the rubber meets the road for me in this journey with a sick child.  Here is where I survive.  I am learning (very slowly) what I need to do to keep from being bitter, stressed, overwhelmed:  As I headed down the driveway with Cody, I felt myself beginning that spiral into 'poor me' thoughts.  "It's dinner time, I should be in there cooking.  I have someone in the house who could be doing this - why am I so fearful to ask for what I need?  Why am I such a doormat?  Why does Cody have to scream non-stop?  The last thing I want to be doing at 6pm is pushing this stroller for the 10th time today around this block!  I have so much to do!" 

That was my line of thinking.  And every so often I catch myself and realize what I need to do.  So.....I decided that if I'm going to be going on this walk.....which I obviously was.....I needed to change my cruddy attitude.  So I instead prayed, "Lord.....I will trust that even though I don't want to be here.....even though I don't want this lot......I trust that You will show me the good in this.  I trust You'll show me the good in this walk.  Show me where to find it.  Lead me to it.  Because You work all things for good and I want to get in line with that...even in this walk around the block." 

That prayer has been my secret weapon.  And it has never failed me.  When I choose to ask Him to direct me...to lead me to the good He wants to work through whatever it is I'm complaining about....I always find it.  Tonight it was my neighbor as I rounded the corner.  I hadn't seen her outside in a few months and she was walking her dog.  She was wearing a big black coat and hood - and as I got closer the hood fell back and she grabbed it and placed it back on her head.  I could see she'd lost her hair.  I didn't want to pry so I stopped and just said 'hi.'  I barely know her.  She said, 'sorry for my hair' and that opened the door for me to say, 'you look beautiful.  what's going on.....by the way?'  She went on to tell me she was battling cancer and had lost her hair to chemo.  She looked weary.  And yet in the midst of all she's going through, she kept asking about Cody.  She and I chatted for about 15 minutes about some very real stuff - it was a true connection.  We talked about the angel of pain and how "big" illness has both a blessing and a curse to it.  She was so dear, and so fragile, and so honest.  And having walked this road with Cody, I was able to instantly connect, instantly love, and hopefully encourage her as she did me. 

That's the formula I've found.  That when I get lost in my 'flesh' - I need to ask Him to 'lead me to the GOOD You are going to work through this.'  For He works ALL things for good for those who love Him and are called according to His purpose.  I would have hated to miss that conversation with my neighbor.  It lifted me up.  It reminded me that even on my block, others are going through big stuff.  I am not the only one.  The world does not revolve around me and my crisis.  This beautiful bald woman was so caring, and so compassionate toward Cody.  Here we were, two broken women sharing our lives for a moment on the sidewalk.  Something so mundane....yet so significant.  If not for Cody and my journey with him, would I have breezed past her?  Or said the kind pithy remark?  Would I just have felt sorry for her?  Instead, I see God's fingerprints.  He has tilled the soil of my heart so that a vulnerable woman battling cancer is my sister....a precious soul....someone who I came to care about deeply within minutes.  Was I capable of that before?  Doubtful.  As God narrows my world - as I am confined more to the home and more to the myopic world of Cody's illness - I (at the same time) feel myself broadening.  It's the weirdest dynamic.  My world has gotten so small, yet my heart has gotten so big.  My capacity to care has broadened and deepened.  My ability to connect with others has grown manifold.  And the more I seek the ways God is working this for good, the more they find me.    

So crazy, this ride!

That's it for now - it's midnight.   

With love, Shawna