I posted this once a couple of days ago for about an hour, then I thought better and unpublished it.  I was afraid it was a little too intense.  So I pared it down and here it is.  Hope it's not too 'in your face.'  But it's my truth - for what it's worth.  :)

I wanted to share part of a letter I just wrote to a friend.  She is drowning under the strain of a special needs child and a husband who left her.  I can't imagine the stress she must be under!  She wrote that she struggles with the Lord in all this.  I'll leave out her personal details, but wanted to share my response because I think this stuff is universal.  And I think pain is pain is pain.  And we are all in this together.  So here's part my letter, and part some additional thoughts I wanted to share.  This post may not be for everyone....but I fell it may be for a specific few who are struggling like my friend....and like me.

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Hi there.  Yes, I know what it feels like to pray - and only have the prayer answered in the opposite.  Those are the times I shake my fist at God - rant and rave - and feel the most frustrated.  There was a stretch that I was getting NO sleep.  And I mean *no* sleep.  It was weeks.  I remember praying so hard - and having everyone I know pray so hard - just that Cody would simply sleep through 1 night.  That's all I was asking for.  ONE night's sleep.  Yet it seemed the more I prayed, the worse his sleep got.  It baffles the mind, doesn't it? 

It is mind-bending trying to sort this through spiritually.  And I really have stopped trying.  I have no secret really - I think I just got tired of the tug of war with Him.  It was more exhausting being mad and running FROM God than simply crying out (and running) TO Him instead. 

You are right, our kids dont' deserve this.  We don't deserve this.  We didn't ask for it.  It sucks.  But the thing I try to remember is......life stinks all over the world for lots and lots of people.  I am not the only one in pain.  People in 3rd world countries would consider my life HEAVEN - they have sick children but no healthcare....no food....no roof.  And I don't say that in a trite way.  I seriously do think of those people often.  I know a boy in Nepal who has severe epilepsy and have referred to him on my site (his name is Buday).  Both his parents died - so hen wound up homeless and on the streets.  When he seized (as Cody does) he simply careened into the gutter - battered and bruised from the fall - and when he recovered he has no mother to hold him.  He has no father to provide for him.  He had an empty belly, and no future.  He would give ANYTHING to have Cody's life.  For him, it would be a fantasy to pick up the phone and dial 911 and have an ambulance show up at his door!  Not to mention having medicine.  Or a mom to sooth his pain and pray for him.  I remember him often and realize that although this SUCKS (and boy does it!) -- I am lucky compared to 3/4 of the world.  People in 1/2 the world are holding dying babies simply cuz they can't feed them!  And it's true, Cody's diagnosis is dire, but within that we enjoy all the best medical care, the best therapies, clean water, a family who adores him, I could go on and on. 

And even beyond that....even beyond what's lucky and unlucky on this earth....I always try to remember that THIS is not my home.  These perils will end - and I don't say that in a trite way either!  When you face death on a daily basis with your child, there really is no such thing as 'trite'.  But this crushing pain of watching Cody suffer here on earth WILL be done and WILL give way to spending an eternity with him where there are NO seizures!  I WILL hear his voice!!!  We will run together with no feeding tubes, no hospitals....I will finally be able to know him on such a deeper level.  That reality used to provide no comfort to me.  But the deeper I get into this journey, the more I see how fallen this world is, and the more I really do feel encouraged and bolstered by the thought of Heaven.

I think as a Christian I was so spoiled into thinking God is santa claus - that somehow it's His job to make my life easier, better, more comfortable.  But that is not His promise.  He conveys full well in the Bible that this world is not our home.  We are the mercy of illness, faulty DNA, crime, horrible people making life altering choices, etc.  And that's all a result of the fall when Adam and Eve rebelled.  Humans chose this lot, not God.  He allows what we've chosen.  And He promises NOT that He will necessarily change our circumstance, but that He will be IN it, WITH us, REDEEMING it.  And the ultimate redemption will be when we get to Heaven and are finally free and complete (like God originally planned.)

I know it's so hard here - especially without a husband to share that load. And I do NOT think God feels sad looking down on you, as you say.  I think He gives you a standing ovation on a daily basis.  You just don't feel it or realize it.  God is not a stern taskmaster waiting to chastize us for not being 'good' enough.  He wants us to realize we AREN'T good enough - and to drag our stinky rotten attitudes, bodies, and choices to the foot of the cross so He can begin that redeeming work in our lives.  I pray that your (and my) life circumstances DO change.  And hopefully they will.  But....they may not.  You may not get remarried.  Your daughter may not get any better.  She may get worse.  Cody could die.  Don could leave me.  I could get diagnosed with cancer.  Life is hard, and painful, and full of loss.  We can't waste our time being hacked off waiting for things to somehow resolve and get better.  True, some people have it 'easier' and that's confounding, isn't it!  Drives me NUTS!  But many have it harder too.  And that's God's business, not mine.  The Bible is very clear about not comparing. 

But I'm convinced that once we drag our broken hearts to the cross - lay them down - and daily do what it takes to be "IN" relationship with God (some days that means yelling at Him, other days crying to Him, other days praising Him) - only THEN can He begin redeeming our pain, our loss, and our circumstances for His glory.  And here's the great part - the REDEEMING part is a PROMISE in the Bible.  So we know it's just a given.  What we're going through WILL be redeemed.  He WILL exchange beauty for ashes, strength for fear, gladness for mourning, peace for despair.  It IS a promise - we just have to cash it in.  Without Him, there is no redeeming.  We are lost at sea, angry and bitter every day til we die.  With Him, we have the means to live victoriously - EVEN in this.  But living victoriously does not (necessarily) mean our circumstances will change.  That's the super dooper hard, stinky part.  They may change.  I hope they change.  But *if* they don't - is He any less God?  Is He any less in control?  If He chooses to continue to allow this - does that negate victorious living? 

I propose that we have 'victorious' living all wrong.  To us humans (at least to me anyway), living victoriously used to mean, being 'happy.'  In other words, being comfortable - not in pain.  Victory meant getting to that place where life was 'good' - which translated to being healthy, happy, having a stable job, and a good marriage, and kids.  But I am learning (pain stakingly) through this furnace with Cody that REAL victory.....TRUE victory....has nothing to do with my circumstance.  It has everything to do with loving, and being loved, by my Creator.  That love relationship is the victory.  And oddly, trials drive us closer to Him.  Which equals more victory.  Because the goal isn't to have this trial overwith.  The goal is more of Him in our lives.  

My goal used to be fixing Cody.  It still kind of is on a bad day.  But I was off the mark.  When that's my goal (fixing Cody) - I try to become God.  I try to control.  And thus begins the endless pursuit of doing this all MYSELF.  And the more I rely on me, the further away from God I get.  And the crazy part is, GOD is the only one truly capable of doing anything for Cody in the first place!  Do I really think I'm pursuing Cody's best if I (instead of God) am in charge!?!   

None of this is meant to be preachy cuz I struggle with this daily myself.  I am 'off' more than I'm 'on' in my walk with the Lord.  But you are loved, valued, and your life is meant to be LIVED - not given away to bitterness.  Mine too.  So hard, I know.  But there is more out there than anger.  Promise. 

love,

Shawna