Revisiting: How Eddie Died (The Sweet Escape)

I woke up sad this morning.  Not the can't-even-get-out-of-bed kind of sad but also not the mild variety that is most often cured quickly by a cup of coffee and my morning devotional.  No, I woke up alcoholic-y sad.  Irritable and discontent.  Forcing myself to be pleasant when really I just wanted to lash out at everybody even though the only available "everybodies" were all under the age of six.  I held it together and was a good mommy but it was a whole lot of work.

I can't cruise along at that speed or things are going to get ugly and I know it.  So I did my devotional.  It helped but not nearly enough.  I prayed and asked God for the next step.  And then the next.  And then the next.  I won't go through the whole rabbit trail but eventually He led me to my blog.  I opened up a new post but realized I wasn't here to write, but to read.  He led me to the most painful but most popular post of all.  After I opened it and re-read it, I realized that I wrote and posted it exactly two years ago today.  I smiled my most genuine smile of the day.  I love it when God does that... shows you that there are no mistakes and few coincidences... but a plan and a pattern that He has for you to follow and He'll lead and guide you every single step of the way.

I think He wanted me to read this to assure me that it is okay that I wake up brokenhearted sometimes.  That my weakness was permissible and God-glorifying since His strength is made perfect in human weakness.  For some reason revisiting the most painful day of my life has lifted me up rather than dragged me down and my heart is lighter, my irritability gone, my gratitude restored.

I feel He wants me to repost this and so it is in a spirit of obedience that I do so.  I hope it serves to lift someone else up today or perhaps even introduce someone to the glorious, gracious and unbelievably good Creator, the One True God, the great I AM, who I worship and adore.  So without further ado, here it is.  The tragic, triumphant end to Eddie's story and my testimony as to why I am able to live a joyful life.

How Eddie Died (The Sweet Escape)

Okay, so I know those of you who follow the blog regularly and don't know the story have probably been curious about this particular topic.  I am feeling brave this evening, the kids are napping, and I have had a Chai tea and an L-Theanine.  So here it goes...

In May of 2007, Phillip and I decided we could no longer afford the duplex we were living in so we moved out to a trailer his mother and dad own in Red Rock, Tx.  Red Rock is about thirty miles southeast of Austin and a mile north of the Middle of Frickin' Nowhere.  It was where Phillip lived when we met and I swore to myself I would never, never, never live there.  But, there we were.

The day we moved in, I set one foot outside of the car and a butterfly landed on it.  He sat there for a moment, slowly opening and closing his wings, and, I don't know why, but suddenly I knew.  With a deep-down, uncanny certainty that this was to be Eddie's last stop.  The site where he would shed the chrysalis of this life and fly away from me to the arms of the Lord.  I didn't share this knowledge with his dad.  Oogie-boogie stuff makes Phillip a little nervous for one thing and for another I did not want to rob him of any hope and joy for the coming time we had with our little man, however long it would be.

As the summer progressed, Eddie's liver disease worsened.  The TPN (intravenous nutrition) was necessary to sustain him, but it was killing his liver.  Soon his liver stopped being able to process it altogether.  Although he was getting enough calories pumped through him to be downright chubby, he was steadily losing weight.  His eyes and skin were growing more and more yellow.  The food he was eating was helping a little with the liver and nutrition stuff, but not nearly enough.  Still, these were happy days.  He was a normal twenty month old in every other way:  learning new words, learning to use crayons rather than eat them, dancing and playing.

Let me digress a moment to explain what I mean by "dancing."  He was mobility-impaired...all of the abdominal surgeries and issues had kept him from ever crawling much less walking.  But like his parents, Eddie loved music and he would wave his little hands and clap.  In our bathroom there was a vanity along one wall and a huge mirror above it.  One of his favorite songs in those days was Gwen Stefani's "The Sweet Escape."  It has a really catchy little "woo hoo, wee hoo" at the beginning and throughout and Eddie really got into it.   I would hold him up on that vanity, supporting his little hips, and he would sway back and forth and wave his "jazz hands," laughing and smiling at himself in the mirror.  It is one of my favorite memories.

In the first week of August, Eddie began to have fevers.  It had all the earmarks of a central line infection.  We faced a decision.  His last line replacement surgery had resulted in Eddie wanting to quit altogether.  The point of his central line was to deliver the TPN.  The TPN wasn't really working anymore, except to accelerate his liver disease.  Either Eddie could make it on the nutrition he ate alone or he couldn't.  The inevitable moment had come.  We scheduled a surgery to have his central line removed.

When we were admitted and Eddie had to put on a hospital anklet, he screamed like it had burned him.  It made me feel glad that this was, really, the last time he would have to be in a hospital.  His surgery was quick and easy and we were able to take him home immediately.  Everyone was so loving and supportive of our decision.  Our hospice doctor made sure we had oxygen support and pain medications and we went home.

Phillip and I were still praying for the radical miracle.  I still had faith for it, but, just as with the sinking certainty I had felt with the butterfly encounter when we arrived at our house, I felt that God's answer this time was "no."  For a couple of days, it seemed like things were going well.  Eddie was eating and interacting normally.  But things changed on Thursday night and by Friday morning it was pretty clear that the end was near.

That morning I still prayed for miraculous, radical healing.  Desperately, fervently, I prayed.  As the day progressed, though, and Eddie continued to decline, my prayer changed.  I gave God two options.  He could, as I had begged Him, radically heal my twenty-two month old son.  This option came with lots of promises.  Eddie and I would be on every television program telling our story and giving praise to God.  This was Option A and the desperate desire of my heart.  If that wasn’t God’s will, however, I helpfully supplied Option B.  If He was going to take my son home, He needed to go ahead and do it.  Now.  Not this slow, steady decline.  It was far too painful, both to Eddie and to me.  So, now God had it.  My acceptable two options:  a Lazarus-style miracle or instant death.

God wasn’t listening to me.  Eddie lost his sight, his eyes becoming soft and dry.  He stopped eating and drinking.  The hospice nurse came to check on him.  I asked her how long this could last.  Death was a funny thing, she said.  She could leave and immediately have to come back to declare him dead or this could last for days.  The word “days” resounded in my heart like a shotgun blast.  I could sit here at our bedside and be forced to watch, helplessly, as my child wasted away for days.

By this time, I had run out of words to pray.  In my desperation, I still reached out in faith.  I remembered that when Pope John Paul II prayed, he simply came into the presence of God and said one word:  “Yes.”  This became my prayer as well.  The nurse left around eleven p.m. and as I sat next to my tiny toddler, my heart breaking, I internally prostrated myself before God with that word on my lips.  “Yes.”  Your will be done, even in this.  Immediately, my agony was accompanied by a quiet peace.  The pain did not leave me but I knew that Christ was sitting right there with me as we endured this together.

At two-thirty Saturday morning on August 11th, 2007, I took a moment to be alone with God.  I washed the few dishes in the sink, talking to God.   “Thank you for Option C," I said.  "I don’t understand it.  I don’t like it.  But I know you love me and you love Eddie even more than I do.  So whatever this is, it’s for our good.  So, thank you and I love you.”

I walked back into the bedroom, looked at Eddie, and knew that he was gone.  In those few moments, his spirit had gone home.  I wanted the first words I said to be words of faith.  God’s peace enveloped me and enabled me, even with a shattered heart, to say, “Naked came I out of the womb and naked go I thither.  The Lord giveth and the Lord taketh away.  Thanks be to God.”

There is no moment like the moment your child dies.  Nothing more heartbreaking, nothing more surreal.  But God was with me.  He was listening to every single one of my prayers.  The shortest verse in the Bible is John 11:35.  It states simply:  "Jesus wept."  Even though He was about to raise Lazarus from the dead (and He knew it), when he encountered Mary's grief, He cried with her.  I think He did this so that we would know that at these moments, He weeps with us as well.  We are never alone in our grief.  Not in the moment that my son left this earth and not while I sit here, weeping, and write about it.  The Lords sustains me...and weeps with me.

Phillip and I called hospice.  We lovingly and reverently washed our baby's body and changed his clothes.  We placed him in his crib and covered him with a blanket.  It was impossible, but we did it.  We loved him and we honored him, both in life and in death.  When our hospice nurse arrived, her eyes were tear-stained but she smiled and said, "Our boy is free and he is flying."

She didn't even know about the butterfly on my foot back in May or that I had spent most of the day rocking Eddie and singing "I'll Fly Away."  She did know the truth, though.  That as hard as it was for all of us, Eddie was free.  He was running into the arms of the Lord.  Running!  Like a normal nearly two year old.  His stomach didn't hurt anymore.  He would never shed another tear.  He was perfect, whole, and home.

It was nearly dawn by the time all of the administrative stuff had been taken care of.  The van from the funeral home pulled away from our house just as the sun was breaking over the horizon.  It was a beautiful morning and a cool breeze was blowing.  Phillip and I sat down in the lawn chairs in our front yard and watched the sunrise.  We didn't say anything.  Really, when you've just been through what we had been through, there isn't a lot to say.  A butterfly landed on my arm, opened its wings a couple of times, and flew away.  There was so much ahead of us:  phone calls, funeral preparations, a new baby, and a lifetime of coping with grief and the loss of our first-born son.  But in that moment, I just watched that little butterfly fly away and felt peace in the assurance that my little boy was with his Savior.  That Eddie had found his own sweet escape, from all the pain, all the struggling, all the sickness.  That he was happy, laughing and joyfully showing Jesus how well he could dance.  

Heartbreaker

I love Pinterest.  In fact, I'm pretty much an all around social media junkie.  I can dwindle away countless hours in front of my computer screen or on my smartphone, liking statuses, pinning recipes I will never cook, and, yes, occasionally giggling at pictures of a grumpy cat or two.  For the most part, it is an addiction I have to reign in, a time suck that could and should be spent doing something more productive.  But it's not all mindless, time wasting fluffery.  Sometimes you can use social media as a means to offer and receive encouragement, to share joy, to teach and to learn.  To inspire and spread inspiration.

To this end I have a Pinterest board entitled "Motivation."  For the most part it is filled with diet and exercise stuff, which is not necessarily a good thing for this overly body-conscious mama.  But there is a smattering of pins on there that reach for a deeper kind of motivation.  One is a lovely picture of a woman wading through a river with a simple prayer printed over it.  It says, "Lord cleanse me of anything that breaks your heart."

I remember the day I saw it.  I thought, "Wow," and repinned it.  But I didn't pray it.  Because that is a scary prayer and scary prayers... well... scare me.  Despite what my love affair with running might suggest, I am not a masochist and that prayer is just asking for trouble.  That is a prayer you should not pray unless you really, really mean it.

I've been cleansed from a lot in my life.  I remember when I was first saved I memorized Psalm 51 which says in verse 7, "Purge me with hyssop and I shall be clean.  Wash me and I shall be whiter than snow."  There was a lot of purging to be done then.  God really had to wring me out and, unfortunately, I didn't learn my lesson.  I went back to most of if not all of my bad habits, and had to ask Him to do it AGAIN many years later.  I was a glutton for punishment, apparently.

Because to cleanse me, God had to break me down.  He had to smash my heart into a million pieces so He could put it back together.  He had to take a wrecking ball to my life, knock down every wall and strip me to the foundation.  It wasn't fun.  I am grateful for every excruciating moment of it since the final outcome was amazing and wonderful, but the process hurt.  Like childbirth, the miracle that follows outweighs the pain that led up to it.  Still, it doesn't change the fact that it hurt like hell.

So these days I do not intentionally sin.  By that I mean, I don't set out purposefully to do things I know I shouldn't do.  That is a vast improvement over my youth.  Additionally, I pray.  I read Scripture.  I attend church.  I even blog about my faith.  So, I'm good, right?  That should be enough.  I'll just hang out right here, thank you.

Unfortunately, it doesn't really work that way.  I mean, it could, if you want to live a life of mediocrity or, as Thoreau would put it, "quiet desperation."  But I don't want to.  I know an extraordinarily awesome life is available through faith in Christ Jesus and I want it.  I have experienced a taste of kingdom living and it has given me a hunger and a thirst for righteousness that outweighs my human desire for comfort.  Sri Ramakrishna cautioned, "Do not seek enlightenment unless you seek it as a man whose hair is on fire seeks a pond."  Well, at the risk of sounded too terribly corny, I'm on fire!

So a few weeks ago, I did it.  Right in the middle of my morning prayer time I uttered the words "cleanse me of anything that breaks your heart."  And I meant it.  Meant it so much that I was immediately frightened and added a quick codicil.  "But, please, be gentle."

What happened next is best summed up by yet another quote in this already quotation heavy blog post (but I can't resist).  As Margo famously said in All About Eve, "Fasten your seatbelts.  It's going to be a bumpy night."  Holy freaking heck.  If this is gentle, I don't want to know what rough feels like.  (Really, God, I don't.)  Apparently there is a still a lot of junk in my heart that breaks God's and He is drawing it out piece by piece, carving it out of me with a spoon and cauterizing the wound that is left behind.  I'm surviving, singing my praise songs, smiling through it while I feed and nurture this family, but let me tell you... it hurts!  On most days it's a good hurt, like the burn in your muscles that lets you know your workout is effective, but pain nonetheless.  And I have a feeling that I'm only at about a seven and God is going to dial it up all the way to ten before it's done.

The idea is both terrifying and elating.  Terrifying for obvious reasons.  Elating because, if I will endure it with faith and patience, rejoicing in every tribulation, at the end of it I will be more like Jesus.  I will have more joy, know more love, feel more power than ever before.  Things that used to defeat me will seem trivial and I will be better prepared for the next challenge that lies ahead.  God is changing my perspective, opening up my eyes to see wonder all around me, showing me that there is so much more to this life than the things I have treasured more than Him.  It's awesome... and unpleasant.

I had a hard night last night.  I woke up this morning full of resentment over the lack I felt regarding things I need.  I need a good night's sleep.  I need some cash.  I need some new clothes and new running shoes and large quantities of chocolate.  I need five minutes in which one of my children doesn't need something from me.  I need a break.  This morning was headed in a bad direction.

So I read my devotional.  And I decided to write this post.  I'll admit; it is more for me than for you.  To remind myself that I have all that I need.  That I asked for sanctification and that is exactly what I'm getting.  To call me back to gratitude for the blessings I have and joyful anticipation of the those that are to come.  To call my heart to worship the One who breaks it, only to replace it with something newer, better and more amazing than anything I could have imagined.      

Still Life

Like every other Texan in the state, I am loving this July cool front.  While temperatures in the 80s may not seem particularly cool to my friends in northern climes, down here this is some exciting stuff.  So, like every other runner in the state, I have been taking advantage and going on some amazing runs.  I ran an 8 miler last Sunday that was itself something near a religious experience but that is the topic for another post.  This morning (in the wee hours... my two month old has just drifted off again after a 4 a.m. wake up call/feeding) what is on my mind are moments.

Yesterday evening I ran three miles through my neighborhood park, coming to the top of our one and only small hill just as the sun was setting over the lake.  Okay, it's more of a pond but we call it a lake.  It was a beautiful view, the water still and pink, contrasted against the darkening backdrop of my admittedly suburban  neighborhood, street lamps and lighted windows beginning to shine in the deepening dusk.  As I descended, I spotted a crane wandering into the water and as I passed it took wing, flirting with its reflection in the rosy water for a few moments before taking fully to the sky.  I was entranced by the present moment, taking a mental picture.  Still Life with Crane.  Or something like that.  I breathed deeply and praised God.  I wanted to remember that moment forever.

I want to remember this summer forever.  Time passes so quickly and the moments you think will always stay with you sometimes fade.  I look back on my life with Eddie and can pick out a few dozen memories, a few snapshots frozen in time.  The rest, the vast majority of those two years, are a kaleidoscope of feelings and impressions, a mash-up of memory, a collage rather than a still, strong image.  That's okay; that's the nature of life.  But sometimes I just want to take a moment and save it forever.

This is the summer that Baby Boy learned to ride his bike without training wheels, took off and never looked back.  It's a summer of four-square and popsicles, of running outside to catch the ice cream truck and running through the sprinklers in the back yard.  When Baby Girl learned to write "Mommy" and left me precious little notes all over the house, the rest indecipherable swirls and arches but that one word standing out strong and clear, reminding me of who, by the grace of God, I am and what it means to my children.  Of strong, tanned arms and legs and strawberries on knees.  Of all five of our living children under one roof, the sixth one felt even if not seen.  Of big sisters making little ones shriek with laughter.  Of popcorn and Disney movies, Golden Books and Legos.  When the Chipmunk joined this jolly crew and we learned that joy goes up to eleven.  All of that, so much more, and it is only the third of July.

Nothing spectacular by the world's standards has happened this summer.  No one has won the lottery or appeared on television.  No trophies or awards.  Just a whole lot of happy little moments, already swirling and blending into the greater pool of memory.  But this morning, as I retrieve my little cat-napper from his swing and earn a full throttle Chipmunk smile for my efforts, I just want to celebrate the moments, this present moment, and look forward to the next one to come.