the Way.

It was the 23^rd day of January in 2006.

My younger son had had a “good” day the day before.  He was living on the pediatric bone marrow transplant wing of Duke University’s hospital in North Carolina.  He’d been having some pretty serious unexplainable complications from his transplant for a few months. 

We’d recently been told that he had stage 4 GVHD, meaning that his transplant was rejecting him, wreaking havoc inside his beautiful little boy body. 

We’d also been told that it appeared as though his liver might be failing, but they weren’t sure. 

They’d done a liver biopsy and put in a drain tube to help relieve him of some of the trapped fluid in his overly swollen tummy. 

He’d been having trouble breathing from all of the fluid he was retaining.  Most of his days and nights were spent breathing through a C-Pap that was too big for his tiny, delicate face. 

And yet the day before was so precious to us. 

He’d been able to breathe without any help from the C-Pap, so we’d been able to hold him and even walk him down the hall, using his Baby Bjorn for the first time.  It was such an amazing experience, holding that perfect little body close to mine again, being able to leave his room and show him off to all the other families we’d gotten to know so well. 

We were going to make it! 

We were going to be able to move back home and be our little family of 4 again! 

My older son would finally get to experience simply being a big brother. 

My younger son would start to smile again…we hadn’t seen that bigger-than-life smile for two months. 

He loved to smile.

And then the 23^rd came.  He was doing well one minute…and then he wasn’t.

My husband and I, our primary nurse, we worked with little man for hours.  Thankfully, Asun came to visit…a perfect day to come…we needed help.  Someone had to watch our 3 year old son while we fought for our 7-month-old’s life.  She lived nearby and was a member of a local church.  That’s the only connection we had.  She simply knew we were hurting and had worked to be there for us. 

She was there that day, that dreadful, horrible memory.  She watched our older son for as long as she could…hours I’m sure, but had to leave. 

And then it happened. 

He could fight no more.  Our little boy’s body had used every ounce of strength it had.  He was too tired to breathe anymore.

………We were flying down the hallways of that place I almost can’t stand to think of anymore.  I grabbed our social worker as we fled and begged her to watch my older son.  My husband was at baby boy’s head.  Someone handed him the ambu bag, a bulb used to manually pump air into someone’s lungs during respiratory distress.  It was his responsibility to pump each breath into his precious son’s lungs as we raced through each doorway, down every hall, passed the elevators, and into the dreaded Pediatric ICU. 

The team was frantically trying to keep him with us.  I remember the bed running into walls, my husband briefly being separated from the bed’s head and seeing him squeeze himself through spaces far too small for his athletic build to pass.  I think he could have gone through anything if it meant being able to give his son one more breath.

We finally made it to the PICU. 

They took him into a room. 

We had to stay outside. 

We fell into the provided chairs as a defeated, shaking slump. 

The doctor came and told us it wasn’t good.  They could put him on the oscillator but they’d need our permission. We didn’t really know what that meant…never even heard of an oscillator.  I remember us asking what would happen if we didn’t. 

The doctor said it was probable that he would die tonight. 

What?  How is that possible?  We’d just been enjoying his improvement the day before! 

The doctor said we had five minutes to decide. 

My husband’s hand was holding tight to mine, the cruel fluorescent bulbs shining bright in our eyes. 

We had no idea what the right answer was, but he couldn’t die!  No! 

Five minutes was an overestimate.  Someone came out immediately and said, “It’s time.”  The doctor looked at us; two horrified young parents, and said, “You have to decide right now.  Right now.”

“Do what you have to do,” was what seemed like our only option of a reply.

We were asked not to stay there while they worked, so we went back to get our 3 year old son.  He’d been pretty upset while we were gone, sensing something terrible was going on. 

We took him into his brother’s transplant room, the bed now missing, and I reached for the phone to call my mother. 

My precious little boy began walking in circles in the now empty space of the room…slowly at first but gradually getting faster and more agitated as I tried to choke out the events of the evening to my mother.

Suddenly, there came from his little throat the most wretched scream I have ever heard from anyone.  I quickly hung the phone up, running to wrap my arms around my little boy who was a big brother.

“They took him!  They took him!”  That’s all he could say.  Over and over and over.  This went on for way too long.  Someone had taken his baby brother and he knew it. He wouldn’t rest until he could see him again. 

Eventually, we all got to see him again.  They warned us it might be upsetting…upsetting?  Are you kidding me?  Let me see my son! 

There he was, lying in that adult-sized bed, being shaken continuously by the oscillator pumping tiny breaths for him.

 They said he’d be sedated and wouldn’t know what was happening.  He knew. 

When he heard our voices he tried to open his eyes and cry.  A small pitiful high-pitched whimper came out. 

There was a tube going through his mouth, down his throat and into his lungs. 

No sound was supposed to be able to come out. Our boy always tried to stretch the boundaries though. 

That night we would still be allowed to sleep in our old hospital room.  My husband was going to stay with our son in the PICU, no sleeping allowed. 

Before I left, I looked at my husband, searching for something to make it all better.  For the first time in my life, I was angry…with God.  I had given Him my life!  I had believed He would heal my son!  I had been mocked for Him.  I had made sacrifices!  How dare He betray me like this! 

With a trembling voice, a set jaw and fire flying from my eyes I said to my husband, “How could God do this to us?  We’ve been faithful to Him.”  I could barely draw in a breath. 

My husband, weary from the battles of the day and his crumbling heart, looked up into my steaming eyes and so, so quietly whispered, “Don’t do that, Susan.  We can’t do that.” 

What?  He wasn’t with me in this?  I knew he was right, but I couldn’t seem to find anything to stop myself.  So I shut-up.  He was right.  I couldn’t argue with that.  He’s always been strong.

But my heart kept rumbling.  It thundered, ranted and rumbled some more.  For days I couldn’t find a place for the ugly things I was feeling. 

My thought process went something like:  I am so mad at God.  He has utterly betrayed me.  I just want to turn my back on Him right now and never let Him have any of my heart again.  But then I’d remember that eventually it would come back to bite me.  I really didn’t want to go to hell.  I really did want my son to trust in Him.  But I couldn’t have both.  Oh, if only He weren’t in control of the entire universe! 

I didn’t know what to think.  I definitely couldn’t pray.  But the Holy Spirit didn’t leave me there.

I looked over at my shaking little boy lying on the giant bed in the mostly dark room surrounded by IV pumps.  He needed me.  He needed the “me” I wished I could be, the me that unconditionally loves the one true God, the one who puts righteousness over everything else.  But I wasn’t her.  I was ugly on the inside, angry at the very One who’d made me and my loved-family. 

I’d have to pretend at least, so I could help him get well.  I opened up my Bible to Joshua, which I’d been reading to him because it was his middle name. 

“Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.” (1:9)  Oh Please!  Nope.  I wasn’t ready for all that yet. 

I stopped and flipped over to Psalms.  “Have mercy on me, O LORD, for I am weak; O LORD, heal me, for my bones are troubled. My soul also is greatly troubled; But You, O LORD---how long?” (6:2-3)   Really?  Can you talk like that to God?  Oh yeah, I remember.  I used to do that.  Huh.

I began to read out loud, trying to use words to strengthen my frail son. 

He frequently cried, which seemed to irritate the vibrating oscillator, but when I’d read…peace. 

He’d quiet down, listening to every word.

We went through the entire book of Psalms, all 150 of them.  The hardened walls of my stony heart began to crack a little at a time.  Somewhere in the middle of those precious Psalms, my rock of a heart was replaced with softness. 

Those Psalms taught me how to cry out to the Lord in a way that pleases Him. 

They taught me my boundaries as a believer in a traumatic situation. 

I was allowed to feel the agony.  I was allowed to beg for healing.  I was allowed to ask for God to demolish the source of this sickness. 

I was NOT allowed to stand against God Almighty. 

I was NOT allowed to even live one minute out from under His authority.

So my efforts to be what my son needed ended up being what the Holy Spirit used to bring me to my only comfort…the realization that, though everything in my life seemed out of control, God had complete control over e-ver-y-thing.  I might feel out of control, but feelings can change. 

 God never does. 

So there’s a little of my history. 

Obviously, it didn’t all stop there.  It got much worse.  But this is the story of how God pulled me back to Himself. 

It continues even now. 

We all have different stories…some worse and better than others.

Maybe you can learn from mine…not make my same mistakes. 

Maybe you have made my same mistakes or worse. 

There’s a Way out.  We’ll find it together.

“…I am the way, the truth, and the life.  No one comes to the Father except through Me.” (John 14:6) 

Much Love,

Susan