It was the
23rd 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
23rd 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
