Spina Bifida Awareness Oct 31 Owen's Story

Dear Life,

I was going to have Kumaka's Story be the final story, but my dear friend Jen asked if she could share Owen's Story on the 31st.  Because that is the exact date their life changed.  This woman is amazing (as are all of my SB warrior mama's).  Our boys are so close in age that we cruise this journey together...Owen is awesome.  One of these days we will have to get together with this amazing family. Here is there story:

My name is Jen.  I live in Indiana with my husband Eric and 5 kids. 

This is my amazing Owen.

6 years ago today.

6 years ago today we found out.

We found out our third child was a BOY!

And that he had spina bifida,

hydrocephalus

and

cleft lip and palate.

We named him Owen Mark right then and there.  His name means "Mighty Warrior".  And that is just what he turned out to be.

That was 6 years ago today.

October 31st, 2006.

_______

Yes, it was Halloween.  

I'll never forget the look of sadness on my doctors face as she told me "I'm so sorry."

With multiple abnormalities she said there was a pretty good chance we were looking at a chromosomal abnormality.

An abnormality that might be fatal.

We were shocked.

We were grieving.

The tears flowed for both my husband and me.

Nothing can prepare you for that moment.

When all the hopes and dreams you have for your unborn child change in an instant.

Yet in a way we were prepared.  

Prepared to lay those dreams and our fears at the feet of Jesus because of the other life-changing events we faced in 2006.

By GOD'S GRACE I was able to release my control of the situation to Him before we even left that doctor's office.  This still amazes me.

Let me back up.

________

In the spring of 2006 my husband Eric was diagnosed with testicular cancer.  We had been married 5 years.  had two kids.  Liam was 2 and Kate 9 months when he received his diagnosis.  Eric underwent surgery and 6 weeks of radiation that summer.  Eric's prognosis was good, but we would have to wait 2 years after treatments to even see if having more children would be possible.  

Between surgery and radiation God chose to give us a gift—a baby growing inside me (Owen).  Pregnant and mothering 2 toddlers with a husband undergoing treatment for cancer, to say my faith was tested would be an understatement.  But God proved Himself faithful to carry us through.  He taught me to trust Him like never before.  To trust Him with my present and with my future.  To hold MY plans with palms wide open.  I was learning to let go.

We learned how to trust even as the circumstances of our lives felt like they were unraveling around us.   

"'For my thoughts are not your thoughts, neither are your ways my ways,' declares the Lord." - Isaiah 55:8

_______

Then in August of 2006 my best friend, Kristin, received a fatal diagnosis for her unborn son at 14 weeks.  This was her third child as well.  We were due only 3 weeks apart and excited to go through pregnancy together and watch our kids grow up side by side.  Mike and Kristin named their son Noah. Kristin chose to carry him as long as she could—leaving each day of his life in God's hands, instead of "terminating" him as the doctor suggested.  They knew Noah's life was precious to God and it was not theirs to end.  

Each week Kristin received an ultrasound, and each week the doctor predicted Noah would not survive to the next appointment.  Watching our friends face such pain and heartbreak was agonizing.  We prayed and cried like never before, hurting for our friends.  Dealing with shattered dreams.  

It was so hard to understand why these things were happening.

Week after week our faith grew as we CHOSE to rely on what we knew to be true. 

Even in your darkest hour.  

Even when life falls apart.  

Even when He seems silent...

God is still God.  He is still on His throne. He does not make mistakes.  And you are not alone.

_________

Little did I know I would soon be walking a similar path as my friend. 

 It was with mixed emotions that Eric and I went into our first ultrasound at 25 weeks, just 3 months after Kristin and Mike's life-changing ultrasound with Noah. We were excited to see the little one growing inside me and possibly find out the gender.  But as I lay on the exam table, my heart ached for my friend.   Each time she saw her baby on the ultrasound screen she didn’t know if it would be her last.

It wasn’t too long before the ultrasound tech told us we were having a boy!  We marveled at our little one on the screen.  As the ultrasound tech continued to move the wand over my belly she was pretty quiet.  I asked if everything looked okay.  She said the doctor would explain the results.  I thought that was odd, since if everything is fine they usually say so.

When my doctor came in she was wearing pajamas and curlers.  (Everybody in the office was dressed up for Halloween. In fact the lab tech was wearing a vampire costume when she drew my blood!)  I will never forget my doctor's mussed hair, robe and make-up.  She was very serious as she put her hand on my knee, looked into my eyes and gently said,  “There are a couple of things I’m concerned about.  It looks like your little boy has a cleft lip and palate.”  

I took a deep breath.  “Okay, we can deal with this…” I thought to myself.   

“And it looks like there’s an accumulation of fluid around his brain and an opening in his spine in the lumbar region.  He has spina bifida.  With the presence of multiple birth defects like this we may be looking at a fatal syndrome like Trisomy... I’m so sorry.” 

I took another deep breath and slowly let it out, letting her words sink in. 

Fatal!  Was this really happening? To us? To our baby too? First Noah, now this?  How much more can we take? And just like that all our hopes and dreams for our unborn child are changed in an instant. 

______

In some ways, watching Mike and Kristin navigate the same uncharted waters with grace and courage gave us hope.  Mike once described it like being in a life boat in the middle of the ocean during a huge storm.  The sea is raging all around you, but you know your boat is anchored to the Rock—our Lord and Savior Jesus Christ.  Like Mike and Kristin, we were definitely strapping on our life jackets and clinging to our boat for dear life.”

We were in shock.  The doctor said she’d send us to see a specialist to confirm the diagnosis, but she thought it was pretty clear.  My thoughts were racing.  My heart broke thinking of what this would mean for our child, our son.  The tears came for both Eric and me.

One thing we knew for certain… God was in control.  He wanted us to have this baby… THIS baby.  And He does not make mistakes.  We named our son Owen Mark while still in the ultrasound room.  His name means "Mighty Warrior".  

I love the verse from John 9,  "As he went along, he saw a man blind from birth. His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?'  'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the work of God might be displayed in his life.'"

We believed God had a purpose. We trusted him.  Even in our pain.

The incredible part (that seems hard to believe) and the thing I remember most when I think back to that day, is the sense of peace that flooded over me.  

Through my shock and my grief I was able to release my control of the situation over to God before we even left the doctor’s office.  While I was heartbroken, I was not devastated.  While I was grieving the loss of “a perfect baby”, I loved him deeply. While I was uncertain of the future, I knew God was in control of it. 

I love this quote from Joni Eareckson Tada: 
“Heartache forces us to embrace God out of desperate, urgent need. God is never closer than when your heart is aching.”

_____

The next day the specialist confirmed the diagnosis of spina bifida, hydrocephalus, and bilateral cleft lip and palate.   He detailed a bleak prognosis and a life wrought with surgeries and medical interventions.  

This was the same specialist Kristin saw, and he told us he’d “give it 50/50” that Owen’s condition would be fatal.  We were at 25 weeks and he began to offer us information about where we could go if we didn’t want to “continue the pregnancy.”  We stopped him mid-sentence.  We loved this baby!   That was out of the question.  I was horrified he even suggested it.

Both spina bifida and cleft lip and palate are present in Eric’s side of the family.  We were not frightened or convinced by his morbid assessment of the situation.  

I asked if it was possible that Owen just happened to get both genetic defects at once.  He replied, “Well, I suppose it is possible to get shot in the back and hit by a bus in the same minute, but it’s pretty unlikely.”  (I still can't believe he said that!?)

Well, it turns out that’s exactly what happened. The doctor performed an amniocentesis, which came back with perfect chromosomes!  Proving my suspicions were true.  Owen just happened to get both genetic birth defects at once.  Both doctors were dumbfounded by this.  God is good.  

And He still would have been good even if the results had been different.

For you created my inmost being;
    you knit me together   in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place.
When I was woven together in the depths of the earth,
¹⁶     your eyes saw my unformed body.
All the days ordained for me
    were written in your book
    before one of them came to be.

-Psalm 130:13-16

______

We rejoiced that Owen’s challenges, while great, were not life threatening.  We knew we had a long road ahead but rested in the knowledge that God was in each step.  

In those early weeks we heard things like, “He will NEVER walk. He will NEVER be normal.”  Luckily we were familiar enough with these conditions to know NEVER was a pretty strong word to be using so early in the game.  We knew the doctors predictions could be right, but we also knew there was plenty of room for God to work miracles.  So we waited and prepared to welcome this special baby into the world.  

One of the best things we did was talk to a local Neonatologist.  He gave a much more realistic and practical explanation of what Owen would be facing in his first weeks, months and years after birth.  He was much more knowledgeable and current about spina bifida than the OB or the Specialist.   Still the questions were many and the answers were few.  It was hurry up and wait.

Waiting was hard.  There were more questions than answers most of the time.  We were forced to completely trust Christ with the situation.  But often fears and anxieties about the future weighed heavy on my heart.  Sometimes the struggle of getting through the day-to-day, let alone with two toddlers, was more than I could bear.  

It WAS more than I could bear.  This verse from Philippians (4:6-7) became so real to me during this time:  "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  I am so thankful for this truth. 

______

In the wee hours of December 14th Noah Scott Koning entered the world.  I was privileged to meet Noah and record this sacred event with photos for my friend. 

Noah was held and loved by his mommy and daddy for 1 hour and 42 minutes. 

Forever etched only in my mind, as I was unable to click the shutter, is the moment of pure heart break, of the deep soul aching sob, as Kristin buried her face into the body of her precious son when he left this earth.  

That night was one of the most defining moments in my life. 

I am grateful to have met Noah.  I will never forget him.  In fact, we chose Noah for the middle name of our fourth child, Zane.  He was born nearly 2 years after that December night, and his name offers another opportunity for Noah’s testimony to be shared.  

Noah’s life was brief.  Mike and Kristin’s pain was great.  In the eyes of the world, it was pain they went through pointlessly.  Why go through it at all?  After all it’s your “choice.”  But they believed Psalm 139.  They knew Noah was wonderfully made by God Himself just the way he was.  Though Noah's body failed him, God’s purposes for his life were perfect. 

I tell Noah's story here because to me it is inextricably tied to Owen's.  I cannot tell one without the other.  

______

One short side story.... "Rethinking Cliches"

In the evening after Noah’s memorial service Eric and I were at the side of two other friends who had just welcomed a perfectly healthy baby girl into the world.  The stark contrast from our experience just a few days prior at Noah’s birth was not lost on any of us.  

As I held that baby girl, celebrating and rejoicing with our friends, I couldn’t help but note the similarities as well.  Both these precious souls were deeply loved and anticipated and wonderfully made by God Himself.  It was then that one of our friends' family members, also visiting, asked me if we were having a girl too.  I told her simply we were expecting a boy, leaving out the heavy thoughts on my heart.  “Well,” she said, “I suppose it doesn’t matter anyway… as long as they’re healthy.”  The raw emotions of the last few months and days that were lingering just below the surface boiled over in a flood of tears.  “No,” I thought, “That’s not all that matters!  Every baby is precious and worthy of love no matter if it’s healthy or not!”   Of course that was not what she meant by her casual comment.  She was unaware of where my tears were coming from.  But Noah and Owen were changing how I saw the world.

_______

Just six weeks after she lost Noah, Kristin was by my side in Indianapolis for Owen’s delivery.  Such a selfless act of love for a friend was a Divine gift—one I will never forget.  It meant so much that she wanted to be there for me and to meet my son so soon after losing hers.  

Owen entered the world by c-section at 8:41am, January 26th. With a cry that brought me to tears.  He was wisked off to be prepared for transport through the tunnels to Riley Children's Hospital.  

The nurses let me touch him in the incubator as they wheeled us our separate ways.  None of this seemed real, like it was really happening.  It was a blur in many ways, but I reminded my heart to "take a picture."   Eric followed Owen to the NICU and watched the blur of activity around him as the staff evaluated and took tender care of our son.

The Neurosurgeon said Owen was stable enough that back closure could wait a few hours, to allow him to recover a little from the birth. I was able to see him around 2:00 that afternoon before he went in for surgery.  My mom, sister, Eric and Kristin brought me through the maze of tunnels in a wheelchair.  I was feeling surprisingly well after surgery.  Pure adrenaline, I suppose. 

Owen's back was closed when he was 8 hours old.  I am thankful Eric got one picture of his lesion before surgery for me to see. 

His shunt was placed when he was 3 days old.  And revised when he was 10 days old (the beginning of many more shunt revisions to come—6 total).

I got to hold him for the first time when he was 3 days old—on a pillow.  

Owen stayed 15 days in the NICU.  He came home to Liam and Kate with oxygen and a feeding tube.  And lots of tape!

_____

(His birth announcement.  Look at those legs kick!)

______

Owen’s name means “mighty warrior,” and that’s exactly what he turned out to be. God has time and time again proven His sovereignty over doctors’ predictions through my sweet boy. Owen has had 23 surgeries (14 surgeries in his first 13 months of life), and he faced them all with a smile.  God has been with us every step of the way.  

I will not lie, it is not fun to watch your baby suffer.  To help hold him still as doctors and nurses try repeatedly to get an IV started or to draw spinal fluid from the shunt in his head.  It is not fun to see your baby swollen and bruised from surgery.  It is not fun to watch your baby struggle to suck the bottle he wants so much, when there is no possible way for him to get suction because of his cleft palate. It is not fun to put a feeding tube down your baby’s throat everyday, just so he can eat.  

No, it has not been an easy road. But we would not change a thing. 

We learned to rely on Christ like never before.  And He has been faithful to supply our every need.  He was our comfort, when we couldn’t cry any more.  He was our strength, when we couldn’t go another step.  He was our peace when our fears and anxieties seemed out of control.  He is our hope.

Through all the ups and downs there was sweet Owen.  God definitely made him something special.  My sister used to say it’s like he can “turn himself inside out with Joy.”  He is our constant reminder of God’s goodness and faithfulness through any storm.  

God is Good.

But as for me, I will always have hope;
    I will praise you more and more.
 My mouth will tell of your righteousness,
    of your salvation all day long,
    though I know not its measure.
 I will come and proclaim your mighty acts, O Sovereign Lord;
    I will proclaim your righteousness, yours alone.

         - Psalm 71:14-16

______

So how are things now?  

A picture says a 1000 words, right?! 

I think I've typed too many already (sorry Tracy).  

You won't believe some of the things he has done!!!!   Praise be to God! Great things HE has done!

A doctor told me once, "Owen will be more normal than he is not."  So true.

_______

What I want someone just beginning on this journey that started for us 6 years ago today, is perfectly said in the lyrics to this song:

It's Gonna Be Alright

by  Sara Groves

It's going to be alright
It's going to be alright

I can tell by your eyes that you're not getting any sleep
And you try to rise above it, but feel you're sinking in too deep
Oh, oh I believe, I believe that

It's going to be alright
It's going to be alright

I believe you'll outlive this pain in you heart
And you'll gain such a strength from what is tearing you apart
Oh, oh I believe I believe that

It's going to be alright
It's going to be alright

When some time has past us, and the story if retold
It will mirror the strength and the courage in your soul
Oh, oh, I believe I believe,

I believe
I believe

I did not come here to offer you clichÈ's
I will not pretend to know of all your pain
Just when you cannot, then I will hold out faith, for you

It's going to be alright
It's going to be alright