Elijah's 16th birthday~

"I hope no one who reads this book has been quite as miserable as Susan and Lucy were that night: but if you have been--if you've been up all night and cried till you have no more tears left in you--you will know that there comes in the end a sort of quietness."  C.S. Lewis from The Lion, the Witch, and the Wardrobe.

This is how I feel.  I've cried hard and I've cried long...but over the years, the grief surrounding the death of my first child and only son has changed.  

A sort of quietness has come.   

I still cry over the loss of Elijah, but the tears are fewer and fewer and they rarely flow for long anymore.  The receding of grief has been a long, slow process.  Sometimes I've been concerned that the reduction in tears reflects a callousness or coldness in me...but I don't believe that anymore.  I think it's all part of the process.  My heart still hurts when I allow my mind to wonder about my son, but the pain no longer stabs.  

Much of grief's ache has been replaced by honest curiosity...I simply wish I could know my son.  I miss him, but I'm not able to share details and specifics about him that I miss simply because I never got to know him.  I still have more questions than answers, but I am more and more content with the truth that trusting my Lord is best and that He will one day allow me to see this loss with clear understanding.   

A sort of quietness has come.

Sometimes I wondered if I would survive it...could I survive it?  This Grief...this journey that so often felt impossible.  I could not avoid it, control it, nor forget it.  It didn't wait, it didn't mind its manners, it never played fair.  And I know it will never be finished this side of heaven.  But it has changed.

A sort of quietness has come. 

I have stared at it and battled it like the monster that it is.  Sometimes I felt strong, feeling the strength of the Lord coursing through me.  Sometimes I have resigned myself to it, weary from its constant abuse.  Other times I have felt equipped by it and have seen God's kindness and care in allowing me to share or minister to others.  

Through the years I have felt my Lord changing this grief.  I have felt Him turning it in His hands.  I have felt Him softening and smoothing it.  I have felt Him transforming it. 

A sort of quietness has come.

So, I bring you this idea captured in pictures.

Sea glass from my collection~

I love sea glass.  I have a small collection...much of it found along the North Carolina and Virginia coasts.  

I think it's the idea of Redemption that appeals to me.  Broken, jagged garbage drowned in an ocean.  The tossing waves and currents doing their hard work.  The jagged edges slowly worn down by shells and sand...and time.  And, eventually, a rare "jewel" produced.  

This is a picture of how I see my grief surrounding Elijah.  It is no longer dangerous.  It no longer rips and cuts.  This grief is softer now.  Every now and then I'm even hopeful that it could be considered beautiful.

A sort of quietness has come.  

But, let's be clear...it's not my work that has changed the grief.  It is the careful, thoughtful, relentless work of my Lord.  It has been Redeemed by my Savior...it's His story of Redemption.  

This journey...through this kind of grief...is still one that I wish I never had to make.  There is so much that I wish could have been different.  But I also see beauty. 

A sort of quietness has come.

I know my God in ways that I never would have otherwise.  I trust my God deeper than I knew I could.  

And I am thankful.   

Elijah in Daddy's arms~

Lately, God's had me thinking about the idea of Surrender...not resignation, not weariness, but precious Surrender...so I leave you with these lyrics by Lauren Daigle from her song "You Have My Surrender".

Here are my hurts 

Here are my doubts 

Here are the things that I can't figure out

Here are my storms, my crashing seas

Here are the burdens that have brought me to my knees.

Here are my prayers, my heart will wait

I will bind my will so you can have your way

Here are the things I can't undo

I am nothing, nothing without you

And I will take you at your unfailing word

More than all I want is to seek you first

I will bless your name when the night is long

God, you have my surrender.

Here it is if you're interested in listening~

If you're interested in knowing more about Elijah, go here.  Here's another bit of writing I did about fear grown by grief and freedom from it.

As always, thanks for taking the time to read...many blessings to you this year~

Rachel

When I Wished I Could End My Pregnancy

It was late into the night...probably early morning actually.

I had spent hours wrestling between crying, trying to sleep, praying, trying to get comfortable, begging for mercy...needing to flee from the darkness that threatened to suffocate me...yet only able to lie awake while I felt my baby move around inside me.

I was almost 28 weeks pregnant.

With a son.

Who was dying.

And I wanted my pregnancy to end.

Steve and I knew the medical prognosis for our son, Elijah, was zero chance of life outside of the womb.  Elijah and I had undergone two in utero surgeries to try to save him.  Steve and I had recently returned to CO from our surgeon in FL where we had gone to try for a third surgery to save our son, but we weren't able to have that surgery after all.  Our surgeon discovered that Elijah's kidneys had completely failed and there was nothing more (medically) that could be done for him.  (You can read more about Elijah here.)

But before they could release us, our doctor was legally required to counsel us that we could choose to end the pregnancy...to have an abortion.  It was the strangest thing.  We had tried so hard to save our son and now this doctor, who had already done two surgeries to try to save our son, was required to counsel us of our option to "terminate the pregnancy".  He himself does not perform abortions and the hospital that had cared for us does not perform abortions...I was thankful for that.  Steve and I even had to sign paperwork that stated we were aware of our "right" to an abortion, that we had been properly counseled.

The thought of killing Elijah horrified both Steve and I...there was no way we could ever choose that for our son or ourselves.

Yet here I was, in the middle of the night, wishing my pregnancy would end...begging God to not make me finish this pregnancy knowing the outcome.  Our son would not live, could not live outside of me.

And as I lay there with tears trickling down my cheek, I understood abortion differently.  I had always believed that abortion was the taking of a precious life...I knew it deep in my soul...a precious life.  That belief did not change.

But I also understood deeply that abortion was a decision made out of hopelessness.  A decision made in the middle of circumstances that looked and felt dark.  A decision made because fear was speaking and despair was strangling.

I was not an unwed woman.  I was not a victim of rape or incest.  I was not a teenager whose parents would be disappointed or angry.  I was not being pressured by my boyfriend who didn't want a baby.  

I was a married woman who had tremendous support from her husband...a husband who was as devastated as me.  I was a woman who wanted to be a mother.  I was a woman who had the loving support of family and friends.  I was a woman who believed in the Lord and His sovereign, mysterious ways.

Yet, I understood what it was like to want a pregnancy to end...to want my pregnancy to end. 

And God forever changed my perspective on abortion that night.  I do grieve for the babies.  We should all grieve for the babies.

But I also grieve for the women who made a drastic choice when they were searching for an answer.  I grieve for the girls who were hurt and turned to a tragic outcome thinking it would bring peace.   I grieve for the women who thought they had a solution to a problem they didn't want to face.   I grieve for the women whose abortions haunt them.

I grieve for the women who believed the lie whispered by fear.

I carried our precious son for another 10 weeks...he was born on January 5, 2001.  He lived for 100 minutes.  We held him, prayed over him, cried over him, sang to him...all he ever knew was our love and then the Lord's presence.  I shudder to think what we would have lost if we had chosen differently.  God gave us strength to face our "crisis pregnancy" and He gave us 100 minutes of memories with our Elijah...I am so very, deeply, forever grateful.

Elijah in Daddy's arms~

My husband has been very affected by the recent video releases concerning Planned Parenthood.  He called me from work one day just to say Thank You for carrying Elijah and how thankful he was that we had not aborted our son.

Thank you Lord for changing my perspective that dark night, for growing compassion in my heart, and for giving us your strength~

Many blessings~
Rach

From Faith to Fear...and Back Again~

Here we are again...the day my son was born, but no cake and candles to celebrate what would be his 14th birthday.  

Here we are again...the day of his death, the same day as his birth...painful...tears still spill...heart still hurts.

If he had a tombstone, there would be no dash between the dates...there were no days lived here on earth...only 100 minutes...only minutes~

Elijah in Steve's arms~

I've written about Elijah many times, but I haven't gone into great detail about some of the darker corners of my experience with grief...I thought I'd change that with this post.  This is a story I can tell because, by the glorious grace of God, I'm well on the other side now.  This is a story I can tell because my God rescued me...restored me...He is the Redeemer~
 
Faith is something that Steve and I felt like God lavished on us while I was pregnant with Elijah, during his birth and death, and even in the raw months afterwards.  It wasn't easy...at all...but somehow we survived.

I know it was and is God who made us survivors.  It was absolutely Him...left to myself I would have crumpled up and quit living.  But God gave us a desire to keep living, to protect our marriage, and to keep fighting for our faith. 

I don't know how to describe it other than sometimes I felt like it would dishonor God and our son's memory if I let grief overcome me...if I let it defeat me.  There was no way I was interested in letting death have the last say.

This doesn't mean that it was easy...it was hard and got harder.  In the beginning, I continued to feel and know God's closeness...His comfort...His protection.  Even in the desperate questions and pleas for understanding, I felt my Lord.  Even in the tears cried in the darkness, I knew His presence.

But somewhere along the path of grief, I lost my footing.  It was so subtle at first...I didn't even notice.  I was so determined to not let grief win that I began to rely on my own determination and will power instead of the faith that my Lord had provided.  

I began to linger over my questions in a way that caused me to examine every thought and prayer and to try to figure out what I had done wrong...why had Elijah died?  Did I not pray enough?  Did I not have enough faith?  Was I being punished?  Why did Steve have to suffer if I had caused this?  How can God be glorified when a baby dies?  Wasn't God all powerful?  Is it okay to be disappointed with God?  Wouldn't God have been glorified if Elijah had miraculously been healed?  Why hadn't He done it then?  What could God do that would make losing Elijah seem worth it?  Was I going to be a bad mom and Elijah was actually being spared from me?  Was I so horrible that this is what God had to use to change me, to refine me, to draw me to Him?  

And for me, the worst question to consider...

Who else was going to die?

Honestly, I think most of those questions and others that I asked were normal and not dangerous by themselves...I think they were part of the process.  What was dangerous, though, was how I began to reflect everything inward...how I began to accuse myself...and how I began to accuse my Lord instead of continuing to look to Him.  It was the subtle beginning of a very dark journey...an intimate walk with fear~

Before I go any further, I want to share that I was aware of truth and had a decent understanding of theology, but my emotions and my mind seemed to be disconnected.  I was aware that many of my thoughts were irrational, yet I couldn't seem to control them, let alone change them.  I was aware that my Lord is good, caring, honorable, compassionate, yet I felt like I had lost my ability to trust Him personally.  Also, none of this happened over night...it was a slow, painful struggle that was years in the making. 

The more I struggled with my faith, the more I dug in to things that I thought reflected a woman of faith...involved at church, involved in bible studies, etc.  I was also determined to keep living and enjoying life.  I love being in nature (and we lived in Colorado) so Steve and I spent a lot of time biking and hiking and enjoying God's creation.  I was determined to be victor in a strange battle that I thought I could control.

I began to struggle with prayer.  I thought my prayers didn't count or couldn't be heard or wouldn't be considered by God.  My experience told me I didn't pray well enough or long enough or earnestly enough.  If something was important to me, I asked Steve to pray...I knew my prayers were pointless.    

One of the ways I "controlled" my faith was to not give voice to the things that scared me the most...I never articulated the words that would reveal my darkest fears.  I was afraid my fear would grow if I acknowledged it aloud, so I determined to control it through silence.  I was afraid I would somehow cause my fears to become reality if I ever used audible words to describe the dark places my thoughts took me.

I was afraid Steve would die~


At first, Steve and I thought we wanted to try pretty quickly after Elijah died to have another baby, but then I decided that I didn't want to have any more kids because then I could control who else might die.  Another baby couldn't die if I simply didn't have any more.  I carefully crafted my pitch to Steve and presented my plan to focus on a career and the fabulous lifestyle we could have and all the amazing traveling we could do if we didn't have any more children.  Steve kindly listened and simply disagreed with my plan...he was kind and gentle as he told me we didn't have to have kids right away, but he didn't think not having any was a good plan.  I remember having a mix of emotions to his reaction...thankful for his understanding and gentle patience, yet worried because I realized how much he wanted more kids and I wasn't sure I did anymore.

September 11, 2001 changed much of how I felt about having kids.  When the attacks first happened, I was sure it was better to not have children who would have to grow up in this world.  But those events also caused me to consider what I truly valued and the possibility of more children became important to me again.  We became pregnant with our beautiful Isabella in the fall.

To say I was scared during that pregnancy would be an understatement.  We were so excited, yet I was very frightened.  My doctors kept an extra close watch on me during that pregnancy.  It was a tremendous relief when all looked well via ultrasound.  But that pregnancy also began another dangerous journey...I ate my way through my emotions...a destructive habit I'm still recovering from.

Isabella arrived in July 2002...her birth was an amazing experience.  It was both beautiful and overwhelming to walk out of that hospital with our new daughter...my arms full of love instead of empty. 

Pregnancy hormones are already a lot to handle...and postpartum hormones can be tough too.  I'm pretty sure hormones deeply affected some of my experiences and may have even exaggerated some of my grief.

I remember sometimes being amazed and delighted by Bella and then crushed as I realized even more all that Steve and I missed and would continue to miss with Elijah.  I would marvel at how she was an amazing blessing from God and then rage at God over the loss of our son.

I was deeply afraid Isabella would die too~

Here's an example of how strangely fear was gripping me.  The first time I flew with Isabella was beyond frightening to me.  I was afraid something bad would happen...even though I had never been afraid of flying before.  I specifically worried that the top of the fuselage would come off mid-flight and I wouldn't be able to hold Bella tightly enough to keep her from flying out of the airplane.  I spent time planning my holding techniques, trying to determine if I should keep her attached to me the whole time or if she'd be safer strapped into her car seat, wondering if a Baby Bjorn would be enough to keep her from getting sucked away.  And I was aware that this was all irrational, but I still tried to figure out how to manage this fictional situation.  It almost seems laughable now, but at the time, I was very serious.  Nevermind the fact that IF something like that happened, we were all going to perish anyway.

I stayed home with her for 12 weeks and then went back to work part time.  Part of me wanted to stay home with her, but another part of me was simply afraid of the responsibility of caring for her.  When I examined my track record of caring for my kids, the stats weren't very good...50/50 for keeping them alive.  I honestly thought she was in safer hands being cared for by someone else for part of the day.   

Sniffles made me nervous, colds scared me, and I barely held it together when Bella was diagnosed with pneumonia at 9 months old.  Any sickness caused panic and I took her to the pediatrician a lot.  I was aware that I was more afraid than would be considered normal, yet I couldn't make the fear go away.  Our pediatrician was very understanding and so kind.  When Bella turned one, I told her that I was aware that I was a very nervous mom and had decided to not bring Bella to see her for every little thing...she agreed it was a good idea.  A small victory in my battle with fear.

Isabella's bout with pneumonia had caused us concern...enough for me to plan to quit my job.  I gave notice and began staying home full time right before Bella's first birthday.  Another victory. 

But fear continued its ugly assault.  I became even more scared of Steve dying...I was especially worried about a car accident scenario.  I was afraid every morning when he went to work and every evening when he drove home.  If Steve was late getting home from work, he would find me angry instead of welcoming.  I was angry because I was afraid, but I wouldn't share my fear because I wouldn't speak about it because then it might happen.  Instead I would tell him he was inconsiderate and lecture him about how easy it would have been to simply use his phone to call me to let me know he was on his way or when he would be home.  I was angry because I had planned his funeral in the time I had waited for him. 

I began to think about death a lot.  I never felt suicidal, but I often wished I could die (or that Jesus would hurry up and return).  I believed Isabella would be okay without me...I didn't feel like a very good mom...Steve was (and is) an incredible father.  I wanted to be with Elijah and I just didn't want to hurt anymore.  I knew Elijah didn't need me...he was in heaven, after all.  It's strange to write about this because it seems really foreign that I ever even thought like this...I'm so thankful that God didn't leave me in the darkness.

And my struggle with faith seemed to just keep getting worse...and fears kept growing.  I was doing the things I thought I should be doing...still going to church, still attending bible studies.  At one point, I was even leading a bible study.  I felt like I was trying my hardest to get close to God again, yet He was elusive despite my moral and religious effort.  Questions constantly swirled in my mind and I felt like answers never came.  I did not feel at all like I was being fake...I honestly felt like I was trying hard to get back to a place of faith where I had been before.  I was actually pretty honest with others about some parts of my grief...the struggles I had with prayer and questions about God's ways, my disappointment in how He had "handled" Elijah, and the ups and downs I felt.    

Yet I would not speak about fear.  I would not speak about the things I was afraid of the most.  I would not share how it woke me at night and worried me in the day.  Even Steve had no idea how dark my thoughts were.  
 
And then I had a miscarriage in the fall of 2003.  My tiny little remnants of faith shattered down around me.  They turned into sharp, ugly shards which cut and dug into me.  

I was undone...and I was done with God.  

And that's how I spent the next year...disappointed in God, very fearful, questioning everything I thought I believed.  I wanted to be around people of faith, so I still went to church.  Participating in worship was painful and I usually cried through most of it.  I still took notes and learned from the sermons, but only in an academic sense.  Rarely did I "feel" like God was interested in me.  It's weird, because I still believed He cared for others, heard their prayers, was sovereign over events...but He wasn't personal to me anymore.  I felt like He was still all I thought Him to be...but only to others...none of Him applied to me...I felt like I was far from His care or concern.  I'm aware that this doesn't even make sense...yet it's the best I can do to describe the disconnect.

We learned we were pregnant with our sweet Sophia in the fall of 2004.  I was nervous...again.  And I began crying...a lot.  Yes, pregnancy hormones sure can do a number on a woman...but I was crying all the time.  I clearly remember sitting on the floor one evening with a box of tissues, crying...grieving about how I wasn't the Christian I wanted to be...nor the wife, the mom, the daughter, the sister, or even the friend I wanted to be.  I saw with crystal clear realization that I was an emotional, spiritual, and physical mess...I knew my faith was in shambles, I knew my "moral work" was not fixing anything, I knew my fears had grown into a destructive force, I knew I could not hold it together any more...I knew I needed help.  

I told Steve I thought I should see a counselor.  It was one of the best decisions I've ever made.  I began seeing Pam Pedrow, a counselor at our church's counseling center, soon afterward.  She is a blessing and a gift and I am deeply grateful to God for her and her ministry.

I don't remember everything about my meetings with Pam, but I kept a journal during those times that reflected what I was struggling with and what she was helping me work through.  I do remember the first time that I shared with her that I was aware that fear had grown and twisted into a destructive force (it was in our 1st or 2nd meeting).  I knew I had to say the words that scared me the most.  I remember crying so hard that it was hard to speak and breathe, but I finally got the words out.  To me, they hung there in that room like physical vapors...and then a gentle breeze came through and they swirled and dissipated and disappeared.  They were gone...and so was their power.   My own silence had given them their power...I felt betrayed by myself...I had been deceived.  That day I learned that fear and deception are some of the enemy's favorite tools.  I also learned that secrets and silence are favorite tactics of his too.  Fearful silence...a dangerous combination...one I try not to practice.

One thing that I loved about counseling was that it was Pam's job and ministry...she was trained and experienced in knowing how to truly listen and help.  She was not a friend who I felt like I was burdening or upsetting...although she became a friend through the counseling process :)  

Pam and I discussed many, many, many, many other parts of my experience with grief and its effects.  She was especially helpful in showing me that our Lord heard my prayers.  During one session when I was sharing about my questions and struggles with prayer, she simply asked me to think about Jesus physically sitting with me and listening to me.  Did I believe he was shaking his head at my inability to get the words just right?  Did I believe that he withheld Elijah's healing because he was waiting for me to be more eloquent or more passionate?  Did I believe he was frustrated because he wanted to heal Elijah, but couldn't unless I said the proper words?  Of course not!  Prayer is not like trying to cast a spell!  Once again, God used Pam to bring clarity...I clearly saw how my own thoughts and questions had become twisted and the damage they had done.

Pam was also very, very helpful in reminding me that God counted my tears...that He intimately understood the entire situation and He cared deeply about it...He grieved with me.  She was instrumental in me understanding and believing and experiencing God's personal love and care again...and to understand that He had always been there.  I was able to clearly see the ugly and damaging twists in my grief and pain and to cry to God in repentance and for restoration.  And He was faithful...as He always has been and will be.

I met with Pam for a few months...I was a renewed and restored person by the time our sessions ended.  Fear had done some major damage to the relationships that I loved the most...God, Steve, and Bella especially.  So much restoration took place during and after my time with Pam.  I was bonding with Bella in a stronger, healthier way and I was simply more pleasant and loving with Steve...all because fear no longer had a strong grip on me.  God used Pam in a mighty way and I am forever grateful.  

There are some parts of grief that never go away...I guess that's just how it is. I've continued to experience ups and downs in this journey.  Sometimes I still question and still struggle...I often wish I could just know why.  I miss my son.  

But being on the other side of this experience with fear has taught me to continue to turn to God, to be honest with my Lord...He has lavished me with much grace and comfort.  I am thankful that other parts of this grief simply don't feel as raw. 

The scars are there, but a scar shows that there has been healing...and, dare I say, some of them have become beautiful.  My God is in the business of renewing and restoring...He is THE REDEEMER~

"I sought the Lord, and he answered me and delivered me from all my fears." Psalm 34: 4

"Those who sow in tears shall reap with shouts of joy!  He who goes out weeping, bearing the seed for sowing, shall come home with shouts of joy, bringing his sheaves with him." Psalm 126: 5-6

These words from Isaiah are comforting and full of hope.
"...to comfort all who mourn; to grant to those who mourn in Zion—to give them a beautiful headdress instead of ashes, the oil of gladness instead of mourning, the garment of praise instead of a faint spirit;"  Isaiah 61: 2-3

"I will turn their mourning into joy;  I will comfort them, and give them gladness for sorrow." Jeremiah 31:13

Thanks for reading...hug your family~

Rachel~
   

Elijah's Story~

My son would have turned 13 today.

How can that be?

How have 13 years passed since Elijah was born...and died. 

Time has reduced the rawness of the wound and the grief comes more gently, but the hurt will never be completely gone.  My heart aches for what could have been and my eyes blur with tears...my mind races with questions and my soul yearns for answers.

But I also have peace...peace that my God is Sovereign, peace that my God is good, peace that my God knows my heart and counts my tears, peace that Elijah is living in heaven, peace that I will know him one day.

King David said this about the death of his infant son...and God chose to record it in the Bible...it gives me much hope.

"I will go to him, but he will not return to me."  2 Samuel 12: 23

Steve and Elijah...in Daddy's arms~

As Elijah's birthday neared, I thought about what I wanted to write.  And I decided to simply tell the story of our son.  

It's long because I wanted to remember and record...join me if you'd like.

Steve and I learned we were pregnant with our first child just a bit before Mother's Day in 2000...we were so excited!  And I had a great beginning of the pregnancy...there were no indications that anything was wrong or there was anything to be concerned about.  

Meanwhile, Steve accepted a job with a company in Boulder, Colorado, so we were planning a move from NC that fall.  With all the busyness of planning a move, I didn't have my 20 week ultrasound until I was 22 weeks, on September 20, 2000.  Sometimes I still wonder if that two week difference could have saved Elijah.

In the morning, Steve and I went to my doctor's office and excitedly got ready for the ultrasound.  My Mom was there too...we wanted her to see her first grandchild :)  

Very quickly into the ultrasound, we knew something was wrong.  The tech doing our scan was all chipper and then got very quiet and then said she needed to get the doctor.  I remember sitting up, trying not to panic and feeling like I was going to be sick.  Steve thought he saw two babies.

The doctor came in and took over doing the ultrasound and explained that our baby's bladder was so full of fluid that it was the size of his head...that's what Steve was seeing...bladders should be small.    

We were immediately sent to a perinatologist.  We arrived at his office and didn't have to wait at all...it was frightening.  Another ultrasound...him explaining what he was observing, referencing medical books, him making calls to doctors, Steve next to me holding my hand...all while I laid there trying to process the torrent of terrible information.

Our baby had a blockage and was not able to completely cycle his fluid and it was all stuck in his bladder.  Being able to cycle the amniotic fluid is very important...breathing in the fluid actually helps lungs develop and the kidneys are also adversely affected when there is a blockage.  Also, there was almost no amniotic fluid in the amniotic sac because it was all trapped in Elijah's body...a baby at Elijah's stage in pregnancy should have had about 500 cc's of fluid, but our son had only about 10 cc's.  He was wrapped up tight instead of floating...this was all very dangerous.

Elijah was diagnosed with Lower Obstructive Uropathy...our doctor also called it Prune Belly Syndrome...and the statistics were horrible.  1 in 30,000 to 40,000 births.  A low survival rate.  Thankfully, the survival rates are somewhat better now.

I had my first of many, many amniocenteses that day.  Our perinatologist, and those he was in contact with, needed to know how our baby's kidneys were doing.  That info would determine if and/or how we could proceed.  And this amnio was extra tricky because they had to get a sample of fluid from Elijah, not "simply" from the sac because there really wasn't any fluid where it should have been.

I think waiting for medical tests is one of the worst things in the world...the worst.

We were told to be prepared to travel because IF anything could be done, it could not be done in NC...we were heading to children's hospitals in either San Francisco, Denver, or Philadelphia because they had specialists who had experience with babies like our Elijah...it all depended on how his kidneys were doing.


Emotionally drained does not even begin to describe how we felt leaving the doctor that day.  I was filled with fear.  I tried to pray, but it was more like desperate pleading wracked by sobbing...fear that soaked into my bones...and then strange times of numb disbelief and even peaceful hope.  


One thing that I do remember very clearly is that first night...after all the tests, the praying, the crying, the fear.  I remember lying in bed late that night, beyond physically and emotionally exhausted yet wondering how I was ever going to sleep and I saw Psalm 86 flash in my mind...I can even still remember the font in the image/vision.  I did not know what was in Psalm 86, so I opened my Bible and read.  

Psalm 86

English Standard Version (ESV)

Great Is Your Steadfast Love

A Prayer of David.

86 Incline your ear, O Lord, and answer me,
    for I am poor and needy.
² Preserve my life, for I am godly;
    save your servant, who trusts in you—you are my God.
³ Be gracious to me, O Lord,
    for to you do I cry all the day.
⁴ Gladden the soul of your servant,
    for to you, O Lord, do I lift up my soul.
⁵ For you, O Lord, are good and forgiving,
    abounding in steadfast love to all who call upon you.
⁶ Give ear, O Lord, to my prayer;
    listen to my plea for grace.
⁷ In the day of my trouble I call upon you,
    for you answer me.

⁸ There is none like you among the gods, O Lord,
    nor are there any works like yours.
⁹ All the nations you have made shall come
    and worship before you, O Lord,
    and shall glorify your name.
¹⁰ For you are great and do wondrous things;
    you alone are God.
¹¹ Teach me your way, O Lord,
    that I may walk in your truth;
    unite my heart to fear your name.
¹² I give thanks to you, O Lord my God, with my whole heart,
    and I will glorify your name forever.
¹³ For great is your steadfast love toward me;
    you have delivered my soul from the depths of Sheol.

¹⁴ O God, insolent men have risen up against me;
    a band of ruthless men seeks my life,
    and they do not set you before them.
¹⁵ But you, O Lord, are a God merciful and gracious,
    slow to anger and abounding in steadfast love and faithfulness.
¹⁶ Turn to me and be gracious to me;
    give your strength to your servant,
    and save the son of your maidservant.
¹⁷ Show me a sign of your favor,
    that those who hate me may see and be put to shame
    because you, Lord, have helped me and comforted me.

I'll be honest, I clamped on to verse 16 pretty fiercely, desperately hoping that Elijah would live.  In the years since then, I have read this psalm numerous times...I know God sent it to me in a time of unimaginable need.  Verse 11 is one of my favorites and verse 13...well, it's just so beautiful...God's love is steadfast...even when it feels like your world is crashing.

The test results came back and we learned that Elijah's kidneys were still functioning, but not very well.  The traditional treatment would be to place a shunt from the bladder back into the sac so the bladder could drain and then further treatment when the baby was born.  Shunts can come out and need to be replaced and amniotic fluid is needed in the sac to place a shunt.  The doctors who were advising our perinatologist said there was nothing they could do to help our son because of the low kidney function and lack of fluid.  Dr. Hobbins in Denver recommended we contact a doctor in Florida who was doing some cutting-edge, experimental surgery that was helping babies with Twin-to-Twin Transfusion Syndrome.

And that is how we met Dr. Ruben Quintero in Tampa, FL.  Dr. Quintero had developed and was using laser surgery to operate on babies while still in the womb.  Most of his patients were twins, but he had operated on 13 other babies with our son's condition.  He was honest, the outcomes were not great...1/2 of those babies had not survived.  But we had no other medical hope for Elijah.  Dr. Quintero continues to save many lives with the treatments he has pioneered.  It was truly an honor to work with him.

We made plans for surgery on October 9, 2000.

But remember, we were also moving and had a house to sell and Steve had a new job to start...it was just a little chaotic.  And to add to the medical and general craziness, my Dad had broken his kneecap, which left his quadricep detached and had to have major reconstructive surgery on his leg right before Elijah's surgery.

Steve flew to Denver and began his new job while I stayed in NC.  I have an aunt and uncle who live in the Denver area so Steve stayed with them...love you Chuck and Amy!  My Mom flew with me to Tampa (that's where Dr. Quintero was practicing at the time...he is now in Miami) and Steve flew from Denver to Tampa to meet us.  Our perinatologist from NC also came to be involved with the surgery.  

The surgery went well and they thought they were able to clear a blockage, but the ultrasound the next day did not look as expected.  We were asked to stay in Tampa for the week to monitor Elijah.  By the following Monday it was obvious that the surgery had not been successful...his bladder was filling up again and the sac was empty of amniotic fluid.  So we had another surgery that day to place a shunt.  They added fluid to the sac, placed the shunt, and the ultrasound the next day was more hopeful.

So on Tuesday, October 17th we finally left Tampa.  My Mom and I flew back to NC while Steve flew back to CO.

I continued preparing to join Steve in CO and on Friday I had an ultrasound with my perinatologist.  It was a bad appointment.  The shunt had already pulled out.  Elijah's bladder had extra fluid in it again.  My amniotic fluid levels were low again...even with the amount he had in his bladder, some was "missing".  It's still a mystery where the fluid went.  But the worst news was that cysts had developed on his kidney's which indicated that his kidneys were failing.  It was scary and distressing and there was not very much to hope for. 

Dr. Quintero called me that night and wanted me to return to FL for one last try.  I was such a mess and Steve was far away.  We decided we needed to be together, so I got on an airplane the next day and flew to CO.  We called Dr. Quintero together and discussed the situation.  

We prayed, we cried, we tried to figure out how to proceed.  It wasn't as easy as "just do another surgery".  Elijah's kidneys were clearly failing and, apart from a miracle, kidneys don't just turn back on.  With each surgery, we increased the risk of me going into labor and Elijah being born too early and too sick for there to be much hope of him surviving.  But if we didn't do anything, was there any chance of him surviving?  And with each surgery, we also risked trauma and damage to my womb and the hope of future children.  

Ultimately, we decided to try one more time.  We felt like we had to do everything we could to give our son a chance at life.  The next day we flew to Tampa.  On Monday, our day started with another ultrasound.  Elijah's kidneys had even more cysts and were no longer functioning.  Medically, there was nothing more that could be done and Elijah's chance of living dropped to 0...0% chance of survival outside of the womb.  How do you process a diagnosis like this?

It was surreal.  I remember Dr. Quintero's soft voice telling us he was sorry.  I remember the dimly lit room and "dotted" kidneys on the screen.  I remember how sad and devastated Steve looked.  Everything moved slowly...and grief clawed at my heart...we were undone.

We left the hospital and went to the airport to catch a flight back to CO...and that is how we started our new lives in a new state.  

My aunt and uncle graciously opened their home to us and we lived with them while we waited for our home in NC to sell.  We quickly began looking for a new church and God kindly connected us with a church pretty quickly.  It was good to be with believers, but we sure did miss our family and church family back in NC...it was a very hard time to move.  

I don't remember where we learned some of the info about what the death of a child can potentially do to a couple, but we did...and we resolved to fight for our friendship and marriage...and our faith.  And God was kind to meet us in the trenches.  Our strengthened faith and marriage is one of the blessings to come out of such tragedy...we praise God for this.

The last trimester of my pregnancy was hard...physically, emotionally, spiritually.  Trying to make new friends when you're obviously pregnant, but having to tell people that your child is dying...well, it just wasn't a good conversation starter.  But I do thank God for those He brought into our lives who didn't shy away...some of those friends are especially treasured :)  It was also hard with some of our friendships back in NC...many, many, many supported us tremendously, but there were some who simply could not handle it and the friendship faded.  And that is how it goes with life...some friendships fade and some grow deeper.

One of the hardest things for me was the "random stranger".  The lady at the coffee shop who asked when I was due.  The new mom at the grocery store who smiled and told me motherhood was great.  The cashier who asked if I was having a boy or a girl.  I usually just smiled and answered their question, saving my tears for later.  I was afraid of depression, so I resisted the desire to stay at home and never go out, to never face people.  One time I actually told the "random stranger" that my baby was dying, that he had a rare condition, that we had had experimental surgery to to try to save him...she looked at me in horror and she simply had no idea what to say...I guess that didn't go so well...maybe it was even unkind of me to tell her...I don't know, sometimes it just got hard to pretend.  I turned back around in the line we were in and desperately tried to hold it together...it's weird because I can remember what I was wearing for that "conversation".

I knew from reading and research that making memories was very important to couples who faced infant death.  I wanted pictures and memories.  Steve and I were updating a growing prayer list via email (this was before Facebook and blogs :) and I kept all the messages sent and received.  I took all those messages and turned them into a scrapbook.  I still wanted Elijah to have a special outfit, so my Mom and I went to a nicer department store when I was in NC for a visit.  I picked out something and was expressing my concern that it wouldn't be warm enough for a baby born in winter when I realized mid sentence that it wouldn't matter anyway...Elijah would not be coming home.  That was a hard purchase...the bubbly clerk helping to wrap up my special purchase.

I had very regular doctor appointments with my new doctors in Boulder.  They were wonderful to work with...so compassionate and encouraging.  They kept close tabs on Elijah and he continued to do okay in utero.  His kidneys continued to develop more cysts.  Medically, the question was when would Elijah die.  Steve and I had to live and make decisions based on the truth that we knew our God could still heal Elijah, but we also understood what the medical prognosis was for our son.  It was a delicate and difficult balancing act.  

At one point, I just didn't want to be pregnant anymore...I just wanted it to all end.  We had been counseled that we could legally terminate the pregnancy..."terminate"...such a sad word to use for a life.  Steve and I knew we would not and could not choose that option, but I did began to pray for Elijah to die...I even asked others to pray for that too.  It seems like such a horrible prayer now.  God did kindly bring me to a place where I quit praying that prayer and, instead, saw Elijah's continued life inside me as a blessing.  But it forever changed how I view abortion.  I still do not support abortion, but I found myself having more compassion for women who find themselves in situations where they feel like they have no other options.  I had the incredible support of my loving husband, of precious family, of dear friends...and I wished my pregnancy would end...what was it like for women who had none of that support and felt like they had no where to turn? 

We still had to prepare for childbirth, but obviously it was not the best option for us to sign up for the next birth class offered by the hospital.  The hospital put us in touch with a social worker who gave us a private birthing class.  She was trained to work with couples like us and she helped us so much to navigate some of the decisions we had to make.  She gave us info on pediatricians (yes, we still needed to decide what pediatrician we would use because he would need to be there when Elijah was born), what funeral home we wanted to work with, what documentation we needed to make sure everyone at Elijah's birth understood the situation.  We had to legally detail Elijah's condition and prognosis and that we did not want any "heroic" efforts.  We knew our time with him would be short and we didn't want someone taking him away and trying all sorts of procedures on him to make him live.  We knew that it was his lack of lung development that would actually take Elijah's life.  He would try to breathe, but wouldn't be able to, so our doctors planned to have medicines ready to help him if he began to struggle.  How do you possibly prepare yourself for watching your child suffocate?

And we had to make a trip to the funeral home.  How does one decide which kind of urn you want for your baby's ashes when you can feel him moving around in your womb?  

We knew we had to plan Elijah's birthday.  Elijah's due date was January 18th, but we chose January 5th as his birthday...I would be 38 weeks pregnant and we had peace about waiting until Elijah was full term.  We knew we had to plan for family who wanted to try to be there and we didn't want to wait until closer to his due date in case I went into labor naturally...family would miss meeting him if that happened. 

That morning was very strange.  We were nervous and we knew what the outcome would be, but we were also looking forward to meeting Elijah.  It was such a mix of emotions.  God bathed us with His peace...the peace and faith we had through the whole experience can only be described as God's grace upon grace poured over us...we didn't muster any of the faith or strength ourselves...thank you, Lord for your care and protection.

Labor was induced and all progressed well.  I endured contractions until I couldn't handle them any longer and then got the blessed epidural...yes, a blessing!  Family members were there.  Friends from our new church were there praying all day.  

Elijah Shawn Gonzales was born at 10:08 pm on January 5th, 2001 in Boulder, Colorado.  He weighed 6 pounds, 5 ounces and was 19 1/2 inches long.  They put him on my chest and I cradled him.  He made one, small, precious cry.  They cleaned him up, bundled him up, and handed him back to me.  He looked at me with his gray blue eyes, tucked his hand under his chin, and then closed his eyes.  He never opened them again. He very calmly stayed snuggled with me and Steve.  He never struggled to breathe and no medicines were ever necessary...he was so peaceful.  Our family met him, we took pictures with him, an elder from our church prayed over him, we talked to him and told him how much we love him.  I told him not to fight, to go home with God...that we would see him again.  He died in Steve's arms at 11:48 that night...born into God's Kingdom.  

Precious Elijah with Mommy and Daddy~

Family~  From left: Steve (Steve's Dad), Heather (Steve's Mom), Karen (my Mom), me and Steve and Elijah, Brandon (Steve's brother), and Harvey (my Dad)~

Sweet kiss~

Elijah with the blanket my Mom had made for him~

We made as many memories with him as we could.  We got his tiny, sweet foot prints and a bit of his reddish hair and we took pictures.  In the wee hours of the night we knew it was time to say goodbye...there is no way to prepare.  I watched the kind nurse (who had sang over him when she cut a bit of his hair for us) gather him into her arms.  It took all of my control not to grab him back.  A hundred screams welled up, but they only revealed themselves as little sobs.  I watched her walk away with my baby son...the finality of death was crushing.

Steve joined me in the hospital bed and we tried to process the day's events and rest...we were emotionally, physically, and spiritually exhausted.  As we rested, cuddled close in the small bed, Steve suddenly jolted upright.  He told me that he had been praying and had a sense that angels surrounded us.  The presence of the Lord was so strong that Steve thought he might actually get to see one of God's angels...but he didn't...but it was sweet to know the Lord's closeness.

"The Lord is near to the brokenhearted and saves the crushed in spirit."  Psalm 34: 18

Elijah, we love you~

I think I'll stop there.  If you read this entire post, then you should get an award :)  

Many blessings~
Rach