grief (life goes on)

So I think I left off with letting go?  Grief is a strange thing.  I've experienced loss before and thought I knew what to expect.  Totally different when it's your child.  My past experiences don't even compare.  I loved my grandpa.  When he died, after years of debilitating strokes and struggle, I cried for a night and was comforted.  When my best friend's little sister, whom I was very close to, passed in an accident, I was lost.  It wasn't real until I was putting on a tie for the first time since childhood to be her pal bearer.  I broke.  I needed comfort, and God granted that.  I moved on.  When my oldest brother died, I found out what rock bottom feels like.  Life lost all meaning in a moment.  The night he died, fearing he may have been separated from the Lord, I prayed for God to "somehow, someday, show me a sign that Jimmy is alright and with you."  I knew He would answer.  I had seen my brother accept Christ and knew his heart, but I needed my heavenly Father to show me.  I assumed as I said my prayer , that day was far off.  I was wrong.  At that moment the entire room was filled with what I call "flaming tongues" for lack of a better term.  In the bible in the book of Acts there is a description used to depict what happened when a group received the Holy Spirit Acts 2:3 says:

And there appeared unto them separated tongues like as of fire, and it sat upon each of them.

The room was filled.  I rubbed my eyes.  Still there.  I closed the blinds on the window.  Still there.  I turned on the light.  Still there.  I fell to my knees and worshiped.  Reassurance for certain, but only the beginning of grief.  I knew losing my brother would not compare with prior experience.  I just didn't realize the sheer terror of waking up to the reality of it freshly moment by moment.  Day by day.  Month to month and year to year.  I didn't know something could hurt so badly that it grew and blotted out everything else.  I read through the bible twice in 3 months.  The Word of God lived before me.  It was the only thing that had meaning; truth that lives in all generations.  So remarkable to see something written thousands of years ago that can literally be seen today.  Every sentence holds immense meaning with boundless application.
The first few years marked all the "first" anniversaries.  Holidays, birthdays, trips and mile markers of life without Jimmy.  The tears slowed and eventually reached the point of rarity.
I thought I knew what to expect if we lost Esther.  Most writing on grief, loss and mourning talks of a time of "numbness".  I never had that with Jimmy.  My dad, brother and I planned on taking it head on.  No avoiding, no running.  That wasn't Jimmy's style and we weren't about to dishonor his life with that kind of behavior.
I now know numbness.  It sounds so harmless.  It sucks!  I love my daughter and don't know why I am not completely crushed and useless.  Its selfish of me, but I want to wallow a little.  It just doesn't seem to be God's way with Esther.  Instead I am reminded that even meeting her was a miracle.  Hearing those two small cries as she was born.  Holding her hand telling her "Esther your papa's here. I'm right here honey.  Its OK.  Your so strong and your papa's so proud of you."  20 days!  She died the day after she was born on the machine that was meant to keep her alive.  20 days!  I would love to wallow, but can't help but rejoice.
I know I said I was angry when the doctors gave us the horrible news, but I need to clarify.  I was not angry at God.  I was angry at the situation; if that makes any cense.  I was angry because I didn't want to have that responsibility of deciding my daughter's fate.
Now I did have a moment of anger in the following days after hearing about other babies that were doing well.  I wasn't mad that they were doing well, I just didn't want to hear someone else's good news.  It had no value to me.
It didn't last though.  I can't stand being mad.  It is just such a waste of time, and makes me feel sick.  There is, after all, too much to be thankful for.  Now just like at children's hospital, the first few weeks were most painful at night falling asleep and after waking up first thing in the morning.  Other than that, I felt alarmingly well.  Numbness.  Sure there were moments throughout the day, but they were rare.
I guess I expected to be so broken I couldn't function.  Unable to get up or complete simple tasks because of the unbearable sadness.  Rhonda, experiencing much the same situation, brought up how we had just spent several months preparing for this possibility.  We reasoned that for 20days we were on the most intense emotional ride of our lives in the NICU.  I know sometimes scripture quotes can be cliche, but it really is a "peace that defies understanding".
Now Rhonda likes to follow blogs and a group of moms that have lost their babies, and we apparently don't fit the norm.  A lot of people hurt so badly they are suicidal.  85% of marriages end when they lose a child.  I don't find those stories amusing or simple.  People's hurt is intense.
Without Christ, without Rhonda I don't know what my life would look like.
Starting back to work was also a shocker.  When I lost my brother I found a job that required the least amount of thinking possible.  No responsibility for the guy who can't keep it together for more than a few moments at a time.  Nursing does not possess any of those convenient traits.  That said, the job has not been easier.  It is just that being away from my wife, having the potential of a loss of control, has been hard.  Days have been darker.  While at work the first few weeks, I missed Esther more than ever.  Although there are places to slip away and have a moment I am fearful of what might happen if I allow the "dam" to break at work.  How I could continue through the day after losing it and just slip back into the flow with a snotty nose and red eyes.  How I would have to explain to patients, doctors, coworkers.
Thankfully that is easing.  Since Esther's funeral, memorial day and other "big days", the numbness is slowly fading.  I have had several blowouts and it is soul shaking.  I am glad just to know it is there and I'm not fearful of the reality.  I see God's beauty and grace all around me.  I assume this is only the beginning of our mourning and grief.  That's alright.  Esther is worth every tear, cry, sob, and groan.  All grief is individual and personal.  No one knows yours.  Just as you can know no one else's.  We may experience similar things but at different times and for different periods.
  For far to many CDH parents, this is the rest of the story.  Life does go on whether we are ready of not.  Trust in the Lord your God with all your heart, mind, body, soul and strength.  Everything else is just a waste of time.
Jason
to be continued.........

still fragile (every day is new)

Been quite awhile now since I have written.  I have both feared and looked forward to it.  There have been amazing moments of peace and grace, painful empty moments and days, and a lot of "blah" nothing is wrong/nothing is right days in between.
Losing Esther has been frighteningly peaceful.  I say that to express the concern I have for Rhonda and I both as we have had so many days since losing her that we haven't cried or experienced the terror I would have anticipated.
I'll give you a quick recap:  On April 12, 2012 at 3:32 PM PST, I fell in love.  A miracle occurred before me.  A precious life like none other entered into this chaotic fallen world.  Esther Frances Holtrop was born with a couple peeps of triumph from a body not strong enough to sustain itself.  Doctors quickly inserted tubes and lines, attached probes and monitors, and Esther opened her eyes with a questioning gaze.
The next 20 days were a frenzy of panic and anxiety covered in the unfailing Grace of God.  Referred to as a "very sick little girl", Esther was visited with innumerable miracles.  Every day was a test of technology, medical knowledge and skill, and most importantly faith in the One True and Living God, Jesus Christ.
So many cried out to God on our's and Esther's behalf.  God continually answered with our desired outcomes.  Young, old, believer, non-believer, friends and strangers all praying to the God of all creation.  Yet another miracle.
On Esther's 20th day of life she was given a challenge.  The medical staff was remarkably upbeat and optimistic.  They saw improvement and capacity in her lungs that they had not expected, and due to continued bleeding, needed to get Esther off the machine that kept her alive.
We spent the morning without considering the worst.  After all it was simply a trial to see if she could be maintained with other drugs and equipment that would not require blood thinners.
9:30 AM was the planned trial.  10:30 AM I was asked to come talk with the surgeons.  They sat me in a private room stating it was due to maintenance on the normal briefing area.  Rhonda was preparing to pump breast milk and was intercepted being led in to me.  We looked at one another knowing maintenance or not, something was not right.
Staff including nurses, surgeons and other doctors filed in with tissue in hand.  I held Rhonda's hand as they told us "The trial did not go well.  Esther's lungs are not able to support her off ECMO(bypass/life support).  The bleeding is too substantial and her needs for blood products too great.  Even if we were able to sustain her on ECMO 1-2days or more longer, she would not be able to develop enough lung tissue to survive.  We have done all we can."
We sat there in terrifying silence, waiting for them to say something else.  I finally asked what was next.  They responded by giving us our options of how Esther might pass.  We could take her to the operating room and have the ECMO catheters (tubes in her neck that ran to the bypass machine) removed.  But that she would likely pass before they finished closing the incisions.  Alternately they could keep her on ECMO and allow us time to hold her and say our goodbyes.
For the first time in this entire journey I was pissed off.  I wondered at how I wasn't sad or grief stricken, just mad.  Not mad at God, just mad at the choices.  "How do you want your daughter to die?" Did it really have to be my choice?  What kind of choice is that?  How can a father decide their child's death?  I didn't want to limit God.  I wanted them to try again.  I realized that removing the catheters only meant we would hold her lifeless body without tubes.  We chose ECMO.
We made the most difficult phone calls of our lives to family, and went to be by our daughters side.


              WARNING:  I am about to discuss Esther's death and condition leading up to it.
           majority of it is a description of our state and how we worshipped God in it, but there are descriptions of Esther and they might be too much for some.




By the time we left the private room and headed for the NICU I was no longer angry, just distraught.  I could hardly believe I was going to say goodbye to my precious baby girl.  There is no way to prepare for that.  When we got to her room, they had already moved her room mate to another room.  Sobbing, I held Esther's hand and let her know her Mama and Papa were there, and Jesus too.  I could see there was dried blood on the tape that held her breathing tube and on the corner of her mouth.  Although peaceful, Esther looked uncomfortable.  I told her how proud I was of her, her strength, beauty and how much we loved her.  Then I sang to her.
My dad and brother were on their way, as well as Rhonda's parents and sisters with their children.  We were asked about clothes for Esther.  We had brought a dress for her when she was born, but had since grown comfortable enough to send it home with Rhonda's mom.  After a trip to the car for clothes, blankets and hats, family began to arrive.  We played a CD that Rhonda had made for all our friends and family that had been supporting us to remind them to pray.  We took turns at Esther's side, sang, cried, prayed poured our hearts into her.
After everyone had had time with her, the family went to the waiting room and they brought a couch into the room for Rhonda and I.  A photographer from the charity Soulumination came and we waited on the couch as they removed Esther's breathing tube and other non essential lines.  We had seen glints of red in her hair since birth, but her hair had always had gel from cranial ultra sounds or something else that darkened it.  As they carried her to us I broke again as I saw just how beautiful she was.  Her hair was a gorgeous strawberry, her mouth and cheeks swollen but adorable.  Our daughter, perfect in appearance, but without the ability to survive in this world.
How could it be that the first time I would hold my daughter was also the last time?
We held Esther for a couple of agonizingly joyful hours.  We thanked the Lord for every moment, sang songs of praise and worship over her, and smiled, laughed, moaned and rejoiced.
Although Esther was receiving medication to mask the pain, it became apparent that it was time to let her pass.  To give her up to Christ.
They turned off the ECMO machine and cut the tubes connecting them in a loop.  We watched as she breathed her last breaths and passed on to Glory.  We prayed and told Jesus "she is yours, we give her back to you."
We bathed her and swaddled her, leaving with an absolutely unexplainable peace.  I cannot say I have proof of our triune God, or the heavenly afterlife He has promised, but I KNOW He is real, and I KNOW Esther is with Him in heaven.  Now no one has questioned how I know this, and if they did all I could say is "I just know."  Trusting in the Lord does not require proof, or tangible evidence.  It requires faith;  trusting in something you cannot see, hear, touch or experience.  There is ample evidence of our God, and many choose to attempt to explain it away.  Some question, if there is a God how could he allow evil and death?  The answer is free will.  If God were to play the puppeteer and orchestrate our every moment, we would be forcefully brought before him.  It is our choice.  We are Christ's bride, not his battered wife made to bow before him and worship him out of compulsion.

It has now been about a month and a half since Esther went Home.  We celebrated her at our church after burying her next to my brother Jimmy.  What a blessing to be able to praise God in the midst of losing her.
Now looking back, I remember a meeting with friends before Esther's birth.  They have a son that had been diagnosed with CDH after birth and is now a very healthy young boy (12or 13 I think).  His dad told us he was excited for us.  Hard to hear when you are expecting a battle of the ages for your child's life, but taken as a blessing.  I took it as when we go through trial of this nature we are left with few choices.  We can choose to be strong, try to pretend its not so bad, cover our emotions with distractions, drugs, alcohol, entertainment, work.  Or we can lean into the Father.  The first produces more pain, hardship and simply prolongs the agony.  The last opens the door to a relationship with the Almighty that in indescribable.  When we have no power or choice in our lives, if we trust in Him, God draws so near you can almost smell Him.  To say you "feel" His presence is inadequate.  The experience is like floating.  To be carried in Christ's arms through your trials and burdens is like flying above them.  The difficulty seems almost foreign or separate and God's love consumes, engulfs and covers.
I would not elect to lose my child to grow closer to God.  I am selfish and want to have her until I die like many parents do.  I do however, rejoice is what God has done in the midst of losing Esther.  I don't for one moment, believe God "did this to me".  God set the world into motion, made creation perfect.  Than Adam ruined it all.  I know it won't happen in heaven, I just won't care, but right now I'd like to kick the crap outa that guy.  Sorry, got off track.  So God didn't deliberately say "I'm gonna teach Rhonda and Jason a lesson."  He did, however, make a blessing out of our tragedy.  He made an ugly, terror filled trial, beautiful.  Thats all I got today.  I'll keep up more routinely now.  Catch you up on what CDH is for our 50%.   Here is yet another song to illustrate our time with Esther and our lives in general.