Happy BOO!!!

I did not feel like celebrating Halloween this year.  First of all, I'm not really a fan of this "holiday" anyway.  I just do not like introducing ghouls, goblins, witches, and demons into my feeble imagination.  Life introduces enough temptations and evil into our lives without our help! 

But, despite my druthers...
Emily and her mom, Carole, decided it would be best if we celebrated anyway.  They said it would be a great idea for  us to create another memory with Caroline by carving pumpkins and interacting with other  children. 

So, we did.  And I'm happy that they convinced me to do so. 
Besides, do you actually expect me to win an argument with a pregnant lady and her mother??  :-)

Here is Emily carving her pumpkin.  She's making an angel...(in more than one way!)...

 And I carved "Happy Boo"...because "Halloween" is just way too long!

Yes, I am a cheeseball! 

Happy BOO!!!!!!!!

My Blessing

When Dr. Williams first told me that Caroline Grace would not survive, my immediate thought was to pray for God's miraculous healing.  I was not going to limit His power.  So, I considered a miracle to be the greatest thing God could do in this situation and began praying for it.  And asking God for His miracle daily.  There has not been one day to pass without me praying for Caroline Grace's miracle.  I want my daughter to live a normal life!!

However, there is one flaw to my prayer.  A major flaw. 
It is a selfish plea.  It is an ulterior motive to bring me what I want. 

My desires are not necessarily the Lord's. 
In my human, temporal, and finite mind, the greatest thing I can fathom is for God to create a miraculous healing to give Caroline a brain and skull.  But it occurred to me (thanks be to my Sunday school class and much prayer)...a miracle is an amazing act of God's omnipotence, however, by praying for a miracle, I am actually limiting God to ONLY a miracle.  Yeah!

I am only thinking of myself.  And not His entire Kingdom.

What if God has bigger plans? 
Yes, it is possible for God to have bigger plans than miraculously healing Caroline!  This is hard to wrap my head around because I desperately want her to be healed!  But I have peace in knowing that God is already using her to touch thousands of lives just as she is.  And He may not have ANY plans to change her, because He is omniscient and knows things that we will never understand.  His plan for her is far greater than anything I could ever conjure in my severely limited powers. 

As of today, I have been posting blogs on this site for 3 weeks.
So far, this site has been viewed 5,100+ times.  I realize a lot of these "hits" are the same people revisiting my blog, but this is an average of approximately 250 visits per day.  More than 5,000 times, someone has read about her life and her influence.
There have been visitors from Japan, South Korea, Spain, the United Kingdom, Switzerland, Canada, the Netherlands, Germany, and Aruba! 

For God to heal my Caroline would be a miracle.  But for God to see Emily and me through this pain and suffering, much like He supported Job in the Bible, may have an even greater impact on others in this world.

We are not the only ones to suffer in this world.  We are not the first to ask, "why?"  And I have had my fair share of moments in which I was angry that "this happened to me!?!"

But my God is greater!!

"Water You turned into wine
Opened the eyes of the blind
There’s no one like You
None like You
Into the darkness You shine
Out of the ashes we rise
There’s no one like You
None like You

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome in power"
~"Our God" by Christ Tomlin

My God is strong enough to heal Caroline.
He is also strong enough to give us the strength for this journey.  

My faith in God is courageous enough to understand and KNOW and be at peace that He is still in control!!!
I do not curse him for giving me such an ugly diagnosis for my beautiful Caroline Grace.

Instead, I praise Him for my blessing.  I thank Him for Caroline and I thank Him for her anencephaly. 
She is in Your hands, Lord.
To you, God, be the glory!!  Forever!

Take action!!

Please follow the link on the left-hand side of my blog page (a little further down) to take action!  Support the Parental Bereavement Act of 2011 (S 1358) (also known as The Farley-Kluger Amendment).  It takes 2 minutes to fill out your name and send to Congress.  And you can keep it private so you don't receive any spam.  Thanks!

Wanna play a Game?

Games.

Chess.
Scrabble.
Hangman.

These are awesome distractions.

Enduring the pain and suffering these days gets very challenging.  And it wears me out so much that ordering a  burger at a fast food joint can stress me out of my mind!  It frustrates me because I don't have the energy to be my normal, smiling from ear-to-ear, goofy self.

So, I get through most of my days by distracting myself.  This is not a hard task considering that I love shiny things!  And squirrels.  (If you haven't seen the movie, don't worry about it.)

This is a breakdown of my distractions:
Sunday:  Church followed by hours of NFL.
Monday:  Work followed by Monday Night Football.
Tuesday:  Work followed by games (see above).
Wednesday:  Work followed by games (see above).
Thursday:  Work followed by games (see above).
Friday:  Work followed by Pizza Night at the Hayes House.  Then, games (see above).
Saturday:  Yard work, house work, and errands.  Then, games (see above).

That pretty much sums it up.

When I cannot be distracted, I absolutely have to find my peace by finding God.  I can do this through listening to my favorite Christian artists, praying, reading my Bible, praying (oops, I already said that), studying a devotional book (usually My Utmost for His Highest by Oswald Chambers), praying (oops, again), blogging about how God is strengthening me to endure this journey, and hanging out with my beautiful wife.

But it's time for another distraction.  Wanna play a game?  I have "Chess with friends," "Words with Friends," and "Hanging with Friends" on my iPhone.  Feel free to find me on Facebook for a game or two.  But don't feel bad if I beat you.  Just don't give me any mercy points!!  It's okay if I lose, too :-)  Afterall, it is just a game!

Where the Healing Begins

The past 3 weeks have been......heh....I'm at a loss for words.  Imagine that!  Me -- at a loss for words!  :-)

Well, I took a kick in the teeth last night.  I was watching the epic Game 6 of the World Series as a song came on the radio.  Yes, I know...Emily doesn't understand how I watch TV and listen to music either.  But, somehow, I can manage both.  Some call this "selective hearing."  I think it's found mostly in husbands, but others may be guilty too.

As I was biting my nails and hollering at the TV (like a true fan!), a song came on the radio by Tenth Avenue North.  The song is called, "Healing Begins" and is goes like this:
"So you thought you had to keep this up
All the work that you do
So we think that you're good
And you can't believe it's not enough
All the walls you built up
Are just glass on the outside

So let 'em fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now

This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark

Afraid to let your secrets out
Everything that you hide
Can come crashing through the door now
But too scared to face all your fear
So you hide but you find
That the shame won't disappear

So let it fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now
We're here now, oh

This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark

Sparks will fly as grace collides
With the dark inside of us
So please don't fight
This coming light
Let this blood come cover us
His blood can cover us

This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within 
The light meets the dark
The light meets the dark"

This song slapped me in the face.  Despite blogging about my pain, talking to people on the phone, and visiting with people in person, this song made me realize how much pain I am still holding within.  These lyrics forced me to come to grips with the fact that I have not completely surrendered my pain.  As I continued to listen, I felt this anger well up inside of me.  I thought, "this is a great song.  Why am I angry all of a sudden?"  I immediately felt like sprinting through the streets of our neighborhood to expend all of my nervous energy.  Then, I felt lethargic and not like doing anything.  But then the Rangers' Josh Hamilton hit a towering home run to go up 9-7 in the top of the 10th!!!  Woohoo!  Go Rangers!!  Then, the song ended. 
And the Rangers lost in the 11th inning.

Eye of the Tiger...

"It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all with the eye of the tiger"

It's Rocky III.  And Rocky is in the heat of the battle with Mr. T, Hulk Hogan, and Apollo!!  Okay, you've probably heard the song.  And now you've got it stuck in your head for the rest of the day :-)

You're probably wondering, how does this song apply to my life right now?  Well, if you're weird like me, you live in the 80's.  No, I'm just kidding.  But you might associate such an adrenaline-junkie movie and theme song to the ongoing challenges that Satan places in our lives.  He always picks the best times too, doesn't he?  You know, right when you're ready for him?  And expecting him, right?  Ha!

----------------------------------------------

Emily's mom, Carole, left our house on Saturday to return to Texas.  I knew the next few days after her departure would be tough for Emily (and me).  Therefore, I decided to take Monday, Tuesday, and Wednesday off from work so I could be with her.  And it was good that I did.  We slept in (REALLY late!), talked (a LOT), laughed (even MORE), and shared our hearts with each other.  You don't even know how blessed I am to have a wife like Emily!  She is the essence of a Christian lady and mommy-to-be.  She is my [pick any and all romantic and cliche word(s) to describe an amazing woman and insert here]!!  Truly a God send.

Well, my mini-vacation ended this morning :-(  So, after hitting the snooze button 3 times, I rolled out of my warm bed and quietly meandered my way downstairs to the kitchen, playing with my cats along the way.  Once I finally arrived at my coffee mecca, I made a few cups of joe for the road.  While still rubbing sleepies out of my eyes, I washed a few dishes, wrote Emily a little note to say "I love you," and then finally journeyed back upstairs to get ready for work.  Right before I left the house, I poured my mug full of steaming hot, freshly brewed coffee.  Most of the time, I take my coffee black - I've convinced myself that black coffee wakes me up better.  But I'm pretty sure this is only a mental thing - no real truth to that belief at all!  This morning, however, I decided to add a little milk.  Bad idea.  Apparently, the milk had soured.  Now, my steaming hot, freshly brewed coffee was not so fresh!  Thankfully, I realized this before I took a sip.  I shamingly poured out the rest of the milk.  Then, I dumped my coffee mug into the sink as I shook my head in disbelief. 

Having felt defeated by my own inability to interpret a "use by date," I left the house to go to work without coffee.  I passed the local school, waved good morning to the crossing guard, and drove out of our neighborhood.  As I turned onto the first street in town, I realized, "I don't have my wallet."  Awesome.

So, I turned around.  I passed the crossing guard.  Again.  And I drove back to the house.  I grabbed my wallet out of yesterday's pants' pocket.   And then I drove out of the neighborhood.  For the second time today.  The crossing guard for the local school must have thought I was nuts!  But she was very friendly, enthusiastically waving at me and smiling all three times that I passed her!

It's about a 30 minute drive to work.  So, I was still good on my timing...I was determined not to be late for work on my first day back this week!  Then, I got on the highway.  There was a jack-knifed tractor-trailer on the opposite side of the highway...and emergency vehicles were using my side of the highway to access the accident...7 miles up the road!  So, I sat in traffic.  For 95 minutes.  Without coffee.

Spiritual warfare sucks.  And "Eye of the Tiger" all of a sudden seems appropriate. 


So, put a smile on your face.
Key your best air guitar.
Play your most obnoxious drumming rendition
And shout at the top of your lungs!! 

"It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
stalks his prey in the night
And he's watching us all with the eye of the tiger"

Satan, meet Rocky!!  Because God's about to knock you out!

Free Gas!! You're welcome.

I woke up to a text message from my bank this morning:  "Urgent!  Suspicious activity has been detected on your XXXXX XXXXX card.  Call now to confirm."


Instead of hitting the snooze button, rolling over for another 9 minutes, hitting the snooze button 3 more times, then sauntering downstairs to make my coffee....I frantically jumped out of bed, stumbled down the stairs, called my bank with my best groggy-morning voice, and began "the process."  I had to confirm my identity in 5 different ways, cancel my current card, file a report of fraudulent usage, confirm that I had not purchased anything from a New York Gulf station within the last 72 hours, and request a new card.  Now, I have to wait several days to get the money paid back to my account and another 7 days to get a new card.

So, Mr. Man from Islip Terrace, New York, who takes advantage of others:  you're welcome for your free $149.30 purchase from the Gulf Gas station.  But, apparently, you needed that gas.  So, I guess I'm glad I could help! 


Normally, I would laugh at this type of thing and just take care of business as usual.  However, given my lot these days, taking care of fraudulent bank charges proved to be emotionally challenging.  When you're already drained of energy and someone takes advantage of you, it really tans your hide!!  ::trying my best to choose my words wisely::  I was so angry!  I wanted to drive up to Islip Terrace, NY, and go on a man hunt!  I have no clue what I would do if I found him.  But that's beside the point.  Thinking about doing bad things to him (however un-Christian that is) somehow made me feel better about my situation, even though my thoughts would never come to fruition.  I had a great morning...let me tell ya!

This situation reminds me of the ever-present existence of spiritual warfare.  When we are weak spiritually, Satan has us right where he wants us.  He does not have to do any work because we self-destruct, succumbing to our fleshly desires.  However, when we are spiritually strong (as I am right now), Satan's presence is so much stronger.  He knows how God is using us to impact others and does everything he can to thwart our walk with Christ.  This morning was one of those times.  Planting those evil thoughts in my head are one example of how destructive the Prince of the Air can be when he is on the prowl.  As Ephesians 6:12 says, "For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms."  Right now is tough enough.  Being attacked makes it even worse.

Lord:  Thank you for protecting me daily.  And forgive me for my evil and wretched thoughts.  Please continue carrying me as I'm still not strong enough to walk on my own.  You're the best!

"I will be your God throughout your lifetime—until your hair is white with age.  I made you, and I will care for you.  I will carry you along and save you."  - Isaiah 46:4 (NLT)

Do Everything!

We all struggle.  That's life.  It's hard!!  Each day brings new challenges.  But "morning by morning, new mercies I see!"  My Papa has told me numerous times that "being a Christian is not easy."  And he is definitely right.

Former President and Rough Rider Theodore Roosevelt would have 
agreed with my Papa.  Good ol' Teddy said, "Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty... I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well."


You may have thought Mr. Roosevelt was talking about the apostle Paul. As the author of 14 out of 27 books in the New Testament, Paul shared a few times what it meant to have a "bad day."  He endured no sleep, no food, no water, no clothing, three shipwrecks, three beatings with rods, one stoning, and five beatings with cat o'nine tails (39 lashes each) (2 Corinthians 11:24-27).  Yet, Paul insisted for us to "rejoice in the Lord always!" (Philippians 4:4).

Do Everything! (click here to hear the song and watch the video, "Do Everything" by Steven Curtis Chapman)
1 Corinthians 10:31 says, "So whether you eat or drink or whatever you do, do it all for the glory of God."

Ephesians 2:10 says, "For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do."


So, like Paul, God has blessed me with a unique burden.  And I embrace it as my ministry.  My little Caroline's condition weighs heavy on my heart.  I don't hide this.  Instead, I share it with everyone I meet.  But I have a responsibility to live for Christ and to gracefully endure the effort, pain, and difficulty.  Moreover, it is not an option, but an obligation to suffer well.  For I know that God will not give me more than He will help me handle one step at a time. 

This is my life.  And I live it for His glory, by His grace, through His strength. 

Dynamic Duo!! Thanks to Al Gore!

Batman and Robin.

Butch Cassidy and the Sundance Kid.

Beauty and the Beast.

Starsky and Hutch.

Tango and Cash.

............................

And then there was.....Emily and Cameron!

Emily and I have been fighting through this journey together, as if we were fighting the Joker himself in Gotham City.  There is no one closer to the situation than your partner in crime!

Seriously though, we cannot do this without sticking together in Christ.  It's tempting to go about this journey fighting our individual emotions and personal battles, but it makes everything more tense, fragile, and rocky.  At first, we did not appreciate this and tried to deal with our own journeys out of fear that we would drag down the other spouse.  In fact, exactly the opposite is true!  When you face a struggle together, you end up feeding off of each others' strength, motivation, and need to help each other.  It has made our marriage so much stronger and more intimate.  I love my wife so much!  She is an amazing woman and I am so glad Al Gore invented the internet, because without him, I would have never found my wife!  And we would not be the dynamic duo we are today!!

Today, at church, we both had a very sweet moment while worshiping.  The song we sang was "From the Inside Out" by Hillsong United:
"A thousand times I've failed
Still your mercy remains
Should I stumble again
Still I'm caught in your grace
Everlasting, your light will shine when all else fades
Never ending, your glory goes beyond all fame

Your will above all else
My purpose remains
The art of losing myself in bringing you praise
Everlasting, your light will shine when all else fades
Never ending, your glory goes beyond all fame

In my heart, in my soul
I give you control
Consume me from the inside out
Let justice and praise
Become my embrace
To love you from the inside out

Everlasting, your light will shine when all else fades
Never ending, your glory goes beyond all fame
And the cry of my heart is to bring you praise
From the inside out
Lord my soul cries out"

Lord, thank you for blessing Emily and me with Caroline Grace.   
And, Lord, please....please...consume us.  From the inside out!  Emily and I cannot do it without you.  We praise your name and give you the glory, God!

Tough Day - Please Pray for Our Miracle

Today has already been very difficult....and it's not going to get any easier. 

I know that God is going to give us a miracle.  Either way.  Either He will heal Caroline Grace and brings her into this world.  Or He will heal us and bring us out of all the pain.  Struggling through this each minute of every day is so taxing on my emotions.  I just wish I knew one way or the other.  Please continue to pray. 

Daddy's Little Princess

Most of our Friday was spent lounging around the house.  We have been remodeling...impeccable timing, I know!...but we started back in May, well before this journey began.  We were making excellent progress until....    We're still making some progress, but we have to play each day by ear.  Some days, I just don't feel like doing anything.  Other days, I have the strength to work umpteen hours on the house.  Friday was a day we had been waiting on for a while...we finally got our new kitchen countertops!!  Yay!  While the installers were working on our kitchen, we got two more visitors bearing gifts!

 

 The roses and little bear are from my mom, Joy!!
And the calla lilies are from one of our friends in Texas!

Friday evening turned out to be very emotional.  Emily, her mom, and I all shed tears of joy and pain while shopping at the mall.  We ventured out into the world and braved the numerous questions and comments by baby store clerks and sales-persons.  I cannot express how bad it stings to walk into a store with several other expecting moms and dads.  Seeing their excitement and giddiness as they look at each onesie...or cringing as the sales-person approaches you to ask, "how far along are you?" or "isn't it exciting to play dress-up?"

On one hand, I want to tell them the whole story.  But this is emotionally taxing and often makes them feel embarrassed, because they had no way to know what's going on.  (Consider this:  only 1 in 1,000 births are anencephalic babies.  Of those babies diagnosed with anencephaly, 90-98% of the mothers choose to abort!  This means approximately 3,600 out of 4,000 anencephalic babies are aborted each year in the US alone.) 

On the other hand, I want to lie to them and pretend nothing is wrong.  But this proves to be emotionally tragic as well, because they always have follow on questions.  One lie leads to another question.  And each question penetrates my heart with sadness and I can taste a bitterness in my mouth that I cannot describe.  This usually leads to me telling them the whole story anyway.

Nonetheless, we went shopping.  And we had fun doing it!  I will forever treasure the memories we made with Caroline.  Because we know her life is so precious, yet abbreviated, we decided to spend this Christmas as her "first Christmas" since she will most likely not be with us for Christmas 2012.  We are still praying for her miracle, but realize that God may have even better plans for her.  So, we went shopping for Christmas ornaments!  As a guy, I have never been so excited to go shopping for ornaments.  Haha.  It's so true...having a baby girl will soften your heart like you wouldn't believe!!
 

We also decided to buy her a very special dress and little cap for her.  You can't have a little angel without dressing her up like one!!  Daddy's little angel is going to look so precious!  I can't wait to hold my little girl.  She's my whole world right now.  And I thank the Lord above that He has given her to us, just as she is!



When we got home, we placed her little dress in what will be her nursery with the other things we have bought for her.  Ironically enough, we bought this baby bib for her prior to getting the news of our special gift.  She is definitely the star of her mommy's blog! (ourcarolinegrace.blogspot.com)

Abortion is not the answer!

It is my prayer that our journey through anencephaly with Caroline Grace will gracefully open up people's eyes.  Anencephaly is often the #1 reason to argue FOR abortion.  Well, I am here to tell you that MIRACLES are the #1 reason to argue AGAINST abortion. 

I have been involved in a heated "discussion" with a passionate woman on Twitter for the past few days.  She believes in Pro-Choice and asked me, "do you believe in forcing other women to [carry an anencephalic fetus to full term]?"  She then tweeted, ""/"we"? You mean SHE. Your god is CRUEL. I feel sorry 4 both."  Another person chimed in:  "whether they are technically born (if no brain is present) is an ethical and legal issue."  Well, I have several problems with these tweets. 

First:  I'm not the President.  I don't make laws for the people. 

Second:  If I was the President, we'd ALL be in trouble! 

Third:  My wife and I are married. We are joined by our love and vows to each other. Besides, it takes two...Yes, "WE" are pregnant.  Furthermore, Genesis 2:24 (Old Testament) states, "For this reason a man will leave his father and mother and be united to his wife, and they will become one flesh" (NIV).  You don't like the Old Testament...okay, the New Testament states, "and the two will become one flesh. So they are no longer two, but one" (Mark 10:8; NIV).  If you don't believe in the Bible, I'm sure that you will not argue with the old addage: "it takes two to tango."  Besides, what pregnant lady wants to go 9 months without any help around the house, emotional support, comfort, compassion, etc??  It is definitely a team effort!!

Fourth:  I realize there is an ongoing debate of defining what it means to be a "fetus" or a "life."  I'm here to tell you that these babies ARE alive.  During the sonogram, you can clearly see them moving in the womb!  Many are even born alive and live to be several months/years old.  Even if Caroline Grace does not survive the delivery, her organs will be available for donating!!  So, if you have a problem accepting the fact that my baby girl is "technically born" or not, I would hope that you at least see the medical benefits and ethical dilemma presented by stealing someone's life (or fetus, if you must) that could have been used to save someone else through organ donations.

Fifth:  There are some wicked, wicked people in this world.  Of these, consider serial killers.  If killing a serial killer is illegal/unethical/punishable by death penalty, why is it okay to kill an innocent baby, despite how that baby was conceived?  We cannot accept aborting our baby (even if I disregard what my religious beliefs) because I know that she is already touching lives and she's not even born yet!  And when she is born, she's going to touch (maybe even save!) many more...either by her organ donations or by a miracle that God grants her life in this world!

Sixth:  Lastly, I believe in miracles. ...of all shapes and sizes!  If we aborted Caroline Grace, we would be removing God's role in her life.  Job 1:21 says, "Naked I came from my mother's womb, and naked I will depart.  The LORD gave and the LORD has taken away; may the name of the LORD be praised."  It is not Emily's or my role to take away Caroline's life.  The Lord has granted her to us for a reason.  And we will not sell God short!

Please choose life.  We did!! 

Sidewalk chalk with Caroline!!

We all understand that Caroline Grace may not survive the delivery in a few months.  Therefore, we decided to make the most of the time God has given us with her.  Emily's mom (Carole) flew in from Texas to be with us this week and help make treasured memories with Caroline. 

While I was at work today, they gave me a surprise that I will never forget....

  

Can't keep a good man down!!

As I drove to work this morning, I was still in a funk (see yesterday's post).  I couldn't find any motivation to do anything.  Even making my coffee (which is a lifeline right now!) became a chore.  The drive to work was especially tough, despite listening to my usual radio station and forcing myself to sing along with a few worship songs.  But then!!   I got to the military base and pulled up to the gate guard's security station.  I have no idea what his name is, but he and I joke with each other every morning and thoroughly enjoy the 10-15 words we speak to each other.  It's a very brief interaction, yet I look forward to it every time I drive to work.  He is just doing his job, greeting everyone with a military presence, checking their ID and Department of Defense vehicle stickers.  But the words he spoke this morning turned my day around! 

As I pulled up to his station, I greeted him, "Hey!  How's it goin'?"  He replied, "I'm alright for a Thursday.  You know, they can't keep me down forever!"  I smiled and even laughed, because I knew he was right.

Psalm 128:24 says, "This is the day which the LORD has made; Let us rejoice and be glad in it" (NASB).
And I will!!  This will be great day.  Thank you, Jesus, for bringing a smile to my face and joy to my heart.   The holes in your hands and feet caused far greater pain for you than the hole in my heart is causing me.  You overcame your pain, conquered death, rose again, and you reign victoriously!!!  They couldn't keep you down.  And no, they will not keep me down either!
  
"He's got the whole world in his hands
He's got the whole wide world in his hands
He's got the whole world in his hands
He's got the whole world in his hands

He's got the little bitty baby in his hands
He's got the little bitty baby in his hands
He's got the little bitty baby in his hands
He's got the whole world in his hands"

I love you little Caroline Grace!!  We will get through this together, baby girl.  We will get through this!! 

In a Funk

Up.  Down.  Up.  Down.  Down.  Up.  Down.  I'm just drained.  I'm more tired than a one-legged man in a butt-kicking contest (that's for you, Scott!).  That's how my last week has been.

I find myself going through the motions at work.  As each day passes, I feel more and more like the Peter Gibbon character in the movie, Office Space:
"I generally come in at least fifteen minutes late, ah, I use the side door - that way [they] can't see me, heh heh - and, uh, after that I just sorta space out for about an hour....I just stare at my desk; but it looks like I'm working. I do that for probably another hour after lunch, too. I'd say in a given week I probably only do about fifteen minutes of real, actual, work."

Generally, I can't read that quote without laughing out loud at the ridiculous nature of the movie and smile (though I do not recommended as a family movie).  However, today, this brings me no laughter.  In fact, nothing is making me laugh today.  I don't feel like smiling, eating, talking, walking, or blogging.  I just want to crawl into a corner and come out when this is all over.

Even after "working" a full day, I come home and I'm still tired.  Some days, I think it would be nice if I had a remote control for my life and just held the fast forward button for a couple of years.  Then, reality slaps me in the face and I realize that the emotional scars are not going to end in a couple of years.  This is going to leave a mark on me for the rest of my life.  I just feel sorry for my next kid...they are going to be so spoiled rotten!

Out of the ashes....I rise

<sup>My heart hurts...literally.  My chest and lungs are restricted.  The burden I carry weighs down on me.  It is too much for me to carry alone.  Christ is walking with me and I am leaning on Him, else I would fall and not be able to rise again.  With each breath, the pain creeps further and further into the depths of my soul.  


I worry that I am not the man Emily needs me to be right now.  Some days, I am excited to feel Caroline kicking and am hopeful for a miracle.  Other days, like yesterday, I cringe when she asks me if I want to feel Caroline moving and kicking.  I am struggling so much to deal with my own emotions that I feel that I cannot help her.  Emily is so strong.  I cannot fathom what it's like to have no choice whether you feel Caroline moving.  She inspires me to take another step in our journey.        

"26</sup> In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans." ~Romans 8:26 (NIV)
 
I can't find any more strength to find the words for what I want to say right now, so the rest of this blog will be mostly quotes and songs from other people.



There is a poem by another very strong woman named Emily.  My great Aunt and Uncle L&D shared this with me.  There situation was different than ours, but the emotional ramifications are very similar.  

----------------------------------------------------------

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

----------------------------------------------------------

If I could speak to my little Caroline Grace right now, this is what I would say:
"Three in the morning,
And I'm still awake,
So I picked up a pen and a page,
And I started writing,
Just what I'd say,
If we were face to face,
I'd tell you just what you mean to me,
I'd tell you these simple truths,

Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
...don't forget why you're here..."
~"The Words I Would Say" by Sidewalk Prophets

The one thing I do know is this:  out of the ashes, I will rise!!  Can you picture that?  Something so beautiful rising up from the ashes?  What a sight!  And what a journey.  Thank you Jesus for blessing me with Caroline Grace.  To God be the glory.....

deep, dark, dismal

I am empty inside.







I want to destroy something.  I want to hurt it.  Bad.  I want to SCREAM until I can't scream anymore.  I want to punch something until I see blood.

But I...don't have...the...strength....

I don't want to type this blog.  I don't want to share my real emotions.  I am embarrassed and ashamed that I feel like this.

I don't want to talk to anyone.  Some people at work asked me, "how are you doing?"  Why??  Why do they waste their breath?!  How do you THINK I'm doing?  I'm not doing well.  At all.  Is that a surprise?  "But you're still smiling."  So, I put on a good show...like they say, "fake it until you make it", right?  I've got to get through the day somehow.

I don't feel like eating.  I don't feel like going to work.  I don't want to leave the house.  I don't want to come home.  I feel a lot like Job did (Job 3:11, 20-26 - Holman Christian Standard Bible):
¹¹ Why was I not stillborn;
    [why] didn't I die as I came from the womb?.....
  
²⁰ Why is light given to one burdened with grief,
    and life to those whose existence is bitter,
    ²¹ who wait for death, but it does not come,
    and search for it more than for hidden treasure,
    ²² who are filled with much joy
    and are glad when they reach the grave?
    ²³ [Why is life given] to a man whose path is hidden,
    whom God has hedged in?
    ²⁴ I sigh when food is [put] before me, ^[a]
    and my groans pour out like water.
    ²⁵ For the thing I feared has overtaken me,
    and what I dreaded has happened to me.
    ²⁶ I cannot relax or be still;
    I have no rest, for trouble comes."
 
Oh God! I need you now!!!

 Please don't hate me for saying these things.  Or feeling this way.  My heart is ripped into shreds.  And I need a miracle.  Scratch that.  I need three miracles.  One to heal sweet Caroline Grace's brain and skull.  One to heal Emily's bleeding heart.  And one to heal my wretched soul.

"A wretched soul, bruised with adversity,
We bid be quiet when we hear it cry;
But were we burdened with like weight of pain,
As much or more would we ourselves complain..."
                         ~William Shakespeare, The Comedy of Errors, Act II, Scene 1

Every Man's Struggle

I began writing this blog, because I realized there is a severe shortage of blogs, books, etc. available from the husbands' perspective.  There are nearly as many men struggling with these types of losses as there are women.  Yet, you'll find that most men do not want to talk about their pain.  Most of us men internalize our struggles.  Furthermore, when confronted about this struggle to share emotions, almost all of us will deny that this is ever a problem!  When Emily and I first got the news, I didn't know how to handle it (in many ways, I still don't).  My initial thought was to bottle up my emotions and "be strong"..."you're a man...suck it up!!"  But this is definitely not healthy.  And not what it means to be "bold, courageous, brave, etc."  One of the most difficult realizations for me is knowing that, even though I am writing this blog primarily for other fathers who are going through similar pain and tragedy, I know that I will receive the least amount of feedback and encouragement from men.  Nonetheless, I keep writing so that someone, whomever it may be, may find solace and compassion from my journey through anencephaly.

What does it mean to be a man anyway?  Slanted media, misplaced stereotypes, beer commercials, "man laws"...all of these false pretenses create barriers for men to actually be themselves.  Questions that I often find myself asking include the following:
-"Why do I feel obligated to bottle up my emotions?"
-"Will I be less of a man if I share my true emotions instead?"
-"Is it ever manly to wear pink??"
-"Is it okay to cry?"
-"If I do cry, will I lose my "man card"?"
-"If I don't cry, does this make me insensitive or an uncaring husband?"
-"Why is it unmanly to drink frou-frou coffee?"
-"What?  I can't even say frou-frou now?"


So...as I have mentioned in a few of my other blog posts, I am breaking all kinds of "man laws."   I don't care what the stereotypes are anymore.  I was recently told by 4 medical professionals that my daughter will die shortly after her arrival into this world.  Right now, "man laws" mean nothing to me.  And who cares if I like to order an extra-whipped cream, grande, double chocolate, mocha frappuccino?  I have been known to wear pink...not often, but it happens.  And crying...yes.  After the last two weeks, I feel like I should own stock options in the Kleenex brand.  But know this:  I am still a man - no question about that.  I am rock solid in my beliefs.  I stand strong beside my wife.  I am confident in my abilities at my work.  I faithfully support my community and my church.  This is what it means to be man.

And in case you're still wondering, you can take my man card...in fact, you can take everything I own...all I want is my little Caroline.

Caroline Grace and God's Grace: October 15th - Pregnancy and Infant Loss Remembran...

Caroline Grace and God's Grace: October 15th - Pregnancy and Infant Loss Remembran...: Light your candle on Saturday, October 15th. Today is recognized internationally as Pregnancy and Infant Loss Remembrance Day. Although our Caroline Grace is still ve...

A beautiful autumn Saturday

Today, the weather is absolutely PERFECT!  It's a gorgeous day outside:  73 degrees, blue skies, bright sun, light breeze...loving it!


So, I'm blogging from my front porch and soaking in some sunshine!




Yesterday morning, Emily received another beautiful bouquet of flowers.  This time, they came from a local florist instead of a UPS truck.  These are from my aunt and uncle - thank you D&C!!  We love you!  And it's quite alright that you are at a "loss of words."  Even we are at a loss of words...no one knows what to say right now.  That's okay.  That's just part of the emotional experience.  The scriptures you gave instead are quite sufficient :-)

Love and support from friends and family continues to pour into our lives, softening the blow of our pain and helping us push through another day.  It never ceases to amaze me that God places just the right amount of support in your life when you need it the most.  It's like a symphony.  And God is the maestro.  The world is his orchestra and he directs each "musician" to play their solo with impeccable timing and harmonious accord.  Life is beautiful!!  "Can you hear it?" (quote from the movie, August Rush).

Speaking of musicians and beautiful people....yesterday, my sister came to visit us for the weekend!  She is awesome!!  And I am so happy to have family here to hug, talk to, and distract me from my suffering.  Fridays are always "Pizza Night at the Hayes House."  So, we all went out to a local restaurant and ate a HUGE pizza with mozzarella cheese, pepperoni, rosemary ham, and bits of chicken cooked in a brick oven.  It was delightful!  After we got home, stuffed to the gills, we stayed up until 1am talking!  Once she and Emily went to bed, I still couldn't go to bed.  So, I stayed awake until 3-something -- again (see my previous post).  The good news is that I was able to sleep much better last night than I had all week.  I'm sure sleeping in late on a lazy Saturday morning had something to do with that :-)

And to top it all off, Caroline Grace is still alive and kicking...literally!

Today has been a great day...praying for more days like this.

Here are some stats for you

Thank you for your prayers throughout the day today.  According to the nurse, Emily's pains were a "normal reaction" to being physically exhausted.  The past week has been intensely emotional and has worn out both of us, but especially Emily.  Rest assured, though - we are doing as well as can be expected.   

2 Corinthians 12:9 (NIV) - "My grace is sufficient for you, for my power is made perfect in weakness.”

Here are some stats to ponder (according to the Center for Disease Control and Prevention):  in the US alone, there are approximately 4,247,694 births each year.  Of those 4+ million babies, 0.1% of them will be diagnosed with anencephaly.  If you're like me, you're thinking, "0.1% is a VERY low number!"  But if you do the math, 0.1% means 11-12 babies in the US are diagnosed with anencephaly on a daily basis.   And of these 11-12 babies, approximately 11 of them will either be aborted or pass away from other complications instead of being carried to full term.  This means that approximately 212 anencephalic babies will be carried to full term each year.  It is our prayer to be in that select few.  Do you know anyone suffering from this condition?  Or maybe another life threatening condition?  I encourage you to lift them up in prayer right now.  Unless God heals our little Caroline Grace, she will leave this world and have eternal life in Heaven moments after her birth.  What about you?  Have you considered your fate when you die?  Life is precious.  And short.  But life with the Father is eternal.

Romans 6:23 (NIV) - "For the wages of sin is death, but the gift of God is eternal life in Christ Jesus, our Lord."

October 15th - Pregnancy and Infant Loss Remembrance Day

Saturday, October 15th, is recognized internationally as Pregnancy and Infant Loss Remembrance Day.  Although our Caroline Grace is still very much alive, we are sensitive to our friends and family who have also lost their little ones.  Please join Emily and me in commemorating the lives of little angels across the globe.  

Living in Doubt and Fear

I just have a feeling that today is going to be tough.  Please pray for Emily.  She went to bed last night with pain in her lower back and she was experiencing abdominal cramps.  We immediately began thinking about the worst case scenario.  Thinking negatively has become so easy with our delicate situation.  It's very difficult for me as a man, because I'm supposed to be Emily's "knight in shining armor," her champion, her hero.  It is my responsibility to have a solution for all of her problems, right?  Unfortunately, there is no "fix" to this problem, at least not anything within my power.  Instead, I have no choice but to rely on God and have faith in Him that He will do all the fixing.  Although I have a very strong faith, completely surrendering my doubts and broken heart to Him one of the hardest things I have ever done...okay, it IS the hardest thing I have ever done!  This is both a lesson in humility and faith at the same time. 

Emily's and my fears are nearly constant as we continue in our journey to see this pregnancy to full-term.  However, with Caroline's condition, the chances are very high that Emily will go into pre-term labor anytime between now and 5 months from now.  Any pain -- however slight, even if it's a "normal" sensation for most pregnancies -- is cause for fear that we are going to lose our baby girl.  We're walking on pins and needles.    

Our friends and family have been great though.  We have received countless hugs, e-mails, phone calls, texts, FBs, tweets, and cards! 

We even received these flowers the other day!  Emily was on her home from the grocery store when she noticed a UPS truck following her.  When she pulled into the drive way, the UPS truck stopped in front of our house.  As she got out of her car, he met her in the driveway to hand her these flowers from one of our friends!  So cool!!  Please keep the support coming.  God's grace is sufficient!! 

Hebrews 4:16 Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.

I may be crazy, but check this out!

This is a photo of my wife, Emily, holding our sonogram of Caroline Grace on Tuesday, October 4th, just minutes after we found out we were having a baby girl.  Look a little closer at the right side of the sonogram....

  

On the left side of the sonogram is a small oval with three objects that look like a sideways smiley face :)  The dots, or "eyes" of the smiley face, are the bottoms of Caroline's little feet.  The other object, or the "smile" of the smiley face, is Caroline's little rear end.  But on the far right of the sonogram...call me crazy...maybe it's just me...but doesn't that look like a full grown lady?  Sitting with her knees slightly bent and her hands in front of her, as if she is holding little Caroline?  Not to be uber-spiritual or anything, but I do not think this is by coincidence.  This might be a little too far-fetched for some people, but I sincerely believe this is Caroline Grace's guardian angel, or maybe even healing angel. 

   

If you still can't see what I'm seeing, take a look at this photo (below) and then compare the two images.  Do you see any resemblance?

It is little things like this that are getting me through each day.  God's grace has been overabundant.  I think I actually cracked a joke or two with my coworkers today.  It feels good to laugh.  And it feels even better to know that my God is in control of my sweet little Caroline Grace!

First Doctor's Visit Since the Big News (Part 2)

Great news!!  Caroline's little heart is still beating strong!  The doppler read in the 140's.  We asked Dr. Williams lots of questions, too.  All of her answers gave us a greater peace and makes this pill a little easier to swallow.  She believes that the chances are pretty good that we will get to carry to full term.  Yay!  She did say that we will have a scheduled delivery (ie, C-section).  This removes the chance of a breech position and increases the chances of Caroline surviving the delivery.  And apparently, C-sections these are days are a lot less intrusive on the mother than they used to be.  They "just" make a small incision in the skin, spread the abdominal muscles, and it heals in 6 weeks.  Easy, right?  I guess we'll see.  More to follow on that one in a few months!!  As for lamaze classes - there's no need, because we're having a C-section.  And, barring a miracle, Johns Hopkins will allow us to hold onto little Caroline for a couple of days after she passes.  This will allow us to hold her one final time, take photos, record her final heart beat, and celebrate her short but very sweet life here on earth before slipping into eternity with the angels. 

"For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline" 2 Timothy 2:7 (NIV). 

First Doctor's Visit Since the Big News

Real Time (finally caught up on my blog posts!):  Second day back to work.  I still don't feel like waking up.  It probably didn't help that I stayed up until 3 am, but that's what happens when you can't sleep.  I am definitely dreading going to work again today.  I'm moving around a little faster than yesterday, but still missing a few cylinders...still late to work, but only half an hour late today!  Hey, that's progress, right?

Emily and I have a doctor's appointment with her OB-GYN today.  I'm very anxious about it.  I don't even have a clue why the appointment is necessary (nor does Emily!).  We don't have another scheduled sonogram until 3 weeks from now.  And all of Emily's blood work has been completed.  It should be a routine check-up, but nothing is routine these days.  Hopefully, we'll get to meet Dr. Williams in person today.  I have so many questions and concerns. 

Emily has a lot of questions too.  But we are on different wavelengths.  She is concerned more about the short term things while I am thinking long term.  As the man, I am more concerned about provisions - life insurance for Caroline, funeral arrangements, where we will bury her, how to transport her from the hospital to the funeral home, etc.  Emily can't handle these thoughts yet.  She thinks that I have given up on a miracle.  That is not the case.  I am definitely still praying for a miracle on a daily basis, but I am also preparing for the worst.  This is a very delicate balance and I'm not doing it too well!  

As for my other questions...I don't want Emily to be included in a lamaze class with a bunch of moms with healthy babies.  That would be too painful.  Our delivery is likely to be much different anyway and we definitely need to be prepared.  So, how do we prepare for the delivery?? 

If Caroline does survive the delivery, it is estimated that she will live for just a few minutes to a few hours.  And a lot of times, anencephalic babies are bottom heavy.  Without a brain and skull, most of their weight is in their legs and stomach.  Therefore, it's very common for them to be in a breech position.    What happens if Caroline has to be delivered via C-section?  If Emily is given an anesthetic, will she be conscious for Caroline's delivery?  I want Emily to be conscious so she can hold Caroline, especially if Caroline only has a few minutes to live.  Ugh...too much to think about today...more to follow after the appointment.

God, be with us... 

First Day Back to Work

Tuesday, October 11, 2011:  Today just about killed me.  I dragged myself out of bed after lying there for several minutes, dreading that I had to go to work.  Not only that, but also knowing that I had to leave Emily and Caroline at home alone.  My mind was racing, but my body was not moving.  I thought, "There is no reason for me to go to work!  I'm not going to do anything today but be distracted and think about Caroline."  Nonetheless, God gave me the strength to pull myself out of bed.  I even found enough strength to shave!!  I was moving pretty slow, but I was moving!  When I finally made it to work, I was almost an hour late.  But I was there.  That's progress.  I spent the majority of my day explaining to my coworkers,  bosses, and friends what had been going on.  It was a very emotional day, but what's new!?  Maybe tomorrow I can actually be productive at work.  One day at a time...

Emily also made some progress today.  She doesn't have a job outside of the home, so it's more difficult for her to find activities that afford her the opportunity to interact with people on a daily basis.  Regardless, she was able to muster enough energy to leave the house on her own and go grocery shopping.  She even bought me Swiss Cake Rolls!  Yay - chocolate!!!  I'm very proud of her.

I didn't want to interrupt her outing, so I did not call Emily on my way home from work.  I just wanted her to enjoy her time at the store...well, as much as one can enjoy buying groceries.  Meanwhile, I called my Nana and Papa.  They're great...I talked with them for a couple of hours.  They told me that they printed our original e-mail to our family and friends and shared it with their church.  We are on lots of prayer lists by now! 

Today was made possible by my family and friends.  I cannot thank y'all enough for loving us through this.

God is going to give us a miracle.  Either way.  Either He heals Caroline Grace and brings her into this world.  Or He heals us and brings us out of all the pain.  Please continue to pray.  Today was very difficult, but we made it.