Kyra

 December 2006.  Life really hasn't been the same since that month.  My wife and I figured everything would be the same as it was the first time.  Her older sister, born in 2003, was an easy child.  She did what she was told, and created little to no difficulty for us or anyone else who watched her.  She was healthy, smart, everything a parent could ever hope for.  We became pregnant with our second child in May.  There was no reason for concern.  Why would this be any different?  We completely missed the first problematic sign.  During the 20-week ultrasound in October, they told us that we would have to return the next month since they weren't able to see  a good view of the heart and be sure that it was beating correctly.  We missed it again when the same thing occurred in November.  We were to return in December of 2006 so the doctors could get a good look.  That was end of normal as we knew it.

     Still oblivious to any issues, I remained at my job teaching school during this appointment.  We had a concert coming up the next day, and my presence was needed to make sure the band students were adequately prepared.  I will never forget the events of that day.  I was conducting the band on stage when my wife walked in with our first-born and sat down in the front row.  I could see on her face that something was wrong.  I left the kids on stage and went out into the hallway to speak with her.  "There's something wrong with the baby", she said.  It still echoes in my ears today.  My wife had gone to her appointment as requested.  It was necessary for her to visit a specialist with a much better machine in order to get the image of our unborn child's heart.  The specialist, a cardiologist, told us that our child's heart had not developed correctly.  Surgery would be necessary, and it was a distinct possibility that she would not survive.  We spent the rest of the day in tears.

     The next two months were frightening.  She was due in February.  We were currently living in a cheap apartment while a new house was supposedly being built.   The apartment complex was in poor condition, and we were privy to the domestic violence occurring around us.  Our goal was to make it to full-term so the baby would have a fighting chance of survival.  We knew that we would have to give birth at MUSC in Charleston since the only pediatric heart surgeons in the state are there, so we scheduled a C-section a week before the due date.  There are no words to describe the apprehension that we felt.  We were scared.  The procedure itself had a much different feeling than when the eldest was born.  Back in 2003, there was pure excitement.  The doctor even had her pose with just her head protruding from mom's belly so we could get a picture.  Yeah, I know...it's not so gross when it's your kid.  This time was different though.  There were easily twice as many doctors in the room, and my position was to remain at mom's head for encouragement.  As soon as our newborn baby emerged, the doctors whisked her away into a separate room, but not before I noticed her bent ear. 

     I thought her heart was the only issue.  Do we have a physically deformed baby too?  It was quite a bit of time before we were able to learn what was going on.  With my wife in her own recovery unit, and our new baby, Kyra, in the Intensive Care Unit, I was busy trying to figure everything out.    The doctors were running test after test.  She failed a hearing exam in her left ear, and her breathing was different, but her heart seemed to be doing its job.  We weren't quite sure what to make of it.    While the doctors weren't completely sure what they were dealing with, a geneticist solved the riddle when he correctly pointed out that she has Goldenhar's Syndrome.

     Goldenhar's Syndrome is a genetic disorder that is a one in a million chance.  It may have never occurred before in either of our families, and may never occur again.  But it definitely occurred with Kyra.  It is a disorder that generally affects one side of your body, inside and out.  With Kyra, it is most notably her left ear and jaw as those are the outward tells.  Inside, she has no upper lobe of her left lung (only a small part of her lower lobe), and her heart is severely malformed.  Even more frightening was the medical description of what Goldenhar's Syndrome should affect.  She should also have problems with her kidneys, brain development, etc.  There was an extensive list.  Only time would tell.

     Be that as it may, the diagnosis gave the doctors a target regarding tests and were able to release her at 5 days old with no heart monitor or medicine, just a series of follow-up appointments with every type of doctor under the sun.  We felt better knowing that God had a hand on her and gave her the ability to live through this ordeal, but this was just the beginning.  By the time that she was two months old, I firmly believed that she was going to be just fine.  At the time, we  hoped that something could be done for her to hear from her left ear.  We knew she had asthma and required extensive breathing treatments, but otherwise she was a tiny, weak, alive little girl.  And then the hammer fell again.

    I was busy teaching class when my phone rang.  Usually I don't answer it during the class period, but this time I felt I needed to.  It was my wife in panic mode.  Kyra turned blue, and the ambulance was picking her up to take her to the hospital.  She was at the pulmonologist's office and wanted to know if I could get there immediately.  Of course, I flew out of the school and arrived just in time to see the ambulance bring our little child out on a stretcher.   I followed them to the hospital.  It didn't take long for a team of doctors  to surround her and begin connecting her to a stream of lines and monitors.  They put her on a breathing tube and explained to us that her pulmonary artery was having spasms and would not allow blood to pass through.  Therefore, no oxygen was getting to the lungs.  There was nothing they could do about it, but they would fly her to Charleston for an emergency open-heart surgery to put in a shunt and bypass the issue.

    My wife and Kyra flew to MUSC that night.  I had to drive.  I guess I was in a daze.  For many months I looked back at that night and remember thinking, "Oh, she'll be fine.  These are good doctors.  It's nothing."  I honestly didn't realize that she had basically died that day.  When she turned blue, that was it.  If we were anywhere else, at home, asleep, having a night out, anywhere, the story would have ended here.  Because we were at the lung doctor's office when it occurred, she was already surrounded by people trained to deal with breathing emergencies.  Some people would try to put this fact in a long line of coincidences.  I am not one of those people.

    Kyra's surgery took a very long time.  The doctor had already been operating on patients for 24 hours straight, and we added an 8 hour surgery to his day.  My wife and I sat in the waiting room patiently listening for the beeper to keep us posted.  Finally we were met with good news that the shunt was successfully circulating blood to where it needed to go.  The heart itself still needed correction, but she was simply too small and weak to handle that surgery.  Hopefully she would live for another six months or so to grow and be physically ready for the next round.  As we entered the ICU again, this would be a different story than the last time we were here.  The ventilator was breathing for her, and innumerable  tubes and monitors were hooked up to her tiny body.  You can't miss the very large incision from the top of her chest all the way to right above her belly button.  There were other incisions as well, most of which still had tubes protruding from them.

    There were no guarantees in our mind this time.  Our child was lifeless with machines present to do the work for her.  This time we also noticed the plethora of other families on the unit.  Although we were relatively close in proximity, each family was zoned in on their loved one and for the most part unaware of the pain others were suffering on each side of them.  Over time, Kyra was moved into a recovery room.  Due to her lack of interest in eating, she remained in the recovery room for about a month.  During this month, we came to know many of these families that we had seen in the ICU.  One child had just received a new type of heart transplant, and Good Morning America's film crew was on the unit to do a live story.  Others were only there for a day or two.  Most were present for a week or two.  All of us felt the same sense of anxiety, fear, and gratefulness.   Most of us had witnessed at least one other family lose their child and the grief that accompanied it.

     We were obviously very pleased to be able to bring Kyra home in May.  I had a lot of difficulties as a father accepting my role of a parent of a child who might not live.  I definitely kept my love for Kyra at arm's length.  It was my way of protecting myself if I got too close.  I wasn't trying to do this, and I wholeheartedly regret taking this route.  I missed so many chances to hold her close and tell her how much I loved her.  God blessed us at this time in another area.   By the time our house was to be built, the company had only laid the foundation of the home.  Our lease was ending at the end of the month, and we couldn't bear to be in this apartment a day longer.   The company allowed us to pull out without loss of money, and we found the home in which we currently live and closed in 10 days.  It was perfect.

    The stress of moving combined with the care of two young girls, however, provided a strain to another vital part of our lives, our marriage.  To say that my wife and I were drifting apart is an understatement.  She became wrapped up in our children, and I became wrapped up in my job.  It became easier for me to remain at school where I was being successful than to come home where I was unsuccessful.  My wife did a wonderful job as she was able to keep up with the needs of both the girls, including the all-consuming amount of doctor visits for Kyra.

   November 2007, another date that will stand in the timeline in my mind.  Kyra is now 9-months old and healthy enough to handle the corrective surgery.  We are aware that they will once again have to open her sternum up completely.  We are also aware that she may not live through this procedure.  This time, however, we have already spent many days and weeks and months lifting her future up to God.  The one thing that my wife and I completely agreed on is that God has been looking out for her in unimaginable ways, and that we would put our faith in Him.  So many good things came from this experience.  Philippians 4:6-7 became my creed, "Be anxious for nothing.  But in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all comprehension shall guard your hearts and minds in Christ Jesus."  We are told not to worry about tomorrow, so why should I fear anything?  Whatever happens is the will of the Father and will bring glory to Him no matter what.  It was during this surgery that my wife and I felt the peace of God.  There is absolutely no explanation for it.  Any other human would be scared out of their wits, and we are laughing and joking around with each other knowing that God is in control.

     It was through that peace that we were able to handle the next set of news delivered to us.  Following the corrective surgery, the doctor and a nurse manager pull us into the conference room.   We did not have this experience the last time, and we have seen enough television to heighten our senses that something unexpected has occurred.  The surgeon explained to us that he was able to repair her heart, but in doing so it disrupted the electrical rhythm and that she would need a pacemaker in order to live.  They connected one wire to one of her atria, and another to one of her ventricles.  (The ventricular wire is the one doing most of the work)  These wires then connect to the pacemaker which was placed down in her abdomen.   You know, this could have been heart-breaking news to learn that a man-made machine will be necessary to keep our daughter alive for the rest of her life.  Strangely, it was somewhat of a relief.  Remember that time when she was 2 months old?  Do you have any idea how we felt every single time we put her down for a nap or stepped away from her even for a minute?  We left the hospital when she was born with the belief that she would be okay on her own.  That belief vanished after the first surgery.  Now with the pacemaker, there is a back-up system meant for her survival.  We can rest.

     The next five years have seen a lot of growth.  Our eyes have been opened in a variety of ways.  There are a LOT of children with special needs.  All of the stories are different, but one thing remains the same.  They are God's children and we are blessed with the lives of each and every one of them.  Medicaid and services through programs supported by the United Way and the Ronald McDonald House have been imperative in Kyra's development.  What you see in front of you may at times appear fragile, but we can clearly see God playing out His purpose for her life.  Many of the miracles that we have witnessed in her life have led my wife and I to seek the Lord.  In April of 2010, I came to our current church broken.  Even though I knew God was present and that He cared for me, my prayer life and Bible study were non-existent.  My job and marriage were destructing.  In no way was I being the spiritual leader of my household.  In no way was I loving my wife as Jesus loves the church.  I had sat for years in the pews of a church without seeking guidance from the Holy Spirit, and I had enough.

     God led me to this particular church.  The first Sunday I showed up, they held a P.R.A.Y. service.  Three of the four nights, I was in the pew on my knees crying out to God that He is holy and sufficient, begging Him to fill me with His grace and mercy and give me the strength to rely on Him for ALL of our needs.  I came to God in anguish, and He responded immediately.  I left the church those nights with a renewed spirit and a strong desire to learn His Word and apply it in my daily life.  Why did it take me so long?  For so many years I was one of those pew sitters who had been saved for twenty-something years and going no further with it.  I grew up in church, knew all the stories, even knew all the right things to say.  There is no question that Jesus was my Savior, but it was a long time before I allowed Him to be my Lord.  Now that I have made Him my Lord, there is an undeniable fervency to wanting to know more about Him and to be close to Him. 

     It is that closeness that now pulls us through the tougher times.  Sure, we still have marriage difficulties.  We still have financial difficulties.  We still have problems.  It's my reactions to those problems that are different.  Take this last event with Kyra for example.  On August 3 of this year, my wife sent a pacemaker report through the phone to MUSC.  They called immediately to tell us that something was wrong with Kyra's pacemaker and to take her in immediately to the cardiologist.  The doctors were able to determine that the wire attached to her ventricle had severed in two.  An electrical wire split in two that keeps her heart beating...just take that in for a second.  Even more amazing is that it was still pacing her heart and has been working in that condition since April with no adverse side effects. 

     The cardiologist was amazed, but also enforced the need to get into surgery to fix it.  The heart surgeon who worked on her the other two times was on vacation, so we waited patiently for a week to get it scheduled.  I heard from others frequently over the week that we should be frightened having to wait, but our faith in God persisted.  I sit now in the Ronald McDonald House with my youngest daughter typing this letter.  My oldest daughter chose to remain behind in our home town.  Kyra and her mother are currently in the recovery room awaiting a possible discharge tomorrow.  But let me tell you about God's faithfulness to us this week so you can see how we got here.

     Sunday morning I was overcome with emotion about the situation.  Not that I didn't have faith that Kyra would be okay, but more that I felt bad for her that she has to undergo the pain of another surgery.  I also prayed that I would have the chance to minister to other families who are in the same boat.  Finances are tight, so we also prayed that God would also take care of us with a place to stay.  It turns out that a doctor who  occasionally works with my wife overheard her speaking about our situation.  She lives in Charleston and allowed us to spend our arrival night (Monday) with her.  On Tuesday, following many hours of pre-op in the hospital, the Ronald McDonald House contacts us to tell us that we will have a room, free-of-charge, for the remainder of our visit.  Our prayers on Tuesday evening centered around several things: that Kyra would be safe, that withholding food would not be an issue, that her 2-year old sister would be patient while with us, that doctors could minimize the invasiveness of the surgery (they weren't sure if they would have to open her completely up again), and that we could be a testimony to other patients and parents.

    Wednesday, we arrived at 10am.  The surgery began at 3pm.  It went spectacularly.  It was as minimally invasive as it could be.  There were relatively few complaints for food.  The 2-year old had patience that she has never had before or since.  And I had the chance to share the message of God's peace with four different families.  One child was here for a week for a jet ski accident.  Another was in a motorcycle accident two months ago and is now a quadriplegic.  Another is from the Greenville area with a relatively similar heart issue.  And the other was just born yesterday and was flown into the ICU last night.  All of these situations are unique, but all of these parents need God's healing hand on their child and His peace in their hearts as they move forward. 

     It's clear how God was able to use me to minister to other people, and I thank Him so much for this opportunity.  It's clear that He provided for my family a safe place to stay at no cost.  Some people still might try to put all of this up to coincidence.  But you'll never guess how God really showed his awesome power!  He made absolutely sure that somewhere in all of this would be something that nobody could attribute to anything else but Him.  Following the surgery, the surgeon had his consultation with us in the conference room to go over the details.  After he told us about how incredibly successful everything was, I asked him a question.  So, once you saw the broken wire, what is your explanation for how it kept working?  His answer...There was no explanation.  Even more dumbfounding, it continued to work on its own and only stopped working right before they were getting ready to cut it off.  Did you catch that?  Since April, the pacemaker continued to work with a severed wire and quit on its own moments before they were getting ready to stop using it anyway. 

     For those of you who have read this and this touched something in your heart, I know what that something is.  God is calling you to lay down your burdens before Him and allow Him to manifest His grace and mercy before you.  Embrace His Almighty plan.  Come to terms with the fact that you have nothing while you try to hold onto everything, and that you have everything when you try to hold on to nothing.  God wants to bless you more abundantly than you can ever imagine and to make your story a ministry to others.  For so many years, I tried to fight...to say that I can handle it.  The Lord has taught me that I don't have to handle it.  It's not just words you hear from the pulpit.  It is real.  God made a promise that He will never leave you nor forsake you.  Come to Him through His precious Son Jesus Christ, and you will have peace that surpasses all comprehension.  Also realize that others desperately need to have the same encouragement.  If you have the chance, SHARE JESUS CHRIST, and allow God to do to His work from there.  I will close with the lyrics of a song/poem that I wrote following  Kyra's second surgery.  She was asleep in the ICU at this time, and these words flooded into my head.  Consider the obvious and not-so-obvious meaning behind them.

Heal Her Heart
This precious girl, mild and meek, smiling brightly, tears running down my cheek.
Helpless child, born to die, full of hope, a glimmer in her eye.
Such compassion, but doctors say, she's not meant to live her life this way.
Many people give her care, but only through You may this blessed one be spared.

Heal her heart, Lord.  Dwell within her.  Give her peace, make her be
A testimony to Your power.  Heal her heart.  Set her free.
I'm on my knees Lord.  Dwell within me.  Give  me peace, make me be
A testimony to Your power.  Heal my heart.  Set me free.

Faith in you, we relieve, our loved one is in your hands so we believe.
You know all, omniscient one, all we ask is that your will for her be done.
I will never understand how this fits in your almighty plan.
Your praises, I will sing, and we pray for this one and only thing.

Heal her heart, Lord.  Dwell within her.  Give her peace, make her be
A testimony to Your power.  Heal her heart.  Set her free.
I'm on my knees Lord.  Dwell within me.  Give  me peace, make me be
A testimony to Your power.  Heal my heart.  Set me free.

I've run the gamut of emotion.  I have no more left to give.
Just my faith in You Almighty, that Your plan's for her to live.
Thank you Lord, for this blessing.  I've cherished each moment passed.
And I know, Holy Father, these memories of her will last.

Now I see, mild and meek, your only Son, tears running down your cheek.
Jesus Christ, born to die, Son of Man, a glimmer in your eye.
Such compassion, he led the way, we're not meant to live our lives this way.
His sacrifice, showed us you care.  Only through Him may this world be spared.

Heal our hearts, Lord.  Dwell within us.  Give us peace, make us be
A testimony to Your power.  Heal our hearts.  Set us free.
We are yours Lord.  Dwell within us.  Give us peace, make us be
A testimony to Your power.  Heal our hearts.  Set us free.