A single moment... (Rachel's New Heart #1)

 ...can change EVERYTHING!  

The events of the past week have been amazing- miraculous- unexpected.  After three years and two months of waiting, I had all but given up believing the call that a heart had been found for Rachel would ever come… ever.  The hyper-vigilant state I had begun with right after Rachel was listed for a transplant did not last long.  I realized quickly that it is not possible to stay in such a vigilant state long term!  I’m embarrassed to admit that I had become so un-expectant that I had even unpacked my hospital bags.  If the call suddenly came, I’d throw things back together, but the constant reminder of unmet hopes and dreams those packed bags represented were finally put away.  After over 1,000 days on the waiting list, I wasn’t even counting anymore! 

The most difficult thing about waiting is that most of the time it does not include the knowledge of when it will end.  A waiting mom has a good idea when her baby will finally be born, of course, and this serves to help her hang on when the days get long, but other times of waiting hold no such promise.  Rachel’s wait for a new heart included no promises of a happy ending.  This alone made the wait especially hard.  Would we wait in vain for a new lease on life or would all the waiting finally pay off with the realization of everything we hoped for our little girl?  

There have been times in my life when the object of my waiting appeared so far out of reach, it seemed as if it would never come!  In those times I needed to remind myself that in a single moment, at God’s appointed time, my wait would suddenly end and what appeared endless would slip from my memory as it faded into the past.  In fact, the truth is that the most profound moments of our lives are usually ushered in with little warning and those moments actually change everything!   But we would do well to remember that this is also true of our most prized treasures.  In a single moment, those too can slip away!

I've learned over the past several years that since those moments of life altering change come so quickly and sometimes unexpectedly- we need to heed the words of  Psalm 90:12 "So teach us to number our days, That we may present to You a heart of wisdom."   God calls us to live for the moments of today and then trust Him with the moments to come that He has secretly ordained for us.  Some of those moments bring inexpressible joy; and some heart-breaking grief.  I am grateful that we can rest confidently in His sovereign hands - knowing that He is wise and will withhold no good thing from us.  I especially need to cling to His truths on days like this one, when life-changing moments overwhelm me!

On May 5, another mother, whom I have not yet met, had one of those moments that would change everything about her life and mine…   One moment her child was alive and thriving and then suddenly, in a split second, that child was gone.  Her choice to give life away in her loss meant that at 2:34 PM, the moment that would change the course of our little girl’s life would finally arrive!

The phone call that we had waited for exactly 1,153 days would actually come in the form of a FaceTime call from our transplant coordinator and our beloved Cardiologist.  I couldn't imagine why she would be calling via FaceTime and the thought didn't even occur to me that our happy news had actually arrived!

I joked around in my usual way and told her I was too busy to chat!!!  I had five little girls about to get off the bus and my day of real work was about to kick into full swing!  With Doug in India- this was serious business and I had my hands full with so many needs!  I was quick to assure them that I was a woman on the edge!!!!

They didn't seem interested in how I was or wasn't coping with all of the new changes in my life and suggested that maybe I needed to pack a bag and drive to Gainesville that very afternoon!  Huh??  I didn't have time to come to Gainesville!!!  Had they completely missed my rant only a few moments earlier?

This very moment was the one I had waited for and dreamed about for so long, and yet I don't even remember what was said!  Something about an "offer" for Rachel and "how quickly can you get here?"  My heart understood before my head did and it momentarily stopped beating and dropped into the pit of my stomach!  Was I hearing what I thought I was hearing?  A heart for Rachel??? Now???

My mind started reeling with all that needed to be done in the moments ahead if this was truly what I had been hoping for!  I had unpacked long ago!  My husband was on the other side of the world and Rebekah was so new!  How would we pull this off?  But of course we would!!!!  I had a lot to do and very little time to do it!

I was to get off the phone and pull things together in order to get to the hospital two hours away as quickly as possible!  I was frantic to get off the phone and somehow reach Doug in India, where I knew he was sleeping, before Rachel climbed off the bus to hear the news herself!!!

Doug didn't answer his phone!!!  Maybe the FaceTime ring would awaken him...  Ahhh, yes!!!! I could hardly wait while it connected!  The room where he was sleeping was completely dark, but I could hear his groggy voice as he answered, obviously alarmed and not knowing what to expect from this middle of the night call!!!  

I couldn't hold back the tears of joy that flowed from an announcement I had wanted to make for three years and two months!!!  "Doug!!!!!  They have a heart for Rachel!!!!  They have a heart!!!!"  We literally sobbed together through a dark phone screen!  It was one of the happiest phone calls I ever remember placing!!!!  And in that moment, Doug's trip was redirected and he would somehow find a way home to be a part of the long awaited answer to so many prayers on behalf of his precious girl!

He asked if Rachel knew yet... She didn't, but her bus was to arrive from school only moments later! I wondered if it might help him feel closer to home if he could have the honor of telling Rachel the news!  He cried at the thought!  

We were ready and waiting on the family room coach connected to Daddy in a quiet hotel room on the border of India and Nepal when Rachel walked in the door from the school bus...  She came running in and headed straight for the bathroom!  Clearly she had no clue that the moment that would suddenly change the course of her life had arrived!  

I hurried her to the front of the screen where Daddy was waiting.  "Daddy wants to talk to you Rachel!  Come here!"  I was surprised at how Doug held it together for the announcement!  But that ended as soon as the words escaped his mouth... "They have a heart for you, Baby!!!  You're getting a new heart!!!!"

Rachel looked as stunned as I was... I think the long wait had taught her to not expect this moment anymore and she actually thought that her Daddy was joking!  When she realized that he was not- she buried her head into my chest as she tried to grasp the way this moment had suddenly changed everything for her!

Daddy promised to hurry home as soon as he could and we raced into action!  My head was spinning!  I had begun to believe this moment would never come and now that it had, I felt paralyzed and unable to think a sound thought!  Everything went into warp speed!!!  My phone rang off the hook and I celebrated with friends and family as I ran around the house collecting everything I thought one would need for a momentous occasion like this one!  

I was in the car and headed to Gainesville within an hour and would arrive at 6 PM to begin the process we had only dreamed about for so long!!!  It seemed as if the whole Congenital Heart Center at Shands had already begun to celebrate!!!  The moment we had all waited for had finally arrived!  

One moment we thought we would lose our waiting daughter- the next moment brought word that maybe, just maybe, there was HOPE for many more tomorrow's with her instead!

In a single moment… everything had changed!  We thank The Lord for moments like this one that could have only been brought through His loving and gracious hands.  We rejoice in this answer and yet grieve that it only came through the heart breaking moment of another family.  We trust, as joy and grief mingle together, that God has ordained all of our moments and will sustain us through them with His sufficient grace.  Our prayer remains that He alone would be glorified in each and every moment of this journey!



The theme of the last two years of our lives has been waiting.  Waitingfor a phone call that announces a second chance for Rachel.  In the beginning, I was a vigilant, expectant waiter!  I was in a constant state of alert and every single time my cell phone rang, my heart skipped a beat and I leaped toward it, expecting to see the phone number of the Transplant Team and the news we had been waiting for!  I have found though, that as time slips by and that phone call doesn’t come, I am less and less expectant, and less and less sure that it ever will… 

But just last Thursday, while Rachel and I were waiting for our discharge from the hospital, God’s perfect providence led me to a certain passage in my daily reading of His Word that stopped me short.
          Psalm 27
“Hear, O Lord, when I cry with my voice,
And be gracious to me and answer me. 
When You said, “Seek My face,” my heart said to You,“Your face, O Lord, I shall seek.” 
Do not hide Your face from me,
Do not turn your servant away in anger; 
You have been my help;
Do not abandon me 
nor forsake me, 
O God of my salvation!  

…I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. 
Wait for the Lord;
Be strong and let your heart take courage; 
Yes, wait for the Lord.”  

A realization from His Spirit washed over me…  I have been WAITING for the wrong thing!!!!

As I look back over my life and at the lives of the people around me, I am struck by how much time we actually spend waiting!  Ask any pregnant mom or one hoping to become a mom through adoption, and they will be quick to tell you how long they have been waiting, and how much waitingremains before they will realize their dreams through the life of a child. Ask a single girl or guy who is waiting for their perfect match, and often you will hear desperation in their voices as they continue to wait.  Will theirwaiting ever produce what they long for?  Or ask a parent as they sit in the waiting room of a hospital, while their child undergoes a surgery that could alter the course of their lives or waiting for test results that could do the same.  Waiting can be one of the most difficult things we ever have to do! There are waiting lists for the things we most want, and we hold our breath as we wait for our name to move to the top of the list and we see our desires finally fulfilled!  College admission, or a scholarship, or maybe just our favorite new electronic gadget… life is so often aboutwaiting.   Check out the people in tents in sub zero temperatures and freezing rain- lined up waiting for entrance into the electronic store or the mall the night before a big sale or the release of the greatest, latest new pleasure.  Those “waiters” are announcing to the world that the object of their waiting is most important to them and they will not be denied!

I’ve decided that the things we are willing to wait for reveal a lot about who we are and what is important to us.  Think with me about the things that you are currently waiting for… I’m betting those things are top priority to you, or you probably wouldn’t think them important enough for waiting!    But if those things never come, will your hopes be dashed?  Have you waited in vain? What if that miracle never comes, or a broken relationship is not restored, or your child never returns… what then?  Is God too weak?  Has He failed?  Or are you just waiting for the wrong things?

I’m certain that no one would fault me for my weariness in waiting for a new heart for Rachel.  This waiting holds life or death for my child.  And still, I could hear God whisper to me from the pages of His Word…  “You are waiting for the wrong thing, Lori...  Wait for ME instead.” 

It occurred to me suddenly that nowhere in Scripture are we commanded to wait for anything apart from waiting for the Lord Himself!  This realization caused me to dig deeper and I scoured His Word for confirmation of this Truth… 

              Psalm 130
I wait for the Lord, my soul does wait,
And in His word do I hope
My soul waits for the Lord
More than the watchmen for the morning. 
Indeed, more than the watchmen for the morning.
Oh Israel, hope in the Lord
For with the Lord there is loving kindness.  And with Him is abundant redemption.
And He will redeem Israel
From all his iniquities.

Ahhh!  I see it now!  Our HOPE is found in waiting for the Lord!  Waitingfor His loving kindness and His abundant redemption…  It is only here that we find HOPE!  Hope is found in the Lord alone!  The HOPE in Rachel’s middle name and in the name of her website was never based upon the hope of a long life through a new heart…. Never! 

Hope for Rachel has already come!!!!  Her hope is not set on a new heart or even another miracle of healing or more time in her earthly body- but on something so much greater!  So is mine!

We do not have to wait for the HOPE we possess in the person of Jesus Christ or the adoption into God’s family, purchased by Him on the cross! And because Jesus conquered death and rose again, we too will live beyond the grave and enjoy an eternity together with Him and with each other. We are only waiting to cross the threshold between here and eternity and the realization of the many promises that await us there!  This waitingcalls for great expectation… not dread! 

So then~ what are we to be waiting for in our “waiting for the Lord”, if not the realization of His beautiful promises and His very presence in our lives?  To wait is to “expect”… knowing that our HOPE is placed in something that will never fail! 

Does this mean that we are never to pray for the things we long for, or that it is sinful to find ourselves waiting for the realization of our dreams?  Absolutely NO!  God cares about even the smallest desires of our hearts, and part of our intimate relationship is talking with Him about those things that are important to us- both big and small! 

But the bottom line is this… Every single longing we bring before Him is to be rooted in a deep desire that He be glorified above all!  If that is not the case… than all our waiting is in vain and our lives will lack the purpose He has designed them to have!  Jesus showed us how, while in the garden facing His own immanent death.  He prayed that God would somehow spare Him of the horrifying experience that lay ahead.  But He didn’t end there, nor should we!  Instead, He cried out “Not my will, Father... but Yours be done!”  Then He surrendered His life and gave it to redeem ours. 

This realization changes the way I will choose to wait and it changes my prayers as I continue waiting too...

“Lord- come near!  I am waiting for YOU… only YOU!  Whether you come with a new heart in your hand or to take Rachel’s hand to lead her home… I will wait expectantly, knowing that whatever your plan is, it is good and wrapped in your loving kindness and mercy!  I wait for YOU, knowing that You will provide every single ounce of grace I need to glorify your name in the midst of these circumstances. In my waiting, grow within me an abiding trust in who You are.  Let contentment fill my heart in knowing that your providence is perfect and not a single hair will fall from my head, or a tear from my eye, without your notice.  How I long to love you in the waiting, Lord.  Waiting here for You!


He Is Sovereign

Sovereign ~ Just the sound of that word does something deep in my soul! If I’ve learned anything about the Lord through the journey of these past three years, it is this… He is sovereign.  And with every day that passes without a phone call to announce that a new heart has been found for Rachel, I am forced to step in a little closer and embrace this truth a little tighter.  He is sovereign. 

God, in that perfect sovereignty, has chosen to teach me these things through what appears to be an unlikely teacher.  That teacher is a nine year old girl, that until 2 and ½ years ago, had never even heard the name of Jesus, or of a God that would go to the ends of the earth to redeem her life and give her HOPE! 

Embracing His sovereignty seems to come naturally for her…. And yet, because I know that such truths are only given through super-natural means, I can only conclude that the biggest miracle of Rachel’s life is this one!  This single truth directs everything about the way she faces life and the predicted death she has been told about since before she was even old enough to understand.  It literally defines who she is...

If you met Rachel today, you would be struck immediately that there is something incredibly different and special about her.  Her eyes literally twinkle and she embraces HOPE like no one you’ve ever met before.  I don’t know why it continually surprises us and causes us to marvel, but I can honestly say that I’ve never met anyone young or old that seemed to approach life and death quite like Rachel does…  It’s taken me a really long time, but I know now what that something special is! 

Through God’s immeasurable grace, He has revealed His sovereignty to Rachel.  It’s not anymore complicated than that, and if I can learn anything through Rachel’s life, I want it to be this…  God is sovereign.  That realization alone brings PEACE.  It brings HOPE.  It brings JOY.  And those very same words perfectly describe Rachel Hope McCary.

 While listening to the song “Sovereign” ( by Chris Tomlin) as we drove to the hospital together last week, I wondered if Rachel understood the definition to this concept by which she lives her life!  Did she even know the meaning of this word that she obviously understands in the depths of her soul?  So I asked… “Rachel, do you know what ‘sovereign’ means?”  She didn’t!  I took a deep breath and tried to explain this almost unexplainable concept in words my nine year old child, still only two years into the English language, could understand.  I was proud of my eloquent explanation until I saw the look she was giving me in the rear view mirror that I have become all too familiar with!  Most people spend their lives trying to wrap their arms around this truth.  Not Rachel.  He is sovereign!  Her answer…“Duh!!!!”

Needless to say, there’s been a lot of talk in our house lately about God’s sovereignty…  Because the truth is that the journey we presently find ourselves on is a very difficult one.  If we did not fully believe that this course was chosen for us by a completely sovereign God, then I think I would have packed up and run for the hills a long time ago!  But as I learn to wrap my arms fully around the perfect, all wise, sovereign God that I love, trust grows!  And with trust, fear melts away.  If God is in control of everything and nothing slips past his gaze… what have I to fear?  I will either believe that the GRACE and HOPE He has promised within that sovereignty will be available at the moment I need it or everything else I believe is meaningless! 

 Reports have been coming home from school that Abby is struggling… especially when life feels out of her control.  She likes routine.  She likes life to be predictable.  She likes to do what she wants to do, when she wants to do it.  And while Abby’s chromosomal makeup might predispose her to some of these likes and dislikes and a greater need to feel that she is in control, I am beginning to understand that I too, like to be in charge of my days and to constantly be reassured that I, too, am somehow in control!   What Abby hasn’t figured out yet (and what I am still learning!) is that even a life seemingly under her control is a facade! 

How little we are to think that our weak hands can control even the smallest of circumstances.  I must laugh as people try to comfort me these days with the well-known phrase and shallow promise that “God will never give you more than you can handle”!  Since in my weakness I can handle very little, my life rings out as perfect proof that this saying, while well intended, is garbage!  The truth is that I cannot handle anymore than you can!  Nor can anyone else!  The thought that some people have a greater capacity to handle pain or loss or even disappointment is a weak cop out for those of us that refuse to push ourselves to do more than we KNOW we could possibly handle! 

I remember years ago, while writing one of our very first ministry newsletters, including this quote as a small explanation as to why we were making what appeared to be “crazy” choices with our lives… Only those who will risk going too far can possibly find out how far one can go. ~ T. S. Eliot     It is only when we let go of what we think is “control” and allow ourselves to be swept away in something bigger than ourselves that we discover that God’s intentions were never to give us those things we can personally handle!  Instead, He is committed to putting things in our path that are far too difficult for us to carry alone, and will cause us to cry out for more of Him instead!  If this has ever been true in my life, it is true now!

I don’t remember ever thinking to myself when looking at Rachel’s file for the first time… “Sure, I can “handle” losing a child to death.  I’m strong enough for that!”  It would be foolish to look at a child considered “terminal” and think that you had some special capacity to handle such things and then embark on a journey almost guaranteed to be laced with pain.  Nor do I remember contemplating what parenting a child with Down Syndrome would look like and thinking that I was the kind of mom that could handle that with ease.  In both circumstances I knew only three things~  
    * God was asking me to do it. 
     * I could NOT handle it apart from Him. 
     * I COULD handle it as He empowered me to do what He was              calling me to do. 

Newsflash:  I CAN’T handle my life!  I CAN’T handle the heavy burdens God has called me to carry and I’m finding that even the lightest ones need His attention!     Even the smallest details of my life will be mishandled if left solely up to me!  But as I have begun to see myself as the slave of a perfectly sovereign Master, I understand that my only job is to do as He commands.  His job is to supply everything I need to accomplish them! Whether the job is big or small, above my personal capacity to handle or below it, is not my concern… Obedience is my only concern.  May I never forget that walking in disobedience will always reap consequences far graver than I ones could ever handle alone as well!  Either way- the road will lead me straight to the foot of the cross, where I admit my lack of strength to handle the Christ honoring life He has called me to live and I find His strength alone to be sufficient!

 “I am no longer anxious about anything, as I realize the Lord is able to carry out His will, and His will is mine. It makes no matter where He places me, or how. That is rather for Him to consider than for me; for in the easiest positions He must give me His grace, and in the most difficult, His grace is sufficient.” ― J. Hudson Taylor

 Living in the center of God’s will, under His perfect sovereignty, is the most joy-filled, beautiful way to make this journey, or any journey you presently find yourself on.  Rachel understands this…  I see it in the way she chooses to live every single day, God in His sovereignty gives her!  I see it in the way she embraces life and yet is not afraid of death!  And I see it in the way her eyes sparkle when she talks about meeting Jesus when she gets to heaven!  She told Doug and I a few weeks ago that whatever God’s sovereign plan is, it will be a Win-Win for her.  How right she is!  But how quickly we seem to forget!  Isn’t this what Paul meant over two thousand years ago, when he said…    “For to me, to live is Christ and to die is gain.”  Philippians 1:21    Sounds like a Win-Win to me too!

I am humbled by the awe-inspiring faith of a nine year old girl who had never even heard the name of Jesus until she was adopted two and a half years ago and has known more pain and suffering and promised death than most of us will ever know!  What has taken me so long?   It’s high time I start living my own Win-Win for Him!

These have not been easy times for us!  There are pressures on every side, but the most difficult part of our journey is the one we are walking along side Rachel over recent days.  Can we handle it?  No way!  But with Him… absolutely!  And we can even handle it with great JOY! His immeasurable grace is almost overwhelming these days.  There is great contentment in knowing this... He is sovereign.

We have been waiting for a new heart for over 25 months now.  Our Sovereign God could bring that heart tonight, and we pray He does… But we are being forced to face the reality that if He chooses not to, we will likely lose Rachel soon.  People often ask us if the doctors can tell us how much time Rachel might have left…  I always have to refrain from laughing at such questions, since the truth is that doctors can’t figure out how she is still with us today!!!  Only a miracle brought Rachel home from China in her fragile condition when she was seven years old and only a miracle sustains that same life day after day, two and a half years later!  Our sovereign God alone knows the plans He has for her.  She feels safe there. We do too.  It is not for us to know the time and the date of that plan… only to walk in joyful obedience with each day as it comes! 

Rachel has made it plain and clear since the beginning of this transplant journey that she wanted to LIVE waiting and refused to wait to LIVE.  She knows that there is not a promised heart at the end of the wait, but there IS the HOPE that Jesus promises!  Because she has fully embraced the perfect sovereignty of God, she doesn’t live in fear.  She will live fully with whatever time He gives.  If He brings a heart in time… “Great!” she says!  If He doesn’t… “That’s great too, because I will be with Him!” 

That is why I have fought every step of the way that Rachel be allowed to stay at home and with the family she loves while she waits.  To sit entangled with wires and machines sustaining her body is not “living” in her book, and she wants none of that!  She proves in that living that she trusts in the sovereignty of God more than most mature believers I have met in my lifetime! 

Of all the miracles God has wrought in and through Rachel’s life, I believe this to be the most beautiful!  I have learned more about the comfort and HOPE in the Sovereignty of God through Rachel than I could have learned any other way!  I refuse to let those with less faith and fearful hearts to steal that from her or to deny me the beautiful, transforming experience of embracing that amazing truth with her! 

So as you witness our journey, know this…  Our home is not “holy ground” and we are far from perfect or strong enough to handle what lies ahead. But we have never known the PEACE that Jesus spoke of until the circumstances of Rachel’s broken heart have caused us to come nearer and nearer to Him and to the beautiful realities of eternity. 

Never before have we known more JOY!  There is absolute joy when resting in the sovereignty of God.  This is possible even though the journey ahead is likely laced with more pain than we have known before.  But we would choose no other path than this one, because we know that God, in His sovereignty, will ALWAYS accomplish that which brings Him the greatest glory and through that, our ultimate good!   

We covet your prayers for Rachel and for our family.  But as you lift our names before the Lord and seek to walk beside us, we pray above all that you would know this one beautiful Truth that carries us along and which we place every single ounce of our faith in… 

He is sovereign!

(These special photos were taken by an adoptive mom who heard about Rachel and wanted to capture this beautiful time in her life for our family...  They are, and will always be, some of my greatest treasures!  Please consider hitting "play" on the song below and then scroll through the precious images captured, displaying her boundless HOPE and JOY!)


I had never even considered adopting a critically ill child.  Never.  Not once.   

The life I am now living, was simply NOT a part of my plans!  I’d chosen the non-special needs route for our first adoption, and then the most “manageable” special need I thought I could handle for #2.  My plans included another adoption, perhaps, but it would be of a healthy, older child if I had my way!  I look at my life today and sometimes wonder just HOW I got here???  People ask constantly if I “knew what I was getting into” when we adopted Rachel.  I can almost hear the words behind the question they’d dare not speak, because no one in their right mind would actually “choose” this road…would they???   

Our decision to adopt Rachel was made in split seconds!  Literally!  I had actually tried to avoid what was then just a postage size photo for over a week.  But the words written beneath that photo almost haunted me.  “A family pursuing the adoption of this child should be aware that her medical needs are critical”  When I finally forced myself to call the agency holding her file, I had a strange out-of-body experience answering that now familiar question for the very first time…. “Are you aware that this little girl is considered terminal?”  Out of nowhere came my response… “Yes, of course!  But aren’t we all?”  I think the woman on the other end of the phone was as surprised by my answer as I was!  She sent the file within minutes, and the rest, as they say, is history! 

The moment I read the hopeless story of the precious little girl that would become my daughter, the unexpected decision had been made!  I took the computer to my husband… surely he would be thinking a little more clearly than I was!  I read the short bio to him… “7 years old, severe congenital heart defect, considered inoperable,  “terminal”, sent to the orphanage to die….”  I turned the computer around to reveal the face of the precious child behind one of the saddest stories we’d ever heard.  He hardly took a moment to consider his response…  “Are you OK with leaving this little girl in an orphanage to die alone, without ever knowing the love of a mommy and daddy, or ever hearing about the love of Jesus?”   I most certainly was NOT!  “Then let’s go get her!”  DONE!  Not a single piece of paperwork had been filled out, much less notarized, certified, or authenticated!  But less than 5 months later, we were on a plane headed to Shanghai, China to bring home our precious new daughter, Rachel Hope McCary.

We brought Rachel home without a single promise attached.  Maybe a miracle was waiting at home that could fix her broken heart.  Maybe not.  It’s been more than a year since we first asked those questions and we still don’t have the answers.  Doctors feared that her lungs were too damaged after 7 years of life on a single right atrium and a single left ventricle and at first gave us very little hope.  They finally decided that there was a small window of opportunity to do the surgery she should have had only months after she was born (the Glenn) and they performed open-heart surgery 2 short weeks after she had arrived home from China.  She rebounded quickly and was back home within a week.  The Fontan could be done in the next year and a heart transplant could hopefully be put off until adulthood. 

Sadly, though, Rachel’s single ventricle began to fail within a few short months and any hope of another surgery to put off the heart transplant was dashed.  She was no longer a candidate for the surgery she needed to save her life.  On March 8, 2012, Rachel was listed and began her wait for a heart transplant.  I can’t believe, as I type, that it has been 11 months of around the clock waiting, and we are still….waiting. 

I would be lying if I said that this was easy.  And yet the waiting has proven to be a miraculous journey in itself.  We have been forced to answer some of the “life and death” questions most people avoid… and to face the realities of loss that another family must know for Rachel to have life.  Each day of strength is a new miracle and we’ve learned to enjoy many of the things we’ve always taken for granted.  Jesus has become the center of our conversations and we’ve begun to dream of the life to come that He promises, even more than the one we’re living now!  Just tonight, Rachel looked at me with those glistening eyes and said, “You don’t have to be afraid to die, because it just means you will get to go to heaven!”  I reminded her how upset I’d be if she got there before I did and she responded with the sweet giggle and twinkle in her eye that perfectly define just “who” Rachel is!  There is not a single ounce of dread or fear…. No anger or bitterness for the realities she faces.  She does not whine and never utters a single word of complaint.   She is filled with such happiness and joy, it seems to almost seep from her pores!!!  Her spirit is contagious and we’ve discovered the incredible joy that has come from the most unexpected places.     

I’ve tried to imagine in the past how a family could possibly face challenges like these with grace, and yet now that I find myself on this unwanted journey, I’ve discovered a grace from God that I could simply not have imagined would be possible!  People look at us and wonder (out loud) how we’re doing…  “I can’t imagine what you must be going through!”    If only they knew the absolute peace we have found!  Or the sheer joy of living day-to-day, moment-to-moment in a life suddenly put into perfect perspective!    

When “Make A Wish” came to our home to interview Rachel, she’d only been home from China for 5 months and I honestly wondered if she would even understand what a “wish” was… much less have the ability to verbalize the wish that would make her most happy.  Her sisters grew frustrated as she rejected every single “wish idea” they could imagine!  “No… nothing!” she kept saying.  I was pretty convinced that she was clueless.  Why else would she turn down the opportunity to have what most kid’s only dream of having?  I half uttered under my breath…”She doesn’t get it!”  But before I could even finish my thought she grabbed my arm…  “No mommy!  I KNOW!!!  It’s like…. I wish I had a Mommy and Daddy!”  What more could she possibly wish for???

To think that a little girl abandoned on the streets of Shanghai… dying of pneumonia …  “terminal”… sent to an orphanage to die …and endured treatment there, I can’t even bring myself to type, IS FINALLY HOME!  She is surrounded by people who absolutely adore her!  She has a Mommy and Daddy that will never leave her and she has discovered the love and HOPE of Jesus!  In Him, ALL of her wishes have come true!  Who could ask for more?

Would I choose to do it again?  You bet I would!!!   IN A HEARTBEAT!!!



The moment we've all been waiting for... 

(Tommorrow is Rachel's Gotcha Day!)
...is almost at hand!  It's the "almost" part that is almost killing me!  And that illusive...long dreamed for...spent thousands for (sounds like a wedding, doesn't it)...lost sleep for... magical "moment" seems to be near killing this 40 something year old body tonight.  We have the clothes chosen and laid out for the entire family.  We must look good!... After all, this "moment" will be forever memorialized through photos and video clips.  You simply can't get THIS one wrong!  The camera is packed and ready to go, along with an extra battery... just in case.  The video camera has been charged and checked over.  The 7 year old videographer has received in depth training in the "Flip"s use.  More importantly, the 8 year old photographer for tomorrows most important occasion has been brushed up as best she can on photo taking of life's most important events.... I've decided that should this not go well.... my now 7 and 8 year olds just might need therapy!  Such pressure to perform could nearly ruin an otherwise emotionally happy child!  :-)  Paperwork- Check;  Passports- Check;  Camera- Check;  Video camera- Check;  A good nights sleep tonight - I don't think so!!! 

And with all the preparations of the past several months and now the final moments of count down to Rachel for this special "moment"... The truth is that it is just that... a moment!  A beautiful one, but a "moment" none the less.  In the end, it is all the moments following the big "moment" that God will use to weave His beautiful redemption story in the life of a little girl named Rachel Hope.  But tomorrow morning's "moment" is the first moment of many more to come-  the moment when a little girl named Zhao Chun Piao is no longer an orphan but a beloved daughter-  the moment when her mommy whispers "I love you" in her ear and she understands that she doesn't have to make life work alone anymore-  the moment when her daddy spins her around the room like a princess and she realizes that some fairy tales really do come true-  and the moment when, for the first time in her young life she hears the name of Jesus and finally understands what it really means to be loved!  Yes... it's just a moment... but it's a really important one and I honestly can't believe that it is one the Lord has allowed this Mommy to be a part of...  Thank you Lord Jesus!  It is, and will forever be, one of the greatest privileges of my life!  May your heart for the orphans shine brightly through me in this MOMENT!

We Gotcha Sweet Rachel!

I'm not sure there's words for the "moments" of today!  Only that God does so much immeasurably more than I've EVER imagined before, and I'm embarrassed that my faith is so weak.  He's proven Himself faithful time and time again, and TODAY immeasurably more faithful than I've ever known Him before!  We saw Rachel the moment we got off the elevator at the civil affairs building.  She was sitting in an office waiting.  She was wearing the outfit I'd sent for her birthday... and she looked oh, so precious!  It seemed as though she recognized us and began peeking over the back of the chair, waving.  I snuck a little candy to her before we were ushered down the hall for I don't know how many more pieces of paperwork before they would formally introduce us to her.  How many times do I have to tell the very same people my name, my birthdate, my address, the embarrassing fact that I am "only" a high-school graduate and a "home maker"????  Geezy, Wheezy!  Just bring me that little girl of mine!  

FINALLY she was brought into the room and ushered straight into our hearts and her forever family!  I could try to describe what took place inside that crowded conference room, but there is no language known to man that could do it "justice"!  I am shocked and saddened that this precious little girl could have been left alone for so long... could have struggled with a broken heart without a Mommy and Daddy to care... to hold her... to tuck her in at night... It is suddenly so clear why throughout scripture the Lord says that His heart beats passionately for such as these.  Rachel is precious... oh, SO precious!  She is trusting and loving, and her giggle makes time stand still!  Every time she catches your eye, the edges of her mouth curl at the ends as if she is holding back a smile.  Oh my... I could go on all night, but all you really want is the photos... I know!  I've been on the "reading" end of so many blogs dreaming of today!  Hang in there Mama's!  Days like today make every heart ache, every piece of paperwork, every delay, every dime you've spent... worth it ALL!  God is still in the miracle making business!... I know... because I witnessed one TODAY!  :-)

Tonight, at the close of this dreamy day, Doug picked up Rachel out of her little bed, tucked in between Kate and Ellie, because he couldn't bear putting her to sleep without rocking and holding her first...  She nestled onto his shoulder, stroked his face, and hands, and had the sweetest look of peace and utter delight on her face.  When I leaned over to say goodnight, she took my face and pulled me close... smiled that priceless little smile and hugged me as if she might never let go...  Oh Lord,  it boggles my mind that you would trust me with such a treasure... May I be found faithful in tending your precious, little flock!

"Home"- through the eyes of a 7 yr old...

(Bear with me friends... This post may take a night or two.  Being home means that I am up to my eyeballs in laundry, with no cheap laundry service to wash, dry, fold, and deliver clean clothes to my hotel room.  It also means there is no breakfast buffet, with American and Chinese cuisine --- not to mention the cooked to order eggs and omelets!  No waitress to come take our order, deliver the prepared food to our table, and then clean it all up when we leave!  And no maid service to come in and make our beds, clean our room, and replace wet towels...  I think you get the idea!  Here goes anyway!)

28 hours after leaving our hotel in Guangzhou, China ~ We arrived HOME!  It was an awesome, awesome trip!  It would be hard to beat some of the sweet "moments" we shared with Rachel in China... but bringing Rachel through the front door of her very first HOME as a seven year old last night would rank pretty high on my scale of awesome ~ spectacular ~ moving ~ humbling ~ sad beyond words ~ and immeasurably more incredible than almost anything I've ever experienced!

Imagine with me for a moment what it would be like to be 7 years old and to have never experienced a bubble bath because you were showered in groups of 6 - "locker room" style- in an orphanage instead.  Or to never experience the simple summer fun of swimming... not in a lake, or an ocean, or a swimming pool.  Or being a little girl that could never have long hair with braids, bows or pigtails, because it was too much work for the nannies.  Or to love "frilly" things like dresses, makeup, and jewelry, but to grow up with almost all special needs boys that couldn't care less what their reflection looked like in a mirror.  Or longing to run and play, but never experiencing the thrill of learning to pump yourself on a swing or sliding down a simple slide. Or to long for a Mommy and Daddy of your own, but be forced to watch as others leave for "home", while you wait because your needs are just too great.  Or to be dying of a failing heart and never hear the hope found in Jesus, because you live in a culture that believes that blessings come from rubbing the belly of a buddha.  

Last night, Rachel walked into HER home for the very first time... a home filled with love; with a Mommy and Daddy who are crazy about her; with brothers and sisters that fill every day with fun; with bubble baths at night before she is rocked and tucked safely into her snuggly bed; with a bedroom fit for the princess she is and where frilly, little girl things abound; where long hair is allowed and bows are encouraged; where there is makeup and jewelry and mirrors to admire herself in and plenty of people to tell her how beautiful she is; where swimming, dancing, swinging, jumping, biking, and sliding are something to enjoy almost everyday; where doctors are willing to try just about anything to fix her broken heart;  and where she can learn about a Jesus who loves her, who can heal her, and who can make her life "whole", regardless of what the future holds.

That's Rachel's new home!  Watching her take that all in was miraculous in itself!  To realize how much most of us take completely for granted was humbling.  And to be slapped in the face with the reality that for this little girl, these normal, every day things, existed only in a dream world before last night.  And most precious of all?... The look on her face when she noticed the blown up photo of herself - taped to the front of the refrigerator door many months ago-  as if realizing for the very first time that we had been dreaming of HER too!  It makes me cry just to type it-  These things should NEVER be!... Not for Rachel... Not for any child!  But sadly, they are!  For over 160,000,000 ~ they are!  Thank you Lord, for giving me the incredible opportunity to be a part of your beautiful redemption story in the life of this one ~ our precious Rachel!  And for the many people that you used to make this day possible for us and for Rachel ~ our lives will never be the same!  May you find this Mommy worthy of such a great calling.

(OK... I admit it!  Once I got started, I couldn't help myself!  I finished this post in one sitting... But it's already after midnight and my very jet lagged body is going to feel this in the morning! - Continued prayers on our behalf are appreciated, as we only have a few days before our medical "journey" begins...) 

Immeasurably more HOPE...

Sleep well, my precious angel!  God has great plans for you!... a HOPE, and a FUTURE!

Doctors have been astounded that Rachel could still be alive, in light of the reports from China.  But they refused, with us, to sign her off as "inoperable" and leave her there to die.  With much thanks due to these wonderful physicians, Rachel was rushed home for another "opinion"!  And today, that opinion is in... The little girl deemed "inoperable" and sent to the orphanage to die almost 7 years ago, was today proclaimed OPERABLE!!!  There is much HOPE that after a series of open heart surgeries... we can look forward to many happy years together as a forever family!  There are more tests to be done to completely figure out Rachel's very unusual "anatomy", but the echocardiogram revealed that though she has only one ventricle, and one functioning atrium, along with a whopping ASD, transposed "something", and plumbing flowing into and out of her heart in the wrong places... there is still HOPE!  And a lot of it!  Ironically, we have been told all along that one of the things that would prevent possible surgical interventions would be if the pressure in her lungs was too high.  This could do unrepairable damage.  BUT GOD... the one who fashioned her little heart, has actually protected her through something that could have proven fatal for the "average" heart patient.  Rachel has pulmonary stenosis... That means that the arteries that send blood from her heart to her lungs are very narrow.  What would have meant death to most of us, God actually used to preserve her precious life!  Because of those narrowing arteries flowing from her heart to her lungs... the pressure on her lungs has been minimal.  This makes surgery a very viable option!  She's a "half-hearted" little girl, but what she has (the left side!), is strong and has willingly done the work for her body and her lungs for over 7 years now!  A lot of "re-plumbing" and patching needs to occur, but she is in the hands of an incredible group of doctors who believe that God has preserved her life for a purpose and a future!  

We are beside ourselves with delight!!!  And yet, not even slightly surprised!  Though my heart jumped for joy at hearing this wonderful news, I felt deep inside as if I'd known it all along...  God's incredible mercy and grace, displayed so immeasurably in my life has taught me to expect the miraculous... to expect the immeasurably more than I could ask or even imagine!  What a mighty God I serve!!!

We have been admitted to the hospital for further testing... an MRI tomorrow morning and then a possible heart cath to determine exactly how to proceed with surgery on her heart.  As I type, my sweet angel is sound asleep in the big hospital bed beside my insanely little recliner "bed".  She looks like a princess asleep on her throne... and I am rather enjoying spoiling her by propping her up on fluffy pillows and surrounding her with snuggly blankets and sheets.  I want her to feel like the little Princess she is!  What an honor it is for me to have the opportunity to be Mommy to this little girl that God so obviously has "big" plans for... I believe that she will change the world for Christ and am beyond grateful for my front row seat for such a God-inspired occasion!

And you, my friends, who have been used by God to provide a way to get Rachel home and even an abundance to help with the expenses of the healing she needs.  You've stood in the gap for us and for Rachel!  Sleep well tonight!  God's got this one!  :-)  Stand back and be utterly amazed!

Signing off to join my princess in dreamy sleep!  I have to believe that tonight all of our dreamy dreams just might be coming true!!!

"Hope deferred...

    makes the heart grow sick..."

Today's news will be short and not so sweet, as I have a little 7 year old girl that desperately wants to celebrate her arrival HOME from the hospital last night.  I will try to share more details later today!...  

Sadly, what began as such happy, hopeful news for Rachel's heart, after her initial echocardiogram, was followed with some really disappointing findings in her chest X-ray and MRI.  The lead cardiologist said that in all of his years of medical practice with CHD kids, he has never seen a more "complicated" heart.  He is astounded that Rachel has survived this long.  Unfortunately, the life-saving surgery that Rachel needs can ONLY be performed if there has not been too much damage to her lungs while she has waited to finally come home...

Rachel's chest X-ray and MRI results were not promising and the cardiologists now fear that Rachel is inoperable.  A heart catheterization as been scheduled for next Wednesday (Oct 5) to determine how much damage has been done, and if it is too late for her to have the open heart surgery she needs.  

The doctors determined that the best thing to do was to send Rachel home this weekend, as she was grieving terribly for her new home with "Baba" (Daddy).  It was an emotionally packed few days for her, after thinking that the hospital was actually her new home --- and one that she did NOT like! This was one of the most heart breaking things I have ever witnessed and I could not wait to walk back into our front door late last night... In some ways I think spending 5 days at home before going to Gainesville was a real blessing... but after hours of puppy like crying and pleading to "go home to Baba", I wondered...   And yet, this precious child has FINALLY experienced the matchless love of a Mommy and Daddy and she doesn't ever want to look back!  How blessed we are to have been chosen by God to be the fulfillment of a precious child's dreams of "home".

Ultimately, Rachel's HOPE and HOME are with Christ, and yesterday's disappointing prognosis can not change that!  Doug and I are at perfect peace, and sense the all sufficiency of God's grace more than ever before.  We are resting, knowing that He will be glorified through whatever He chooses to do in and through Rachel's life...

We do ask that you would join us in praying for a miracle!  We fully believe that God can heal Rachel's lungs... and ultimately her heart and are asking Him for that, as our heart's desire is to have the privilege of sharing a long life with our precious new daughter.  HOPE is still fully alive... even though temporarily "deferred"!

We are experiencing "immeasurably more" grace than we could even imagine and are grateful that Rachel's future rests securely in His hands...

Two Beautiful Words...

SURGERY or TRANSPLANT!  Our wonderful team of cardiologists will meet tomorrow morning to decide...  This happy mommy will take either, as both mean one thing.... OPERABLE!  My Lord... so much immeasurably more than I ever imagined!  To Him be the glory! 

Hope Re-born...

I can't stop staring at her!  It's 1:30 am, she's sound asleep, and I'm exhausted!  But like the nights following the birth of my other children, hanging over their bassinets in wonder long after the world had gone to sleep, I can't seem to help myself from trying to memorize every sweet detail of her precious face...  Her rosebud lips are dry from her heart catheter today, but oh, so perfect!  And her beautiful eyes... closed in sleep now, still show the unusual way they curve up at the ends, as if a makeup artist painted on this most beautiful asian detail!  And the curve of her ears... I hadn't even noticed before now!  She is cuddled warm and snug with the bunny Daddy brought her as she woke up in recovery this afternoon.  Her cheeks are blushed with sweet pink and even her hands are warm and pink tonight... I lean down to hold her hand and to smell it... yes... to smell it!  I want to memorize that too!  I ran my hands through her beautiful, wavy black hair and gave her one final kiss on the cheek before finally turning out the lights to say goodnight to this most beautiful, miraculous day!  

I am struck by the fact that though I met Rachel three weeks ago in China, I have not allowed myself to go to this place emotionally before tonight.  It hadn't even occurred to me that I had somehow "skipped" over this mothering tradition with Rachel.  Maybe it's because she's not the baby ordinarily stared at while sleeping, but a 7 year old little girl... Or maybe it's the way I have been unconsciously holding my breath for over five months... wondering if the baby I was "carrying" in my heart would live or die.  But as I stare over the side of her hospital bed tonight, I realize that in many ways, in my Mommy heart... today was Rachel's "birth" day!  Today it wasn't an OB/Gyn that announced the happy news, but a cardiologist.  At about 3:30 pm, on Oct 5, 2011, Dr Fudge walked into a little office on the second floor of Shand's Hospital and delivered the most miraculous news this Mommy has ever heard... Rachel is OPERABLE!  I hardly remember a word he said... My heart was pounding and I could hardly breathe...  I tried to read his facial expressions... Did he seem happy or serious?  I remember wanting to grab him and force him to blurt it out!  Was there hope for Rachel or not????  Just say it!!!  He started the very way you'd expect... "Everything went well with the cath today... no unexpected complications... Rachel did great..."  (ENOUGH ALREADY!... say it!!!)  He continued... "I was not able to perform the balloon on the clogged valve today, because the tissue was extremely thick in that area... and I considered trying to make a new opening all together, but it would have been very risky, so I called Dr Bleiweis (the surgeon) and he said that he would remove that tissue during surgery..."  Did I just hear the word SURGERY???  I'm certain I did!  Which means I heard little else!  Praise be to God!  Rachel is OPERABLE!  

Long conversation followed regarding Rachel's very unique heart and the long term plans (YES... I said LONG TERM plans!) for her care!  Eventually Rachel will likely need a heart transplant... but for now, plans are being made for surgery to improve the function of her heart and protect her lungs from further damage so that in the future she will have the option to have a heart transplant when necessary.  What a beautiful word ~ OPTION!  Filled with HOPE from the God who fashioned her unique little heart and preserved her precious life for this moment!  

Doctors are astounded that Rachel is still alive today and that hope-filled options even exist for her!  Apart from God... they didn't!  But God!... (I feel as if I should type that again!)  BUT GOD... has a plan for our precious Rachel Hope and somehow that plan includes ME!  I am so immeasurably blessed to be the one she calls "Mommy"!  So tonight... I'm letting the blessed news of hope sink in... and allowing myself a few sweet moments to begin memorizing the wonderful ways God fashioned my precious new daughter... and committing what life He gives~ to His glory!  

Rachel's surgery is scheduled for Oct 24 at Shand's Hospital in Gainesville at 7am... But she is at the top of the "call" list, should there be a last minute opening on Dr Bleiweis'  schedule.  We are praying that there will be, as we are anxious to get through surgery and finally allow Rachel to get started with all the beautiful things that God has in store for her!...   We covet your prayers for Rachel as she finally receives the life-giving surgery she's waited so long for!

In His Hands...

I'm sitting in a wheelchair outside a hospital room... typing this blog!  Can't say I ever imagined such a thing... but here I am!  And incredibly grateful for the last minute opportunity to do so!  My home phone rang at 4PM this afternoon, and as has become my habit these past few weeks... I sprung to my feet to answer!  It might be the University of Florida/ Shands calling to reschedule Rachel's surgery for an earlier date.  Finally, today,... the phone call was actually them!  A last minute opening in Dr Bleiweis' schedule means open heart surgery TOMORROW morning!  I'd have loved to have been a fly on the wall this afternoon as I tried to pack for a "journey" that could last one week.... or drag into a month!  How in the world do you prepare for that???  Oh well... I did the best I could and a few hours later, Doug, Rachel, and I were on our way to Gainesville!  

Our incredible translators from the Chinese Church here in Gainesville were here to explain tomorrow's events to Rachel and to walk her through getting her IV line in place. They were wonderful!  Rachel ~ even more wonderful!  Handled the whole thing like a champ!  I think she's ready to face the giants of tomorrow!  I feel certain that Jesus will take this journey with her, don't you?  Just before saying goodbye to our translators/ brother and sister in Christ, we asked if they would pray with Rachel.  They, of course, agreed and invited Rachel to begin... These were the sweet words that formed our precious Rachel's first prayer...(at least the words that I could understand!)...  "Daddy, Mommy, Rachel's heart,  Russ' Happy Birthday,  Kate and Ellie, .... Jesus,  Amen!  The tenderness of a child's prayer~ spoken in some pseudo-language, somewhere between Chinese and English.  I praise God that He knows her heart and heard every word of it perfectly!  I'm pretty certain that nothing can warm your heart quite like the prayer of a sweet child... so I've attempted to attach her prayer in the car as we pulled into the hospital tonight....(key word would be tonight... meaning it is DARK!-  But it's the prayer spoken that will melt your heart!)

If that's not enough to make your heart happy, I'm not sure much would!  Here's a few sweet pictures of the beginning of our journey to Rachel's new heart... (well~ sadly it is 2:40 and I can't seem to find the photos I wanted to share with you!  I guess you'll have to hold your breath for tomorrow when I can think a little clearer!)  ~ It appears that moment might be now--- 7 hours later!  Here's a few photos of our brave girl...

We covet your prayers for Rachel tomorrow morning (Oct 18) beginning at 7 AM and then for most of the remainder of the day!  Her heart and lungs still need a miracle and we are trusting God for just THAT!  :-)  He is able!... And in His goodness and immeasurable grace we find rest!

I'll post soon with wonderful updates as they become available throughout the day!  The marathon begins!  On your mark... Get set... GO!!!!

1 comment:

  1. Hi Rachel!!! It was a pleasure meeting you and your mom, here in Gainesville! We hope to keep in touch with you!!! You are an inspiration to us all, sweet girl. :)
    ----Bailey and Tia


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