I know it sounds like the impossible, and I suppose it is! But we have had such a JOY-filled year, even in the midst of waiting! I admit that there are parts of the wait for that perfectly matched heart that get old... really old!!! Like packing, unpacking, and repacking our hospital suitcase each time the seasons change; and not being able to plan anything short-term, long-term, and anything inbetween-term because the phone could ring at any moment and all those plans would be scrapped!
But the wait has had some benefits that we are soaking in and learning from. Most of all the wait is teaching us to make the most of every opportunity to really LIVE! I wish that we could see this with our everyday eyes... but we most often don't. Knowing that Rachel is living on borrowed time brings that all back into focus... and for that, each one of us is very grateful!
Another benefit in the waiting is coming to terms with the fears of life and death. This is HUGE to get your arms around- even as an adult. But when you throw an 8 year old child in the mix that spent her first 7 years in a horrid institutional setting, it seems like a mountain to get over. The time has helped all of us with that and I marvel at all God has done in our hearts.
Rachel is not afraid. Period. She says that if a heart doesn't come in time- she's the lucky one, because she will be the first to heaven! (Now THAT is perspective!) She loves Jesus with all of her heart and lives completely in the "present"- so thankful for life, for family, and for home. We could all learn so much for her sweet, trusting spirit!
I understand like I never have before, the way God intends for us to live... ONE DAY AT A TIME and glorifying HIM as we go!!! We are choosing to do that as a family on a spiritual level and with Rachel on a physical level as well... She remains "stable" as she waits, though she still has only gained one or two pounds since she came home from China. I didn't know it was humanly possible for her little arms and legs to be any skinnier, but with each inch she gains in height, she loses it in her arms and legs... But "stable" is more than we can ask for and we are grateful!
Continue to pray for Rachel as she waits for that perfect match... and pray for the family that must know such loss in order for Rachel to have life. We are most grateful for the friends God has brought alongside us for this difficult, yet JOY-filled journey! Thank you!!
January 23, 2013 ~ How is that possible? I can hardly believe that the new year is here and after over 10 months of waiting, we're STILL WAITING! I'm embarassed that I haven't posted in so long, but honestly, how much is there to say about "waiting"? I remember my first born son writing a song once entitled "This is my last song about waiting!" He was tired of writing song after song about the woman of his dreams and simply couldn't bring himself to write another one! The love of his life did, finally come, and in muy opinion, she was well worth the wait!!
I continue to trust in God's perfect timing for Rachel's new heart too, and yet I continually struggle to think of the incredible loss another family will bear in order that our precious daughter might live. You can read all of my thoughts on this difficult subject on my recent blog post at www.LoriMcCary.com (Heartbroken...)
In short- I have released my precious daughter into God's all-loving hands! He loves her even more than I do, and by His grace... she loves Him too!!! No doubt, our Rachel has great HOPE, regardless of whether that heart comes in time or not! We live day to day with immeasurable peace! This comes only through the grace of God and we've never felt Him so near!
Thank you for continuing to pray with us for Rachel! She goes to the Doctor for testing every single month and is declared "stable" each time! Praise God for the way He continues to sustain her as she waits! Rumor has it that the list has completely cleared ahead of her and she is next in line for either a B+ or an O+ "matching" heart! Staying vigilantly by my phone 24/7, but beginning to long for the day that I no longer live out of a suitcase!!! :-)
August 28, 2012 ~ God has been so gracious, and kept Rachel strong throughout the summer! We are so grateful to have spent this special time with her. We continue to wait on God's perfect heart for Rachel. Several days ago, she asked one of the most beautiful questions I've ever heard...
"What does HOPE mean, Mommy?"It never crossed my mind that she might not know! Duh! Only 10 months into the English language, and somehow I expected she automatically understood this concept that shapes my entire existence... and hers! We'd been through the whole Make A Wish - "What does WISH mean?" thing, but I was completely unprepared for this one! How do I explain real, lasting HOPE to my dying 8 year old daughter in words she can understand? It's so much a part of who she is! Her name ~ Rachel HOPE and her website ~ HOPEforRachel! It's on Tshirts and bracelets and decorations throughout our home ~ H O P E
I fumbled around for an answer while 6 little eyeballs stared at me from across the dinner table. "Well", I started, "It's not like "hoping" for an ITouch for your birthday, or even "hoping" for a mommy and daddy of your own. Because even if you never get that ITouch or, heaven forbid, you never get a mommy and daddy, HOPE is still alive! It's not what we're hoping for... It's who we're hoping in... Our HOPE is in Jesus!" "So..." I asked Rachel, "If God doesn't send a new heart and decides to take you to heaven instead, is there still hope???" I could see the wheels turning in that little mind of hers, so wanting to please me with a brilliant answer. "No???" she answered timidly, sounding convinced she was probably wrong! Thanks be to Jesus, she was wrong! Kate piped up from across the table... "Yes! Of course! Because even if He takes you to heaven, we'll see you when we get there!" Ahhhh! Now we're on to something!
Hebrews 11:1 ~ Now faith is the assurance of things HOPED for, the conviction of things not seen.
I spent a full 24 hours chewing on the matter and doing a gut check on myself! Where is my HOPE? A sweet friend died this week following a full rejection of the heart transplant she received just a few months ago. The memorial service is today. Is hope still alive for her and her grieving mother? And what if God decides to take our Rachel home too? What then? Will I feel the urge to dismantle my home from the many displays bearing any reminder of hope and silently declare that all my hopes have been dashed?
Hebrews 6:19 ~ We have this HOPE as an anchor for the soul, firm and secure.
I admit it... I do "hope" that God's plan includes many more years with our precious Rachel. I "hope" that His healing miracles abound in the coming months. For that matter, I really "hope" that His plan is not to take any of my other children home before me either! And while we're at it, let's add my husband to that list too! I, like you, have many hopes and dreams for myself and for my kids.... But that's not the kind of hope we're talking about at all! How grateful I am that my true HOPE is not pinned on circumstances that are unpredictable and ever changing or resting upon fallible human beings. We are promised in the Bible that as believers we WILL have troubles, but we should not lose HOPE, because Jesus has overcome the world! Our hopes do not rest in the here and now. Our hopes rest on something far greater!
Psalm 119:49-50 ~ Remember your word to your servant, for you have given me HOPE. My comfort in my suffering is this: Your promise preserves my life.
Jesus Christ is our living HOPE! Because of this reality, the apostle Paul told grieving believers to "not grieve as others do who have no hope". If we lose Rachel tomorrow, you can bet we will grieve... deeply! Our home would never be the same again, after having her sweet, joyful spirit here for nearly a year now! And the more I fall in love with her, the more I realize how great the pain would be in losing her. But we didn't bring Rachel home with any promises attached. We didn't even bring her home based upon any hope of a medical miracle for her broken heart, though we would be thrilled if God's plan included that! We brought Rachel home because we wanted her to know Jesus. We wanted her to know true HOPE, found only in a sweet relationship with Him! We've never promised her that we could fix her heart. Nor have we ever promised her a new one. But we have promised her that God has not forgotten her... that He loves her... and that He will never leave her. Doug and I believe whole heartedly (pun intended) that God has preserved her life for a reason! He's brought her to a home where she is deeply loved and daily taught the love of Jesus. He's brought her here so that we could answer the life-altering question she asked last night... "What does HOPE mean, Mommy?"
Psalm 130:7 ~ HOPE in the Lord, for with the Lord is unfailing love and with him is full redemption.
The world's idea of hope is "to wish for, to expect, but without certainty of the fulfilment; to desire very much, but with no real assurance of getting your desire". But the biblical usage of hope is an indication of certainty! HOPE, in scripture, means "a strong and confident expectation"! God's Word is full of promises for us, as His children, that we can find great HOPE in,... and stake our very lives on!
Romans 15:13 ~ May the God of HOPE fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in HOPE.
I want my children, and most especially Rachel, to know that our hope is not fixed on a healthy heart arriving in time... God's plans may not be our own. But we can have "a strong and confident expectation" that whatever His plans are, they are GOOD and filled with promises that give us great HOPE!
Psalm 146:5 ~ How blessed is he whose HOPE is in the Lord his God.
July 24, 2012 ~ We have returned from our incredible time of vacation together as a family and are enjoying these special days of summer together. Rachel's cardiologist was nervous that her heart function might have declined with all our traveling (2700 miles worth!), but God has graciously kept her strong! There was no significant decline and she continues to astound the medical community by marching ahead in spite of her very broken heart! It is easy to be lulled into forgetting how critically ill Rachel is, when you spend your days around her happy spirit. But one search of google on Hypoplastic Right Heart Syndrome and I was instantly reminded what a walking miracle she really is. Rachel's particular condition is "extremely fatal" unless surgery is performed within the first few months of life.... Only God could have kept this precious child alive for so long to finally bring her home and to a place of HOPE! We are honestly surprised that she continues to wait for the perfect heart, but she is "top priority" at Shands, according to the transplant team, and they expect something in the near future! We are choosing to thank God for this special time and for the way He continues to keep Rachel strong until the perfect heart is found! Please pray with us for the family that will ultimately give Rachel the gift of life. Pray that the Lord would grant them special time with their child so that they can move ahead with no regrets... Pray that the same would be true for all of us as we seek to love our children!
June 8, 2012 ~ Today marks 3 months of waiting! We honestly didn't expect to wait this long, as Rachel's been at the very top of the list since the very beginning. Unfortunately, several hearts that have been possible matches have been turned down because her transplant team wants to wait for the PERFECT one! So we continue to wait! Our bags have been packed and repacked many times over the past few months... always ready to go at a moment's notice! But this week we're getting a little "vacation" from waiting while Rachel's incredible surgeon enjoys some much deserved time away. I have to admit that it feels good to ignore my cell phone for a few days and enjoy a short time of rest from living "on the edge"... We have decided to take several weeks as a family and sneak away for a much needed vacation. Once Rachel's surgeon returns next week, we will again be on call, should the perfect heart be found. But it will be nice to have a little fun together while we continue to wait. Angel Flight will be on standby to get Rachel and me to Gainesville as quickly as possible if the call comes while we are away. I will, of course, update you here as soon as that happens! Please pray for Rachel as we travel- that God would strengthen her. Pray too, for the family that will face such a difficult decision in giving HOPE for Rachel. They weigh heavier on my heart with each passing day... I'm so grateful that we all have such a loving Father to lean on in times like these! Resting in His strong arms~ Lori
June 7, 2012 ~ Welcome to HopeforRachel! Here's where you can get the latest news and updates as we follow God toward healing for Rachel... Rachel was listed for a heart transplant on March 8, 2012... wow! 3 months tomorrow! Waiting is proving to be harder than I expected, though I am grateful that she is still strong. We covet your prayers for her and for our family as we wait.