April 7, 2011

Joy

Yesterday was truly difficult.  We felt the sadness and desperation that can only come with the kind of news we were receiving and the depth of love we have for our child.  It was devastating.  But because we know that our God is good and because we know that all of our days and hours are numbered, I have spent the last couple of days trying to change my focus.  Instead of trying to understand the medicine, the treatments, the numbers, the options and the doctors' thought processes, I am instead trying to savor each and every moment with my child and focus on my role as her mother.  When doctors say things like, "end of our medical options" we know that does not mean the same as "the end."  So, we are handing Clara over to God in an even deeper and fuller way than we have before.  It's a little terrifying, especially for someone like me who loves to be in control, but it is also freeing.  So what if the doctors don't have any more ideas?  I know Someone who might.  So the past couple of days I have stepped out of the room for rounds instead of frantically scribbling notes.  I have tried to hold Clara's hand extra tight, sing her songs extra loud, read her stories extra softly, tickle her toes extra tenderly, and take lots and lots of pictures of her beautiful face. I have changed her hairbows and kissed her fingers and stroked her soft skin and gazed into her beautiful eyes.  I have loved her well and it has brought me joy.  Deep, deep joy.  I continue to hope and pray that we will experience a miracle and that these will just be a few of the many, many moments of joy that Clara brings me throughout her long life.  But I am going to treasure each moment now and know that it is a gift from God, no matter how many more there may be.

Allow me to share with you some of those moments of joy:

holding Sweet Mama's finger...



Beautiful little fingers and tiny little nails...

Open eyes

Double kisses

The love of our lives

Holding Mama's finger and squeezing tight

Wardrobe change!  (Yellow ribbon today)

pudgy little swollen toes




Mother and daughter, matching today....

Doting on her.

Can't get enough of these



Meeting her great-grandparents for the first time - Mema and Papa
So, medically today was better.  We say that cautiously because it was better only relative to the last several days.  We feel like since surgery a week ago we had some days that were stable and many days where we took giant steps backwards.  Today was the first day where we maybe took just one tiny, baby step forward.  We're thankful that things weren't any worse and give praise and glory to God for what may be the beginning of the miracle we've been asking for.  She tolerated diuresis very well today and actually peed out more fluids than she took in for the first time since surgery.  The doctors are hopeful that if this continues, and it pulls fluid out of her lungs, that maybe they can begin to inflate and fill and the pulmonary hypertension will ease.  Her right heart is still very damaged.  Her lungs are still very wet.  Her body is still very broken.  We have a long, long, long journey ahead of us.  We are nowhere near out the woods.  But we are so thankful for the respite from bad news and the renewed hope for a future with Clara in our arms.

The many prayer warriors out there have been more of an encouragement and hope than we can ever express.  We thank you for not giving up.  We thank you for recognizing Who has the power in this situation.  We thank you for believing and hoping and expecting miracles.  We thank you for praying.  We thank you for sharing in our joy.

"Rejoice in the Lord always. I will say it again: Rejoice!"  Philippians 4:4


"The Lord has done great things for us, and we are filled with joy."  Psalm 126:3

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."  Romans 15:13

37 comments:

  1. I saw Nisrine today and we spoke about your family's story. Praying for you and in a small way walking this journey with you!

    Love,
    Elizabeth Brill
    WFU '01

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  2. Still praying for sweet Clara and SO thankful God is still in the healing business.

    Bethany Settle

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  3. Jeremiah 29:11 "For I know the plans I have for you says the Lord. Plans to prosper you..."
    In constant thought and prayer for Clara.
    Love, Mary Ann & Chuck Martin

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  4. Clara is so blessed to have you and Robert as her parents. What a sweet and perfect mom you are to her. Praying for you all continually.

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  5. I found your blog through a friend who is following you and praying too. I just wanted you to know that one more person is on her knees thanking God for Clara's life and humbling asking for a miracle of complete healing for your sweet daughter. Blessings, comfort and strength to you as you rest in the care of our Father. By the powerful love of Christ I pray for you all. Tracy in Colorado

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  6. Thank you for sharing your journey. Thank you also for posting the cute pictures - she is adorable. Glad today was a better day.

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  7. A friend from Elberton came in the store today and told us about your blog. I've read it with tears flowing,but am filled with hope! The faith and courage that the two of you are showing is incredible... God is using this situation already I'm sure! What an inspiration you are! Out thoughts and prayers are with you all.Clara is beautiful! With Love,Mary Lynn & Earl

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  8. I want you to know that your Shady Grove friends love you and we are praying for a miracle for little Clara.

    Regina

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  9. Thank you so much for letting us share the joy with you and Clara today. I am busting with pride for my brave niece, and filled with peace and hope after spending time with her. We love you all.

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  10. With all of my love, Chrissy... with every last ounce of it... I hope, and I hope, and I hope........ you are near to my heart each and every moment of the day.

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  11. "Faith is the bird that feels the light and sings when the dawn is still dark" - Rabindranath Tagore.

    You are such an inspiration... keep singing loudly!

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  12. My prayer for you tonight is that unbelievers can read your story and come to follow Christ. I can not even express how great your faith shows through this blog. To say your faith is amazing would be an understatement.

    I heard a quote once that I feel is so fitting for you: "Faith is not believing God can, it's knowing God will."

    I pray that God brings you comfort in your times of struggle and uncertainty. I pray that He holds you tight and you feel his presence. I pray Clara begins to make simple steps forward. Clara can be healed by our Father!!!

    Much love and many prayers - Kim

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  13. So glad I was able to see you today in the parking garage. You look great, and I was so encouraged by your happy demeanor. I did not get the chance to tell you that we are praying for sweet baby Clara. You are on our hearts and in our prayers. I know that God has a beautiful plan for her life. He is on His throne.

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  14. Chrissy and Robert,

    Thank you so much for sharing Clara's journey with us. I praise God every time I see her beautiful face. I especially love the pictures of the three of you, and the Clara holding mommy's finger ones....OK, I love them all. We hear a collaborative "awwwwwww" in our house as we all enjoy seeing her pictures. She is beautiful~~fluid, tubes, bows and all.

    I want to say a "Thank You" to you both. As difficult, busy and tired as we all know you are, the updates still come. I follow you on the blog and by twitter. Presley now asks me when I am on my phone if I am "checking on Clara?" And indeed most times I am. We rejoice with every moment of joy and pray for understanding with every low.

    I cried tears of joy tonight with this blog. God is great! I praise him tonight for giving you the peace you speak of. You are an amazing woman, Chrissy. God understands your pain and will provide. "Not by might nor by power,but by my spirit, says the Lord." (Zechariah 4:6)

    Our prayers for Clara and your family continue always. Our prayer praises for your peace are steadfast. "Peace I leave with you, my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." (John 14:27)

    God Bless you all. She is beautiful!!

    Love,
    Nicole Jones

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  15. There you go Chrissy! You are Clara's Mamma!
    I can not even begin to tell you the way you all (three) inspire me with your faith and your prayer and your words. Thank you for inviting me into your life to share in your joy and pain and intense spiritual growth. I'm honored and humbled to be praying for your family!

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  16. I praise God for You and Robert and Clara and I can truly say I am up lifted by your FAITH every day as I read your blog. You all have been a blessing to so many. We pray only the best for you all.
    Love,
    Annette and Randy

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  17. The greatest joy of motherhood and fatherhood is spending quality time with you child and pouring out your love to him/her. You and Robert are doing this so well. Clara knows she is loved! She feels it with every song, every story, every touch. We are praying for you all...and we too love Clara Mae.

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  18. Bless you for putting all the pictures on so that we can see Clara and her family that adores her so!!!

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  19. From the moment Clara was born this verse has been in my heart and I want to share it with you. Job 23:10 "But he knows the way that I take; when he has tested me, I will come forth as gold". God is still knitting Clara into a whole and beautiful baby. We must give God our patience and our faith that He will soon reveal her has a precious piece of gold. You are so right Chrissy to give every ounce of yourself to Clara. Your voice, your touch, your faith, your love is what she needs more than anything right now. Still praying and praying!

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  20. Thank you for sharing the sweet pictures of your sweet girl. I am so glad to hear of some good news and I pray that today will be a good day - that you will hear another piece of good news, and another, until she is on her way.
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

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  21. We've never met but I've been reading this blog through Meredith McCormacks posts. I'm praying for you guys and for sweet Clara. I wanted to share some bible verses that a friend sent me and they really help me when I'm in rough patches. I hope they have the same effect on you.

    "Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."
    Philippians 4:6 - 7

    My GRACE is sufficient for you, for My power is made perfect in your weakness. Therefore I will boast all the more gladly about my weakness, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weakness, in insults, in hardships, in persecution, in difficulties, for when I am weak, then I am strong. 2 Corinthians 12:9

    I will continue to pray for you and for Clara.

    Love,
    Cathleen Crews

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  22. I am a co worker of Courtney Hughes. She introduced us to your family and yet while you all are strangers to me, my heart feels a sense of closeness to the family and to this beautiful little girl. Please know that you are continually in my thoughts and prayers. Thank you very much for sharing your journey and I hope you know how much you strength and love for your baby shows in your posts and pictures. She has truly made an impression on this strangers life. I wish you all the best
    Amanda jolly

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  23. I am praying for your family. Please stay encouraged and I pray that the peace of God continue to fill your hearts. Your daughter is very beautiful, and thank you for sharing your story. God bless you and your beautiful family.

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  24. I am a family friend of Jeana & Ben Hodge. I am praying everyday for beautiful Clara! Mark 11:22-23

    Lorie in Michigan

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  25. Diane (Blackburn) BurksApril 8, 2011 at 11:26 AM

    Chrissy,

    I heard about Clara from my parents this week. I am so grateful to have found your blog to read about you and your life after all these years. Your strength is inspiring, and you, your family, and little Clara are in my thoughts and prayers.

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  26. On our knees in Aurora Colorado and praying for your beautiful family.

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  27. Robert & Chrissy...what to say? What you write on this blog is a huge statement of faith and trust that we can all learn from. God's using you and sweet Clara in big ways. I'm praying for continued strength and rest. Much love from our family...

    Katie (Eckler) Sulka

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  28. Prayers from Pa. for your family.

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  29. I like the statement where she peed out more than she took in!!! That is good news and encouraging! We will continue to pray for her to keep that process going and her pulmonary pressures to recede. Little bit by little bit works. Joanne

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  30. So many prayers coming your way for Clara - she is so beautiful. Each and every day with her is a Gift from God, praying for a miracle!

    Megan Skaggs
    Project Sweet Peas Local Project Leader - MJ's Memories
    www.projectsweetpeas.com
    Mommy to my twins
    Will and CDH Angel MJ

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  31. I continue to burn a candle in vigil prayer for Baby Clara! We are praying for good news and news of progress. Team Abel in Colorado has rallied around to pray for The Hardy Family!

    The Burton's
    Parents to Abel Kane
    CDH Surivor Born 10/22/10
    http://abelkaneburton.shutterfly.com/

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  32. Chrissy and Robert,
    I don't know you personally but we have mutual friends. Please know that I am praying for sweet Clara Mae every time I think of her, which is several times an hour. My heart breaks for you and I weep with you. You are showing what true faith in crisis really looks like, and I am amazed and humbled. Know that you are being joined in prayer by so many. Clara is such a precious special girl, and has captured so many hearts. We are praying for the miracle we know God is capable of.

    In Christ,
    Sally Lambeth

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  33. Praying for beautiful baby Clara and your family.

    Teddi Seibring
    Mom to Flavius 8-27-2008
    LCDH Survivor

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  34. Chrissy and Robert,
    Our friend Amelia Hopkins sent this to my mom and she passed it on. I don't know you or your family but I can relate to what is going on. My son was born Feb 16, 2011 and spent 12 days in NICU. Our problems all started when I was pregnant. After having surgery on Wyatt in utero we thought all was well. He was then born with a collapsed lung. The joy of giving birth to a baby boy was taken away so quickly when he was taken from me to go the NICU. I KNOW we serve a GOD that is so much bigger than our imaginations. Hold to HIS truths, HIS words, HIS promises. Our God does not sleep! He hears our spoken prayers and hears our silent cries. Those 12 days were the hardest days of our lives. I know the pain of not being able to bring a baby home soon after birth, of walking into an empty nursery, not being able to smell the "newborn smell", not holding my baby, and not being able to feed my baby. Those emotions are so real. It was scary to see our baby on the vent and all the machines. I always say, "It should not be my baby on the machines." But it was. For some reason God chose our family to walk that long journey. God has given us and our son a testimony of HIS grace and healing. I pray that you will stand strong and cling to God with all you have. God chose you and your husband for a divine purpose. God is using you as a witness to so many. Many of whom you do not know.

    I pray that your fear, and anxiety will turn into peace and hope.

    Cling to Him,

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  35. friends,
    i've read this particular post the most, Chrissy. You are already teaching me about motherhood, and you just started the journey. I had a tiring day with my boys today (made Owen cry from my own anger and didn't love Wiley enough). I read your post and am humbled to tears.
    We are praying for sweet Clara and are so thankful for you all.
    love you,
    Katie Davis

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  36. I was sent your blog today and I wanted to let you know I'm praying tonight for Clara and for y'all.
    My daughter Harper had a rough start to life and spent a month in the NICU - she was meant to go on ECMO but ended up not. So I know a fraction of what you are going through.
    God is a God of miracles - praying for one for your family tonight. I pray your obvious faith keeps you comforted and sustained.

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  37. It truly is an amazing journey. It's wonderful watching Clara's daily improvements and giving thanks to God for all the doctors, nurses, and all those around her. Prayers are powerful and Miracles do happen. We have living proof.
    Ramsey LCDH survivor 3mo.old
    Gram Mary

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