Monday, February 23, 2009

Say a Prayer for Gracie

I have been deeply affected by a little girl named Gracie Gledhill. It has been a roller coaster ride for her sweet family whom I’ve never met. I heard about her from Leslie Cluff who lost her child to CHD. Immediately, I was drawn to Gracie’s story. Her young mother, father, 2 brothers, 1 sister, and a countless number of people have been praying for this little girl. Gracie was born with a severe congenital heart disease. After various up hill battles, hope and prayer, she was listed for a heart last Tuesday. She was placed at the top of the list under the care of my transplant physician. I witnessed a miracle when I learned Saturday night that a call came. Doctors had a heart for Gracie. Throughout the night, morning, afternoon, and into the evening, her mother updated the blog whenever they had news. I kept checking in to see what was happening.

But, today she is struggling to survive because her body is rejecting the heart. I don’t know what’s going to happen. But, I am humbled. This is a sobering experience. A great man once wrote something like, “I don’t know the meaning of all things but I know that God loves his children.”

(Picture: These machines are the ECMO. They can sustain Gracie for a a little more than a week.)

Say a prayer for the Gracie Gledhill family.

30 comments:

  1. Wow, what a beautiful post. I am Gracie's aunt and I wanted to thank you for your kind words. I actually heard about you a while ago because I am close friend's with Jenn and Carter Allen. I never dreamed that a transplant would be in Gracie's near future and it's nice to know some other people who have walked in her shoes. Thanks for your kindness and the music you sent, you are a wonderful person. I hope you get your new healthy heart very soon, we will be praying for you!

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  2. Leslie told me about Gracie, too, and I've been following her blog constantly also. It is so hard to hear about what her family is going through. I haven't been in their exact situation, but I know enough to understand how painful it must be. I am so impressed by your compassion for others, when you are going through such a difficult time yourself. I'm praying for both Gracie and you. It's amazing how complete strangers can be so linked by their common experiences--I think of both of you and worry and hope that all will turn out well for you. Thank you for your email the other day--it meant a lot to hear back from you. I'll be praying for you and Gracie.

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  3. What a sweet baby girl! We will be praying for her and her family. Your blog and story is doing so much good for so many people.

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  4. Paul,

    Thank you so much for your sweet post on our Gracie. I was so touched that you made a playlist for her. You are one of a kind. I CANNOT believe that song titled Gracie......and for them to sing 'Gracie Girl' just like what we call her is crazy. I will definately be downloading that song! We are still listening to your CD 24/7, it brings such a special spirit to her room. I love that I know she can hear it even though she is completely under the influence of medications. Thanks again, we are thinking about you often and praying for you always.

    Michele

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  5. Hi
    I just stumbled upon your blog and wanted to let you know how inspired I am by you. My daughter, who will be 5 in May, is a single ventricle (with TGA, VSD, ASD, among other things) and her her Fontan 2 years ago this May. I always worry what her future looks like - thinking that I'll loose her before she is an adult. Reading your story gives me hope. I have only read through the first several post but I plan on reading more as I have time.
    Thanks for sharing your story.

    Dina
    jilliansommers.blogspot.com

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  6. I too follow Gracie's story, my son has the same defect. I am just in awe how much they have had to endure! My heart ache's for them and pray there is another miracle just around the corner for her!

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  7. Paul,

    I found your blog through Gracie's. What a beautiful post you have written about her. My son was born almost 6 years ago with TGA, and though is prognosis is good, I sometimes wonder what life will be like for him. It is so great to see adults living with heart defects (that sounds weird, not great that they have problems, but great to see them alive and living wonderful lives, kwim?), it gives me so much hope for his future. We will keep you and your family in our prayers.

    Sarah
    Jax's mom

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  8. One more thing, I want to add your blog to mine. I hope that is okay. If not leave me a comment and I'll take it off. Thanks.

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  9. I am a friend of Michele Gledhill, and I linked from Gracie's blog. I was so blown away by that beautiful song about Gracie Girl. I am also blown away by your kindness and compassion for Gracie and her family. What a wonderful person you are to think of others while you are struggling with heart problems yourself. The thought of Gracie listening to that music while she recovers warms my heart. We will pray for you to receive your new heart!!! God bless you!!!
    Natalie Peterson

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  10. Paul, My husband and I have been so inspired by your blog as we have learned more about your life and living with a CHD. You are an amazing man, with a unique mission and with such an amazing family. You are bringing hope to so many through your faith, optimism and hope in Christ. Thanks for having an immediate impact on our family and thousands others. We are praying that the Lord blesses you with a heart that is perfect for you and that in the meantime you are filled with peace and comfort.

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  11. Paul:

    We are Gracie's grandparents and would like to thank you for your prayers and support for the family. When we walk into Gracie's room and hear your music it is an oasis in the middle of all the controlled chaos going on around Gracie. You have been an inspiration to the entire family with your gracious kindness. Thanks and God bless

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  12. You are on my prayer list along with little Gracie and Owen Simmons
    for a perfect heart. Yours is so big and kind it may be hard to replace :) God Bless you and your family.

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  13. Thanks Paul. I've been following Gracie's journey all year with so many other strangers. Your words and music are truly inspiring. What a big heart you have.

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  14. I love this post. I have recently begun following your heart transplant journey as my husband and I are expecting a baby in 3 weeks with HLHS (same as little Gracie). We pray for you as well as Gracie and Owen since their families have been so supportive of us as we have learned what life will bring having a wonderful heart baby. I would love to add a link from our blog to yours to help raise awareness about your need for a heart. Please leave me a blog comment if that is not ok. Prayers are with you and your family as well as these other wonderful heart families!

    Alli and Kyle Hicken
    soon to be parents of Grant (HLHS)
    grantmeaheart.blogspot.com

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  15. Hi there- I clicked on your blog from Gracie's. She is such an inspiring sweet baby. I really enjoyed reading your story. I too have heart problems, and spent my fair share of childhood at Primary Childrens. Dr. Doty was my surgeon who performed my last surgery.He is so wonderful!! I absolutely love the staff at Primary Childrens. Did you know Barb (the EKG lady)? She was my favorite. Unfortunately the "nasty heart gene" didn't stop with me, and my baby just received a donor heart in November. Organ Donation is so incredible. My daughter Mia is the happiest baby, despite her excrusiating wait. We will definitely be following your journey, and will be praying for you and your donor family.

    Oh, and the gracie girl song is so sweet- I love it!

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  16. Paul,
    I too found your blog through Gracie's. I didn't know you had difficulties with your heart. I am from Utah and so because of that I know who you are. I myself have had a kidney transplant and although my experience was (in my opinion) not as arduous as yours, your comments bring back specific memories to my mind.
    I received many blessings through my struggles with my organ transplant. I can see that you have great faith. You also exude that faith and confidence in the Lord. May Heavenly Father bless you in your struggles and triumphs. Please know you are an inspiration to many, many people and I am glad you have this blog to share these experiences.

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  17. Thank you for the great post. I can't remember if I've told you this but my aunt Susan is good friends with the Gledhill family. They have loved the music you have given them and they really appreciate it. Thank you for all your wonderful and inspiring words. Love you.

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  18. Wow! What a touching story! We will definately keep little Gracie and her family in our prayers!

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  19. I came across your blog, really by accident. I was reading one of the other heart babie that i follow and there you were.
    I would like to wish you luck on your journey to get a new heart.
    Although I only read some of the blog, I must say you are an inspiration to myself ( a heart mom ).
    I always long to find someone older than my son too see what kind of life they live, what they are doing.
    My son also had thenorwood and the glenn, and is waiting for the fontan this year sometime.
    To see that you are ( the same age as me )...lol and have children is a miracle.
    I want to thankyou for sharing your story, I am truly touched.
    I hope that you get a heart soon, and get back to a long life with your beautiful family..

    My son has a web page if you are interested.
    http://blogswithheart.com/lionheart/

    Drea ( heart mom to Hunter )
    ( from Canada )

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  20. Thanks for making a difference in my life. Your music and words have touched my heart.

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  21. I was linked to your blog from Gracies. I have read through your blog and I have been touched here as well! Thank you so much for sharing your story and faith with the world! You are so talented as well! I really enjoy listening to you music!

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  22. I found your blog through gracie's blog which i found through mimi mcdonalds blog which i found through a friend of my sisters blog.. WOW was that confusing or what?
    Anywho.. I just wanted to say that you are inspirational and i read through a few of your posts and i just bawled. Your story is very touching. I will continue to follow your blog, keep you and your beautiful family in my prayers, and hope that soon very soon you will be able to receive a heart that will bless and enrich your life.
    laura mcgee

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  23. I came across your blog on several other peoples bogs and thought I'd come by. What a great post! I am a heart mom, I have a son, Aiden, he is 13 mos old born with Shones Complex/ HLHS. He may need a transplant one day. He has had the fist 2 of the 3 stage surgeries. He wont have the Fontan for another 2-3 years. He is doing extraordinary! It's nice that you share your story with us. I pray that you get a healthy heart! God Bless you and your family!

    Carlla

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  24. I have been so touched by your blog. I found you from Gracie's blog. Your music is absolutely wonderful, where can I buy a cd from? I would love to play this music in my home everyday. Best of wishes to you and your sweet family.

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  25. Paul,

    I am a friend of Carol's. I also live next to Joel (your father-in-law). My sister in AZ called me about a year ago and said that her daughter's school teacher gave her your primary CD for her baptism. She said "you have to get it" I was excited to tell her that your sister is my good friend. Anyway, I just want you to know how much I LOVE this primary CD and play it all the time. It makes me feel so peaceful inside especially on those "hard mom days". I am also following Gracies blog since her mom is a good friend of my sister-in-law and I actually went to HS with Michelle. It's amazing all the connections. I hear of your progress through Carol and will pray for you as I pray for Gracie. This has been a wonderful lesson for me to cherish the moments! Take Care!

    Kristen Clegg

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  26. I'm so glad that I came across your blog...very inspiring! I am a heart mom to a single ventricle child (TA, TGA, DILV, DORV) that had a rough beginning but is now thriving! I pray that your perfect heart arrives soon and look forward to following your journey with you...best wishes!

    Shannon Mason
    Carlie's mom

    p.s. Do you mind if I add your blog to our 'heart friends'?

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  27. Paul, she will be in our prayers. As will you. This blog is inspirational and we wish the best for you in your time of need.

    Best,
    Julia and Jonathan Wade
    (Jacob and Janet Helland's daughter)

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  28. That is so sad to hear. What a painful thing to wait so long and to want something so bad and then have it not turn out the way they planned. I hope she continues to fight and that Gracie will be able to continue her life her on earth.

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  29. You heard about Gracie through a friend and I heard about YOU though Gracie. When I heard "I Know Heavenly Father Loves Me" on her blog I had to instantly download it onto a new Playlist(plus 10 other of your songs) I titled "Sunday". I've sung that song to my babies for years and my mother sang it to me. Your rendition of it is the most beautiful I've heard and I want to thank you for sharing your talent. We'll be listening to your songs each and every Sunday to bring the spirit into our home.

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