Thursday, September 17, 2009

Fitted For A Better World

Today, I walked for 30 minutes; nearly tube free with the exception of my chest tubes draining fluid, and without oxygen, from my room at Primary Children’s Medical Center over the long hallway to the University of Utah Medical Center. And although I have to gown up and wear a mask and gloves to protect myself from infection I have never felt so alive!

(Right Photo - Taking my first walk to a window where I can see Mount Olympus which I plan to climb June 9, 2010 to overlook the beautiful Salt Lake Valley.)

I should be home soon. But, I’ll be back every other day for the usual poking and prodding, biopsies, and rehab typical of a post-transplant life.

Eventually, I’ll have a stabilized drug regimen and be on my way to a most normal life with a new transplanted organ.

And what to do now?

(Photo Left - Chief of Cardiothoracic Surgery, Primary Children’s Medical Center Aditya K. “AK” Kaza, M.D. showing my family my old 5lb heart.)

Over the next couple of weeks I plan to wrap up this blog for a season in order to focus all my time and attention on my wife and little girl. I think I’ll have Eden take me shopping for a bicycle. I’m sure she’ll have a good idea. Maybe she’ll buy me some tap shoes since she is also taking a dance class.

This blog, Living for Eden, will remain online and available as a resource for the folks googling medical information and looking for personal help. Those of you interested in continuing to follow my situation I suggest visiting my music career website and signing up on my mailing list. I will let people know how I am doing until I choose to blog further. Click Here to sign up.

(Photo Right - My kind and wonderful P.I.C.U. nurse removing IVs from my jugular vein.)

The road has been long and difficult. We have experienced the roller coaster of emotions. There have been deep discussions in the darkest hours of evenings concerning the “what if?” How would my family live without a father and husband. Such questions are sobering. Many tears have flowed.

We’ve spent countless hours on our knees seeking help. And the help came through the arms of those who love people and love God. I have learned a great deal about the character of my community. There is more virtue and good in the world than evil. People quietly go about doing good and I’m moved to follow in their footsteps.

(Photo Right - PCMC Director, Adult Congenital Cardiac Program Angela T. Yetman interacting with my family in the surgical waiting room.)

I’ve shared insights and probably preached principles I hope have helped your life. I know, not alone, but by so many others, that you cannot learn joy in this world without experiencing the challenges of life. Through our suffering we gain important virtues; wisdom, compassion, love, charity, hope, faith, sacrifice, and many more.

"We have a Father in Heaven who loves us specifically and gives us things to do and, because he loves us, will cause us, at times, to have our souls stretched and to be fitted for a better world by coping with life in this world,” said Neal A. Maxwell.

This experience has transformed and empowered me. I would not trade this past year for all the wealth or power in the world. But, of course, if I had all that I would have the ability to shout from the rooftops three eternal laws from the New Testament which most people can agree with; Love the Lord thy God with all thy heart, and with all thy soul, and with all thy strength, and with all thy mind; and thy neighbor as thyself.

And finally, there is a powerful statement in the book of Ephesians, which is a standard I hope to live by, which states, “Husbands, love your wives, even as Christ also loved the church, and gave himself for it.”

(Photo Right - Talking on the phone with my friend and former adult congenital cardiologist Michael Adjei-Poku.)

64 comments:

  1. You are a true inspiration. I have felt to give my non-lds friends this link. I am sure they will be touched as I have been.

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  2. i will miss your inspiration and thoughtful sermons. thank you so much for letting strangers experience this last heart wrenching year with you....i have followed for that long and am so happy for you and your adorable family. you all deserve time and what a blessing that you have it!
    good luck, i hope to hear and read great things about you!

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  3. Congratulations on life. Congratulations on your new niece.

    I am so touched by your life and your testimony-here's to LIFE, Paul!! I am so happy your girls continue to get to have a wonderful life with you!!

    Hugs and Prayers
    Amber

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  4. Thank you for touching our lives for good. Enjoy shopping with Eden and loving your wife, in-person, full-time! She is a blessed woman. I love the last scripture from Ephesians that you shared. My husband Mike actually had it framed for himself and one for his Father and married brother for Christmas one year. It has blessed our lives and will continue to bless the lives of many. Thank you for the reminder. All our love,
    The White Family

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  5. To climb Mt. Olympus will be so symbolic gives me chills already :)

    Good luck. Keep well.

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  6. Paul;

    I really hate to read that you plan to close down the Living for Eden blog, but it is completely understandable - it's time to start LIVING for Eden! (AND Lynnette, and Paul!)

    You have come into the Kingdom for such a time as this. Now go start feeling better and get ready to take on that mountain!

    Best wishes from the Funky Heart;

    Steve

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  7. Thank you for sharing your journey with all of us. I will pray your journey from this point forward is filled with joy.

    Blessings
    Lori

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  8. I have so enjoyed reading your blog. You have inspired, taught and lifted. What a joy to be albe to "get on with life" with your wife and daughter. Enjoy every moment-for we never know when they will be our last. Thanks for sharing your personal journey with us (the blog world). May you continue to heal and live a long and healthy life.

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  9. Best wishes and may God bless. Enjoy your daughter and beautiful wife and your new gift of living a more full life.

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  10. Paul,

    What an experience it has been to watch you live the past year with grace and faith! Enjoy your time with your family. I am so sad to know you won't be updating your blog and I hope for a glimpse into your new life on occasion, and to hear those encouraging words that only a CHD survivor can share.

    Take good care~

    Lisa in TN
    (Eli's Mom- LTGA, HRHS)
    carepage: Elischaffer

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  11. Paul,

    You should write a book about your journey. It has been so uplifting to read about your experiences, and I'm sure there are a great many who haven't found this blog who would be touched by your experiences!

    It would take time, of course, but I for one would LOVE to read it!

    - Chas

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  12. I will miss your blog so much. It has been such a source of inspiration and hope for me. Your testimony, strength, and eternal optimism is amazing. Thank you for sharing this experience with all of us!

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  13. Thank you for letting us into your life. We have prayed for you and cheered for you. May the Lord continue to bless you in your recover.

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  14. Any plans to start up a different blog so we can still follow how you and your sweet family are doing?

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  15. Paul, you are amazing and such an inspiration! My little boy could need a heart transplant one day and you give me and other parents like me HOPE. Thank you for sharing this journey with all of us!

    Your color looks great and I am beyond thrilled to hear that things are going well. I can't click over to your blog without crying tears of happiness.

    Sending many blessings and prayers your way!!
    Megan

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  16. We are so happy to see all these wonderful events unfolding in your life. Congratulations on the new heart and a beautiful new niece. We have your family in our thoughts and prayers.

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  17. Paul!

    What an inspiration you are. I have only recently followed your blog, though I have always followed your talent, and would occasionaly hear about your challenges through friends. I have known you for a long time, elementary--did it start that early? And you have always been so positive in the face of all of this. You inspired me then, and you inspire me now. Thank you for being so open, honest, and optimistic about your life and sharing your faith and determination with all around you. Keep it up, and know that you are touching lives everywhere.

    I will miss your blog, but you deserve some time to heal and enjoy your new life, heart and family. You may have a new heart, but it appears both are "heart[s] of gold." Thank you for sharing it with all of us.

    Praying that you continue to heal and enjoy even greater happiness,

    Amy Poulson

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  18. It has been such an honor to have been part of your 'fan club' over the past year as you've traveled down this journey. I am so very happy that this journey and destination have gone to a great place. What am I going to do now that I can't read and be inspired by your words each day? You are amazing and I'm so thrilled that your cute little one and darling wife can have you back at full speed! Keep up the great recovery and best wishes for health, success and many bicycle rides with Eden!

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  19. Great post, as always. You have inspired many and will continue to do so as long as this blog is available. Glad to hear you are continuing to do well!

    Hope to see you soon.

    All our love,
    Tom and Michele

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  20. Amazing photos, I as everyone else am sad your not going to post anymore~ I hope you change your mind as time goes on. You have been such a strength of Faith to so many of us, I understand though- you do need time for your Family~ you have given SO many of us your time for a while now, you need to get onto the path of recovery. (maybe write a book), your so good at the way you express things, I really admire you for all you have done, I admire your wife as well I love how she loves you and supports you. Please know we continue to pray for your strength and we pray for the donor's family~ Thanks so much Paul, your truly and inspiration.

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  21. Paul,

    What an amazing journey you've had, and what an inspiration you've been to all of us! I pray that you will be able to enjoy each moment with your family and to do all of those things you weren't able to do before. Thank you for sharing your story and giving us all a new perspective on life. May God continue to bless you and your beautiful family.

    Heart Hugs,

    Wendy (& Emma, too!) ~ 3 1/2 years old, TOF, 6q deletion
    www.caringbridge.org/visit/emmanicole

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  22. While we are going to miss reading your blog, we are so happy that you will have more energy to do other things! We know that transplant is a long road and we will keep you in our prayers.

    The Hursts, with another Emma with TOF!

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  23. I'm just so happy for you Paul.

    We will miss reading your insights and perspectives as an adult with CHD, and we appreciate you taking us all along with you on your miraculous journey towards a new heart. Thank you for your faith and courage and enjoy that quality time with your sweet family.

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  24. Dr. Kaza was Max's surgeon too! So glad you're doing well. Get home soon and Have a great hike!!!!!!!!!!!!!
    We will continue to be inspired through your music :)
    Thank you.

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  25. Thank you for sharing your journey with all of us. You truely have been abd always will be a inspiration to me and all that have read your blog and followed your story. I look forward to the day to climb Mt. Olympus!

    Tracey

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  26. You will be missed. Maybe you can drop in and post every once in a while and let us know how you're doing. Lynette and Eden are truely lucky to have such a wonderful, spiritual man in their lives. Good Luck with your recovery!!

    Andrea

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  27. You and your family have shown true faith and trust over this past yea, and really, since the day you were born. Thank you for sharing your journey with us, You have shared tender, deep emotions - those that have risen from the 'what ifs' as well as the true joys. I'm so happy for you, for you and Lynette, for you and Lynette and Eden - and for your extended family. My heart overflows with the goodness and love our Father in Heaven has poured out in your behalf. Thank you for sharing that goodness and love with us! My prayers for your continued progress and a long, healthy, active life. Enjoy!!

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  28. Dear Paul, Reading your blog is like reliving my thoughts and feelings after Daxtons Transplant!! I still want to shout from the rooftops God is Great and he loves us ALL!! Thank you for sharing your testimony. I'm so proud that you walked for thirty minutes, that is awesome! Thats longer than I have walked today:) Good luck on your next journey-Home life! We hope to run into you at clinic! Much love, Hilary Cook

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  29. Paul, I just found out. Congratulations!! I have been following your story on the Internet. I am so happy for you and your family. Your perspective on the tragedies and triumphs that your family has been through recently, and the role of the Savior in your lives is inspirational.
    May you continue to be blessed.

    Travis Brobst
    California, San Bernardino Mission, 1990-1992

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  30. Paul,
    I do not know you, but have loved your music for years. I found out about your surgery from another blog. I love to read your thoughts on here, and how you manage to keep faithful. My husband and I are going through our own trial right now. He is 36 and was diagnosed with Ewings Sarcoma about a month ago. We live in Pocatello, ID and have been down to the Huntsman Cancer Hospital for 2 chemo treatments (5 days each) and will be back there again for round 3 on September 30th. I feel like my husband will be okay, even though his prognosis isn't very good. I think our test is how we deal with this trial that we've been given. We have 3 kids, 11, 8 and 4 and it's very hard to leave them when we go to Utah, but somehow we will make it through this.
    Good luck to you and your family, and keep your spirits high.
    Stephanie Hoffman

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  31. i'M SOOO GLAD THAT YOU'RE DOING WELL! I remember when we were there with Melanie and walking across the walkway to the school. We had Dr Kaza too and he was wonderful! I feel like I'm having an out of body experience and I did those things with you!:) Please dont stay away long I always count on your blog posts because they feel much more personal to me! I hope an pray that we will get to meet you someday! If you ever drive through Burley/Rupert area please let me know! Thanks Paul! God Bless you!

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  32. Paul-What a humbling post. I give gratitude to the Lord for answering all of our prayers in your behalf. Its beautiful to witness a miracle in action & to see the priceless work of our Lord & Savior. Its been healing for me to follow your blog for a time. Its strengthened my testimony & given me hope for what lies ahead for me and my family as we continue to fight our medical battles. Thank you for being an inspiration to the world. I am a better person because of your Christlike example. I have deeply been touched by your spirit...it has changed my life.
    Hugs to you!
    Ps. I hope you return back to the blogging world. I think you'll find that you have changed many lives & will continue to with your faith, courage & desire to endure to the end!

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  33. It is wonderful to see how well you are doing Paul. I hope all goes well with your new heart and wish you luck on climbing your mountain next June. If you talk to Dr. Poku again anytime soon tell him "hello" from me, his first adult congenital heart patient! He will always have a special place in my own heart. Good luck to you and your family and thank you for the opportunity allowing so many of us that you may never meet to be inspired by your story.
    Pat Johnson

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  34. Paul :)

    I as well as many I am sure, will truly miss your words of courage and your wisdom that has tought me so much. Each day I feel so uplifted by your tender words and love for the savior and your dear family.

    I hope that you and your family enjoy many great roads together and memories to last a life time you will go and do what ever the lord hath for you and I will find peace in that while you are not blogging.***Please every 3 or 6 months write a post so we all know that "All is well" and hopefully by the start of the new year you will have acomplished many of your desires of your heart you patiently put aside while awaiting a new heart.

    MAY THE LORD BLESS YOU AND YOUR FAMILY ALWAYS WILL BE MY DAILY PRAYER FOR YOU FRIEND, UNTIL WE MEET AGAIN :)

    The Max Family Fresno 7th ward clovis ca

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  35. Thank you for taking us along on your journey. We will all be with you in spirit as you climb that mountain.
    I wish you much happiness and good health.
    God Bless you Paul and your whole family.

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  36. "And what to do now?" I'll tell you what were doing next Paul...Ice Cream Parlor, just like we talked about.

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  37. Paul, We are thrilled you are doing so well. That walk through the hallway is LONG and tiring. Words could never express how grateful we are that you have come through this so well. I, like so many others would love to continue reading your blog to know how you are doing, but I know that is a selfish thing for us all. Your family deserves to have you all to themselves now. I also know, in my humble little heart, that our Father in Heaven has blessed you with your new heart for a reason. We might not know what that reason is right now, but I know one day you will be sharing your testimony with many more people, perhaps as a General Authority or something:) I look forward to that day! Enjoy your family and we will continue to pray for you to have a speedy recovery with no surprises! We hope to hear about your trek up the mountain and we would love to be there with you!
    Thanks for sharing your life and testimony with us. Thanks also to Lynette. I'm sure it's been hard to have her life be an open book, but we are thankful she has been willing to share also. The Deweys

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  38. There couldn't be a better ending to what you taught through sharing your story, faith, hope and love. It is story that I am sure will live on through all our lives as we strive to be a little kinder, more faithful and submissive to God's will as we remember and reflect upon this journey. It is a story that will continue onward through your mission to inspire your families life and all lives through your uplifting music! Thank you for sharing. You might not know how much you did for me and our little family. I know that as Tyler grows and will be faced with similar obstacles according to God's will I will refer him to this site, your courage, peace and faith! All our love! We are so happy for you.

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  39. Your thoughts, tears, prayers, music, faith and inspiration have brought me joy, happiness and strength. I fell as if I know you. I feel as if you know my soul. I listen to your CD's and my heart cries in joy...my soul feels your notes and my life is better. Thank you for sharing your journey. My thoughts and prayers are with you and your family. God Bless...

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  40. Thanks for sharing your story with us. Don't tell my dad I'm telling you this, but he's usually pretty awful at family updates! This was how I kept up to date. I'm glad you're feeling better and I can't wait to see pics from next June when you climb your mountain.

    PS, your old heart weighed FIVE POUNDS?!? Holy cow!!

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  41. You humble me, I sit here with my simple daily trials- nothing compared to yours, berating God for not answering immediately when I call, for not GIVING me what I WANT. Then I read your blog, your tender testimony, and I truly feel ashamed...of my weakness and doubt. Thank you for sharing your faith, for helping those of us who are wondering a bit in darkness and doubt to see some light and realize...it's all about God's will..and His timing. Thank you so much for that! God bless you, keep healing, and live joyously!

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  42. Paul, I would love to be there on top of Mt Olympus in June. It's just one of those things I took for granted because I lived at the highest home in Mt Olympus Cove and never climbed the mountain. It's one of those woulda coulda shoulda things. If your going, can I climb with you. It's your mountain and I will be there for the climb. It's your moment. I just want to see you there.
    Darren

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  43. I love Trudy! She is such a wonderful nurse! It is AMAZING to see the strides you are making! You are an inspiration to so many and we are all still praying for you!
    Heart hugs,
    Emily

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  44. Paul,

    Wow. A 30 minute walk almost tubeless? That is FANTASTIC! I imagine that it was still a pretty painful walk if you still have chest tubes in, but what a sense of freedom! Remember your thoughts about Pinocchio? You are almost to the no strings attached part of life!

    I like many others will miss your entries, but we absolutely respect the plan to get out and live life now! We would love to have a look here and there at what life is like post transplant for you guys, so please keep in touch! All of our love!

    Alli and Kyle Hicken

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  45. Dear Paul,
    I'm not sure if you get a chance to read these, but I just wanted to send you my heart-felt congratulations and many wishes for health and healing. I found your blog just over a year ago after my daughter, Eden, received her new heart. I was struck by your similar situation, your daughters name, and your strength and motivation. Thank you for allowing complete strangers like myself to follow your story and share in the struggles and joy of this last year. If this coming year is anything like Eden's first year post transplant, you have much to look forward too. Enjoy!
    --Kera Murphy

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  46. Dear Paul,
    YAY for your new heart! What good news!!! I have LOVED reading about your life. I'm sad to hear that this blog will be put on hold. But I am so HAPPY for the reason. What a good one it is. Thank you! Thank you for sharing all that you have. Thank you for the inspiration. Thank you for your testimony. I have taken many quotes from your blog and made them a part of my life. You have allowed us to all walk in your shoes, if but for a short time. Because of you, I have hugged my children a little longer, held my husband a little tighter, and my testimony has been strengthened. THANK YOU! Your words will be missed.

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  47. So happy to hear how well you are doing. You have a beautiful future ahead of you. The tears and fear can subside now and you can continue to share your music with the world, enjoy your precious family, and be a tool for our God.

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  48. I will so miss reading your insights, your encouragement, your stories of faith. God is good. I am so happy for you and your family.

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  49. Just wanted to say thanks for being an inspiration to many of the parents and children with congenital heart disease. My son Joseph was born with hypoplastic left heart syndrome and just completed his 3rd fontan surgery in May at Primary's. His little life has been full of great moments and the most heart break. As far as we know he is the only single ventricle patient to every come back from a complete cardiac arrest (age 5 months). This due to the inspiration of the Lord to our Physician who was listening. (gave him 5 times the recovery dose, not normal). Thanks for letting people like us view your life and see that there maybe hope in the future. Thanks so much. http://www.forjosephsheart.blogspot.com

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  50. Keep up the good work! That is amazing you are already walking and getting ready to get out of the hospital! We are so grateful you are doing so well! My kids continue to pray for you all the time. Take care!

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  51. Thank you for you Paul and for sharing your blog. You are a true diciple of Christ and have taught me and countless others many valuable lessons of life and love.
    May you and your family continue to be blessed with health and happiness. I am so thrilled that little Eden and Lynette and you are together to share life and love. Your music radiates to the world the the love you have for The Saviour. My prayers continue for you and your family's bright future! You are loved, Debbie Castleton

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  52. Thank you for sharing the lessons you've learned along the way. I'm so happy that you will have the chance to spend more quality time with your family now. And that you will be able to do things like climb mountains now that you have a healthy heart. What a blessing and a miracle! I'll look forward to reading about your adventures on your family blog. And I signed up to be on your mailing list. Best wishes for continued health and happiness! :)

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  53. Paul,
    I think you should get Josh to climb Mt. Olympus with you. It is something he really wants to do and it would help motivate him to follow through with one of his dreams. We are so humbled and excited that you are doing so well and know that God's hands are truly guiding our lives.
    Take care and we hope to see you next week!
    Hugs!!

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  54. I was so happy for you and your family when I heard that you had finally received the miracle of your new heart!! Your wife and daughter are lucky to be able to continue to have you in there lives! We are all lucky to be able to listen to your inspiring music and new music in the future! One of my favorite songs is I Love to See The Temple from your Primary Songs CD! You prove that miracles really do happen and we can never give up hope!! I wish you and your family the best!:)

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  55. I just found your blog through another I read. As I started reading I found it really hard to stop.

    I am so happy for you!!! I am sure you are looking forward to getting home. I know how those days in the hospital feel. My first child, Kaden, was born with a Diaphragmatic Hernia and was in the NICU for 11 months before we got to go home. Last year we had our beautiful baby girl, Ava, who was born with a Hypoplastic Left Heart and passed away at 3 months (she never made it to our home here on earth). We are now blessed with a healthy 7 month old son. I would never change a thing about my kiddos. I know that God brought them into our lives for a purpose. They are the most amazing miracles I have ever witnessed. Your wife and daughter, I'm sure, feel the same about you.

    Stay strong. You and your family (as well as your brother's family) will be in my prayers.

    Amy
    www.kadenboeckman.blogspot.com

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  56. I am going to miss your inspirational words. You have truly touched my heart. Take care and God bless your family.

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  57. Paul
    I have never commented on your blog before but my wife and I have followed your blog for many months. I want you to know that I have shed manny many tears reading your blog and you have inspired me for good. I want you to know that you rank among my heroes of this day and I want to say thank you. My wife and I pray for you daily among the other wonderful heart heroes we have come to love.

    Best of luck in the future.
    Tanner
    Bela Milne's dad

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  58. So happy for you Paul! This recovery has been amazing, I'm sure you felt so liberated on that walk. You are surely a hero to so many, especially to other heart families :) Thanks for all you've done to bring awareness and hope to those affected by a CHD.

    I'll miss your blog updates but share in your joy of getting on with life and truly living it! Eden and Lynette are very lucky to have such a wonderful father and husband to share this journey with. God bless you all and best of luck in all of your upcoming adventures!!! Take care!

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  59. I am so happy for you and your little family. I wish you the very best.
    I will miss your blog, I check on you daily..
    You are such a strong young man...take care and enjoy Living for Eden...what gifts you have been given.

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  60. Paul,

    I will miss your comments and insights into this world; however, that is a selfish feeling. I know that now is the time to give your all to your wife and to Eden. They need to get to know the healthy you, and that should be a whole new experienc for you all. I look forward to the time that you decide to blog again, but in the mean time I will continue to enjoy your music, as it continues to always bring the Spirit as I listen.

    Thanks, so much.

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  61. Paul,
    My name is Ryan Tripp a.k.a. the Lawnmower Boy. When I was 12 years old in 1997 I rode my lawnmower over 3,000 from Salt Lake City to Washington D.C. to raise money for 4 month old Whitnie Pender who needed a liver transplant. Your story is so miraculous. I am inspired by your courage. It is stories like yours that kept me going when it was tough to ride my lawnmower going 10mph! We rode for 42 days to reach our destination. Everyday we were reminded that Whitnie needed her liver transplant. Just like you received your heart, Whitnie received her liver and is doing great. We raised over $15,000 for Whitnie's transplant and set a Guinness World Record for the longest lawnmower ride.

    Currently, I am fortunate to be working alongside many people to increase the number of organ donor registrants in Utah right now. Perhaps you have heard through the grapevine, nearly every university in the state is gearing up for the largest organ donor registration drive in Utah history. We hope to set another Guinness World Record!

    I know that your story will inspire hundreds of students to understand the importance of organ donation. We hope to register a minimum of 9,000 students. In fact, we held our kick-off event on 09-09-09. I know this is a special date for you as well.

    Once again, congratulations!

    I will keep you updated on our progress throughout the duration of our campaign. I know that our efforts will help many people on the waiting list receive a second chance at life.

    God bless you!

    Ryan Tripp
    trippryantripp@hotmail.com

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  62. Paul you are a true inspiration. Even though someone else had to die, I'm glad you got a heart. I pray for that person's family. You are a miracle and I hope you enjoy life with your new heart. GOD BLESS YOU AND YOUR FAMILY! I hope you won't always leave this as your last blog :)

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  63. Paul,
    I'm so happy to continue to hear how well you are doing with your miracle heart!
    I've had some memories cross my mind since your heart transplant...reminding me of my late husband and the experience of signing papers for my husband to be a donor at the time of his death. He was also on the heart transplant list at that time. Although his heart was not able to help another, other vital organs and tissues were able to be donated; Speaking as a wife of a donor it was an honor to be able to help another to enjoy the quality of life while honoring my husband's life. I can only imagine that your donor family is honored to have their loved one's heart go to such a wonderful man as you Paul.
    With Love, Debbie Castleton

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