(Picture: 1st baby photo after I recovered from heart surgery at 22 hours - 1973)In the past 6 months, since I was listed for a new heart, my wife and I have read other related blogs. It's sobering to see so many ‘cardiac kids’ or children with congenital heart disease. Some of these sweet souls have had transplants. Others are waiting. There have been miracles, struggles, and loss of life.
It’s inspiring to interact with a few of these families. I’m sure several share my medical team at Primary Children’s Medical Center in Salt Lake City, Utah. It’s a wonderful staff of experts who are passionate in their work to save lives. But, more importantly to me, the cardiology and transplant staff has a peaceful, caring spirit about them.
Although I am fully aware of the many adults in my same shoes I would hope they'd agree with me when I admit that living 35 years is a great blessing and an honor. I hope to have many more years. I have a daughter who needs a father. But, my heart is crying out for these ‘cardiac kids’ that they might have a chance to enjoy this beautiful world. Just as badly as I want to live for my daughter I want these sons or daughters to live for their parents.
Several months ago, while I was staying in the hospital with my health declining, I remember being discouraged with life and my situation. And although I struggled mentally, I said a quiet prayer. Moments later I recalled something I heard from a man I greatly admire. He said, “Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward. Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn… Hope has the power to fill our lives with happiness. Its absence—when this desire of our heart is delayed—can make ‘the heart sick.’” (President Dieter F. Uchtdorf, Member of the LDS Church First Presidency) Upon remembering this message I regained my optimism and felt peace again.This Valentine’s weekend as we think of hearts I invite you to join with me in remembering these ‘cardiac kids’ and their families. Say a prayer for them. I’ve added links to many of their blogs over on the right side.
Just as your prayers are for our little ones, our prayers are for you.
ReplyDeleteYou have lived 35 years, and I hope for many more, to inspire those around you, Paul. Before I even knew of your CHD and read some of your uplifting comments, I was inspired and touched by your music. It is wonderful to see someone recognizing their purpose in life and living it to its fullest. As a mother who knows intimately of despair with a cardiac kid who didn't make it, I thank you for doing everything you can to build hope and faith in so many others.
ReplyDeletePaul,
ReplyDeleteI had a really hard day today; a day of worry and wonder at how I will get my little heart baby through the hurdles that seem to spring up left and right before us. Then a friend let me know of your post and even surprised me by telling me you have linked to our blog. THANK YOU. Thank you for remembering us; thank you for making today feel not so lonely; thank you for showing me that my little man, too, can grow up to be something great--inspiring others every step of the way. You are in our prayers.
Mindi and my little miracle McKay
My son Austin just turned 16. He was born with hypo plastic right heart, pulmonary atresia and with a leaky tricuspid valve. We just found your blog and he (me too) was very moved by what he read and saw. He told me with 100% confidence that he knows you will get a heart. He was excited to see that you went on a mission and that you are married and have a child. He worries that will not happen to him. He was so grateful to see your blog and to hear your personal thoughts. Thank you so much. He even said he would like to meet you sometime.
ReplyDeletePCMC is also his hospital. His surgeon is Dr. Hawkins and his Cardiologist was Dr. Orsmond but he retired so he now sees Dr. Puchawski. He loves PCMC too! He had his first surgery in 1992 at 2 days old. His second at 3 1/2 years old, his 3rd in 2007 at age 15 and his 4th, July 17th 2008, his 5th July 24th 2008. They had to do two in a week because the first one didn't work. During the second they replaced his tricuspid valve. Four days later he had a defibullator put in. It has been a rough couple of years. I cannot tell you how hopeful you made us! He like you has a very faithful heart and is very wise for his age.
May God bless you! We appreciate you hope and example and your willingness to share.
Interesting you mention that talk again. I was just listening to it again yesterday. I love it too. We have to have a vision of what we are doing all this for, something to hope for!
ReplyDeletePaul,
ReplyDeleteI found your site through a friend...of a friend...of a friend. Thank you for the words of inspiration, awareness and hope. My prayers are with you, the cardiac kids and your families always.
Warmest regards...
We will certainly pray for them...garrett can pray that their "broken hearts will get fixed" since that is how he prays for you.
ReplyDeleteMy heart is so full right now with love and thankfulness for your family in our lives. Your sharing what inspires you, inspires us all...Thank you Paul for being the spiritual beacon that you are in our lives.
ReplyDeleteWe love you, we pray for you and are always thinking of you!!!
Paul,
ReplyDeleteI was finally able to read your entire blog. How inspiring it is. You make your suffering seem effortless. I know the reality, it's not. You continue to look at your life with optimism. Your blog is well written and informative. I have been enlightened to read about waiting for a heart from an adult's persective. I hope Gracie is lucky enough to make it 35+ years and receive a new chance at a long life like you. You seem to have a lot more to teach all of us and more music to do. I pray that your continued days of waiting will feel as brief as possible. What a darling family you have. You are lucky to have each other.
Michele
Gracie's mom
Paul,
ReplyDeleteMy neighbor/good friend Chrissie Taylor gave me your blog address; she told me about you after I told her that I gave my husband your Hymns cd for Valentine's day! Your music is so inspiring and calming, and I listen to your cd's all the time. Thank you for sharing your gift, despite your challenges. Thank you for your faith and positive attitude. You are truly an inspiration, in many many ways. You are in our prayers.
Jennifer Craw
Paul and sweet family- You are truly an inspiration to all of us. Thanks for doing so many "normal" things. Thanks for being so optimistic in your struggles. We are praying for your perfect heart!!!!!!
ReplyDeleteMy friend Leslie shared your blog with me. I love your music, and I am touched by your courage and your concern for the heart kids. We lost our daughter at 3 1/2 a couple months before she was scheduled to have her Fontan. We wish she could have stayed, but know that was not the plan for her. Just wanted to let you know there is another heart mom out there praying for you to get a heart soon. You are an inspiration to all of us.
ReplyDelete