I Love My Wife

Today I want to express my love for my family, friends, sweet daughter Eden, and most importantly my wife Lynnette. What I have learned of romantic love and the beauty of marriage I have learned from her. When I speak of hope for a bright future she is the sun rising from the darkness bringing warmth that moves through me.

We have a pure love that no one can take from us. It's a bond, a friendship, that defies this world. Our love is bound by our commitment to each other. I pray daily I may live worthy of her love and give her the respect every woman deserves no matter what comes our way.

"Pure love is its kindness, its selfless quality, its lack of ego and vanity and consuming self-centeredness," according to Jefferey R. Holland. My wife has all of these qualities. He continues, "Charity suffereth long, and is kind, [charity] envieth not, and is not puffed up, seeketh not her own.”

Again, thanks for all your thoughts, prayers, faith, fasting, or how-ever you choose to worship on our behalf. God is my friend and though life is a wild ride and difficult at times it is also incredibly satisfying. I would do it all over again!

Miracles by Walt Whitman from Leaves of Grass (1855)

Why! who makes much of a miracle?
As to me, I know of nothing else but miracles,
Whether I walk the streets of Manhattan,
Or dart my sight over the roofs of houses toward the sky,
Or wade with naked feet along the beach, just in the edge of the water,
Or stand under trees in the woods,
Or talk by day with any one I love--or sleep in the bed at night with any one I love,
Or sit at table at dinner with my mother,
Or look at strangers opposite me riding in the car,
Or watch honey-bees busy around the hive, of a summer forenoon,
Or animals feeding in the fields,
Or birds--or the wonderfulness of insects in the air,
Or the wonderfulness of the sun-down--or of stars shining so quiet and bright,
Or the exquisite, delicate, thin curve of the new moon in spring;
Or whether I go among those I like best, and that like me best--
mechanics, boatmen, farmers,
Or among the savans--or to the soiree--or to the opera,
Or stand a long while looking at the movements of machinery,
Or behold children at their sports,
Or the admirable sight of the perfect old man, or the perfect old woman,
Or the sick in hospitals, or the dead carried to burial,
Or my own eyes and figure in the glass;
These, with the rest, one and all, are to me miracles,
The whole referring--yet each distinct, and in its place.

To me, every hour of the light and dark is a miracle,
Every cubic inch of space is a miracle,
Every square yard of the surface of the earth is spread with the same,
Every foot of the interior swarms with the same;
Every spear of grass--the frames, limbs, organs, of men and women,
and all that concerns them,
All these to me are unspeakably perfect miracles.

To me the sea is a continual miracle;
The fishes that swim--the rocks--the motion of the waves--the ships,
with men in them,
What stranger miracles are there?

by Walt Whitman, Leaves of Grass (1855)

Congenital Heart Disease & Your Cardiac Kids

Please help me spread awareness of congenital heart disease. Here is a short "rough draft" video featuring more than 100 children afflicted with a heart problem that may require medical attention throughout their life. Many are from the Utah area. There are probably a few errors in this video. I did the best I could with the information provided to me. If you know of any errors please e-mail me the correct information so we can make a final version. Send them to paul@stoneangelmusic.com




Link to the CODE to embed on your blog

In addition, we are still in the process of making a video for Gracie's Theme which will tell one families story and fight with CHD. We had a deadline and more people responded than I could imagine. So we made this wonderful video featuring all of the children and a few adults who contributed. I'm sure we'll make future videos featuring other children not appearing in this particular piece.

Adult Congenital Heart Association & Federal Funding

"Congenital Heart Defects are very different from “regular” adult heart problems. Experts recommend that those with complex conditions should receive regular care at programs that specialize in adult congenital heart care. But most complex heart defect survivors are currently cared for at centers with no special training in congenital heart problems," according to ACHA (Adult Congenital Heart Association).

Those of us with CHD are living longer but there is a national shortage of ACHD programs. Many of you have children with CHD. As they grow older they'll need special care to keep them going as long as possible. Ultimately, we are all in God's hands. But until then we should fight to live and enjoy this beautiful world. He wants that for each of us.

For a listing of national ACHD programs, click here.

FEDERAL FUNDING for RESEARCH
Since 2005 ACHA has been advocating for national efforts to address the life-long needs of the congenital heart community. On March 17th, 2009 the Congenital Heart Futures Act was introduced in the Senate by Senator Richard Durbin [IL] and in the House by Representative Zach Space [OH]. This bill defines congenital heart disease as a life-long disorder and calls for federal investment in congenital heart disease research and education and the creation of a national congenital heart disease registry. You can read the full text of the Congenital Heart Futures Act here. This bill is the first-ever legislation introduced to address the life-long needs of congenital heart patients. In order to follow this bill, please go to www.thomas.loc.gov. In the Senate, it is referred to as S. 621; in the House, it is H.R. 1570.

So what’s next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed into law. You can help move this forward by emailing your members of congress and asking them to sign on as a sponsor of this legislation. A sample email text to get you started is here. To find your lawmakers' emails, visit the House of Representatives (www.house.gov) and the Senate (www.senate.gov).

ACHA has worked closely with a legistative team at Patton Boggs to identify key targets in Congress. We need these indiviudals to support the bill. Sen. Hagan (NC), Sen. Bill Nelson (FL), Sen. Whitehouse (RI), Sen. Kohl (WI), Sen Milkulski (MD), Sen. Sanders (VT) and Sen. Schumer (NY). If you live in one of these states and are interested in making sure your legislators support the Congential Heart Futures Act, get involoved with a Local Lobby Day effort with ACHA by emailing info@achaheart.org.

You can also join other congenital heart patients, family members, and health care providers in in-person lobby currently being planned for this summer. More information will be available shortly. Need more information? Visit here

A Little Humor Goes Along Way

Life without humor would be a disaster. Thought I'd share with you a couple of fun video clips related to heart surgery that put a smile on my face.

My State of Mind is to Follow Good Counsel

Photos: Top - With Eden in the Salt Lake City Cemetary briefly without Oxygen, Bottom - My brother Brian with his daughter Ava Skye

Eden asked me the other day if I was “Blumpoe The Grumpo?” in reference to one of her bedtime stories. My roller coaster of emotions is challenging to deal with at home when it’s just the three of us. I do my best to control my frustrations as to try and not impose my own suffering upon others. I count my blessings. But, when my 3 year old notices a problem it breaks my heart.

The truth is I’m tired. It’s been a tough month! Having poor health, waiting for a heart transplant, experiencing a disturbing death in the family with my brother Brian passing, watching my daughter grow up too quickly before my eyes, and the burden my caring wife is undertaking, sobers my soul. In addition, I know folks suffering in their own set of circumstances. I ache to get well and give back to everyone who has selflessly cared for my family and me as well as reach those who need help.

It is in the quiet hours of my personal darkness that I continue to call out to God, our Heavenly Father, to help sustain me. He has never failed me. I have only failed Him because of my own inadequacies and weakness. Amidst my circumstantial frustrations I look to the future with hope! I see the Sun rising from the east bringing new life and a sense of purpose! I’m excited and determined to fight! Give me freedom! Give me life!

Yesterday I was reading Michele Gledhill’s heartfelt blog for her deceased little angel Gracie. I was inspired and uplifted by a quote she put there by my spiritual leader, Thomas S. Monson. He said, "Mortality is a period of testing, a time to prove ourselves worthy to return to the presence of our Heavenly Father. In order to be tested, we must sometimes face challenges and difficulties. At times there appears to be no light at the tunnel's end—no dawn to break the night's darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea 'Is there no balm in Gilead?' (Jeremiah 8:22). We are inclined to view our own personal misfortunes through the distorted prism of pessimism. We feel abandoned, heartbroken, and alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you! He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face.”

In addition, as I continue to contemplate the life of my brother Brian, I have found great joy and satisfaction in the precious opportunity of reading his journal. His soul and his words inspire me and I see life through a new lens. At an early age, while working as a missionary in Spain, he began compiling a journal full of his thoughts. It contains a list of nearly 100 goals and quotes that became personal mottoes. He wrote he didn’t want “a day by day summary of the routine they call life, but a record of the highlights… It could be that I die tomorrow, and these pages (journal) go left blank. Or it could be that I live to be 100 and slip into my eternal rest with a treasure of satisfied ambitions. That isn’t for me to decide. But it is for me to decide how I use the precious time that I have been granted.” He continued, “I’ve always believed that life is not just meant to spend time existing, but to spend it living. Dreams are the very sustenance of life. And as dreams are achieved, life’s purpose is achieved, and life is truly lived.”

I have chosen to follow the counsel of Thomas Monson and my brother Brian. Therein, I am confident any one of us can find peace, strength, and hope for a better tomorrow beginning by living today. In fact, here a few inspiring quotes Brian wrote in his journal that I am also adopting as my personal mottoes.

“Yesterday is but a dream, and tomorrow, is only a vision. But today well lived makes every yesterday a dream of happiness and every tomorrow a vision of hope.” -Unknown

“Happiness is a state of activity.” -Aristotle

“The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart.” –Helen Keller

“Experience is not what happens to a man, it’s what a man does with what happens to him.” –Auldous Huxley

“God left the world unfinished; the pictures unpainted, the songs unsung, and the problems unsolved, that man might know the joys of creation.” –Thomas S. Monson

“Simplify. Simplify.” –Henry David Thoreau

One of Brian's many gifts was making short films. He used to package these up and give them to his wife. Here is one he made for her. The film briefly chronicles their honeymoon to Peru. Together they supplied a "CHOICE" school with educational materials for some children. Later they climbed Mount Kilimanjaro which was one of the many things on Brian's list of goals.

As I climb my own mountain I know there will be many helping me carefully ascend to the top and slowly ascend renewed or born again with life.

Interesting Article

Heart heals itself after transplant
British girl had donor organ implanted onto her own to give hers time to recover

By Maria Cheng
Photo by Barry Batchelor, Associated Press

Associated Press
Published: Monday, July 13, 2009 9:54 p.m. MDT

LONDON — British doctors designed a radical solution to save a girl with major heart problems in 1995: they implanted a donor heart directly onto her own failing heart.

After 10 years with two blood-pumping organs, Hannah Clark's faulty one did what many experts had thought impossible: it healed itself enough so that doctors could remove the donated heart.

But she also had a price to pay: the drugs Clark took to prevent her body from rejecting the donated heart led to malignant cancer that required chemotherapy.

Details of Clark's revolutionary transplant and follow-up care were published online today in the medical journal Lancet.

"This shows that the heart can indeed repair itself if given the opportunity," said Dr. Douglas Zipes, a past president of the American College of Cardiology. Zipes was not linked to Clark's treatment or to the Lancet paper. "The heart apparently has major regenerative powers, and it is now key to find out how they work."

In 1994, when Clark was eight months old, she developed severe heart failure and doctors put her on a waiting list to get a new heart. But Clark's heart difficulties caused problems with her lungs, meaning she also needed a lung transplant.

To avoid doing a risky heart and lung transplant, doctors decided to try something completely different.

Continue Reading...

My Apology & Our Rocking Chairs

Please forgive me for not responding to your considerate comments, kind expressions, and wonderful messages. I have read each one with great appreciation and sincere humility.

The past month has been a bittersweet experience. My brother’s death knocked the wind right out of me. Because of that I’ve chosen to focus more intently on my family and their needs. I love and admire every one of you. Thank you for your friendship.

In lieu of our situation I said to my wife, “Go out and by our rocking chairs. I don’t want to wait to grow old with you. I would love to sit with you on the porch today!”

Lynnette brought home two beautiful chairs. The only problem is that we need a third chair for Eden. My sweet little girl is jealous and wants her own chair. She cracks me up. And so, tomorrow we’ll start looking for a third chair. The store evidently sold us the last two black rocking chairs. I'm sure we can find a pink one for our little diva.

The Highest Peak of Our Lives

Utah weather is wacky. One day it is cool with rain and the next day dry and a hot 95 degrees. Even though I’m outside as much as I can, I feel a peaceful storm coming where I will get a transplant and experience a challenging recovery. I could get a phone call from my doctor at any moment saying, "Paul, we have a heart for you."

I have confidence in my surgeon’s ability to pull it off. I don’t doubt that. But, I fear the recovery. Will I be claustrophobic? I have felt uncomfortable in the past for simple procedures. Will I go crazy or feel extremely restless? I've experienced some of those feelings before in the hospital and this is my greatest fear. I'm not afraid of the surgery and the physical pain as much as the fear of having no control over my mind and body. I’m sure these questions and emotions are natural. Despite these insecurities, I am at peace knowing that the entire team is prepared.

I am also preparing my mind and soul. My daughter, wife, and whole family is on my mind. And now with the sudden death of my dear sweet friend and brother Brian I want to fight that much more. I want to live for these people who I love.

But, my brother Brian inspires me. He climbed the face of mountains and accomplished many great things. As my wife and I climb one of the grandest peaks of our lives I’m ready and comforted because I know he’ll be close by. Others won’t see, feel, or notice him. But, I know he’ll be there along with so many others pulling me up that steep mountain of recovery.

In the meantime, we’ve been spending more time together as a family doing a few fun things. I have some renewed energy, which I attribute to everyone’s prayers and good medicine. In fact, last night we ran for Ice Cream at Baskin' Robbins. My girl Eden always orders the clown, bites off all the decorations, and then offers to trade deserts with my wife. Eden will eat most of Lynnette’s ice cream and then want to swap back leaving her mother an empty cone. We laugh. Eden is a character.

My sweet girl has been asking about Brian. We went to the cemetery and she wanted to see what she terms his body as the “pretend” Brian. We told her that he’s not there and has gone to be with Jesus. Trying to explain death to a toddler is quite difficult. It was helpful that the day before Brian’s death Eden and I walked outside to find a dead robin. I said, “Look, it’s not moving.” She asked why? “Because he’s died. The life inside of him went to be with Jesus leaving his body behind.” I got a shovel and we dug a little hole in a section of our garden. I put the bird in the ground and we covered him with the earth. She said, “I want to see it again.” I said we couldn’t, at least not now, but possibly someday. I didn’t realize the profound impact of all of this dying talk until a couple evenings later. It was after Brian’s funeral, while Lynnette was working, Eden slept next to me. With some sadness and frustration on her face she said, “Dad, I don’t want you to go with Jesus.” I told her I would do my best but if I had to go be with Jesus, Brian and the bird would take good care me. She understood.