Text for Jamie Diane Gibson Hartley’s Obituary & Memorial Services
(For the actual obituary with pictures, go to:
http://www.affordablefandc.com/obituaries/jamie-diane-gibson-hartley/)
From an aching, but also truly happy husband who is filled with love from his dearest treasure, I’ll try my best to capture highlights of my divine wife, Jamie Diane Gibson Hartley (August 27, 1977 – July 10, 2014), here in this obituary so that those who read this can have a taste of the sweetness I’ve felt for so long. I’m going to detail not only what she did in life, but also what she stood for.
But, before I get carried away, know that she’s survived by her dear parents, who were as ministering angels to her, Jim and Sheila Gibson, her two older brothers, Troy and Aaron, and she was predeceased by her next older brother, Ben, who passed away with the same disorder as she.
A memorial in her honor will be held on Saturday, July 19, at 10:00 a.m. A viewing of a memory room with her picture and other personal items will be open from 8:30 a.m. to 9:45 a.m. for all to see.
Altruism
Altruism is real. It is not just a term to describe an idea. It is what it claims to be: “the belief in or practice of disinterested and selfless concern for the well-being of others.” It is not rooted in any form of self-interest to any degree. It is a divine attribute of God. Jamie possessed this attribute nearly perfectly, both in life and in death. I saw it firsthand, repeatedly.
One example of her altruism can be seen in her most expansive work of compassion: the United Survivors with Epidermolysis Bullosa (USeb), which she founded in 2008 (www.ebsurvivors.org).
Desiring to help people who struggle with her same incapacitating disorder of Epidermolysis Bullosa (EB), Jamie sought to teach them by example and through summer camps and winter retreats to become more self-reliant. She did her best to get as many of her extended EB family to Park City, Utah, and join her for several days at the National Ability Center.
Jamie arranged activities for them that they could never imagine doing on their own, like rock climbing or other adventurous things such as horseback riding, water sports, and even skiing! These activities were not just meant to be entertaining. She was training them to be independent, explore their abilities, gain greater confidence in themselves, and achieve tasks that would otherwise have been too monumental for them to do in their personal circumstances.
Said one of the participants:
“I know she had an impact on a lot of people, and I'd like to share her impact on me. At a younger age, Jamie made me realize that anything in life is truly possible. Despite battling a severe form of EB, Jamie taught us how to be self reliant individuals realizing our fullest potential. I will never forget that four summers ago I was apprehensive about leaving home for a week to go to a camp and meet other people with EB. I am forever grateful that Jamie reached out to me and encouraged me to go. Jamie will always be a huge inspiration to me. She has inspired me to pursue my dreams, to never let anything go. She inspired and encouraged me to be politically active. I can still hear the sound of her lovely singing voice. Her impact on all of us will forever be remembered, I am sure….I will never forget you Jamie. I hope one day we will meet again.”
Others spoke of her altruism like this:
“The most selfless loving friend of mine and many.”
“Jamie Gibson Hartley was one who suffered daily and yet found ways to live through it and truly gave her life to serving and loving everyone in her path.”
“Being your visiting teacher was for my gain. While I was with you, you taught me about beauty, strength, resilience, faith, and enduring love in its purest form.”
Novelette Munroe: “I admired her leadership, her faith in humanity, her aptitude to forgive, her capacity for love, her compassion to help others.”
Beauty
Beauty is real. Jamie possessed a tremendous amount of beauty in spirit, in mind, in person, and in heart. She reflected it in her angelic voice, singing praises to our Lord and God and Savior Jesus Christ the Crucified. My favorite is “He Shall Be Born.” This song was based on the prophecy of Christ in the Book of Mormon, recorded in Alma 7.
Jamie collected beauty and splashed it on canvas, making over 60 gorgeous, colorful, and optimistic paintings in a matter of just months when she found out that she might lose her arm to cancer and not be able to use it (which ended up happening).
Jamie tried to paint until only weeks before she died. I had to tape a paint brush to her that she could no longer grasp in her better hand, the left hand, although she was right handed from birth. She left an unfinished work, depicting a lush forest of green leaves and trees with a mountain-side in the background that was all going to have bright red poppies dotting the scene.
She wasn’t a painter before she did these works of art. She developed a talent for painting at a rate few of us can match. She seemed to effortlessly learn in an instant how to do it from online tutorials. Then, she had at it, going to Hobby Lobby and gathering the various paints she thought she would need, bringing them home, and impressing her soul on all her pictures. She regularly finished entire canvases in one day.
She did the same thing in her talent for singing when, as a young teenager, her fingers webbed together with scare tissue from the genetic skin disorder she had. As a result, she could no longer play instruments. So, instead of becoming paralyzed with disappointment, she determined to make her voice an instrument and learn to sing. And she did. Her voice is a marvel to so many who hear it, especially considering that her mouth and throat were constantly filled with painful, open sores.
According to longtime friend, Novelette Munroe, “She is everything any woman would aspire to be. Her beauty transcends age or skin deep. I looked up to her in every way. I admired…her strength as an intelligent woman, her sharp wit and stunning humor, her ability to nurture, her quality to inspire something better than you could dream for yourself, her talent for the arts, her adept nature for planning events and fundraisers, and her belief in a higher power that loves us more than our finite minds can comprehend. She believed in me when I couldn't. She hoped for me when I wouldn't. She dreamt for me when I couldn't sleep. Best of all she loved me back just as fiercely and got me in ways very few do. I always wanted a big sister exactly like her, someone I would be proud to be associated with. I am grateful that God blessed me with her and gave us a little over a decade together….My darling big sis. I miss you more than words can express. Thank you for teaching me so much about life: How to carry myself as a woman. How to cook. Thank you for your support and dedication to my health and wellness. Thank you for your unwavering love and constantly encouraging me to be the person you saw me capable of being. Thank you for your compassion and never making me feel stupid or scared. Thank you for all the hugs. For celebrating my successes. What else can I say, I love you!”
Here are samples of her music and paintings to view to see the beauty she sought to give out:
Longtime and dear, dear friend, who helped Jamie produce her music, April Meservy, said, “Many of you know Jamie worked hard to fundraise for those who also suffered with EB - this is a video from 2008 of her singing Nella Fantasia at this event. Just beautiful”:
http://youtu.be/CWpr_4dbxjs
Masa Fukuda, One Voice Children’s Choir director, said, “You can't deny the existence of heaven when you hear this recording”:
http://www.onevoicechildrenschoir.com/wp-content/uploads/2009/11/One-World-Jamie-April.mp3
“Noteworthy and Hazelwood at another benefit she put on for USeb at the Covey Center a year earlier (2007)”:
https://www.youtube.com/watch?v=ymMJKMngzUw
See most of her paintings in her art gallery at
http://www.jamiehartley.net/
Catherine E. Getz said to another of Jamie’s longtime friends: “Angela [Hawkins], I am one of the people that was at camp with Jamie and in fact she was my counselor when I was a camper and then last year I was a co-counselor with her. Even through it was rough for her to be there because she was tired it was amazing that she came despite everything she was going through at the time. I think all of us at camp somehow knew that it was going to be the last time we would get to see her in person so it was a very special week having her there. Thank you for writing this tribute to her, I cried because of her loss and of all the other people I have lost that have suffered from EB. It only brings comfort to me that I know she is not in pain, and has no more bandages, and is singing her voice aloud in the clouds.”
At Jamie’s own camp with USeb, the following dear friend put on this beautiful face, symbolizing the beauty Jamie made possible to be instilled in others:
“Bobbi did Stevie's Makeup at the EB survivors camp, What do you think?”
Jamie Gibson Hartley: “oh my word....no words! that is enchanting.”
Love
Love is real. Love is a rainbow of virtues combined together. It is light, truth, beauty, goodness, and altruism all wrapped up wonderfully together. Jamie loved. She loved so intensely. She possessed such love that when she died, it was as if a supernova burst of caring and compassion rippled through the community of family and friends. It puts me in absolute awe. It’s hard to feel so much sadness when so much inspiring and enthusiastic good came from her life and the responses to her death.
In life, one of the examples of a person she loved was Lorien. Jamie traveled to Cincinnati to be with her during troubled times. Lorien lived in poverty and unsanitary conditions. Jamie sacrificed her own health and well-being to be with her and to love her like family. I’m grateful to Lorien because she was even instrumental in encouraging Jamie to love and marry me. I will always have a tender place in my heart for this exceptional young woman who left the hospital, flew in a plane, and got in an ambulance to attend the happiest day of my life: our wedding.
Our Love Story
We had a Walt Disney fairytale love story that will continue forever. I’m convinced God directed me to this verse, before I ever married her, speaking to me specifically about Jamie and what she will do to others: “And they that be wise shall shine…and…turn many to righteousness as the stars for ever and ever.” (Bible, Old Testament, Daniel 12:3). She’s done this and continues His work, radiating His light and love as the stars forever and ever, just as one of her kindred friends, Sheryl Jepson, said, describing Jamie as “so beautiful....She did radiate the light of Christ. I think everyone fell in love with her with just one meeting! I adore her and am so grateful to have known her. You are one blessed man to be stuck with such a gorgeous girl for eternity!” And another friend verified this witness by these words about Jamie: “You were an angel here on earth. A glimpse of a heavenly being who showed what it meant to live a meaningful and beautiful life.”
I loved Jamie because she was a missionary at heart. She even directly served the Lord on a Church service mission. Not only that, but she went on to serve other people with a variety of skin disorders at Camp Discovery and Camp Wonder—other endeavors I cherished her for.
Terrance Fudge, one of the co-councilors with Jamie at camps said things here that I feel, too, and love about Jamie: “I will never forget the sound of your beautiful voice nor the kindness you showed towards everyone you ever met at Camp Discovery. You were such an inspiration and you will be dearly missed….Jamie performed every year in the talent show at camp! And I would give warning to the new guy counselors that they would cry when she sings! They always said ‘no I won't!’ But by the time she finished, they're wiping their manly tears from their eyes! Man I'm going to miss your voice!”
Speaking of this same voice at other events, another said, “Her voice was amazing and would have the whole audience in awe and filled with emotion.” Her voice was what seriously attracted me to her from the beginning—the voice of a coloratura soprano and witness of Christ in her Christmas songs.
In testimony to the beautiful person Jamie was as she developed more and became active even in politics, two people from the Democratic National Convention in 2012 that I got to attend with her observed, like I observe, and also loved about Jamie:
“What an amazing person you were, certainly destined to be amazing in spirit. So happy to have met you and spent time with you as a delegate. You honored us and the world with your presence.”
“Although we are not close, meeting Jamie and you at the DNC was one of the most important events of that trip and in my life. Jamie's courage and your devotion while I was crying my eyes out was a testament to both of your lives and the beauty of your relationship. I am so sorry about your loss, Taylor, but Jamie lives in all of us, and we are all better people for having had her in our lives.”
Jamie struggled with EB her whole life, which makes her story all the more profound. It is another powerful feature of her that made my love for her gush. As longtime friend Angela Hawkins noticed, I have felt similarly from the beginning of knowing my truest love: “Jamie was the kind of person who never accepted limitations that the world might have given her,” and, as a result she soared.
Jamie’s last public words about life, which I treasure and which reflect the woman I love, were as follows:
“I simply cannot wait for payback, when my chains are unlocked and my abilities are fully unleashed, and i am able to more fully thank those who have helped me along this path. When these hands are made to be like the Savior’s hands and i can finally follow the example of those who have so thoughtfully and painstakingly served me. I have been tutored by some of His best, so i will better know how to serve. I can’t wait!”
—on May 29, 2014.
Idealism
The ideal is real. Jamie exemplified it. She personified it. She epitomized it. See for yourself: Facebook at
https://www.facebook.com/jamershartley,
www.jamiehartley.net, and
www.ebsurvivors.com.
In my book, Jamie was the ideal soul. Here are other witnesses to this fact that are typical of the many common compliments about her:
Angel
“The world has lost a lovely, beautiful angel of a woman. She was and is a wonderful example of the good in this world and I will miss her.”
“You are a truly sweet angel who has touched many lives.”
“If anyone ever asks me if I have ever met an Angel here on Earth? The answer would be YES, Jamie Gibson Hartley. I was blessed to have known her.”
Inspiring
“Jamie you are truly an inspiration to all!!”
“I'm grateful to have known Jamie Gibson Hartley and was so inspired by her unfailing kindness, musical talent, activism, and sense of humor.”
“Inspired me to keep fighting in life, the fight against E.B. Much loved by all.”
“There will always be stars in our night sky that shine bright, but now by far and for always your Star will be of the most bright and beautiful.”
Longtime friend and a sister of Jamie’s, as she calls herself, Elizabeth Dixon, said, “I was friends with Jamie for 19yrs. She inspired me to keep fighting in life. I knew God had sent her down to earth to show people how pure and loving a person can be.”
Grace
“Though not whole in body, Jamie embodied God's grace.”
Positive
“[S]eeing how she lived with her pain and everything, never complaining, made me have so much respect for her.”
“[E]ven through her struggles we found ways to laugh.”
“I used to go the temple each week & Jamie was always there with a smile on her face. We became good friends. I will never forget her kindness.”
“A mentor, a friend, a light brighter than the sun at noon….I am so thankful that I met such an optimistic, life changing person. I hope to see you again some day.”
“She was so funny and so positive about life.”
“Jamie, I'll miss your uplifting Facebook posts and positive outlook on life! I'm sure you're so happy to be free from mortal ailments and I wish you the best in your new heavenly mission!”
Kind
“You've touched so many people with your kindness, bravery, and generosity.”
Example
“What a beautiful example her life is of love, music, generosity, strength, and kindness! I have been blessed by knowing her.”
“We will miss your light and your constant example of strength and positivity.”
Gentle
“I remember how gentle she was encouraging me to sing. She said pick any song and I will sing with you. My first memory with her sure was a great one. I wanted to post about this the day I heard...but, I just couldn't breathe.”
Lovely
“Jamie was lovely to me when I joined the EB community 8 years ago—supportive, informative and generous with her time—I am blessed to have known her. ‘Thank you’ just never seemed enough.”
Bettering Others
“I am a better person for knowing her.”
“I had no idea how lucky I was the day I walked into my new apartment in Provo to find that I got to not only share an apartment with you Jamie, but also a room….Thanks for making my terrifying moment of moving away from home to having roommates I wasn't related to one of the most life changing events. Because I knew you Jamie I have been changed for good.”
Longtime friend and BYU roommate, Tiffany Peterson, said, “You have enriched my life so much, helped me make some of the best decisions in my life, and still continue to help me through your example and courage. I will always use your story and life as an example when my children are struggling with their own challenges: health and other ones.”
Touching
“I just start crying every time I read what someone has posted on here [Facebook]. It shows just how many lives she touched and she touched everyone at camp!”
“Jamie is one of those special individuals placed here on earth to touch people she meets to provide them with a chance to see a different perspective on how precious life is. Thank you Jamie for making my life just a little bit sweeter for having met you.”
Kind friend and helper, Ashley Sundberg, said, “Today I heard the news that heaven gained an amazing woman yesterday. Jamie Gibson Hartley touched my life and I am so lucky I got to know her and have her as a friend, I learned so much from this amazing woman, she is one of a kind….One of the dearest friends I have had to influence me....So grateful for being able to know you Jamie. Love you!”
Enduring
“She has been so valiant and beaten the odds so many times that it's hard to believe she's still not here.”
“Your spirit was irrepressible.”
“Your willingness to push forward and accomplish so much in spite of what must have been unrelenting and chronic pain was epic. I and the world thanks you for the many gifts you gave to us.”
“Those of you that helped with the Camp Discovery golf tournament all those years ago will remember her as the entertainer who sang so beautifully. You may not know that she didn't eat before she sang as her food may have caused her throat to blister and made it harder for her to sing. You may not have known that she sometimes had a hard time opening her mouth enough to shape the sounds she wanted. You probably didn't know that she painted beautiful pictures using two hands to hold the paint brush because her fingers were webbed with scar tissue and covered in bandages. She was one of the most faithful, giving, strong, beautiful people I have ever known, and now she is free of the body that has limited her for so, so long.”
“She didn't let her problems stop her from living her life, instead she used her life to tackle a problem, and to help others.”
Impactful
“We all will remember the joy and love she brought to all our lives. Very few people have impacted so many.”
“You're one of those people who makes a difference, no matter what you're doing.”
“You have made such an impact on everyone you have met. You had such passion about the things you loved. Your smile was amazing, and your heart was filled with love.”
“The world is at a loss without you but please know how much you are still loved! You are a true inspiration and wonderful person.”
Aïda from Belgium: “I remember the day I meet you. Jamie Gibson Hartley made a huge impression on my life. She changed the way I look at people and how I treat them. just because you are covered in bandages does not mean that is who you are.
“You have been 2 weeks in my home in Belgium. Those 2 weeks I let you feel how Belgium families go true the day, what we eat and do but those 2 weeks are gifted in my memory forever. You give us so much love and peaceful time with your voice and let the village people remember you forever.
“The most thought you gave me, was your courage in live. When I feel down I think of your spirit and that give me the strength to go on and gave me the courage to come up for myself.
“Even in Sophie’s school, you give a message to the kids that they would not be sad of having a little spot on their skin in pubertal times. And I‘m sure some of them will remember you as the strong women with the heavenly voice.
“Thanks for being a part of my life. Aïda from Belgium.”
Aïda’s daughter, Sophie, dear precious Sophie, who suffered her own kind of skin disorder that Jamie helped to raise money for so she could come to America for treatment, wrote me privately and said, “I remember one day she talked to me with Bethany [another very close friend of Jamie’s who went with Jamie on this trip to help her with her bandages] about Jesus. At that time I was not a believer yet. But 3 years ago I did receive Jesus as my Lord and Savior….Jesus says that one day the death will raise, and the other children of God who are still on this earth will meet Him in the clouds. God gave His only begotten Son to perish for us, so that all who believe unto Him will have eternal life. He says that if you confess with your mouth Jesus as Lord, and believe in your heart that God raised Him from the dead, you will be saved….And I know now, that for God nothing is impossible. Keep your faith in Him, the true Jesus. Make sure you are newborn child of God, follow God where He wants you to go, believing in the right truth, and I tell you, one day we will stand before the Lord. There will be no mourning. There will be no weeping. There will be no war. There will be laughter, joy, smiling in the presence of the Lord.”
After I asked her if I could share these powerful and tender words she gave me, she said to me, “Of course, but make sure you mention the necessity of being a newborn Christian.” I echo her words, not just to be Christian by name, but to be a newborn Christian in heart, might, mind, strength, and soul. Jamie was.
Leader
“The Lord had a plan when he sent you to earth with EB. He knew you would lead his people, change the world for others and offer a hope that no one else could.”
Talented
“You were one of the most beautiful and talented women I had ever met.”
True Friend
“I will forever remember her as upbeat, always smiling, and a friend to everyone she met! Her friendship meant more than she will ever know, and I feel like everyone who knew her was made a better person because of her.”
“I loved her, and feel grateful for the times we shared, which were moments of communication that made me feel understood and very lucky!”
“I have tried three times today to express my feelings, and I can't. Jamie Gibson Hartley was the most loving, amazing person to everyone she knew. I remember growing up and thinking of her and Ben as the cool older kids that had tons of friends. I'm glad to see today that she is still very much one of the cool older kids with tons of friends. She was always a reminder to me that being sick is not the end.”
Fairly recent friend, Emily Argyle, said, “I love you. You are one of the most beautiful people I've ever known….Thank you for your friendship! For caring for me in my trials when you had so many of your own. Your example of love, faith, and perseverance will continue to inspire me.”
Resume
Jamie Hartley
801-319-0160
jamiediane@gmail.com
_______________________________________________________________________
PROFESSIONAL
•
Co-founder and President of United Survivors with Epidermolysis Bullosa (USeb)
(
www.ebsurvivors.org) (2008-Present)
•
Screen Writer for BYU Philosophy Dept. (2004)
•
Student Educational Aid for Pleasant Grove High School (2008-2009)
•
Substitute Teacher for Alpine School District (2008)
•
Painter with Utah Art Access (2012)
•
Singer/Songwriter (2002-Present)
EDUCATION
Brigham Young University: Bachelors of Arts Degree (2005)
Major: American Studies & Honors Program
Minor: Logic
Ricks College: Associates of Arts and Science Degree with an emphasis in Music (1999)
Honors program
EXPERIENCE
•
Utah Democratic Party: National Delegate, State Delegate, and Precinct Chair (2012-Present)
•
Camp Discovery/Camp Knutson: Camp Counselor. Crosslake Minnesota (2001-Present)
•
Camp Wonder: Camp Counselor (2002-2006)
•
EBMRF: Spokesperson and Fundraiser of $10,000+ (1997-Present)
•
Wasatch Adaptive Sports: Fundraising Representative (2005)
•
Public Educational and Inspirational Speaker: Nationwide to medical, church, and other groups
MUSIC
•
Produced Vocal Solo Album Nella Fantasia (2010) and Good Night Christmas (2002)
•
Solo performances in Belgium (2005) and thirteen different states (1998-Present)
•
Guest Soloist with One Voice Children’s Choir, Utah Heritage Singers, Logan Interfaith Chorus and Orchestra and Evergreen Singers (1998-2010)
•
BYU Women’s Chorus (2001-2004)
SERVICE
Callings: Young Women Advisor—Laurels, Relief Society Secretary and Teacher, Visiting Teaching Coordinator, Temple Worker, Sunday School Teacher, Family History Consultant (1998-Present)
Mission: Provo, Utah. Family History (1999-2000).
Pre-marriage Letter from Jamie to my Parents
Dear Jim and Linda,
I'm writing in answer to some concerns of yours….As for what to expect…for my care and…life expectancy, I don't have good news for you.
Chances are, everyday, for the rest of my life, my skin will degenerate….Chances are, that some sort of infection will reach my bloodstream eventually.…
Did Taylor tell you that on top of EB [or Epidermolysis Bullosa], I have dyslexia, chronic anemia, chronic circulatory stress that has caused an enlarged heart, chronic fatigue, arthritis, scoliosis, atopic dermatitis, psoriasis and alopecia? Chances are, I will be a bald, toothless, blind, smelly hunchback in a wheelchair in no time at all if I don't die first….
Chances are, I should be dead by now and should not be here to tell you how wonderful my life will be with Taylor, but because of him, all my worries are about to melt away into a sweet marital bliss. My point is, I cannot tell you all the ways in which EB will destroy a life,…[b]ut as far as what to expect looking toward our future in a gospel sense, I have very good news.
My life is a miracle. I depend on the Lord to grant seemingly impossible things every day….
Marriage will undoubtedly add responsibilities and challenges….I hope you will not doubt the Lord’s ability and desire to bless us according to not only our needs, but our desires….I anticipate more physical healing than ever before. Love is physically healing. Having someone interested in my comfort and wellbeing at my side is beyond my best expectations for me in this life. Having someone who actually seems to mutually need me and my love and support is something I have not experienced and it is one of life’s choicest blessings and responsibilities—a responsibility which I do not take lightly because of my deep love for Taylor.
I am the first to point out the challenges that can be expected in our future. From the beginning I was a skeptic and did not wish to pursue a relationship with him…because I did not believe it was fair of me to share or inflict my pain on someone else. When Taylor marries me,…I will worry constantly about how to satisfy his needs, but I know that where I fall short, the Lord will help me….
It would mean a lot to us if we could have your trust and confidence that we have received answers and revelations concerning the most important decision of this lifetime. I know you want [these answers] too….
Let me add to this my testimony of our Savior and His Atonement….[T]he prosperity of this marriage looks pretty impossible….Yet I know we can’t [make this work] without the Lord and [I know] His promise that we will not be denied any of the blessings if we are obedient and endure to the end. With Taylor, I can do so much more than just endure. Life will not be drudgery. We will be happy, for the most part. We are looking at the not-so-happy parts with eyes wide open, knowing that it is all part of the journey. We both see each challenge as an adventure, a problem to be solved, a puzzle to be completed….
This life is so short. Soon we will all be in the next room together looking through the veil at our family and posterity and realize that most of our worries here were futile. Then, Taylor and I can turn and face the eternity we can enjoy, with no bounds, no EB, no doubts of our abilities and the love we have for each other.
Thank you for the gift of your son. I accept. I will cherish him. I want the best for him. He seems to think that is me. I’d like to agree. So I will do my best to be a helpmeet for him. He is my dearest friend, my love and soon, my eternal life.
With much love and respect and all my appreciation,
Jamie
P.S. please don’t take this the wrong way
Testimony
Jamie and I give our united voice of what we know. We wish to offer this to you as a gift. Please accept it as a sincere offering for you to think about and decide if it’s true. I’ll quote from sources, many of which she and I shared frequently, especially during her last days here among us:
Jesus Christ, our Lord, is real and He lives (Bible, New Testament, 2 Corinthians 13:4). His Gospel is on earth. His teachings are true and recorded accurately enough in the various scriptures and taught through modern-day representatives, His servants the prophets (Bible, Old Testament, Amos 3:7).
The atoning Jesus Christ’s virtues and teachings are found at least anonymously in every culture, faith, and religion in varying degrees—and this is wonderful! (“All churches and all creeds contain some good which lead toward the kingdom of our Father.” Teachings of Presidents of the Church: David O. McKay, p. 195).
Each expression of goodness and truth, in whatever form it is and from whatever source it comes, is a step closer to Christ (“[The Gospel] embraces all truth in heaven and on earth....Wherever these principles are found among all the creations of God, the gospel of Jesus Christ, and His order and Priesthood, embrace them.” Teachings of Presidents of the Church: Brigham Young, p.353).
No matter where we are, Jesus Christ, will advocate on our behalf before the Father (“[I]f any man sin, we have an advocate with the Father, Jesus Christ the righteous.” Bible, New Testament, 1 John 2:1).
Christ works for all of our salvation: “Jesus will never cease his work until all are brought up to the enjoyment of a kingdom in the mansions of his Father.” (Teachings of Presidents of the Church: Brigham Young, p.48).
We testify in humility, with no disrespect to family or friends who have sincere beliefs that differ, that Christ has brought His organization that He eagerly wants all of us to be a part of in order to most benefit one another. He is a one-Christ-fits-all and so is His Church, and His salvation, and His heaven. Even though, for now, He places His Church in the hands of fallible mortals, as we all are, He does His perfect work through imperfect instruments. He will, through His grace, His Gospel, and His Church, exalt each and every one of us—all of us who wishes to be a child of Christ (“[W]hen his soul has been made an offering for sin he shall see his seed….And who shall be his seed? Behold I say unto you, that whosoever has heard the words of the prophets, yea,…all those who have hearkened unto their words, and believed that the Lord would redeem his people, and have looked forward to that day for a remission of their sins, I say unto you, that these are his seed.” Book of Mormon, 2 Nephi 15:10-11). And if you prefer less of His grace, His Gospel, or His Church, then He will grant you according to your wishes and make you as happy as you wish to be, living in a saved condition in heaven for all eternity according to what fits you best. That’s the one-size fits all because it’s made of stretchy material, figuratively speaking. That’s the doctrine of Christ that we both know and understand and wish to leave with all of you. In His name, amen.
Selections of Jamie Hartley’s Memorial
IN LOVING MEMORY OF
JAMIE DIANE GIBSON HARTLEY
JULY 19, 2014
Jamie Diane Gibson Hartley
August 27, 1977 – July 10, 2014
HONORARY PALLBEARERS
(Brothers and Siblings-in-law)
Troy Gibson
Aaron Gibson
Ben Gibson
Jason Hartley
Andrea Hartley Bailey
Brent Hartley
Tom Hartley
Angela Hartley Davis
Family Prayer: James Gibson (
Father)
Presiding: Bishop Harvey North
Chorister: Lois Stout
Organist: Derek Maude
Opening Hymn:
How Great the Wisdom and the Love
Young Women Ensemble
Conducted by Linley Duncan
Accompanist – Chris Ballif
Invocation: Jim Hartley (
Father-in-law)
Life Sketch
(
Longtime Friends)
Kim Dixon
Trishelle Duncan
Chelsea Stevens
Tiffany Peterson
April Meservy
Hymn (Congregation):
Come Ye Disconsolate
No. 115
Reflections:
Written by Taylor (
Husband), read by:
Derek Bailey (
Brother-in-law)
Andrea Hartley Bailey (
Sister-in-law)
Speaker: Sheila Gibson (
Mother)
Musical Number: An Angel Among Us
Written and performed by Shannon Heslop
Accompanist – Suzanne Shippen
Eulogy: James Gibson (
Father)
Closing Remarks: Bishop Harvey North
Closing Hymn:
God Be With You Till We Meet Again
No. 152
Benediction: Linda Hartley (
Mother-in-law)
- A special thanks to the Hillside Ward –
Selected Program Contents
Life Sketches
Kim Dixon
· Jamie was born at the U.S. Navy Base at Yokosuka, Japan on August 27, 1977.
· She was the youngest of four and the only daughter. Her brothers are Troy, Aaron and Benjamin. Her parents are James Morse Gibson and Sheila Diane Shelton Gibson. Her husband is Taylor Charles Hartley.
· When Jamie was 18 months old, she moved with her family to the west desert of Utah where she spent her youth in the military community of Dugway Proving Ground.
· Jamie has always loved music. She started playing percussion in the 7th grade. She played drums in the school band and even had her own drum set at home. EB, however, was causing difficulties. When Jamie’s hands became too crippled to hold drumsticks, she switched to the xylophone. When that became impossible she switched yet again, this time to choir, stating that EB could not cripple her voice. She also began private voice lessons.
· Religion was also a major part of her young life. She attended and then graduated from LDS Seminary. She was active in the Young Women’s program and earned what is equivalent to today’s Young Womanhood Recognition award.
· In 1995 Jamie’s brother, Ben, died from the effects of E.B.
· In 1995 Jamie graduated from Dugway High School. She won three scholarships and was soon off to Ricks College in Rexburg, Idaho. At Ricks she once more immersed herself in music. Although EB continued to restrict her from playing musical instruments, she succeeded and exceeded in voice. She became part of the Women’s Chorus, and loved it.
· In 1998 Jamie graduated from Ricks, receiving an Associate’s Degree in Arts and Sciences and distinguished herself in the honors program there. Thereafter she rejoined her parents who had then moved to Pleasant Grove, Utah. Her next venture was a very special one. She was a temple worker in the Mt. Timpanogos Utah Temple.
· In 1999 Jamie was called to a year-long mission for the Church of Jesus Christ of Latter-day Saints as a family history missionary in Provo, Utah.
· In 2000, Jamie was accepted to Brigham Young University. While working towards a degree, she continued to be active in music. She sang with the Women’s Choir from 2001 to 2004. In 2005 she graduated with a Bachelor’s degree in American Studies, and had worked on a minor in logic. Once more Jamie earned recognition in BYU’s honors program.
· She worked hard to develop her solo voice because her dream was [quote] “to share my love and conviction through music with as many people as I can.” [unquote].
· Although Jamie was able to accomplish many things in her life, she realized that there are many people who suffer from Recessive Dystrophic Epidermolysis Bullosa (EB for short) who have not been as fortunate.
· EB is a very debilitating disease that causes the skin to blister and break open into weeping wounds. These sores make sufferers very susceptible to infection. The damaged skin results in severe scarring that cripples the feet and hands. EB affects all mucous membranes, which include the lining of the esophagus and the cornea of the eye. That means that the mouth, throat, and eyes also blister and scar.
· EB is very painful, devastating & a killer. Most victims do not survive childhood. Those who do usually face cancer in their later years as we are witnessing at this time with our beloved Jamie.
· As previously mentioned, Jamie’s brother, Ben, lost his battle with EB at age 19. Jamie would have turned 37 next month.
· Jamie fought cancer for 13 years and probably died of it invading her lungs, together with severe infections that would not go away, even with IV antibiotics.
· About the same time that Jamie’s cancer was diagnosed, she met Taylor. In 2001 Jamie was living at Campus Plaza apartment complex at BYU. And then Taylor Hartley moved there also.
· Said Taylor in his personal journal directly after writing about meeting Jamie for the first time, “I no longer feel the urge to find my future wife.” Little did he know he had just met her.
· Jamie described their first date to a friend in an email as, “A new guy in my ward, who I really have enjoyed talking to and who has proven to be the supreme optimist of the Campus Plaza community asked me for a date. I was afraid this might come up since it usually does when I find someone I like talking to; but talking was where I hoped it would stop. He was too serious for me. I’m not comfortable on a date that is serious. After he asked me out I thought, ‘shoot, there goes a good friend.…[but], it’s just a date,’ I kept telling myself but it didn’t comfort me after remembering the record I have kept, of attracting guys who like to get engaged on the first date, guys who like the view of the temple from Rock Canyon. This guy seemed like that type….It wasn’t the date that scared me. It was that look. I don’t mind the look that says, ‘this could be fun,” but his was the one that said, “I have plans for you.’ …When he picked me up he knelt down and kissed my hand!!! AAA!!!…and addressed me as Her Majesty….He was acting as my prince. The syrupy-sweet awkward gesture characterized the theme for the night that I like to call: A ROYAL Discomfort….OH MY TRAUMA!! I think I shall ask for a play-by-play itinerary for every date I am asked for before I consent from now on!”
· Their courtship was long and drawn out from Taylor’s perspective (he wanted to marry her years before the thought occurred to her), but they finally had their first kiss on Pi Day, March 14, or 3.14, and got married about nine months later on December 9, 2005 at the Mt. Timpanogos Temple in American Fork, UT.
· They first lived in the San Diego, California area for several months. That’s where Taylor had gone to law school. They moved back to Utah and soon founded The United Survivors with Epidermolysis Bullosa, or USeb, to help people with EB become more self-reliant.
· From 1997 and on, Jamie was a spokesperson and fundraiser for the EB Medical Research Foundation (EBMRF), which is based in California. They are searching for a genetic cure to EB. Jamie raised over $10,000 for their cause.
· From 1998 to 2010, she was a guest soloist with One Voice Children’s Choir, Utah Heritage Singers, Logan Interfaith Chorus and Orchestra, and the Evergreen Singers.
· From 1998 and on, Jamie did solo performances in thirteen different states and one in Belgium in 2005.
· From 2001 until last year, Jamie was a camp counselor at Camp Discovery in Minnesota where she helped youth with a variety of skin disorders, not just EB.
· From 2002 to 2006, she was a camp counselor at Camp Wonder in California during the summers.
· Her first CD, Ethereal Christmas, was followed in 2002 with the expanded, Good Night Christmas. Also in 2002 Jamie produced the vocal solo album Nella Fantasia.
· In 2005, Jamie became a fundraising representative for Wasatch Adaptive Sports.
· In 2012, Jamie became the Precinct Chair, State Delegate, and National Delegate in the Democratic Party.
· For many, many years, Jamie has been a public educational and inspirational speaker nationwide to medical, church, and various other groups.
· From 1998 until a few weeks ago, Jamie held various church positions, including Relief Society Secretary and Teacher, Visiting Teaching Coordinator, Temple Worker, Sunday School Teacher, Family History Consultant, and then ended with her favorite one, a Young Women’s Laurel Advisor, teaching sixteen and seventeen year old young women about the Gospel of Jesus Christ on a regular basis.
· She passed away on July 10, 2014 at 5:53 p.m. For about eighteen hours before, Jamie had not been responsive. And then, at the end, a sweet and precious moment came. Taylor and Jamie’s parents huddled around her, saying their goodbyes, and expressing their love.
· Jamie seemed to understand just before she slipped away. A peaceful smile came across her lips at exactly that last moment. No more bandages. No more pain. She was finally free from the pain and discomfort she had suffered for so long. Hopefully she was meeting loved ones beyond the veil. One thing we know for sure: Jamie graduated from Ricks with honors, from BYU with honors, finally she graduated from mortality with honors.
Trishelle Duncan
I met Jamie the day after my family moved to Dugway, Utah. It was the summer of our 7th grade year and we were both turning twelve years old. Our friendship was automatic, which I suspect was similar to many of you since her ability to make friends has always been one of her super powers.
As we went through junior high, we had many adventures together. We even started a band. She was the drummer. Our friend, Lizz was on the guitar, another friend, Jenn, was lead vocals and I was the back-up singer. We had glorious plans for world wide fame but we never really got anywhere. We broke up even before we could land a gig.
For years, we shared the same crushes which wasn’t hard to do in a small town. But even then, she was a loyal friend. I got a glimpse of that when I turned fourteen. I was finally allowed to wear makeup and all I wanted was blush. For my birthday, she gave me a little green compact with the pinkest blush I had ever seen. I loved it and loved her for being so aware.
While there are many memories from school, my favorites are from our Senior year. That’s when things started to pick up for all us.
That summer, the youth in our congregation participated in a pioneer trek. This meant, we dressed in long sleeved, pioneer garb and headed out, on foot, away from civilization, in an effort to gain an appreciation for the sacrifices made by our Mormon pioneer ancestors.
We all knew it would be difficult for both of Jamie and Ben to participate, but I have precious images in my mind of them riding along side of us, the door of their van all the way open as they watched and cheered us on. Sometimes, Jamie, in her cute pioneer garb, would walk along side us too. Of course, she never complained about how hard it was. It gave the rest of us much less reason to complain about the blisters, the sore muscles, the sunburns on our skin.
She taught me of the power of surrounding yourself with others who were doing good. There is a protection that comes from it. I learned this lesson late one night when our friend, Kristina, my brother Joe, Jamie and I were driving through Johnson’s Pass on the way home from Tooele. It was late and the sky was completely clear, which meant the stars were bright that night. As we approached the top of the pass, we decided to stop the car and get out to do some stargazing. Perfectly innocent, we were doing nothing wrong and we were in a relatively safe environment. However, the moment after Kristina parked and turned off the car, we were individually struck by very clear, very strong instructions NOT to open the door and to GET AWAY from where we had just stopped. It was instant, almost verbal and very frightening. I remember a few seconds passing before anyone moved because we all were so scared. Finally, my brother suggested what we were thinking and we high-tailed it out of there.
Then there was our banner day. It was my very favorite memory of our senior year together. Jamie, Kristina and I were competing in a trio for the vocal state championships. It also happened to be the day another school’s prom was held at the Capitol building, which we had all been invited to. We sang in the morning and spent the rest of the day in town, getting gussied up for our big dates.
It ended up being a night that lived in infamy.
Our dates came 45 minutes early. We separated for dinner but met up again when Kristina and I were in the bathroom of the capitol dealing with a mild case of food poisoning. Jamie walked in. By the look on her face, we could tell she was irritated and completely grossed out. She then told us her date had actually touched her food…with his finger. If memory serves, he “wanted to make sure it was dead”. The experience left her somewhere between hungry and losing her appetite which was disappointing since she really wanted to eat that sushi.
The evening went on. Given that we were dressed up like princesses, we recovered from our hiccups and spent the rest of the dance having a great time together. But when our dates took us to the home where we were staying we couldn’t get them out of the house. We took turns dropping hints. Rookie mistake, really. Finally, about an hour later, the boys got the idea and prepared to leave, but not without 2/3 of them going down in two separate, disastrous failed attempts to get goodnight kisses. We spent the rest of the night laughing until we all fell asleep.
The most sacred memory I received from spending our senior year together was in Seminary class. Up to this point, Jamie helped me to decide who I wanted to be, and what I believed in. Senior year it all began to come together. One thing that became so very clear to me through Jamie’s example was that our Heavenly Father and our Savior Jesus Christ know us individually.
On that day, our sweet Sister Shupe showed a video depicting an excerpt of Book of Mormon scripture. It was of when Jesus Christ came to the Nephites after His crucifixion. We had spoken of this particular passage before so I knew she loved it. She cherished the phrase ‘one by one’…meaning, He took them, one by one, and gave them the blessings they each needed. In the video, there was an old woman, bent and seemingly broken. Among her obvious frailties, her hands were disfigured and non-functional. Christ took her hand and cradled it in His for a moment and then revealed her hands being whole again. When I saw that, I thought of Jamie and knew it would be her turn someday.
When Jamie past last Thursday, that was one of the first things I remembered. She helped me to know, that He does, indeed, know each one of us. She helped me to know, back then, when I was still trying to figure everything out, that He would give her, me and everyone, according to our needs. I knew, from that impressionable moment, that one day, our Savior, would take those beautiful hands of hers, and make them whole. She taught me to look forward to that and not be afraid.
Chelsea Stevens
Jamie Diane Gibson- Ricks College 1995-1999
Life Sketch Saturday July 19, 2014
I am honored to be asked to share some of my memories of Jamie as I know she had a great impact on everyone she met and I would guess that everyone would consider her a friend…
Jamie and I were roommates during Jamie’s first 2 years at Ricks College in Rexburg Idaho and then again after my LDS mission when we lived near the UVSC campus in Orem Utah while she was serving as an LDS missionary. At Ricks we lived in Harmony House Apartment 204. Even though it was 19 years ago and I don’t have a lot of detailed memories, I do remember that those were 2 of my most treasured years. No doubt God had a hand in lining up who ended up in our “home away from home”. We had a very strong sense of unity as roommates, especially Alysia, Jamie and me. None of us brought a TV, back then no one really had cell phones yet, and we had to go on campus to the computer lab to use a computer so we were literally an unplugged group of people. I feel like our sense of family, even sisterhood was strengthened because our human connection was so strong. I genuinely mean it when I say those were literally 2 of the best years of my life and so much of it was because we loved and cared for each other like family! With our unique situation with Jamie, we were taught quickly that although she had some outward differences, we really are much the same inside.
One of our other roommates, Alysia remembers how nervous Sheila was to leave Jamie there by herself, as a mother should be. They lived in Dugway Utah at the time which is a good 4 1/2 – 5 hour drive. I remember her parents thanking us for being such good friends to Jamie over and over and I remember feeling like I was the one getting all the benefits.
SINGING:
My first memory was somewhere in passing between auditions, her for Women’s chorus, and me for Showtime Company. Within a couple of days our other roommates were throwing a party for both of us as we made it into the group of our dreams. I remember being amazed at her courage to perform. She told us that she once was a drummer and that when the webbing on her hands got too bad to hold the sticks, she decided she would sing instead since music was a love of hers.
HOME HEALTH AID:
Her first year of college she didn’t have a home health aid so we got to assist her on a regular basis in tying off her bandages once she was all wrapped. It never occurred to me that wrapping her entire body with bandages would be challenging until several months in she asked me to help her wrap a couple of her bandages. I wondered how in the world she had ever done it herself day in and day out and still made it to classes on time. I don’t think I realized the potential pain she was in until I saw some of the sores on her back as I dressed them. That was humbling.
INDEPENDENT:
Jamie was very independent. She not only showered herself, dressed her own bandages, carried her books around campus, but she made her own meals. The one thing I remember her asking for help with was opening cans. I was honestly glad she couldn’t do it so I could help her!
BENS PASSING:
Within a couple months of our journey together her brother Ben passed away from the effects of EB. I was curious about the average life span of an EB survivor and when she told me I felt sad. However, she told me that the difference between herself and Ben was that she had a positive outlook on life. She was determined to live a full life as normal as possible. I think she proved that. During that same school year my sister passed away as well which brought Jamie and I closer.
DRESSING UP:
I’m not sure how many young single adults do this but we played dress up like 3 year old little girls. We would dress up in some random outfit, paint our faces, pose, take pictures and laugh hysterically at ourselves. I found photos of us dressed like animals with construction paper ears, pageant queens with toilet paper sashes, charlie’s angels, and whatever we could find. I found a picture of me and Jamie wearing the same pair of pants, at the same time…each of us filling a leg:) My husband James even remembers “masking” with our entire apartment of girls, including Jamie.
GOING OUT:
We loved going dancing. We would help her get dolled up to go out dancing and on the dance floor she kept up with the rest of us! She was always witty, clever, and as nutty as it gets. Using nonsensical nicknames like “Banj” for my boyfriend, James, who is now my husband. One thing that I admired about her was how quick she was to make a silly joke about her condition and especially her hands when people would show signs of discomfort upon meeting her. People often would ask her if she was burned in a fire and she would sometimes joke around that she was. Again such courage.
RUNNING FOR OFFICE AND GRADUATING WITH HONORS:
Jamie was feisty, tenacious, and determined which I’m sure played a role in the length and fullness of her life as one with EB. One would have to have some fight in them when enduring such a challenging existance. Two things that displayed this were Graduating with Honors and Running for student body Vice President!! “Bee who you want to bee, vote for Jamie G.” was her campaign slogan. Her campaign team dressed up as bee’s and lobby’d for her success.
Jamie was one of the most remarkable people I have ever known. Anyone who has ever met her could see and feel her strong impact and I feel so blessed to have had her in my life in a significant way. Even though death is a hard thing I can feel her rejoicing to be free from her limiting body and what beautiful things she will create on the other side and her goodness and love and service for others will leave a legacy for years to come.
Tiffany Peterson
Jamie attended BYU from 2000-2005. While at BYU, Jamie studied American studies and worked on a minor in Logic. she also sang with the BYU women’s Chorus. She graduated in 2005, and was part of the honors program.
I first met Jamie in the summer of 2000 when she moved to campus plaza to attend BYU and was in my ward. That fall she moved into my apartment and we were roommates for 2 years. Jamie quickly became one of my closest friends. Later on in our relationship she told me that after she had met me in our ward she requested to move up to my apartment. I am so grateful she made that request, my life has been so enriched by having Jamie as a friend. Like many of you I remember Jamie for her joyful personality inspite of the challenges she faced, but I also remember her as a fun loving, silly, and mischievous person. She had a life size yoda statue that resided in our apartment. We would often find yoda hidden in closets, behind curtains, and in our beds. Jamie had an exercise bike and we would often find her sitting on it eating chocolate cake, which she would often eat before dinner because it took her so long to eat that she wanted to make sure she had time to eat her dessert. She loved to joke around and just have fun!
Jamie would spend hours in her room singing and practicing her music for women’s chorus and the CDs she was making. I don’t sing well, so I was always puzzled when she said it wasn’t quite right and would sing it again, her voice always sounded magnificent, to me. I loved hearing her sing, it would always put me in a good mood. When I got married she sang at our wedding luncheon which has always been a special memory for me.
Jamie’s first date with Taylor was while we were roommates. I won’t go into too many details, but I remember it did not go well, and she was not interested in him romantically. We as roommates nicknamed him “sucker boy” because of a “kiss me” sucker he gave her on their first date. She declined! It wasn’t until a few years later that their friendship turned into a romance. Taylor was such a blessing to Jamie, and over the years he took such good care of her.
Jamie’s strength and courage with EB has helped me so much with my own challenges. I remember one day I was sitting on her bed rubbing her feet after a long day. I’m pretty sure I was complaining about my boy troubles. I asked her how she was able to always be so happy and stay positive, even though she had many challenges. I don’t remember her exact words, but basically she said: I have a choice, I could sit in my room all day, every day and feel sorry for myself, but that wouldn’t bring me any joy. I choose to be happy and do things that will fulfill my life. She also said that she still had hard days, and would cry and be frustrated, but she didn’t allow those to happen very often. This has especially helped me with my own family. I have two daughters with type 1 diabetes, clarissa age 8 and sarah 3, which can be very challenging at times for them. I have shared Jamie’s story with Clarissa and she even had the opportunity to meet Jamie two years ago. I often remind Clarissa that even though she has this difficult disease, she has a choice, and can lead a very full life, our circumstances do not have to limit us, and we can make the best of every day.
I remind clarissa that Jamie did not let EB stop her from anything. She sang, served a mission, went on numerous trips with family and friends, including NY and Disneyland. Was a camp counselor, Received a degree from BYU, got married, was active in politics, active in her church, had many, many friends, loved animals. When things were hard, she found a way to do everything. When she had a hard time singing, she’d practice more, took voice lessons, and even had surgery on her throat. When she couldn’t hold her paint brush, she taped it to her arm. When she wanted a cheeseburger but couldn’t eat it, she blended it up and happily enjoyed it. Jamie was determined to enjoy her life to the fullest, and she did!
Jamie was a beautiful person, inside and out. I am so grateful for the many ways Jamie has blessed my life, and for the great friend she was. Jamie’s life is a reminder to each of us to live life to the fullest, and not let our circumstances limit us.
April Meservy
Thoughts on Jamie Hartley’s Life
Jamie touched our hearts in personal – even sacred ways. Taylor asked me to share my personal feelings about her. I decided what made most sense was to just read some excerpts from a personal letter I wrote to her just a few months ago – summarizing my feelings regarding her huge impact on me.
A portion of the letter:
My angel and sister Jamie,
God must have known I needed a real live angel in my life. So there you were. Meeting you as we walked down the path from BYU to Campus Plaza ten years ago changed my life. I gained a best friend with invisible wings! On the very first day we met, we talked for hours and hours and hours. You became an instant friend and hero to me.
You have always been a safe place to come and talk (and cry ;) and just BE. That’s a rare and blessed thing to find in a person. You never judged me even when I talked nonsense or got flustered. Or made silly decisions. You just listened and loved. And let me eat your special Nerds Ropes and drink non-alcoholic Butter Beer.
Having the opportunity to put on concerts for USeb with you and getting to travel in and out of Utah to perform at Women’s retreats and Girl’s camps have been some of the highlights of my life. No concert is better (or more fun) than when you are involved. Seeing other people’s faces light up when they hear you sing and then watching them turn to each other with excitement or tears has been a real treat. With every performance I got to witness something special when you sang. Something truly heavenly.
Listening to you in the studio was like hearing the Celtic Women, The MoTab, Charlotte Church (early years), and Josh Groban (turned female) all in one person, but given an added halo and sparkle. I can’t even think as high as you can sing. It’s crazy. There were many times I just listened to you rehearse or record and thought, “Yep. Jamie doesn’t have ANY idea how good she REALLY is. She just doesn’t.” But then that’s just like your humble self. And even to be in the studio singing at all, with blisters in your throat that hurt and often slowed things down, I was in absolute awe. I thought, “Now THAT is the voice of an angel.” I really think that when you sing the veil between heaven and earth is lifted.
When you were recording your original song, Butterfly Free, about those you knew with EB, living and not living and decided to whisper their names toward the end of that track, over 60 of them, it was hard for me to not completely lose it. It was your way of honoring them, including your brother, Ben. It was such a touching thing to witness.
You have such a gift with music and recently out of nowhere all of a sudden you became this prolific artist. Your art, Jamie… YOUR ART. Where in the world did that crazy talent come from?!
Then there’s your sense of humor. I have seen that humor when you were in the operating room when they were cutting off pieces of the cancer on your arm yet again without anesthetic and you were cracking jokes to the doctor. I have seen it when you talked about your first date with Taylor. I have seen it when we were in the recording studio working on your CD. I have seen that humor when I needed it most, as I was in tears after a relationship I cherished ended.
I will never forget that moment in Reno when my little brother Noah, with Down Syndrome, placed his hands on yours and said that Jesus would heal you. I saw the tears in your eyes. You knew he spoke truth.
Jamie, Your relationship with Taylor is THE most inspiring relationship I have ever seen in my entire life. Watching you both has given me a view of what real love and lasting marriage can be.
So I guess I just want to say THANK YOU. God must really really love me a lot to bring you into my world. My life will never be the same because I have an angel buddy named Jamers who helps me continue to learn a bit about love and loss and life. All while polishing her cute little halo.
Good things can last. So I am looking forward to a long friendship far into the eternities.
Much love, April
A couple last thoughts…
Jamie had a very personal relationship with the Lord. She lived her life purposefully. Job 14: 14 reads, “If a man die, shall he live again?” Jamie knew to her core that the answer to this was yes, and she talked of it throughout her life. So not even the fear of death could hold her back from living life to the fullest. She really wanted to live life to the fullest on both sides of the veil.
Through the recent months it became harder to do what she loved. From the conversations we had it seems like one of the hardest things for her (even more than the actual pain itself) was that she simply couldn’t do as much. Her heart was willing, but her body was saying no. She talked more about feeling at peace with leaving this earth and her limitations behind… even in anticipation and excitement for the next stage of life. She would muse about it and what it would be like.
Years ago Jamie told me about a scripture that meant a lot to her and how she tried to live her life like that. It was about rejoicing as though the blessings she wanted had already come. She knew if she kept her part of her covenant, God’s promises to her were sure, so she decided to try to not to worry so much about what blessings hadn’t come quite yet. She figured they were as good as done, so why not celebrate now? I have thought about that many times since… particularly at times when I could use some encouragement or when I feel I have had to wait too long for a particular blessing. She didn’t want to wait to celebrate, so she lived life like the entire thing was a celebration; a celebration for things not yet realized, as well as for the things that already were realized. She wanted to live her life … and death … in celebration.
That’s exactly what Jamie did. That’s how she lived.
I believe that’s how she still lives.
We sure love you and miss you, Jamie. Thank you for your love, your friendship, and for teaching us how to really live.
Reflections
DEREK: Taylor has asked that I and Andrea read these words from both him and Jamie. Andrea is Taylor’s sister and I’m his brother in law. Andrea and I are happily married. He wanted a happy marriage between two spouses to represent Jamie and him.
Taylor writes: When my parents found out that I was interested in a girl with disabilities back in 2005, they were concerned about my capacity to handle the situation and were forthright in expressing their feelings. This is a letter Jamie composed before she and I married. She wrote this to my parents because they sincerely doubted whether I knew the potential difficulties a marriage like ours could have. Jamie wanted them to know of her confidence in us in order to ease their concerns. I’ll be quoting only parts of the letter because it was actually about five pages long, single-spaced. I understand my parents reacted with respect for Jamie and me and were grateful to have been made aware of these things. I find it deeply touching and very revealing about Jamie’s character for all of you to see:
ANDREA:
Jamie wrote:
Dear Jim and Linda,
I’m writing in answer to some concerns of yours….As for what to expect…for my care and…life expectancy, I don’t have good news for you.
Chances are, everyday, for the rest of my life, my skin will degenerate….Chances are, that some sort of infection will reach my bloodstream eventually.…
Did Taylor tell you that on top of EB [or Epidermolysis Bullosa], I have dyslexia, chronic anemia, chronic circulatory stress that has caused an enlarged heart, chronic fatigue, arthritis, scoliosis, atopic dermatitis, psoriasis and alopecia? Chances are, I will be a bald, toothless, blind, smelly hunchback in a wheelchair in no time at all if I don’t die first….
Chances are, I should be dead by now and should not be here to tell you how wonderful my life will be with Taylor, but because of him, all my worries are about to melt away into a sweet marital bliss. My point is, I cannot tell you all the ways in which EB will destroy a life,…[b]ut as far as what to expect looking toward our future in a gospel sense, I have very good news.
My life is a miracle. I depend on the Lord to grant seemingly impossible things every day….
Marriage will undoubtedly add responsibilities and challenges….I hope you will not doubt the Lord’s ability and desire to bless us according to not only our needs, but our desires….I anticipate more physical healing than ever before. Love is physically healing. Having someone interested in my comfort and wellbeing at my side is beyond my best expectations for me in this life. Having someone who actually seems to mutually need me and my love and support is something I have not experienced and it is one of life’s choicest blessings and responsibilities—a responsibility which I do not take lightly because of my deep love for Taylor.
I am the first to point out the challenges that can be expected in our future. From the beginning I was a skeptic and did not wish to pursue a relationship with him…because I did not believe it was fair of me to share or inflict my pain on someone else. When Taylor marries me,…I will worry constantly about how to satisfy his needs, but I know that where I fall short, the Lord will help me….
It would mean a lot to us if we could have your trust and confidence that we have received answers and revelations concerning the most important decision of this lifetime. I know you want [these answers] too….
Let me add to this my testimony of our Savior and His Atonement….[T]he prosperity of this marriage looks pretty impossible….Yet I know we can’t [make this work] without the Lord and [I know] His promise that we will not be denied any of the blessings if we are obedient and endure to the end. With Taylor, I can do so much more than just endure. Life will not be drudgery. We will be happy, for the most part. We are looking at the not-so-happy parts with eyes wide open, knowing that it is all part of the journey. We both see each challenge as an adventure, a problem to be solved, a puzzle to be completed….
This life is so short. Soon we will all be in the next room together looking through the veil at our family and posterity and realize that most of our worries here were futile. Then, Taylor and I can turn and face the eternity we can enjoy, with no bounds, no EB, no doubts of our abilities and the love we have for each other.
Thank you for the gift of your son. I accept. I will cherish him. I want the best for him. He seems to think that is me. I’d like to agree. So I will do my best to be a helpmeet for him. He is my dearest friend, my love and soon, my eternal life.
With much love and respect and all my appreciation,
Jamie
P.S. please don’t take this the wrong way
DEREK:
Taylor wants all of us to know that Jamie is a woman of amazing faith, optimism, and love. When he was deciding whether he should try to marry Jamie, he considered this quote: “A girl in whose presence you feel a desire to achieve, who inspires you do your best, and to make the most of yourself, such a young woman is worthy of your love,” President David 0. McKay, Gospel Ideals, p. 459).”
Taylor wants to show you how Jamie did this for him.
He says: I’m deeply privileged to be her eternal companion. Throughout our marriage, her faith was fulfilled. One worry was that she would limit me, but the exact opposite happened. She expanded me beyond my best dreams and wanted to make sure people knew I wasn’t significantly held back by her:
CHARITY: She made my dream of being a part of a charity come true—the United Survivors with Epidermolysis Bullosa, or USeb (www.ebsurvivors.org), that she conceived of with another friend with EB, named Cristina Perez, who passed away years ago before she could see the fruits of her designs with Jamie.
CAMP COUNSELOR: She let me join her as a summer camp counselor in Minnesota a few summers for another organization helping children with all varieties of skin disorders, not just EB.
POLITICS: She exposed me to politics and took me with her to Charlotte, North Carolina in 2012 after she was voted in as a national delegate for the Utah Democratic Party. I wouldn’t have been able to attend at all anywhere there if she wasn’t disabled and in need of some wheelchair assistance.
MUSICAL PERFORMANCES: I got to help her put together and be a part of musical performances she sang in, usually for fundraising and other good causes.
VACATIONS: She took me on two cruises, joined me on her first hot air balloon ride ever, went with me on trips that included eating with Shamu the Killer Whale at Sea World in San Diego, exploring Pawn Stars in Las Vegas, going on a haunted night tour in the Florida Keys, and playing in the shark tunnel of the Aquarium of the Bay at San Francisco’s Pier 39. She also helped me see my favorite animals, the wild cats, by visiting Hogle Zoo in Utah, and letting me see my absolutely favorite animal, the cheetah, sprinting at Busch Gardens in Florida. She also came along with me and some close friends to examine the Dead Sea Scrolls Exhibit at the Leonardo in Salt Lake City. She made it possible to go on adventures all around the country with her determination not to be held back by her struggles with EB. These adventures even included Disney World, before we were married, where the magic began—it’s where we first held hands—and then finally including the Wizarding World of Harry Potter in recent years where we drank Butter Beer and got a first class tour backstage, behind the rides, from very kind volunteers who reached out to us after the Harry Potter World staff prohibited Jamie from riding any of the rides because she didn’t have fingers to hold onto the safety bars, which put her in a fit of tears I’ve never seen before.
CONCERT: Jamie went with me to the first concert of my life, and hers, Taylor Swift’s Red Tour, and we were able to meet Mama Swift and give her a painting of aspen trees in the Alpine Loop for Taylor that Jamie created to remind her daughter of Utah and as a thank you to Taylor Swift for being a classy and decent pop artist to the younger generation.
EMPLOYMENT: She made it possible for me to start my own law practice, write a book on the morality of criminal defense, and teach a number of college classes on criminal justice while clerking for a judge and later while doing work as an attorney.
ADOPTION: Jamie and I desired to have children, but we decided adoption would be better than having our own. We gave it a try, but, ultimately, we were rejected by two different adoption agencies because Jamie had outlived her life expectancy of thirty years.Hartley Jamie 32A
VOLUNTEERING: Because of Jamie and her nurse, Janice Randall, who gave me a book for Christmas about famous lawyers, one of whom helped Eleanor Roosevelt in drafting the Universal Declaration of Human Rights, I was able to discover for myself the virtues advanced by the United Nations, go to Washington D.C., and advocate for the U.S.’s support in making a more united and cooperative world with the hopes of better solving global issues like world hunger, fatal diseases, and the tragedies of war. For example, due in large part because of the UN’s efforts, the number of children who die before the age of 5 has been reduced by nearly half since 2000. In 1990, an estimated 12.6 million children died before the age of 5. By 2012, that number had been cut to an estimated 6.6 million children. FACT: Global actions to prevent and treat malaria averted an estimated 3.3 million deaths, mostly of children under 5, from 2000 to 2012. FACT: The proportion of people living in extreme poverty was cut in half between 1990 and 2010. FACT: All developing regions in the world have achieved, or are close to achieving, gender parity in primary education. FACT: From 1990 to 2012, more than 2.3 billion people gained access to an improved source of drinking water.
UTAH HEALTH POLICY PROJECT: She let me help her with the Utah Health Policy Project of which she became a board member, seeking better health care for Utahns, and from which she heard specifically about the existence of the United Nations Association of Utah (UNAU) and passed the information along to me, making it possible for me to get involved there as Advocacy Committee Chair and a board member of UNAU.
FLYING: With the help of a dear neighbor and friend, Ruth Sulik, Jamie gave me my first flying lessons in a small propeller airplane. We cut through the air and banked over our house in order to see it below. We flew with Bald Eagles in our Alpine mountains, then sped to Utah Lake, flying not more than twenty feet over it. We then gained altitude, went into a dive, and swooshed under powerlines and simultaneously over a white picket fence. We then went soaring into the distance and landed in the middle of nowhere, next to a completely cut-off and quaint cottage house and glistening pond, only accessible by plane and landing on a dirt path runway. We then got into a small boat together, just Jamie and me, floating on the blue lagoon, paddling our way through cat tails while pursuing startled ducks, and then ending it all with a bang—literally, Ruth’s brother (the real pilot who brought us there and let my fly the plane by myself a bit) fired a bowling ball from a canon, ejecting it in a high, arching path, which crashed to the ground with a low thud hundreds of feet away, past the pond, and bouncing dozens of feet in the air before we lost sight of it.
ART: She let me be a part, to a small degree, in her over 60 paintings she created after learning that she may need to amputate her right arm eventually.
WRITING: I got to be her scribe while she dictated to me a lot of her life story.
SELF-IMPROVEMENT: Because we knew Jamie’s time was close, for the past eight months, she’d been fostering my self-improvement so that I’d be in my best shape spiritually, mentally, and physically at the time of her passing. As a result of watching one of her favorite TV shows together, the Mentalist, I learned a memory technique that has greatly enlarged my ability to remember lists and quotes. Not only has my mind progressed, but also my spirit, using the memory technique to permanently recall with ease over 100 quotes from scripture and the words of modern-day prophets. And, although it worried her, she did not discourage me from reaching my goals for physical strength. On June 21, 2014, about three weeks before she passed away, I was able to bench press 300 lbs. one time on a free weight bench press set that she let me keep in our bedroom area. I was able to do a maximum cumulative total in one bench press exercise of 11,275 lbs. on June 4tth. I’ve never been able to do any of these things until Jamie magnified me—she let me reach out to the closest I’ve ever come to three of my childhood dreams—be as strong as Arnold Schwarzenegger, be as smart as Albert Einstein, and as spiritual as my dear wife.Hartley Jamie 39
CHURCH: And, through all of this, she made it possible for me to serve the Lord in different church capacities.
FRIENDS: She multiplied my network of friends by at least fourfold and I now know so many wonderful and amazing people from all over the world through her.
TIME TOGETHER: Best of all, she made it possible for me to spend what I consider to be nearly 50 years’ worth of time in the eight and a half year married honeymoon we enjoyed. It was the best Walt Disney fairytale love story ever!Hartley Jamie 42She expanded me in all these and other ways by humbly accepting the social services and also the poverty requirements of Medicaid. Medicaid made it possible for her to receive daily nursing care, expensive bandages for her wound treatments, and immensely pricey cancer treatments from the Utah Huntsman Cancer Institute that we would never have been able to afford without that assistance.
We are eternally indebted to her ministering nurse angels who have helped her throughout the years.
And we sincerely thank all of you taxpayers who helped provide the life-saving and quality-of-life enhancing Medicaid for us. In considering your silent contributions to our government, please remember what a significant and profound difference it made in our lives.
So, to reiterate, I’m certain that because of Jamie’s impressive attitude and challenging life circumstances, she made me be able to enjoy her more in a more concentrated amount of time than most husbands get to enjoy their wives in even fifty years of a happy marriage. As Jamie promised my parents, “[W]e will not be denied any of the blessings if we are obedient and endure to the end.” With a careful eye of observation on the past, and also an eye of faith to the future, Taylor testifies this has all begun to come true.
Mom Gibson’s Remarks
(BREAKING THE MOLD)
At Taylor & Jamie’s wedding, Jamie broke with tradition and tossed out scads of bouquets. And now she breaks with tradition once again. Some of her honorary pall bearers are women.
(MADE IN JAPAN)
Both Ben & Jamie were “Made In Japan”. Her father said he’s lived twice as long as Jamie and accomplished half as much. But he said that before we began preparing our talks. After reflecting upon Jamie’s entire life, we realize just what an understatement that is. Jamie passed us up a long time ago.
(DOGGIE)
Jamie’s brother, Ben, started talking at a VERY young age. All things round, (including the moon) he called “BALL”. And all little live moving things he called “DOGGIE”, including his baby sister.
Mama Gibson intervened a little and encouraged Ben to drop the DOG part. And for the rest of Jamie’s life, thanks to Ben, her family has called her GEE.
As a baby, Jamie wanted to keep up with her brothers. She crawled all over the house, following them around until her hands were raw with blisters. Next she turned her hands over and crawled on the backs of her hands until they became raw. Then she scooted on her elbows. By the time her elbows were raw, her hands had healed enough to use again. This became a regular cycle.
(PETS)
I wonder if up in heaven Jamie still has pets. Can you imagine Jamie without pets? For part of her early years we lived on a farm near Dugway, in a little community called Terra. Some kids called it “Terra-ble” but Jamie & her brothers loved it there. Besides regular farm animals like chickens, turkeys, pigs & rabbits, each of our children had their own “bummer” lamb which they bottle-fed and raised. Jamie named her lamb Raisin Bran.
Other of her pets included a guinea pig, a hamster, a cockatiel, a parrot, …… a cat named Fluffy, a guppy named Shark, . . And there have been many more pets. Two honorable mentions are our pet crow, McGaw, and our horse named Roger.
(ROGER)
Jamie was too young to actually ride Roger; but she still loved to just sit on his back even when Roger wasn’t going anywhere. Often, when dad worked in the yard, he’s bring Roger down and tie him to a tree in the back yard. If Jamie knew it, she’d be out there too, asking her dad to lift her up onto Roger’s back.
One time, while Jamie was on Roger and the rope was too loose, Roger decided to put his head down and eat some grass. This sent Jamie tumbling forward …. down Roger’s neck. Thanks to Dad’s quick reflexes and angels from above, he caught her mid-air and saved her from harm.
And what did Jamie do?
She cried.
She did not cry from being hurt.
She did not cry from being scared.
She cried because she wanted to get back up on Roger.
And thus we see the nature of our Jamie: determined, almost fearless, and always willing to work hard for the things she wants.
(EB)
I wish it was possible to present Jamie’s memorial without mentioning EB. However, EB invaded so much of her life that we really cannot tell her story without mentioning it.
The disease is so horrible that we usually shield people from the morbid details. But I believe today is a time when this part of Jamie’s story should be told.
Jim & I had two children with this very rare (and very terrible) genetic disorder called Recessive Dystrophic Epidermolysis Bullosa (EB).
Jamie’s two oldest brothers, Troy and Aaron, did not have EB, thank goodness.
When Jamie’s third brother, Ben, was born, he had large, denuded areas on his tiny body. When I tried to nurse him, the wee bit of trauma from his sucking caused blisters to form on his lips, tongue & throat.
The most notable characteristic of EB is defective skin and mucous membranes. You cannot pick up EB babies the same way you do other babies. If you did, you would cause the epidermal layer of skin to separate from the dermis. Then fluid fills into the separation causing blisters to form.
When blisters fill up with fluid, pressure from the fluid or even gravity can cause additional blistering.
Jamie’s skin was extremely fragile. She had no protection against bumps and scrapes. Although her hands and feet looked quite normal at birth, her nails thickened, became opaque, disfigured & dropped off with what seemed to be spontaneously. Additionally, her fingers and toes became not actually webbed but rather fused together.
Skin injuries from EB are treated like burns. There are always open, red, weeping wounds; and bandages often get stuck to the sores. Ben spent many painful hours soaking to unstick bandages so he could bathe and get re-bandaged. If you forced the dressings off, you would further injure the EB patient.
(SURGERY)
Even eating is risky for people with EB. When Jamie was five years old, she injured her esophagus. When it healed, scar tissue closed it off which, of course, became a medical emergency. At the University of Utah, we met with Dr. Clifford Snyder & Dr. William DeVries to discuss options. The plan we came up with was to do a “colon swing” which entailed taking a piece of Jamie’s colon and using it to build her a new esophagus.
Dr. Snyder became known for having separated the conjoined “Hansen twins”. Dr. DeVries became known for implanting an artificial heart into Barney Clark. In fact, DeVries did Jamie’s surgery the same day he did Barney Clark. He didn’t plan things that way; but that’s what happened. That was Dec. 2, 1982.
Jamie, of course, had an uphill battle; but she recovered. She spent three weeks in ICU. Later in her life Jamie had cancer on her right arm and her left foot. In a physical sense, every day was a secret battle for Jamie. SECRET because she hardly ever complained.
(KAYE STARR)
Because of EB, Jamie’s means of musical expression was limited. She played When she lost all dexterity, she stated that “EB could not take away” her voice; and thus she launched into singing.
However, her notion that EB could not take her voice was not exactly correct.
In her book, “The Measure of My Creation”, LDS composer, Kaye Starr Henninger, wrote:
[quote] “Jamie’s disorder caused deformities and scarring in her mouth, throat and delicate mucosa tissues throughout her body.
“Her tongue was so badly affected that she could neither lift it to touch the roof of her mouth nor thrust it forward to enunciate clearly.”
(Jamie could not even stick out her tongue.)
Kaye Starr continued:
[quote] “I observed it was hard for Jamie to speak; and I wondered if singing would damage her palate or throat. I also noticed it was a lot of work for her to sing. Nevertheless, Jamie maintained a vibrant hope that she could express herself through singing.” [unquote]
(MUMMIES)
We used to buy gauze by the case. Most people with EB have their bodies wrapped up like mummies.
Ben and Jamie had to wear bandages every single day of their lives. When Jamie began making serious plans to move to Rexburg, I sat her down and asked, “Jamie, how can you go off to college? You’ve never done your own bandages before. Who is going to take care of you?
The very next morning Jamie was up before everyone else; she had taken her shower and was then doing her first bandaging all by herself. At Ricks, living in student housing, Jamie would get up in the middle of the night to shower and change bandages. She did this because she did not want her needs for bathroom / dressing – change time to interfere with the needs of her roommates. Folks, we’re talking HOURS, several HOURS.
There were a few times when Jamie had to completely drop out of school due to sheer exhaustion. For 19 years our family had never gotten any outside help for bandages, medications or anything else. Now with Jamie living in another state, some glorious person put her in touch with welfare services. Their programs were so great that they even offered to have a note taker accompany Jamie to her classes. She turned that down; but many of their other services she accepted. Finally, with outside help, Jamie was able to shift her energies into her acadermics. Medicaid was a game changer for Jamie.
(A REALLY GOOD SINGER)
Mama Gibson remembers a mother-daughter chat from long ago, when Jamie was attending Ricks College. Jamie shared with her the dreams she had of becoming a really good singer. She said she was even taking Anatomy in order to study how to use muscles and other body parts needed for voice projection, etc.
Mama told Jamie she felt there was nothing wrong in taking this matter up with the Lord. (Jamie was probably already doing this anyway.)
But Mom suggested that she pray and that she be specific in asking God to bless her mouth, her diaphragm, etc.
Mom felt that if Jamie had sufficient faith, and if her desires were righteous, Jamie could rest assured that God would bless her voice according to His will, of course.
Mama explained that she thought it would be especially pleasing to God if Jamie used her voice to glorify Him. (But then, we all know that she would never do otherwise.)
(THIS IS VERY IMPORTANT)
Mama Gibson thought about Hannah, the wife of Elkanah, and mother of Samuel. Like Jamie, Hannah also had a deep concern that she took to the Lord.
Some of Hannah’s petition was:
[quote] ”O Lord of hosts, if thou wilt indeed look on the affliction of thine handmaid … and … wilt give unto thine handmaid a man child, then I will give him unto the Lord all the days of his life .. “ [unquote]
The Lord remembered Hannah; and she got her man child whom she named Samuel. Afterwards, as she had promised, upon weaning Samuel, Hannah returned him back to the Lord.
Even though Hannah’s & Jamie’s circumstances were different, their stories still have important things in common. Both Hannah & Jamie had something they wanted badly. For Hannah it was a man child. For Jamie it was an improved singing voice. Both of them took their concerns to the Lord; and the Lord granted both requests. Most importantly, both Hannah and Jamie offered the Lord righteous payments in return.
(CD JACKET)
I have been asked … to explain a couple of things about Jamie’s music.
First
Regarding a selection on her “Good Night Christmas” CD from years ago called “Walking In the Air”. I quote Jamie’s own words from her CD jacket as she wrote about her deceased brother, Ben.
[quote] “I miss his rascally laughter, his mischievous schemes, the sense of humor that only a brother and sister share.
“I dream of my enchanted playmate, wishing he would come and play with me once more.
“Ben could take my hand and leap into the cool night air, whisking me away…TO SHOW ME HIS HOME IN THE SKY.” [unquote]
Second I mention another selection from the same CD, written by Kaye Starr Henninger, called “He Shall Be Born”. The words come from the text of Alma 7 in the Book of Mormon.
It was while Taylor Hartley listened to Jamie sing this song that he became enchanted with the woman who would someday become his bride.
I CLOSE THESE THOUGHTS WHICH ARE CLOSE TO MY HEART… IN THE NAME OF JESUS CHRIST, AMEN
Dad Gibson’s Remarks
I would like
to thank all of Taylor & Jamie’s friends for their love and prayers and
concerns. Our ward here has been simply
wonderful in their support of our family as well. It is kind of how I imagine heaven to be.
I have 4
children all in whom I am well pleased. While Ben and Jamie were growing up Troy and
Aaron got the short end of the stick as to my parental time spent with them as
compared with Ben and Jamie even though a good deal of that time was spent with
the other two were in bandaging and caring for life threatening needs. But to Troy & Aaron, time spent is time
spent. I am grateful for Troy and Aaron
for being such good kids because I didn’t see any resentment or rebellion in
them.
Today we are
here to celebrate Jamie’s life.
Thirty six
years ago I found myself in the Yokosuka Naval Hospital in Japan where my wife,
Sheila, was about to deliver a baby. A doctor came in and checked to see how
far she was dilated. He promptly
announced that she was dilated only 4 centimeters and had a good ways to go before
the baby was ready to deliver. He left
the room for other parts of the hospital.
Only a few
minutes later Sheila said, “Get the doctor; this baby is coming!” I ran out looking for a doctor. Couldn’t find
one so I grabbed a nurse; and we arrived just in time as our sweet little Jamie
make her entrance into the world. She
had things to do and places to go and no doctor was going to slow her down.
Jamie has
been the same way ever since.
When I first
held my little daughter for the first time I looked her over checking for any
signs of EB which her older brother Ben was born with. Her hands were beautiful. She had long slender fingers with finger
nails. She had lots of dark hair and
eyes like my dad’s. As far as I could
tell she was perfect. I was greatly
relieved.
After her
first feeding, I got to hold her again and then I noticed a blister on her lips
that formed while sucking. My heart
sank.
On the day of
her death, Jamie labored for breath in her sleeping state. At the moment just before death, her breathing
changed. She took her last breath and
then no more. With Taylor, her mom, and
I at her bedside we witnessed her last movements. Where
36 years earlier there had been a blister on her lips, on those same lips now a
serine smile formed as she peacefully slipped away.
In the in
between time I would like to say that Jamie’s life was in itself a sermon. Each of you that knew Jamie heard a sermon
that was just for you, not in words, but in the way she lived and in the way
she made you feel. The sermon I
repeatedly saw from Jamie’s life is Faith, Hope, Charity and enduring to the
end.
The principles as contained in the scriptures are what drove
Jamie to do the things she did. This is where her source of strength, hope and
optimism came from, and she was often unaware of the affect she was having on
others
Jamie once said:
“I am sometimes puzzled by people telling me that I inspire
them. I just do what I have to do. How is that inspiring?”
She didn’t have a clue that the life she was leading was a
sermon to many - and each heard a part of the sermon that applied directly to
them of which Jamie was mostly unaware.
Skip
Hope, Faith &
Charity
We often hear
or read the phrase “Faith, Hope, & Charity”; but in my mind it really goes
“Hope, Faith & Charity”, with Hope first.
Hope
I like to keep things simple. In my mind, I think of Hope as
something we want; it’s a goal. It is
more than a wish. A wish seems to have
an element of wishing for something without doing anything to bring it to pass.
Faith entails the actions we take to achieve the desired goal.
Charity isn’t just a tax deduction. Charity is the love Christ
exhibited when He died for our sins. Charity is the pure love that motivated Him
throughout His life and to endure the final days of that majestic life. And as we study that life by reading the
scriptures, we find that Christ himself invites us all to become like Him.
Enduring to the End.
I don’t know if I
really like the word “enduring”. It seems incomplete. It implies an element of burden without fully
expressing the joy and happiness there is in serving others. Jamie found great solace, satisfaction, happiness,
and joy in doing things for others. It
was her escape from her burdens. She
developed the remarkable ability to focus on others and forget her own pain.
These terms (Faith, Hope,
Charity and Enduring) are the ideas that I will use in describing a few events
that took place in Jamie’s life that I witnessed and that I think we can strive
to emulate.
Jamie
loved music. She wanted to develop her
talents in music. She wanted to express
her feeling through music. Sometime
about junior high she joined the school band at Dugway High School at Dugway Proving
Ground. What do you think Jamie could do
in a band? As you think through all the available instruments, you can see that
fingers are required for most. The
beautiful, slender fingers Jamie once had were now fused into a single mass
with only a thumb protruding.
Faith/Action.
Jamie chose
to do the percussion instruments: drums, xylophone and such. She had excellent timing and did well in her
pursuit until she could no longer hold drumsticks or xylophone mallets. When
she found herself in this state, she still determined to do something. What then
could Jamie do next to express herself in music?
New Hope.
She turned to
voice. But what you don’t know and is now not apparent ... at first, she had inherited
a voice very much like mine. She was not
an especially good singer. Jamie had a lot to overcome. She continued in Hope and Faith. She searched
through the population of Dugway, which at the time was probably 2000 residents.
She found the
best singing teacher she could find and faithfully began to train her
voice. After some hard work, she felt
confident enough to joined the high school choir. Mr. Neilson, the choir
director, once stated that Jamie was always on key and that many of other choir
members would queue off of Jamie to find their note. Once she was on her way,
then came Endurance. Jamie continued to strive to improve her talent throughout
her life.
Another Example.
While in high
school Jamie talked of going to college.
I personally struggled with many things in knowing how to be a good
parent for Jamie. In my estimation at
the time, I didn’t believe that she could ever be able to go to college or even
get married. I struggled with my
responsibility as a parent. Should I
tell her that she may not be able to go to college and that it would be hard
for her to find someone who would be willing to marry her? Or, should I let her figure it out on her own
and then be there to help pick up the pieces.
I didn’t want to discourage her and yet I wanted to protect her. What should I do?
As she
approached high school graduation, she went out and perused some scholarship opportunities
and was successful. A few weeks before Jamie
planned to leave for Ricks College, Sheila and I said to her, “Jamie, How can
you go to college? You can’t even
bandage yourself.” She looked at us
pensively and didn’t say anything. From
that point on she refused her mother’s help and began bandaging herself with no
small difficulty. She went off to Ricks
College; a demonstration of fulfilling her hope with faith and determination.
At Ricks
College Jamie fell in with some of the most wonderful roommates you can
imagine. Jamie planned how and when she could use the
bathroom time she needed for bandaging so as not to interfere with the other 5
girls in her apartment and still make it to her classes. No small feat. She got up and bandaged in the middle of the
night when no co-ed in her right mind would ever be awake. Jamie continued to do her own bandages until she
qualified under Idaho state rules for a nurse to come and help her
bandage.
Jamie went on
to graduate from Rick with honors, and then from BYU with honors, and as my
wife says, from life with honors.
Skip
So far I
haven’t said much about Charity or loving and serving others.
While growing
up Jamie attended a summer camp in Michigan for kids with skin problems of all
types. This camp only invited kids to
about the age of 16 or 18, I don’t remember.
Anyway after she had passed the age requirement for the camp, she was
invited back as part of the staff to act as a camp counselor. From these experiences she formed a new hope
– a new goal. She wanted to run her own
camp here in Utah just for kids with EB.
She used her considerable talent in singing and organizational skills to
raise money to bring about 25 kids from around the country and around the world
(like Guatemala, Australia and Belgium), with their attendants, to a Park City
location. All I have time to tell you is that they all had a marvelous
time. In talking to some of the EB kids,
I was told that the camp was the main thing in their lives that made them want
to live, and was what they looked forward to all year.
Charity and
Endurance is never giving up and finding joy in what you are doing. Not easy for anyone. All of this requires the Lord’s help. With the Lord’s help – you can do all things
that are necessary for your salvation and to fulfill your own hopes and
desires.
Skip
In the
forgoing I tried to show that faith is demonstrated as a principle of
action. There is another element of
faith which Jamie had that I would like to mention. It is described in this scripture that says:
“Faith is not
to have a perfect knowledge of things; therefore if ye have faith ye hope for
things which are not seen, which are true.”
This
scripture implies to me that if we see something then we have knowledge of it.
And if you know something, you don’t need to have faith. Or in other words, I have not seen Christ,
therefore I don’t have a perfect knowledge that He exists. So in place of
perfect knowledge I have a certain confidence level that He in fact does
exist. This confidence is faith. We live as if we had perfect knowledge.
A week before
Jamie died, at a time when her death seemed imminent; I sat down with her to
have a little daddy daughter talk. I
wondered now that death seemed to be staring her in the face if perhaps she
might have some fears. I said to her,” You
know, we believe in Jesus Christ; we believe in the Atonement and we believe in
a life hereafter. But we don’t know for
100% that it is true.” Jamie said,
“Yeah, I have thought of that. I have
looked back over my life and have seen so many assurances that these things are
true that I am not going to take council from my fears. I am ready to go.” Jamie’s faith instilled courage in her and
she stepped boldly into the unknown with a smile on her lips.
D&C 132:5
“For all who will have a blessing at my hands shall abide the law which was
appointed for that blessing, and the conditions thereof, as were instituted
from before the foundation of the world.
Sometimes we
fulfill the law but we do it for the wrong reasons; and we wonder why things
didn’t turn out the way we thought the scriptures said they would. The conditions spoken of generally require
that we do things with a humble heart.
If Jamie
affected you in some way and you would like to have the same effect on others,
you can do it. But, then you might say, “Well,
Jamie had a greater capacity than I do.
In this regard.” Neal A. Maxwell said:
“God does
not begin by asking us about our ability, but only about our availability, and
if we then prove our dependability, he will increase our capability.”
Jamie tapped
into that as she showed herself available and dependable to the Lord, and so
can we all.
Skip
Now, living
as if we had perfect knowledge, somewhere along the line we have a reality
check.
When I was
growing up in Santa Cruz & then Hawaii, my first love was the ocean –
surfing, sailing, spear fishing, body surfing – that is where I spent most of
my free time. At about age 13, I was
sitting in church one day and I had a reality check. I said to myself, “ I want to know 100% that
I should be in church, and that it is good for me, because if it is not going
to make any difference, I don’t want to waste my time being in church when I
could be out surfing”. The speaker must
have been boring that day.
On my faith
scale, I would say that my confidence level concerning church activity was
oscillating somewhere around 50% that going to church was better for me than
surfing on Sunday. After many years now of
living and doing and going to church, my confidence level is much higher. We
act as if we knew things that we believe in are true, and then we get
confirmations in many forms - some of which we call whisperings of the Spirit.
Our increase
in confidence or our increase in faith is a gift from God and is bestowed as a
reward for personal righteousness. It is
always given when righteousness is present, and the greater the measure of
obedience to God’s law the greater will be our endowment of faith.
Skip
Only here in
case I get a thought and want to refer to it.
Moroni 7:40
40 … How is
it that ye can attain unto faith, save ye shall have hope?
Ultimately all of our hopes and faith and charities are rooted
in Jesus Christ.
Alma 32:21
21 And now as
I said concerning faith—faith is not to have a perfect knowledge of things;
therefore if ye have faith ye hope for things which are not seen, which are
true.
1 Corinthians
13:13
13 And now
abideth faith, hope, charity, these three; but the greatest of these is
charity.
47 But
charity is the pure love of Christ, and it endureth forever; and whoso is found
possessed of it at the last day, it shall be well with him. Novelette
Munroe, “She is everything any woman would aspire to be. Her beauty transcends
age or skin deep. I looked up to her in every way. I admired…her strength as an
intelligent woman, her sharp wit and stunning humor, her ability to nurture,
her quality to inspire something better than you could dream for yourself, her
talent for the arts, her adept nature for planning events and fundraisers, and
her belief in a higher power that loves us more than our finite minds can
comprehend. She believed in me when I couldn’t. She hoped for me when I
wouldn’t. She dreamt for me when I couldn’t sleep. Best of all she loved me
back just as fiercely and got to me in ways very few do.
One World
by David Downes
I hear a baby crying
A sad sound, a lonely sound
I want to take her in my arms
And then I dry away all her tears
I see a boy, who's frightened
A young boy, with old eyes
I long to say 'You're welcome here,
You can be happy now that you're home'
We're all a part of one world
We all can share the same dream
And if you just reach out to me
Then you will find deep down inside
I'm just like you
Loud voices raised in anger
Speak harsh words, such cruel words
Why do they speak so selfishly
When we have got so much we can share?
So let your hearts be open
And reach out with all your love
There are no strangers now
They are our brothers now
And we are one
We're all a part of one world
We all can share the same dream
And if you just reach out to me
Then will find deep down inside
I'm just like you
We're all a part of one world
We all can share the same dream
And if you just reach out to me
Then will find deep down inside
I'm
just like you
Start here
Having mentioned the love and compassion of God one might
then wonder why God allows people to suffer. There is an answer just for you,
but you have to seek after it.
I thought it might be beneficial to relate to you my struggle
for an answer to this question of why God allows such suffering. But first I must explain for those of you who
are not LDS.
Some ten or
15 or 20 years ago I was on a fishing trip to Yellowstone with several
employees from Dugway Proving Ground among whom was the base commander Col. Fuzy. He is Baptist and I am Mormon, yet we had
many things in common. One of which was the fact that we both had children that
had serious physical challenges. As the
spirit of gratitude to God settled upon both of us, as we talked we both
recognized God’s hand in our lives and that of our children.
We spoke of
things that were near and dear to our hearts.
I spoke in Mormonese and he spoke in Baptistese, yet both of us were
able to translate into our own hearts what the other was expressing. I would like to share with you some ideas in
Mormonese and hope that in that same spirit that Col. Fuzy and I shared that
you will be able to translate into your own belief system these thoughts even
if my terminology sounds weird to you.
I am not as
interested in being right in some of the ideas that I want to share as I am in
the hope that we all go away with the mutual feeling that there is a God in
heaven, He knows us, He is a loving God, and He is compassionate.
Why does God allow suffering?
To begin with, one only needs to look at why did God allow
his Son Jesus Christ to suffer beyond our comprehension? The short and somewhat incomplete answer is
that it was necessary in order to satisfy justice that a redemption would fully
and adequately cover all the sins the rest of us commit, so that we can be
redeemed, washed clean, refreshed, and brought back into the presence of the
Father.
This is the journey that I was led through that gave me some
inkling of why two of my children had to suffer with EB. It is my own personal answer and may not
apply to you. Let the Spirit be your guide.
I was one day reading the scriptures and I came across this
passage:
Alma 7:
11 And he shall go forth, suffering pains and afflictions and
temptations of every kind; and this that the word might be fulfilled which
saith he will take upon him (broad brush) the pains and the sicknesses of his
people.
12 And he will take
upon him death that he may loose the bands of death which bind his people; and
he will take upon him their infirmities, that his bowels may be filled with
mercy, according to the flesh.
Up until this time when I had read these words “he shall go
forth, suffering pains” I would think of what happened to Jesus on the last day
of His life: Gethsemane, the flogging, carrying the cross up the Via Dolorosa, being
nailed to the cross and such. But this
time for some reason I imagined Christ suffering EB; that which my daughter
carried throughout her life. Then in verse 12 we see that Christ took upon him
death. So we can see how the author used
the term “take upon him”. To me it means that Christ took death from the body
and fixed the body as we see he rose from the dead after 3 days. So then we can
say that he will take upon him the pains and sicknesses of all people and
overcome them or fix them.
Then I remembered another scripture.
2 ni 9:6
6 For as death hath passed upon all men, to fulfill the
merciful plan of the great Creator, there must needs be a power of
resurrection, and the resurrection must needs come unto man by reason of the
fall; and the fall came by reason of transgression; and because man became
fallen they were cut off from the presence of the Lord.
7 Wherefore, it must
needs be an infinite atonement—save it should be an infinite atonement this
corruption could not put on incorruption. Wherefore, the first judgment which
came upon man must needs have remained to an endless duration. And if so, this
flesh must have laid down to rot and to crumble to its mother earth, to rise no
more.
As I read these scriptures there were many elements that
spoke to me; the fall introduced corruption to the body including EB as well as
death, and that the atonement would allow “this corruption to put on
incorruption.”
My mind caught on and kept going back to the word “infinite
atonement.”
I pondered the meaning of the words infinite atonement and
prayed about it. Then a brilliant thought came into my mind. It was too brilliant for me to have thought
of it on my own. I was praying specifically about why things go wrong with the
body and the atonement. The Lord answered my prayer, through scripture, specifically
according to my prayer. You should realize that the infinite atonement is not
limited to the answer I received, but only that my answer was contained in the infinite
atonement among other things.
The answer that came to me is that it wasn’t necessary that I
fully comprehend the meaning of infinite atonement. It was only necessary that I understood that
it included all the things that could possibly go wrong with the body.
Now we can see why God many times talks in broad brushes and
not fine detail so that many people can mine out those principles, those things
that apply to them.
So now relating this scripture back to the first scripture in
Alma 7 that I read I synthesized the two to mean that The Lord will take upon Him
and fix all the things that could possibly go wrong with the body and overcome
them Just like he did with death and will in the future make it available to
us.
So, why is that necessary?
My thoughts go back to when Christ was baptized. We often talk of baptism being necessary for
the remission of sins, which is true enough for us, but what about Christ? John the Baptist himself recognized that
Christ was not in need of baptism for the remission of sins when he said:
Matthew 3:14
14 But John forbad him, saying, I have need to be baptized of
thee, and comest thou to me?
15 And Jesus answering said unto him, Suffer it to be so now:
for thus it becometh us to fulfil all righteousness. Then he suffered him.
What this means to me is that Christ was all about keeping
all of God’s commandments. It wasn’t
good enough to say, oh, you have no sin, you don’t need to be baptized (which
seems to be John the Baptist’s mind set).
Justice required that if Christ were to keep all of God’s
commandments he had to be baptized. It
had to be a reality. It had to exist. It could not be just theoretical. No allowance could be made.
Now, if this is the case, then taking this
logic and relating it back to the forgoing, if Christ is going to take upon
himself or overcome all things that can go wrong with the body, then, they must
exist. In my estimation and understanding,
the things that can go wrong with the body can’t just be theoretical, they have
to be real, they have to exist, and we or someone has to bare them and endure
them.
If you ponder this thought deeply, it may occur
to you that Christ is not the only one who brings about some parts of the
atonement. I don’t know how to put it
into words, but it seems to me that those who carry these heavy burdens share
with Christ in some way the bringing about of significant parts of the
atonement.
So, now the question arises – Who will have to
endure them? At this point we are beginning to step beyond the bounds of
information as given us in the scriptures, but my mind does go there and I
search for possible answers.
The same Neal A Maxwell of whom I spoke above
once said
Jesus of
Nazareth, Savior and King (DEC 2007
BY ELDER NEAL
A. MAXWELL
I testify
that just as He has helped to carefully construct this second estate for all
mankind, He also has helped to carefully construct each of our little universes
of experience.
For those of
you who are not LDS, the words “second estate” are Mormon code words meaning
this life on earth.
So, Christ
helped to prepare, design, offer???... I am not sure what the full meaning of
the words “helped to carefully construct each of our little universes of
experience” means. I need more detail.
In deeply
wanting an answer as to “who” would carry the heavy burdens of severe maladies
like EB one must be careful not to expand Elder Maxwell’s comment beyond what
was intended, and that is what I tend to do sometimes.
From the
above statement I have constructed a scenario in my mind where I see Christ in
the pre-existent state (The First Estate) coming to my children and asking them
if they would take upon them EB; and they have the opportunity to consent.
The whole
idea of consenting to such a burden is satisfying to me; it releases a good
deal of stress in believing that we weren’t just suppressed with such a
thing. It makes God more compassionate
to me. But, after thinking all of this, I have to come back to the statement
itself and realize that I may have expanded it beyond it’s intended meaning. But
having the thought that God allowed us to consent to many of our trials we were
to have on earth leaves me with relief and satisfaction. Let me also say that many of our trails
were/are self created by poor choices, but I am not going there.
Let me drop the “Who” for now and go on to the
resurrection.
In speaking of the resurrection we read in
Alma 40:23 (a Book of Mormon scripture)
23 The soul shall be restored to the body, and the body to
the soul; yea, and every limb and joint shall be restored to its body; yea,
even a hair of the head shall not be lost;
What if someone were to be restored to their body with EB? Or
what if you who have perfect bodies were to contract EB in the hereafter? God simply won’t allow it and They have taken
steps to prevent exactly that from happening. The verse continues:
“but all things shall be restored to their proper and perfect
frame.”
How is this done? At some point Christ will take upon him all
the things that can go wrong with the body, and we simply do not know the
details of when, where, and how all this will be done.
But the scriptures leave some wiggle room as to a possible
time that He will take upon Himself these great maladies. It seems to me that
it would have to be sometime between death and the resurrection itself. That is to say that there could be a time
when Christ will come to those folks whom He may have asked in the First Estate
(pre-mortal life) to take upon them serious problems or challenges and He may come
back to them personally at the end and take from them the burden He asked them
to take upon themselves in the first place. To me, that sounds like something
Christ would do. But the scriptures
don’t really say anything like that.
Let me finish on a happy note that demonstrates the love and
compassion that the Lord has. I hope
something like this may yet happen again in the future. Keep in mind that this is my own hope and not
necessarily LDS Church doctrine.
3Ni 17
5 And it came to pass that when Jesus had thus spoken, he
cast his eyes round about again on the multitude, and beheld they were in
tears,
6 And he said unto
them: Behold, my bowels are filled with compassion towards you.
7 Have ye any that are
sick among you? Bring them hither. Have ye any that are lame, or blind, or
halt, or maimed, or leprous, or that are withered, or that are deaf, or that
are afflicted in any manner? Bring them hither and I will heal them, for I have
compassion upon you; my bowels are filled with mercy.
8 … for I see that
your faith is sufficient that I should heal you.
9 And it came to pass
that when he had thus spoken, all the multitude, with one accord, did go forth
with their sick and their afflicted, and their lame, and with their blind, and
with their dumb, and with all them that were afflicted in any manner; and he did
heal them every one as they were brought forth unto him.
10 And they did all,
both they who had been healed and they who were whole, bow down at his feet,
and did worship him; [and they] did kiss his feet, insomuch that they did bathe
his feet with their tears.
I hope this
happens again, because I want to be there.
I want to bath the Lords feet with my tears of gratitude for all that He
has done for my family and me.
I leave you
with my feelings and conviction that I see in God great love for all of his
children,
I see great
compassion in Him of us.
I see that
God the Father having seen Christ suffer so in the last hours of Christ’s life,
that God is sensitive to our suffering, but for some greater good of which we
do not know the details, He allows suffering to happen.
I see in God
that He has the desire and ability to make it all worthwhile at some point.
My thoughts, feelings,
and testimony are contained in this scripture
Alma 36:3
For I do know
that whosoever shall put their trust in God shall be supported in their trials,
and their troubles, and their afflictions, and shall be lifted up at the last
day.
Close.
Some other
relevant thoughts if needed.
1833
D&C 98:3
Therefore, he giveth this promise unto you, with an immutable covenant that
they shall be fulfilled; and all things wherewith you have been afflicted shall
work together for your good, and to my name’s glory, saith the Lord.
And in
another place he wrote:
Doctrine and
Covenants 90:24
24 Search
diligently, pray always, and be believing, and all things shall work together
for your good, if ye walk uprightly [before the Lord].
Bishop’s Remarks
Jamie endured. She faced trials and afflictions known by only a few. My lasting impression of her will be one of peace. She lived in peace, with a calm dignity that was impressive and memorable. She brought peace and solace to others through acts of personal love, and through the use of her many talents. Truly she exemplified those the Savior referred to in the Sermon on the Mount, when He said, “Blessed are the peacemakers: for they shall be called the children of God.”
She reflected, lived and demonstrated the love of our Savior Jesus Christ, who was known as “The Prince of Peace”.
One lesson that we can all take from Jamie’s mortal existence, then, is our own ability to live peaceably. And, as we do that, as we give that great gift, we can find peace in our own lives…even in an evil and violent and tumultuous world.
My prayer is that we can live like Jamie…peaceably, worthy to partake of all of the blessings our loving Heavenly Father has in store for us, including this one.
“Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.”
Photos of Jamie and Me
Memory Room Photos
Give-aways of Jamie’s charity and music
Give-away table to remember Jamie by
Some of Jamie’s art
Jamie giving away Forget Me Not seeds with her last message: “The ideal is real.” I agree.
Photo of Jamie and Taylor riding horses, reaching out to each other as Jamie prances away, shared by Monsie and Justin Roeder, also among the many, dear, precious, and wonderful friends Jamie had and who treated her as equally good.
For the Daily Herald: “Jamie Diane Gibson Hartley (August 27, 1977 – July 10, 2014) passed away with a smile of serenity coming across her lips as she slipped away. For more information, please visit
http://www.affordablefandc.com/obituaries/jamie-diane-gibson-hartley/
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