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CHD Magazine

Published by CHD Magazine, 2022-02-08 16:18:19

Description: CHD Magazine | Heart Month Celebration

Keywords: chd magazine,heart month celebration,heart month,heart month 2022,wear red,the heart community collection,chd news,chd stories of inspiration,hope for chd,chd support,chd awareness,congenital heart disease,jenny muscatell,muscatell ministries,valiant works publishing,amy m. le,quill hawk publishing,anna jaworski,heart to heart with anna,hearts unite the globe,magazine submissions,chd articles,heart mom,heart dad,warrior stories,heart warrior,chd devotionals,heartcharged,healing hearts vietnam

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FEBRUARY 2022 HEART CHARGED SCAR/BODY POSITIVITY \"THIS TYPE OF BIONIC IS WARRIOR ITS OWN KIND OF STORIES BEAUTIFUL...THE IDEA MEDICAL NEWS HEARTWORKS OF BEAUTY WITH HEALING BULGES OR SCARS WILL HEARTS VIETNAM BE A LITTLE MORE ASK UNDERSTOOD.\" ANNA BP.E3T9HANY KEIME RECIPES

Table of contents 03 Letter from the Editor 04 Behind the Movement 05 An Ode to Heart Parents Amelia Woods 06 Healing Hearts Amy M. Le 08 The Dove Thomas H. Dahlborg 10 Healing Hearts Vietnam Jenny Muscatell 12 The Heart of the Matter Staci Mauney 14 Hope of a Heart Warrior Lisa Colvil 15 Miracles Tom Garz 16 HeartWorks Calla Huxtable 20 I'm Sorry How You Know Jenny Muscatell 21 Heart Skips a Beat Carli Valentine 22 Warrior Spotlight Tori Joy Geiger 25 Charcuterie Board Recipe Amy M. Le 29 11 Things I wish My Child's Dr. Knew Anna Jaworski 31 Stepping Outside the Diagnosis Chrissy L. Whitten 34 Dale's Heart Amy M. Le 39 HeartCharged Bethany Keime 44 Tablet Talk Faith Brackett 46 The Cry of a Heart Warrior's Mother Daphne Davis-Patrick 47 Ask Anna Anna Jaworski 50 Wear Purple Day Victoria Scoggins 51 Meet the Team 54 Podcasting 55 Gift Shop 65 Just for Kids 70 Submissions

From the Editor The Heart Community Collection - CHD Magazine We are excited to offer you this very special edition of CHD Magazine as we celebrate Heart Month and CHD Week. It has also been a year since the inception of this wonderful community of givers and we could not be more moved by the work being done. We are inspired daily by the voices, and more importantly the heart, behind those voices within our community of caring. It is our mission to provide quality resources to those impacted by congenital heart disease, to raise awareness, and to bridge the gaps of isolation caused by living with a chronic illness. As a publication we do not advocate for any specific ideology, but consider this Jenny Muscatell platform one of raised voices and personal stories shared with the intention of helping others through difficult roads. Letters to the editor are encouraged via our website and will be considered for publication in future prints. 03 THE HEART COMMUNITY COLLECTION CHD MAGAZINE

THE HEART COMMUNITY COLLECTION BEHIND THE MOVEMENT TOGETHER OUR WHY OUR MISSION THE CHD VOICE          s members of the heart    E  ach of our founders faced their CHD journey A during an era where little was known about congenital heart disease. Social media did not exist, and access to community, we understand the the World Wide Web was only beginning. Needless to say, importance of connection. It is our support was limited. The idea of the strength and mission to provide quality resources presence of a united community of voices and to those impacted by congenital experiences being shared for the common purpose of heart disease. In our store, you will helping others through their CHD battle is breathtakingly find a wide variety of reading beautiful. It is our joy to connect with others on a shared materials, from children's books to mission - we truly believe we are stronger together. memoirs and educational books to cookbooks on healthy living. Head on TEAMWORK MEET THE FOUNDERS over to our social media and event pages where you can stay up to date A nna Jaworski is an Oma, Heart Mom, podcaster, producer, author, and blogger. Anna is the Host of \"Heart to Heart on the latest news from The Heart Community Collection. with Anna\" - a podcast for the congenital heart defect (CHD) community. The podcast is an interview-style podcast where Anna talks with doctors, nurses, Heart Warriors, Heart Parents, Heart Siblings, and other members of the Maybe you or someone you love was CHD community. Anna is also the Producer of \"Bereaved But Still Me\" -- a podcast for the bereaved community, born with a CHD. We understand that \"Guerreros Del Corazon\" -- a podcast for the Spanish-speaking CHD community, and \"Heart to Heart with Nicole can be scary and want you to know and David\" -- a podcast for Adults in the CHD community BY Adults in the CHD community. You can learn more that you are not alone. about Anna by visiting www.heartsunitetheglobe.org. Our community is filled with an Jenny Muscatell is a licensed social worker, blogger, author, and photographer. She holds a Bachelor’s in Mental incredible group of givers who are Health and Human Services. With over two decades of experience in the social services field, Jenny has established passionate about joining forces to an extensive reservoir of expertise specializing in crisis intervention, health systems, and end of life care. Jenny is raise voices and spread awareness for deeply passionate about the work she does. She has been regarded as a fierce advocate. Jenny is the author of the those impacted by CHD. We are Amazon Best Selling book, “The Journey of Faith and an Open Heart,” and the mom of an HLHS thriver. She has always looking to grow our shared her faith and experiences on a variety of podcasts, social media platforms, and WCHF’s Missions in the community. If you would like to Backyard Program. Jenny’s mission is to give voice to the vulnerable, hope to the hurting, and to make way for the partner with us, please visit our unspoken to be told. To learn more visit www.jennymuscatell.com and www.muscatellministries.com website at: theheartcommunitycollection.com Amy M. Le was born in Vietnam and immigrated to the United States in 1980. The fall of Saigon propelled her and submit the contact form. family to embark on a treacherous journey to America. She lived in Seattle most of her life and worked for large corporations like Microsoft and T-Mobile. In 2017 when Amy’s mother passed, Amy quit her corporate career to Perhaps you've written a book on the write her mother’s story. “Snow in Vietnam” was her debut novel published in 2019. Amy is a Vietnam War survivor topic of CHD or manage a non-profit and a Congenital Heart Defect (CHD) warrior. Today Amy is a full-time author. She resides in Oklahoma with her organization that supports the heart husband and son. When she is not writing, Amy volunteers for a child advocacy center and serves as president of community. We want to hear from the Oklahoma City Writers Inc. Learn More at www.amy-m-le.com you! Maybe you are a jeweler, musician, motivational speaker, artist, 04 or medical expert who'd like to share your work with the CHD community. We'd love to explore a partnership with you.

A n O d e t o H e a r t P a r e n t s - Amelia Woods - An Ode to A crash course in pharmacology, Heart Parents. medical terminology, buckling car seats First, the shock Home – anxious and hopeful Lukewarm tears begin to pour Your warrior grows, you grow Angry prayers begin Never bouncing back, you were Sadness fills your shell of a body never meant to You’re given a grim, depressing You are new, appreciating every alternative minute of life; for you know it is precious A choice, they call it First, the shock You must hand them off to surgeons After, the admiration Now their heart can begin its mended journey Amelia Woods But it must stop beating, so it can Founder of Heartlikeamother.com beat again Recovery hits like a ton of bricks A badge of bravery now displayed upon their chest for life Lying unclothed, but not bare Progress, then setback Progress again, even if for a moment Pain, suffering, pride, joy, gratitude All emotions exist fresh and at once like you’ve never felt them before Simultaneously experiencing the best days of your life while living some of the worst Discharge day, highly craved and celebrated You learn the ropes The Heart Community Collection - CHD Magazine | 5

Healing Hearts By Amy M. Le | Author of the Snow Trilogy Healing Hearts Amy M. Le was born in the province of Tra Vinh, Vietnam, nine months before the fall of Saigon. She was born with an atrial septal defect, a congenital heart defect that required open-heart surgery to survive. At the time, access to medicine and proper medical care was nearly impossible, and life looked grim. “My mother was told I’d be lucky if I lived to be five years old,” Amy said. “She was desperate to find a way to save my life.” The Le family was sponsored to the United States in 1980 and a few months after their arrival into America, Amy was rushed to Seattle Children’s Hospital to receive the life-saving surgery she needed from Dr. Dale Hall, a triple board-certified surgeon whose expertise in valve repair gave Amy a new lease on life. In the operating room was also Susan Russell Hall, a medical illustrator who drew the details of the surgery and gave the drawings to Amy’s mother. Hand-drawn pictures from Amy’s surgery in 1980 by Susan Russell Hall. The Heart Community Collection - CHD Magazine | 6

Healing Hearts By Amy M. Le | Author of the Snow Trilogy After Amy’s mother, Snow, passed Amy reunited with her heart surgeon and away in 2017, Amy went on a journey medical illustrator in 2021. of self-discovery to learn about her CHD, reconnect with her Vietnamese “I wish my mother had a resource like roots, and unearth the history Healing Hearts Vietnam. Through surrounding her immigration from their work, the lives of many heart Vietnam to the United States. warriors in Vietnam can be saved,” Amy said. “When I discovered Healing Hearts Vietnam,” Amy said, “I was overjoyed. You can help children like Amy Not only does the organization work through your support of Healing tirelessly to help families in Vietnam Hearts Vietnam, whose mission is to get the life-saving cardiac surgery provide financial assistance to make needed, but the team of doctors and life-saving cardiac surgeries available volunteers are incredible.” for needy Vietnamese families. Formed in 2015 by Drs. Chad Hoyt Today, Amy is not only surviving, but and Tom Forsberg, Healing Hearts she is thriving. Amy resides in Vietnam is built on the values of love, Oklahoma with her husband, son, and equality, the value of life, and pets. She is a full-time author who stewardship. To learn more, visit dedicates her time to giving back to healingheartsvietnam.com the community. She is the co-founder of The Heart Community Collection, a cooperative of creatives who provide resources to the CHD community. WHEN I DISCOVERED HEALING HEARTS VIETNAM, I WAS OVERJOYED -Amy M. Le Amy M. Le Author of the Snow Trilogy Amy-m-le.com The Heart Community Collection - CHD Magazine | 7

THE D OVE - Thomas H. Dahlborg - The shivering is constant. The “No. No. My heart is breaking but it permafrost tearing deep into my is not broke!” I scream into the soul. nothingness. “So cold,” I think. “So dark. Why so “I am not alone! I am not!” I dark?” cry into the disquietude. The pressure of the deep makes it “Breathe. Breathe.” I feel in my impossible to catch my breath. core from this struggle in the abyss. My ears are completely blocked from the tide’s density and barely “I am not alone! I don’t have to be. I audible turbulence. don’t need to be! I don’t want to be!” The frigid ocean surrounds me on all sides now as I continue to sink I fight as the reality of submersion into the black expanse. comes to light and a lightness appears above. “My head, my chest, bursting ... they are going to burst!” I scream A light? But wait ... into the gloom. “Please God. Please. No mas!” Juxtaposed to the light above remains the mass of shadow being “Breathe. Breathe,” reverberates swallowed into an oblivion. from the remoteness as my efforts falter and a burden intensifies. And yet ... and yet, I watch as it The darkness, the coldness, the departs from me. Slowly. Ever so pressure. My body acknowledges slowly. But definitely separate from each as my cells are vised and me now. And descending deeper deserted, I descend into its depths. and deeper into the gloom. “I am afraid, God. Very afraid. The sun is high in the sky casting a Please ...” gleam over the cove. The leaves on the trees just beyond the marsh are My descent continues into exquisite with fiery reds, deep perpetuity with all of my emotional oranges, and bright yellows. The nakedness strewn into the eternal marshlands themselves almost pink darkness. as they glow in the sunlight. The Heart Community Collection - CHD Magazine | 8

THE DOVE - Thomas H. Dahlborg - The beam of light burns at my skin I squint my eyes even tighter as the and scorpions my eyes as I squint light of the sun continues to shine. to see the blue green water flowing before me. “If not a Loon ... then it must be ...” I squat in the sand and continue to I continue to breathe and squint, peer down at the black mass which and squint and breathe as finally has left my humanity and is now this flying creature comes into following its own solo journey into focus and I realize it is truly not a the Sheol of the cove depths. Loon. But rather ... “We are connected,” I hear in the ... a Dove. deepness of my Soul as I look beyond myself into the vastness of “A dove has escaped the murk and God’s creation. “We are all the depths,” I say out loud. “A dove connected. The Darkness and the is no longer alone in the dark and Light. Complex. Ever adapting. the cold. A dove is now flying into Connected.” the infinity before it. A dove is now soaring beyond its perceived limits. WE ARE ALL A dove is seeking its partner, its CONNECTED place. A dove is no longer alone.” “It is a dove. It is not a loon. It is a dove.” I scream at the top of my lungs as joy overtakes me. “A dove! It is saved, my Love! I am saved. Never to be alone again.” - Thomas H. Dahlborg But now, at this moment my Thomas H. Dahlborg darkness is no longer within me but sinking beyond as Thomas H. Dahlborg, MSHSM suddenly the surface of the President & CEO Dahlborg HealthCARING water is disrupted and a Loon Leadership Group, LLC (DHLG) Author of The Big Kid breaks through and flies into and Basketball, and From Heart to Head and Back the light of the clear blue sky. Again - A Journey Through the Healthcare System. Health-caring.org “So beautiful,” I am saying to thebigkid.org no one in particular when I realize this beautiful creature is actually not a Loon. “But it must be. What else can it be?” The Heart Community Collection - CHD Magazine | 9

HEALING HEARTS VIETNAM OPERATION HEARTBEAT Jenny Muscatell It is estimated that It is estimated that over 20,000 Vietnamese children over 20,000 are currently awaiting treatment for Congenital Heart Vietnamese Disease (CHD). Most of these children are from ethnic children are minority households who are unable to access life- saving care due to their rural locations in remote currently awaiting villages and low income status. treatment for CHD Founded in 2015 by Drs. Chad Hoyt and Tom Forsberg, Healing Hearts Vietnam is built on a foundation of love and respect for life. It exists to provide financial assistance that makes life-saving cardiac surgeries available for needy Vietnamese families. From the Mekong Delta to Hanoi, The Healing Hearts Vietnamese hospital partners, perform medical and needs-based screenings to identify children who will require surgery. THE HEART COMMUNITY COLLECTION 10 CHD MAGAZINE

HEALING HEARTS VIETNAM OPERATION HEARTBEAT Jenny M uscatell Physicians and volunteers come alongside Vietnamese partners to provide medical care to underserved regions. Such clinics have been held on the Mekong Delta and Binh Dinh Provence (Central Vietnam). Medical screening and portable cardiac ultrasound have been utilized to identify many patients in need of life-saving surgery. \"Since being involved in Healing Hearts Vietnam, I'm learning the joy of giving to others and supporting a cause that is greater than myself. The citizens of Vietnam are humble, kind, and inviting. They appreciate our help more than we'll ever know.\"Dr. Chad Hoyt For more than a decade, the Healing To date, Healing Hearts Vietnam has Hearts Vietnam founders and other worked to bridge the gap between the volunteers have worked hard to build cost of surgery and the totality of funds relationships with Vietnamese colleagues. available to the patient from social These have included Vietnamese insurance and private sources, to politicians, hospitals, physicians, and provide life saving cardiac surgery to support personnel. These trusted over 450 Vietnamese children at the relationships have provided great incredibly low cost of $750 per surgery - confidence in the surgeries being all possible because of the generous performed and the sustainability of the donors who support the mission surgery program for years to come. through giving programs like Operation Heartbeat. Dr. Forsberg and Dr. Hoyt have provided lectures and workshops on the topics of To learn more or get involved visit:​ airway management and advanced cardiac imaging procedures to the medical staff HEALINGHEARTSVIETNAM.COM members at Vietnamese partner hospitals. They have served as guest Healing Hearts Vietnam lecturers at international medical conferences in Ho Chi Minh City and Da Nang, Vietnam. The Heart Community Collection - CHD Magazine | 11

THE HEART OF THE MATTER TEACH ME YOUR WAY, LORD, THAT I MAY RELY ON YOUR FAITHFULNESS; GIVE ME AN UNDIVIDED HEART, THAT I MAY FEAR YOUR NAME. PS. 8 6:1 Staci M auney In 1964, President Lyndon B. Johnson issued the first proclamation to make February American Heart Month, and for those with congenital heart disease (CHD), American Heart Month provides an opportunity to spread awareness. This year, CHD Awareness week is celebrated from February 7–14. While I don’t have CHD, I do understand the importance of heart health. After college, I worked for an Area Agency on Aging as a monitor for the senior nutrition program, and several years later, I worked for a local nonprofit to implement nutrition and physical activity programs in cities and towns, schools, and businesses. Through these jobs, I learned about the impact nutrition has on our heart health. Not only is the heart a vital organ, but it is also (metaphorically) the center of our being and what makes us who we are. The Bible mentions the heart hundreds of times. In Biblical times, people believed the heart controlled decision making, emotions, and thought processes. THE HEART IS METAPHORICALLY THE CENTER OF OUR BEING - Staci Mauney The Heart Community Collection - CHD Magazine | 12

THE HEART OF THE MATTER TEACH ME YOUR WAY, LORD, THAT I MAY RELY ON YOUR FAITHFULNESS; GIVE ME AN UNDIVIDED HEAPRST. ,8 T6:H1 AT I MAY FEAR YOUR NAME. Staci M auney Today, we use idioms like, “Follow I know I can rely on your heart,” and “The heart wants God's strength to see what it wants,” to express our me through feelings about something. The Bible has plenty to say about the DEAR JESUS, THANK YOU FOR role of our hearts: RENEWING OUR METAPHORICAL “Take delight in the Lord, and he HEARTS TO FACE WHAT EACH will give you the desires of your DAY BRINGS. HELP US TRUST heart.” (Ps. 37:4) AND REMAIN STEADFAST IN “Turn my heart toward your statutes and not toward selfish YOU. I PRAY YOU WILL gain.” (Ps. 119:36) STRENGTHEN THE PHYSICAL “Above all else, guard your heart, HEARTS OF THOSE WITH CHD. for everything you do flows from it.” (Prov. 4:23) AMEN. “As water reflects the face, so one’s life reflects the heart.” (Prov. 27:19) “For where your treasure is, there your heart will be also.” (Matt. 6:21) “If you declare with your mouth, ‘Jesus is Lord,’ and believe in your heart that God raised him from the dead, you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you profess your faith and are saved.” (Rom. 10:9– 10) This is just a sampling of the verses Staci Mauney that refer to the heart as the place Stacimauney.com where we house our true motives and emotions. Scripture tells us that God will strengthen our hearts (our spiritual and emotional center) even while our bodies fade away: “My flesh and my heart may fail, but God is the strength of my heart and my portion forever” (Ps. 73:26). The older I get, the more relevant this becomes. No matter what physical ailments befall me, I know I can rely on God’s strength to see me through. The Heart Community Collection - CHD Magazine | 13

Coming Soon BELIEVE YOU CAN DID YOU WAKE UP TODAY NOT SURE OF YOURSELF? IF SO, TAKE A DEEP BREATH. TRUST GOD AND KNOW HE BELIEVES IN YOU SO MUCH AND WILL GUIDE YOU THROUGH YOUR JOURNEY. REMIND YOURSELF, THAT IF GOD BELIEVES IN HIS PURPOSE FOR YOU, IT IS TIME TO LOOK IN THE MIRROR AND SEE THE YOU WHO GOD INTENDS FOR YOU TO BE. BELIEVE IN WHAT YOU ARE MEANT TO DO, AND YOU WILL ACCOMPLISH IT AND BUILD A MASTERPIECE WITHIN YOUR LIFE. {IF YOU CAN’?” SAID JESUS. “EVERYTHING IS POSSIBLE FOR ONE WHO BELIEVES.} MARK 9:23 Scars Don't Change Lisa Colvil Author of Through the Beauty of Grace, I Will wonderofgraceblog.wixsite.com/wonderofgrace

I set out to find information on Miracles coping with CHD-related stress but Tom Garz in the process I found myself immersed in CHD miracle stories. Maybe that is the stress reliever in As I read the stories, I was on the this article – a good cry – tears of verge of tears - seeing the courage joy, of gratitude, of acceptance, of and determination of both the CHD relief, of self-forgiveness, and tears of hope. I hope you find this article patient and their loved ones. helpful. You are not alone. Our unforeseen miracle: Kashton’s story of battling CHD “When there is love, there are always ,” – Willa Cather Born With Half a Heart, My 'Miracle Baby' Is Now 11 Mom of 'miracle baby' urges awareness of congenital heart defects Miracle Monday: Spokane Valley woman with congenital heart disease gives birth to twins, overcomes health challenges Ella's Heart Miracle CHD By Tom Garz Despite Heart Defect, Lake Wales Mom Delivers Miracle Baby The miracle after the miracle - Ashley Ruhlig shares how she beat the odds, had a baby, and survived serious complications from her congenital heart defect. Miracle Baby Camila A Miracle of the Heart More to come in our next issue Tom Garz AUTHOR | INVENTOR BOOKS TGIDEASLLC The Heart Community Collection - CHD Magazine | 15

We asked webuildhearts.org, one of our favorite CHD organizations, to share how they are changing the game for CHD research. Thank you HeartWorks, the CHD community appreciates you! HEARTWORKS By Calla Huxtable HeartWorks was created in June 2020 to advance the product development pioneered by the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS), founded at Mayo Clinic in 2010. The Heart Community Collection - CHD Magazine | 16

HEARTWORKS A CURE IS IN THE WORKS Calla Huxtable - HeartWorks - HeartWorks has designed a first-of-its-kind platform that brings together physicians, scientists, and engineers to find and develop treatments for the most severe forms of congenital heart defects (CHD) and furthering advanced research in genetics, stem cell biology, clinical trials, and cell-based manufacturing. Our vision is that our therapies will become a cure so children and adults born with CHD will no longer have to live with CHD. We get treatments out of the lab and into clinical trials to be conducted simultaneously in collaboration with a consortium of world-class medical institutions The members of the HLHS Consortium include: Children’s Hospital Colorado, Children’s Minnesota, Children’s of Alabama, Cincinnati Children’s, The Children’s Hospital at OU Medicine, Children’s Hospital of Los Angeles, Children’s Hospital of Philadelphia, Ochsner Hospital for Children, Lurie Children's Hospital of Chicago and SickKids Hospital. Heartworks: Advancing research in genetics, stem cell biology, clinical trials, and cell-based manufacturing. The Heart Community Collection - CHD Magazine | 17

\"Our two pillar products are CardiaCord and Bioengineered Cardiac Tissue.\" HEART WORKS By Calla Huxtable Our two pillar products are CardiaCord and Bioengineered Cardiac Tissue. CardiaCord is an autologous (self) cell-based product derived from the umbilical cord that has been shown in pre-clinical settings to stimulate native heart muscle cells to grow faster and bigger. It has been tested in a Phase I clinical trial for safety and is currently being tested in a multi-center Phase IIb clinical trial. Bioengineered Cardiac Tissue produces contracting heart muscle cells that are genetically identical to the patient’s own body; a “seed” that can be planted in a failing heart to help re-build the weak muscle. Each month, we host a virtual tour of our manufacturing facility and walk through the seven-month process of creating beating heart tissue from skin cells. We hope you can join us: https://www.heartworksinc.org/lab-tours The Heart Community Collection - CHD Magazine | 18

HEARTWORKS Calla Huxtable Bioengineered Cardiac Tissue CardiaCord A CURE IS IN THE WORKS - HeartWorks - HeartWorks WEBUILDHEARTS.ORG [email protected] INSTAGRAM: @WEBUILDHEARTS FACEBOOK: @WEBUILDHEARTS LINKEDIN: HTTPS://WWW.LINKEDIN.COM/COMPANY/WEBUILDHEARTS HeartWorks Platform Video: https://vimeo.com/586464177 The Heart Community Collection - CHD Magazine | 19

I'm Sorry How You Know JENNY MUSCATELL For the mama whose heart has ached on the Thank you, God, that you will never let us go. You closed-out side of an operating room door, I'm sorry how you know. The kiss of that precious are the maker of heaven and earth. You know every little cheek - soft and blue that tells you it's time to break a heart wide open. I'm sorry how you fiber - every hair on our head, and you call us by know. When your strength is down to one last thread and you cling to any fiber of hope waiting name. Thank you, Lord, that you love us like no for hours with stirred-up guts and clenched-up fists, I'm sorry how you know. other. Thank you that there is no mountain you But did you also know on the other side of that cannot move and no waves you cannot calm. You operating door was a healer whose love is bigger than heaven and earth? Did you realize control the seas. Thank you for healing our broken when you opened the hands that held on to the thread - fingernail printed skin - that He had you hearts, for mending them up, and making them all the while? whole. I pray we always remember that with your I'm sorry how you know, but I'm thankful He knows you. life laid down, you conquered the grave. Let us always remember your love. Let us always remember you know us like no other. I pray in Jesus' name, Amen Muscatell Jenny AUTHOR OF THE JOURNEY OF FAITH AND AN OPEN HEART. CO-HOST FOR THAT'S THE #TRUTH PODCAST, CO-FOUNDER OF MUSCATELL MINISTRIES AND THE HEART COMMUNITY COLLECTION. JENNYMUSCATELL.COM 20 MUSCATELLMINISTRIES.COM

Heart Skips a Beat CARLI VALENTINE HEART SKIPS A BEAT HARDEST PART OF MOTHERHOOD SEEING Handing you over to a surgeon YOUR PRECIOUS CHILD My heart stayed right beside you Feeling so very hopeless IN PAIN as he works on what’s inside you - Carli Valentine Praying we made a good decision Longest hours of my life Stabbing feelings of worry Cut through my soul like a knife Hardest part of motherhood Seeing your precious child in pain Hoping all this will be worth it Fear falls down like rain Hope is what I hold on to It’s what is keeping me together Never felt like this before Surgery feels like forever Seconds turn to minutes Minutes turn to hours Time is irrelevant at this point God please grant the surgeon power To heal my son and fix his heart I beg of this from you Tears fall down as prayers fly up Not sure what is left to do Wait and wait and wait some more Until I hear a noise Look up anxiously at the door And then I hear his voice The surgeon starts to speak I begin to hold my breath He tells me my son has made it through Elephant gets off my chest Tears of joy flow from my eyes Rushing in to see him Dreams and possibilities start to rise Now there’s a future to believe in Carli Valentine AUTHOR OF EXTRA SPECIAL HEART & MANY MORE CARLIVALENTINE.COM The Heart Community Collection - CHD Magazine | 21



FINDING THE LEADER IN ME BECAUSE OF CHD MAKING THE TEAMMATE NEXT TO YOU LOOK BETTER THAN YOURSELF - Tori Joy Geiger - Growing up, I knew I was different There were times I from other kids. It wasn’t the fact that was center stage on I already had three major heart the court, scoring and surgeries before the age of one, but making plays, but rather that I saw life differently than there were also times my peers. I would say my mindset on when I was on the leadership fell into this category. bench. While some could argue that I’ll be honest. While growing up as a being on the bench competitive athlete, it was a meant that you were humbling experience to have to taken out of the game, watch your teammates finish a drill, I would argue that it while you watched helplessly from just gave you a new the sidelines because you had to pull and equally important yourself out of the game to catch role. your breath. I know for me at times, it made me feel weak and not strong The times I wasn’t on the court were enough, but you know what it also the greatest opportunities for me to taught me? It taught me the concept influence my teammates through my of making the teammate next to me attitude and actions. On the bench look better than myself. This was a was the perfect position to be my perspective that my volleyball coach, teammates’ biggest cheerleader and Kim, one of the most successful supporter despite the “setbacks” I volleyball coaches in the state of faced. You bet I would be the loudest Oregon, introduced to me. person cheering them on, grabbing them water, or helping them read the On our volleyball team, it was the defense on each play. That was my expectation that if you weren’t on the responsibility as a teammate. court, you better be the loudest and proudest supporting your teammates To be honest, those moments were from the sidelines. No, this saying the most character shaping and didn’t mean putting yourself down or offered an even greater ability to making yourself small. Rather, it speak into my teammates' lives and meant using your talents to better the help them be better. I have learned lives of others despite your position from my years as an athlete and now on the court. Because in the end, as a business owner that the greatest every game is a team effort. The leaders are the ones that endure same goes for life. It’s a team effort. hardship well, and help others do the same. Enduring hardship well as a Use your talents to leader doesn’t mean you are perfect better the lives of or even acting like you have it all others. together. It's being vulnerable with others about those areas in life and reaching out from what you have experienced to bless them. That’s what making your teammate next to you look better than yourself looks like. The Heart Community Collection - CHD Magazine | 23

FINDING THE LEADER IN ME BECAUSE OF CHD MAKING THE TEAMMATE NEXT TO YOU LOOK BETTER THAN YOURSELF - Tori Joy Geiger - Being a leader doesn’t mean holding Tori is a congenital heart defect some fancy title. Leadership doesn’t survivor and has undergone multiple mean you have to be the CEO or in open-heart surgeries and procedures the center of the stage. It only means throughout her life including a life- that you hold influence over someone changing visit to the ER where she in your life, and I can tell you right narrowly escaped cardiac arrest and now, that is each and every one of was defibrillated three times. Sharing you. When you look at leadership her story of resilience and lessons for through that lens, you are all leaders living victoriously, Tori is a in some fashion. As a parent, you bestselling author of the book, From hold influence over your kids. As an Vulnerable to Victorious: Turning employee, you have influence over Your Chronic Illness Into Your Victory your co-workers and even customers Story. or clients. As students at any grade level, you have influence over other Growing up, she was an avid athlete, students, your friends, and your participating in volleyball, basketball, teammates. If you really unpack it, and track in high school. She went on You have influence everywhere you to play volleyball at Corban go whether you have a million University and later joined the track followers on Instagram or you are just team at George Fox University as a showing up to work each day. high jumper. What if your CHD journey was With a heart for others affected by actually an opportunity to be a leader chronic illnesses such as CHD, Tori like this? Today, society may look at started a lifestyle blog where she living with a chronic illness as a shares lifestyle and chronic illness weakness or even like you are tips. Part of her mission is to have a “benched” in your capabilities, but I “heart that beats for others.” Tori disagree. I believe CHD has given does this through her blog and you the opportunity to make your chronic illness coaching program teammates next to you look better where she coaches CHD warriors on than yourself. Maybe that is being a creating a game plan to thrive with listening ear of empathy, showing CHD and use their experiences for grace to someone, or pushing impact and purpose. through a hard deadline with a colleague. The grit, perseverance, AUTHOR OF: and faith that CHD teaches you FROM VULNERABLE equips you even better in those times TO VICTORIOUS that require you to display grit for LEARN MORE: others. You make your teammate next to you look better than yourself when TORIJOYGEIGER.COM you use your CHD experiences in such a way to better the lives of others. Let's use our Tori Joy Gieger CHD stories to be the best teammates we can be! The Heart Community Collection - CHD Magazine | 24

CHABROCA URTDERIEHere are some of our favorites CHARCUTERIE BOARD AMY M. LE

Charcuterie Board Charcuterie Charcuterie (SHärˈ ko͞ odərē) comes Fruits (dried and fresh): from the French word for delicatessen specializing in cured champagne mangoes, kiwis, meats, particularly pork, and raspberries, blueberries, blackberries, translates to “pork butcher shop.” A strawberries, pineapples, charcutier is a person who prepares persimmons, jackfruit, pears, the cured meats that end up on the mangosteens, pomegranates, board. The wonderful thing about apricots, figs, papayas, plums, sugar charcuterie is it is great no matter the apples, lychees, grapes season or occasion. What you put on your board is limited only by your Dips and Spreads: imagination. Essentials for classic charcuterie boards are meats, hummus, garlic herb cream cheese, cheeses, fruits and veggies, nuts, blackberry jam, cranberry orange spreads, and crackers. Nowadays, relish, spinach and artichoke dip, there are themed charcuteries such pesto, avocado, orange marmalade, as breakfast, hot chocolate, holiday, dessert, and cultural boards. The Deliciousbruschetta, salmon dip possibilities are endless. Ingredients: Cheeses: soft cheeses: triple cream brie, camembert, Couer de Chevre, Neufchatel hard cheese: BellaVitano merlot, smoked gouda, cheddar, gruyere, manchego Meats: Peppered salami, pastrami, smoked salmon, pâté de foie gras, sausage Nuts: Cashews, macadamia, pistachios The Heart Community Collection - CHD Magazine | 26

Charcuterie Board Crackers/Bread: Kii Naturals Artisan Crisps, Triscuit crackers, Chicken in a Biskit, sourdough bread, French baguettes Pickled: Choose colors and layouts that match your theme. Decorative spreads add that special touch to any occasion. green tomatoes, okra, peppers, olives, beets, jalapeno relish Candy: gummy bears, chocolate peanut butter cups, dark chocolates Other: mini pancakes topped with crème Fraiche and caviar The Heart Community Collection - CHD Magazine | 27

Charcuterie Board SPRING – 2022 More Recipes \"You can find more recipes from Amy M. Le in her book, Snow's Kitchen. This is the final book in the \"Snow\" trilogy and is written in the voice of Snow's daughter, Dolly. This Young Adult novella is a coming of age story that turns a young refugee girl's life upside down as she journeys toward independence. Dolly was thirteen years old when her family moved from Seattle to Orange County, California. Lost between two cultures, she did not feel she was Vietnamese or American. In her search to find a community of her own, Dolly lost her identity, her voice, and her independence. It was through the experience of first love, the discovery of new wave music, the appreciation of traditional foods, and the survival of tough love that she understood identity was rooted in self-love and self-acceptance. Amy M. Le, award-winning author of \"Snow in Vietnam\" and \"Snow in Seattle,\" gives readers a glimpse into the Vietnamese youth culture of the 1990s as they carved their own niche in America following resettlement from the Vietnam War. Diverging viewpoints from old-fashioned parents living in a progressive America brought conflict and cultural divide within familial generations. Food and music were the two elements that threaded the cultural and societal gaps. Join us in Snow's Kitchen as we transition from the novella to the cookbook where pho, egg rolls, crepes, and other favorite foods from the Snow trilogy brings us together at the table to break bread and discover commonalities between different worlds. Similar to Fannie Flagg's \"Fried Green Tomatoes at the Whistle Stop Cafe,\" Jill Conner Browne's \"Sweet Potato Queens\" novels, and Patricia Cornwell's \"Kay Scarpetta\" series, Snow's Kitchen is chock-full of recipes and plot twists. From the Kitchen of Amy M. Le Amy-m-le.com The Heart Community Collection - CHD Magazine | 28

11 THINGS I WISH MY CHILD'S DOCTOR KNEW - Anna Jaworski - These Things I Wish Please don’t ask me to leave my child’s side. I can’t eat or rest knowing something may happen while my child is outside of the safety of my arms. I need to be there. I need to be part of my child’s care team. I am there everyday. I am used to being in charge. At home, there are no nurses or doctors telling me what to do. Help me be a better part of the team. I am not stupid. I may not understand the words you use, but I am willing to learn. Teach me. Help me understand what you’re talking about. What could be more important for me to know? I am not overprotective. I am a parent. I have seen my child struggle to survive. God gave me this child to protect and love. If I am doing something excessive, then kindly, gently tell me it’s not necessary. But do not tell me I am overprotective — these words are fighting words. I don’t know if you believe in God or not, but I hope you do. While my child is under the care of your hands, I am in the waiting room asking for God to guide your hands and your mind so you can save my child. I pray for you. I FOPRRAYYOU I have seen my child struggle to survive -Anna Jaworski- The Heart Community Collection - CHD Magazine | 29

11 THINGS I W I S H M Y C H I L D ' S D O C T O R K N E W - Anna Ja worski - Caring for a child with a chronic illness isn’t If it is God’s will to take my child too soon, don’t what I bargained for when I planned my be afraid to let me see you cry. Your tears will family. This is the hardest thing I’ve ever help cleanse my wounded heart. I need to had to face. I am not only my child’s know you care. parent; I have many roles, and wear many hats. Please understand this problem has Anna Jaworski touched every facet of my life and is challenging me in ways you cannot see. Author of The Heart of a Father, The Heart of a Mother, and soon to be released, The Heart of I am grieving. This is NOT what I planned. a Heart Warrior. She is the Executive Producer My home is waiting for my child. Clothes of Heart to Heart with Anna, and the Bereaved hang in the closet; toys and books are but Still Me Podcast shows. Anna is also the waiting to serve their purpose. Please be CEO of Hearts Unite the Globe and Co-Founder kind while I try to grasp what all of this of The Heart Community Collection. Printed by means, and while I mourn the life my child Permission of Baby Hearts Press. should have had. Heartsunitetheglobe.org I trust you. I have handed over the most BabyHeartsPress.com important, most helpless person in my life to your care. I know you aren’t God, but I am hoping that through you, God will work a miracle. I have hope. I don’t care about statistics. There are not 100 children here at the same time having the same operation. There is one, and that child is mine. Don’t tell me that you don’t think my child will make it. Tell me that you’ll do everything in your power to help my child survive. I know you don’t have a crystal ball. When I ask you for my child’s prognosis, I am asking for reassurance. Every parent wants to know they’ll be a grandparent someday. Don’t get irritated when I ask about the future. Tell me I’m doing a good job today. TELL ME I'M DOING A GOOD JOB TODAY The Heart Community Collection - CHD Magazine | 30

STEPPING OUTSIDE THE DIAGNOSIS By Chrissy L. Whitten Devastation hits hard. Your reality tries to squeeze out your dreams of hope and a “normal” future. The diagnosis comes with endless unknowns where only time will reveal how your story will unfold on a moment-to-moment basis. Borrowed time becomes a need and want for many heart warriors on the daily. Will a first breath - be his or her last? Can a sneeze cause a stroke or heart attack? How does pooping or not pooping change the game? Each heart warrior is different. Each has a journey that will change every life their story touches directly and indirectly. This raises the question, \"How can you make the most of their heart battles?\" You have the opportunity to own your moments and make space for creativity and lasting memories to share. None of us are guaranteed any amount of time, but we have the ability to make the most of what time we do have right now. YOU HAVE THE OPPORTUNITY TO OWN YOUR MOMENTS. - Chrissy L. Whitten The Heart Community Collection - CHD Magazine | 31

STEPPING OUTSIDE THE DIAGNOISIS - Chrissy L. Whitten - An Invitation I’m inviting you to think beyond diagnosis, attitude, disappointments, bitterness, and the loss of normalcy, and rise to a new reality where beauty is created in the fires within your journey. You can make memories and capture them through pictures and creative outlets. You don’t have to rest in the sadness, diagnosis, frustrations, and limited timelines. On the next page you will find a list of ways to get you started. The universe is the limit! Challenge yourself to make the most of what you have, and stray away from what you are not getting. You get the chance to own the journey and add life and joy into each moment, when darkness tries to hide destiny. UNTIVHEERSE IS THE LIMIT -Chrissy L. Whitten Lilian Grace MAKE THE MOST OF WHAT YOU HAVE The Heart Community Collection - CHD Magazine | 32

S T E P P I N G O U T S I D E T H E D I A G N O S I S - Chrissy L. Whitten - 1.Monthly birthday celebrations. Pick a theme, color, or character for each special milestone. We had three monthly birthday celebrations with our first daughter, Lilian Grace, who lived 103 glorious days. 2.Holidays. Pick as many holidays as you’d like to celebrate. A holiday photo shoot helps create a calendar to share. People want to feel like they have a part, especially when limited or no visitation is on the table. You can have them gather leftover Valentine’s, 4th of July, Thanksgiving, Christmas or other holiday decorations to contribute. 3. Character days/weeks. Watch shows or movies; read books; or research on the internet to create dress-up sessions like your favorite characters, sing songs while dancing to the music, or play games they’d play. 4.Firsts. Make believe time. Demonstrate his or her first dance, karaoke, mustache, motorcycle ride, driving a car (on someone’s lap), movie, book, race, sport, etc. 5.Gather special items from your family and friends. Document your child getting to use or play with the items to create connections for them and your child. These suggestions are meant to inspire you to make the most of your journey. May God guide, protect, and direct you through the good, bad, and beautiful days set before you. Don’t give up. You have been chosen to help your heart warrior shine bright while inspiring those who need it. Be brave and enlighten the world from your view. Chrissy L. Whitten Author of, The Fight Learn More: ChrissyLWhitten.com The Heart Community Collection - CHD Magazine | 33

DALE'S HEART - Amy M. Le - Dale's Heart “We are inspired by the simple things often overlooked in our busy lives and strive to capture the spirit of a scene inviting your heart and imagination to wander into the painting.” −Susan Russell Hall and Terry Rishel The heart world is a collective of people around the globe whose lives have been affected by CHD. They include heart parents and siblings, grandparents and extended families, and of course heart warriors and the team of medical professionals who dedicate their lives to helping everyone survive these scary, uncertain times. The heart community doesn’t stop there because it also comprises the people whose hearts have been vibrated to take action to support the CHD world in any way they can. Meet Susan Russell Hall and Terry Rishel, two creatives with a passion for photography, encaustics, and paint. These two artists teamed up to breathe life into the florals, parks, and abstracts they create, capturing the fragility, exquisiteness, and beauty of nature through encaustic wax layers, patina, and oil paints. Susan Russell Hall and Terry Rishel at their studio. WE ARE INSPIRED BSIYMTPHLEE THINGS - Susan Hall & Terry Rishel The Heart Community Collection - CHD Magazine | 34

DALE'S HEART - Amy M . Le - Susan’s main focus has been Hand-drawn images of Amy M. Le’s heart encaustics, the ancient art of by Susan Russell Hall in August 1980. combining colored pigments with hot wax. She began in 1979 as a medical illustrator at Seattle Children's Hospital and later, Mary Bridge Children’s Hospital. Over her 27-year career as a medical illustrator, Susan created more than 6500 individual heart drawings while observing open-heart surgeries in the operating rooms. These intricate works of art were created by using charcoal, graphite, and colored pencil. It was at Seattle Children’s Hospital that Susan met her husband, Dr. Dale Hall. Both Susan and Dale were part of the heart community who saved the life of Amy M. Le, co- founder of The Heart Community Collection. Susan stood in that operating room and drew four pictures which she gave to Amy’s mother, Snow, as mementos. Forty-one years later, Amy was able to reunite with Susan and Dale to personally thank her heroes for saving her life. SUSAN STOOD IN Susan knew she wanted to be an artist THE OPERATING since she was five years old. Over the years, she explored other mediums, ROOM AND such as acrylic and oil painting, and DREW FOUR eventually pyrographs - the actual art PICTURES of painting with fire. It is the wax workings of encaustics that truly fueled her passion and brought her to collaborate with renowned photographer, Terry Rishel. The Heart Community Collection - CHD Magazine | 35

Terry's photography began in 1980, shooting abstracts in nature, and soon progressed to medium and large format cameras - photographing commercial, architecture, nature, weddings, etc. He later opened a photography studio with friends, and over the years, Terry received multiple photographic awards with noted companies such as Nikon, Polaroid, Hasselblad, Illford, and many more. From 1991-2009, Terry became Dale Chihuly's head photographer, as well as studio manager for Chihuly Studio One (TS-1). Traveling with Chihuly for many years, he photographed over fifty fine art books, as well as hundreds of thousands of photos from around the world. With the onset of digital photography and his deep interest in florals, Terry’s work continued to evolve in collaboration with International Encaustic Artists nominee, Susan Russell Hall. In 2020, Susan and Terry began working on an art piece to honor Dr. Dale Hall, a triple-board certified surgeon renowned for his skill in valve repairs, who saved countless lives and is loved by all who know him. TRIPLE-BOARD CERTIFIED ... LOVED BY ALL WHO KNOW HIM The Heart Community Collection - CHD Magazine | 36

DALE'S HEART - Amy M. Le - The painting, Dale’s Heart, is encaustic and was finished in January 2022. To pay tribute to all the caregivers, patients, and families touched by CHD, Susan and Terry have made available for purchase prints of Dale’s Heart with all profits going to a nonprofit organization whose mission is to serve the underserved. As a remembrance to Amy’s mother, Snow, who journeyed from Vietnam to the US in 1979 to save her heart warrior’s life, Susan and Terry will be supporting Healing Hearts Vietnam. Healing Hearts Vietnam is a non-profit organization formed in 2015 by Drs. Chad Hoyt and Tom Forsberg, whose mission is to provide financial assistance to make life- saving cardiac surgeries available for needy Vietnamese families. www.healingheartsvietnam As separate artists, Susan and Terry both have a curious nature. To continue this journey with them, visit www.russellrischel.com. Both of them would love to consult on large public and private art projects. The 20” x 24” prints of Dale’s Heart are $95 each with all profits supporting Healing Hearts Vietnam. Please contact Susan and Terry via email with your inquiry at [email protected] and [email protected]. Thank you for supporting the CHD community. www.russellrischel.com Amy M. Le Amy-M-Le.com The Heart Community Collection - CHD Magazine | 37

DALE'S HEART AN ART PIECE DESIGNED TO HONOR DR. DALE HALL, A TRIPLE-BOARD CERTIFIED SURGEON RENOWNED FOR HIS SKILL IN VALVE REPAIRS, WHO SAVED COUNTLESS LIVES AND IS LOVED BY ALL WHO KNOW HIM. CREATED BY SUSAN RUSSELL HALL AND TERRY RISHEL

BETHANY KEIME HEARTCHARGED BETHANY KEIME \"ONCE UPON A TIME WE WERE AVERAGE HIGH-SCHOOL GIRLS. THEN WE WERE DIAGNOSED WITH HYPERTROPHIC CARDIOMYOPATHY (HCM), WHICH IS BETTER THAN NOT BEING DIAGNOSED BUT NOT AS GOOD AS NOT HAVING IT. WE WERE EXTREMELY ATHLETIC AND HCM IS THE #1 KILLER OF STUDENT ATHLETES. IT IS ASYMPTOMATIC SO IT MOST OFTEN KILLS WITHOUT WARNING. BUT WE WERE SCREENED AND FOUND OUT WE HAD IT.\" COVER STORY| HEARTCHARGED

HEARTCHARGED - Bethany Keime - The Wait The wait. It’s the wait that will do you in. The not-knowing so there’s no- doing, only-guessing wait. It’s like a dam. Bringing everything to a halt. Allowing no progress, building up the pressure, making you wonder how long it will hold. My wait started January 29, 2018, and lasted six weeks. Six long weeks like a dam, building up pressure, making me wonder how long I could hold on, not knowing, not doing, only guessing. My brain started playing out scenarios on a screen I watched with my mind’s eye. I watched ones that made me feel hopeful, ones that made me feel despondent, ones that made me ready to fight, ones that made me ready for bed, and even the one that made me ready to never feel again. Then the wait was over. Time for the reveal. I would know my fate, see my new reality. But before I reveal what happened next, let me reveal what happened before. Bethany Keimi of HeartCharged BEFORE I REVEAL HAWPHPEANTED NEXT - Bethany Keimi - The Heart Community Collection - CHD Magazine | 40

H E A R T C H A R G E D - Bethany Keimi - I was the first girl but seventh child in my family. One older brother danced and whisked me away into that world before I was even walking. He’d point my feet, stretch my legs, and tell me stories of the great ballets. Before I went to regular school, I went to dance school. When I went to regular school, I went to regular schools with dance programs, so I would dance during my school day and after my school day. I lived my life in leotards preparing to take to the stage. At the very beginning of my last year of high school, I auditioned for a pre- professional program with an acclaimed ballet company and was accepted. I would dance even more preparing to take to the stage. Or would I? Seventeen years of pointing my toes and stretching my legs and living in leotards. And all of a sudden, I had to wonder, would I? My aunt was diagnosed with a genetic heart condition. She told my mother to have us screened. We were exceptionally active children with no symptoms. Still my mother got an appointment with a pediatric cardiologist, a hard-to-get appointment six months from when she called. She called just about six months before I entered the pre-professional program. The Cardiologist said The cardiologist said hypertrophic hypertrophic cardiomyopathy. I said please let me cardiomyopathy. I dance. She said wear the Holter to class. said please let me I wore that Holter of yesteryear, looking dance. like I stuffed a CD-player down the leotard I lived in, wires popping out everywhere. I danced. She read the report and said I could continue. I did. The Heart Community Collection - CHD Magazine | 41

HEART CHARGED - Bethany Keime- I went to college for dance, occasionally But then I had the surgery, and the bandages wearing a Holter, always on medications, were on, and the surgeon said I’d have to wait biannually having check-ups. Then one six weeks for them to come off. He also said day, just at home, I passed out. Then they didn’t realize how small I was and had to another day, just at home, I passed out. play around to get the device to fit. That news Then at my check-up, the doctor said and the long wait gave my brain plenty of time implantable defibrillator. I said after I to conjecture and concoct all manner of ghastly dance the Spring show? The doctor said outcomes for how I would look. next week. So January 29, 2018, I went into surgery for an S-ICD (subcutaneous And now we are at the day of reckoning, the implantable cardioverter defibrillator). I day the last bandage comes off. I stood in front was 5-feet tall, weighed well under 100 of the mirror. The girl, who worried about what pounds, and lived my life in leotards. If I to eat and how to hide a pimple, would see her ate a big dinner or got a pimple, it was on new reality with a device stuffed under her skin. display. And when I saw it, I smiled, put on my leotard, and danced. Now the surgeon would implant right under my skin a device over 3-1⁄4” by 2-1⁄2” by 1⁄2”. Remember, I’m only 60” tall and 14” across there. I didn’t hesitate to get the device. My younger sister got an implanted defibrillator at a younger age, and it had already saved her life from sudden cardiac death. I was actually relieved to receive my own safety net. Mine would be a different type than hers though because I had been allowed, and would continue to be allowed, to be more active. My sister had to stop dance the day of her diagnosis. Hers was hidden behind her breast. They said mine would be under my armpit. With such a short wait until surgery, I couldn’t even think much about it. WHEN I SAW IT , I SMILED, PUT ON MY LEOTARD, AND DANCED. The Heart Community Collection - CHD Magazine | 42

H E A R T C H A R G E D - Bethany Keime - After accepting myself, I knew I needed to do more. I wanted other people to know if they needed treatments, accept them if they did, and accept themselves along the way. As I thought that thought, I got a message through Instagram from another small, athletic, 20-something girl who was told she needed a defibrillator. She was refusing it because she couldn’t imagine what it would look like when her bandages fell off. So I showed her on me; she got the life-saving device. I knew what to do next. I set up @heartcharged on Instagram, setting out to show the world this type of bionic is its own type of beautiful. I post pictures proudly. I create clothing showing my defibrillator which I wear when clamoring for legislation, meeting other heart warriors, or donating care packages. I also dream of being on stage again, bionic bulge and all, surrounded by other warriors, flaunting our perfectly imperfect bodies. Then the idea of young people with heart conditions will come a little further out of obscurity. The idea of beauty with bulges or scars will be a little more understood. The dollars for research and answers will be a lot more demanded. Want to join me? Follow @heartcharged. Let’s do this. getheartcharged.org Bethany Keime The Heart Community Collection - CHD Magazine | 43

While the world has CHD Tablet Talk experienced the life of quarantine due to the - Faith Brackett - Covid-19 pandemic, this is unfortunately not a Behind the Movement new struggle for those who live with chronic and According to the CDC, about 40,000 children serious health conditions, are born each year in the US with a and sadly, it does congenital heart defect. About 25% of those complicate it further. infants will have a critical CHD that will require surgery or other invasive procedures. Some conditions are extremely complex resulting in extensive hospital stays. While the world has experienced the life of quarantine due to the Covid-19 pandemic, this is unfortunately not a new struggle for those who live with chronic and serious health conditions, and sadly, it does complicate it further. Children are often admitted to specialty hospitals that may be located hours or even several states away from home. Older children often have phones that allow them to stay in touch with friends and family, as well as play games on a hand held device, however, younger children most likely do not have these resources. They would benefit from the use of a tablet to stay connected, and read or play games from the confines of their bed. This is why Faith created Tablet Talk. The Heart Community Collection - CHD Magazine | 44

- CHD Tablet Talk - The History Sponsorship Faith was born with a rare congenital Sponsor a child in full for a one time heart defect known as HLHS. She has had gift of $40 OR donate any amount to a total of 8 major open-heart surgeries. partner with others. She is a fierce advocate for CHD and serves as the social media manager for Conquering CHD-Ma, sits on the young adult board for the Children's Heart Foundation, and is a spokeswoman for the American Heart Association. She is no stranger to the challenges that a lengthy hospital stay can pose, which is one of the many reasons why she created Tablet Talk. The Mission To keep children with complex CHD connected and engaged while experiencing lengthy stays in the hospital. CHD Tablet Talk has helped children both nationally and internationally. How They Operate Connection is everyting. We connect with child-life specialists, social workers, or nonprofit organizations Faith Brackett to identify children in need. Through direct sponsorship/fundraising, we work www.chdtablettalk.com to fulfill units with devices that can be assigned to a patient during their www.faithbrackett.com hospital stay, or in certain circumstances, given to the child indefinitely.​ The Heart Community Collection - CHD Magazine | 45

The Cry of a Heart Warrior's Mother - Daphne Davis-Patrick - Jehovah help me, I am a mother & grandmother Of two heart warriors. You lent these children to me. At times I have almost lost my sanity. The road was not an easy one But in you, all my hope has been found. Oh Father, guide me! Mold me! Help me! I will be lost without thee! Our son is spending eternity with you. JOLIE'S PACEMAKER CHECK We are so grateful for the few months that we shared. We will never ever forget him. His memory lives forever in our hearts. Our precious little girl is here with us. I pray for all other heart warriors and their She is but a mere child, and the world looms families. before her. Give them grace and strength Help us to prepare her for life here on earth. to walk this tumultuous journey. Guard her against the pressure of the world. Let there be joy amid uncertainty We thank you for allowing us this great As she grows from child, to teen, and then responsibility. adulthood, Let her be proud of her battle scars. We thank you for Don’t let her be crushed by peer pressure. allowing us this great Grant the confidence and peace as she traverses life. responsibility Let her submit her little broken heart to you wholeheartedly. Daphne Davis-Pastrick AUTHOR OF JOVEL AND JOLIE'S HEARTITUDE JOURNEY The Heart Community Collection - CHD Magazine | 46

HEART TO HEART | ASK ANNA THCC Interviews Anna Jaworski - Host of Heart to Heart with Anna Heart to Heart with Anna THCC: You're so awesome. I can't even begin to think about how to event start a quest like that. What did you do? THCC: In our last interview we learned Anna: I looked through my LinkedIn that you now have over 300 recorded connections and reached out to a episodes of “Heart to Heart with couple of doctors who I thought might Anna.” It’s obvious you have formed a be able to help. Amy had also shared lot of connections. Have there been some drawings of her heart with me times you’ve been able to use this that looked unique — not copied out of platform to connect other people? a book. I put those drawings on LinkedIn hoping that someone would Anna: I’ve been so blessed to have recognize the artists’ work - nothing. people come in my life, and some of the connections formed have made my I decided to take a different approach. heart sing. On the same day I “met” I turned to Google. I found an article you, Jenny, I met another author — about a pair of sisters who were doing Amy M. Le. During our chat, she and I a fundraiser for the a doctor I believed really hit it off. She told me how she to be him. I was so hopeful. I sent the had been searching and searching for sisters a letter explaining the situation the doctor who performed the heart and the answer I received was indeed, surgery she had when she was a little hopeful! girl. It had been hard because she didn't know his first name. That is all THCC: Oh my gosh, you have me on she needed to say. I couldn't help the edge of my seat. What happened myself. I just knew I had to find him. I next? wanted to bring them together. Anna: They agreed to pass my email along to the doctor and felt certain that if he was the doctor who performed the surgery, he would definitely be in touch. The Heart Community Collection - CHD Magazine | 47

HEART TO HEART | ASK ANNA THCC Interviews Anna Jaworski - Host of Heart to Heart with Anna THCC: I can't imagine the wait. Anna: I was so excited, especially when I when the time is heard back and learned it was HIM! It was right, it will so hard not to tell Amy, but I wanted to happen. surprise her. I set up an episode recording and told Amy I was having her back on Heart to Heart with Anna my show to talk more about her book. Of course, when she signed on, she was met THCC: Have you had episodes similar to with Susan Hall, the surgeon's wife who this over the years? was also the artist who provided the very illustrations that were the key to finding Anna: I once did a really amazing program Amy's surgeon. with Julia Mayfield about her heart condition, Ivemark Syndrome. She really THCC: That must have been an incredible wanted to meet other people with the interview. I am guessing there were lots same condition. After the show aired, she of tears and lots of joy. started a Facebook group for people with Ivemark Syndrome and met all kinds of Anna: The interview was a complete people. Later, she came back on my blessing. I am totally prone to crying with program along with the grandson of the my guests. I laugh a lot with them, but we doctor who coined the name ‘Ivemark also cry together. As with so many things Syndrome.’ That was also a pretty in life, when the time is right, it will amazing episode! happen. I was not alone in my quest to reunite Amy with her surgeon. Her THCC: You really have a heart for people husband was also hard at work on the and have formed a lot of connections! same project. Thanks to him, Amy was able to meet her surgeon, even before we Anna: Connections are everywhere. One recorded the reunion podcast. The whole time, a Woman named Esther, who was experience was a blessing. We had the from Africa, found me while searching chance to be part of an amazing journey online for help for her son, Elvis. She between Amy, her surgeon, and her wrote me a letter asking for my help. She surgeon’s wife, the medical illustrator, sent me her son’s medical records and Susan. told me that her son The Heart Community Collection - CHD Magazine | 48

HEART TO HEART | ASK ANNA THCC Interviews Anna Jaworski - Host of Heart to Heart with Anna would die without life-saving surgery but THCC: You are going to make me cry. as a single mom in Africa, she didn’t have When you think back about starting this the means to get her son the help he podcast, did you ever think in a million needed. years something like this would happen? Thanks to my podcast, I was in touch with Anna: If I never do another good deed with two gentlemen from Africa — Fareed my podcast, it makes my heart sing to Matthews (Brave Little Hearts South know that I held a small role in saving this Africa) and Peter Mbogo Kamau (Take boy's life. Heart Association Project) who had started their own nonprofit organizations THCC: You certainly have a lot of wisdom to help the children of Africa. and experience. What advice do you have for someone just getting started in the To my delight, they both wanted to help advocacy world? but it was Fareed Matthews who really took ownership of the project. Anna: The best advocacy in the world revolves around stories. Don’t be afraid to I wrote about this experience on my blog. share your story. Your story has the ability (read HERE) to change the world. Surrounding yourself After a lot of hard teamwork, Elvis and with others who want to make a difference Esther were flown to Dallas and Elvis in the world and want to help you tell your received the life-saving surgery he so story will be rewarding and has the desperately needed. opportunity to change your life. Don’t be afraid to take a break now and then. THCC: Anna! You were part of saving that Advocacy work can be draining. Do things boy's life! You could have tossed that that help you stay motivated and enjoying letter aside, thinking it was a scam. You the work, and don’t forget, your quality of didn't. Did you ever get to meet them? life matters, too. Anna: I did! I drove to Dallas to meet them THCC & Anna both. Elvis went from being a very sickly child who couldn’t even go to school, to a Heart to Heart with Anna healthy teenager who went to high school with his cousins. Join us in our next issue as we hear more from Anna Jaworski from Heart to Heart with Anna. Do you have questions for Anna? Submit them on our website f o r o u r n e x t i n t e r v i e w ! Heartsunitetheglobe.org BabyHeartsPress.com The Heart Community Collection - CHD Magazine | 49

W E A R P U R P L E - Victoria Scoggins - It’s almost time for Wear Purple for CHD This is true for a lot of heart warriors. Day! Victoria went on to say, “When deciding on a color for this event… I made the Each year, during the month of February, decision to make it purple.” we wear red to show our support for those affected by Heart Disease. Victoria Scoggins So this February 11, 2022, let’s wear - Heart Warrior, recognized that while there PURPLE to honor those affected by CHD. were a number of campaigns to raise Join us on Facebook awareness for acquired heart disease, few https://fb.me/e/1fUm9B2zG. existed which focused on raising awareness for CHD. The event is free and we encourage everyone to post pictures, stories and Every 1 in 100 babies are born with a CHD, share the event. Together we can paint making it the number one killer of children under the age of one. This is why in 2014, Victoria Scogginsour walls purple for CHD. along with her mother, Rita, Victoria Scoggins created, Wear Purple for CHD Day, a nationwide event that has grown each year. Why purple? Victoria answers this question as a guest on the Heart to Heart with Anna Radio Show. “When I was little, my lips, fingertips and skin tone were purple - maybe I love purple because it has always been a part of me. I was purple because of a Congenital Heart Defect that was not diagnosed until I was one month old. I live with Tricuspid Atresia, Ventricular Septal Defect, Atrial Septal Defect and Co-arc of the Aorta. The mixing of my red and blue blood made my skin look purple.” Join the event HERE The Heart Community Collection - CHD Magazine | 50


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