Chronic Joy Ambassador Initiative is a partnership of hope recognizing individuals or organizations who exemplify one or more of our ministry foundations:
It is an opportunity for individuals or organizations to donate their skills, gifts or talents to further the work of the ministry.
A PARTNERSHIP OF COMMUNITY
Our Ambassadors will receive a certificate recognizing their vital place in this ministry, a story of introduction shared through social media (unless they decline), and our sincere gratitude and appreciation.
Chronic Joy Ambassador Initiative is a partnership of hope, purpose and worth. A partnership between artisan, donor and Chronic Joy Ministry. A partnership of generosity and joy. And it is the vital and remarkable partnership of community.
To become a Chronic Joy Ambassador, please contact us.
She stood on the threshold wearing a red dress, her chopped hair topped with a big chiffon bow customary for little Russian girls. Holding the hand of the orphanage director, she looked across the room where I sat on a red couch in front of a wall of windows covered with sheer white drapes. The sun poured in, warming my back. The woman with straight gray hair pulled back in a bun and wearing a long white clinic coat, bent down and whispered in the little girl’s ear while pointing at me. A smile spread across that young face. Then I heard the one word I’d been hoping, praying and waiting years to hear.
She ran across the room, arms spread wide like a bird in flight. We embraced and I pulled her onto my lap. Looking me straight in my eyes, she uttered some Russian words I didn’t quite understand. Our translator helped.
“I’ve been waiting for you for so long!”
I smiled wide and responded, “I’ve been waiting for you for so long too!”
Her name was Alla back then. We gave her a new name full of meaning for all of us that day—Anna, from the Hebrew Hannah, which means “God has favored me”, or “grace”, or “favor.”
How ever you translate “Anna”, she is my daughter—our daughter—the first of three Russian children God graced us with when my husband and I found we couldn’t conceive. That day in September, 1997, we witnessed God’s way of binding up the brokenhearted. God has His ways of gracing with His perfect plans we can’t conceive.
As it is written:
“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” I Corinthians 2:9
As I marveled at Anna sitting on my lap—my new daughter—I was struck by how small and thin she was at nearly six years old. Gray circles underscored her brown eyes. Black stains made her teeth appear rotten. Still, she was my daughter, my beautiful Anna. We would give her the life she would never know inside an orphanage. My heart was full of hope not only for her but for myself, my husband, all of us.
Three months after returning to the States, I began noticing learning problems. Anna kept getting lost in our house, a two-story colonial, approximately 2,400 square feet. She couldn’t remember how to find our bedroom at night, straight down the hall from her own. I’d find her downstairs wandering, screaming and trying to find us. A year later, she was still struggling. I sought professional help.
Neuropsychological testing revealed significant short-term memory impairments, visual-spatial impairments and a cognitive processing speed in the 1st percentile, meaning that 99 percent of children her age could process information faster than Anna. The worst finding of all was her IQ score of 70 designating her as intellectually disabled. I stared in shock at the numbers—all the numbers. I knew what they meant, clinical psychologist that I was. Our beautiful Anna would not develop like her peers. Our beautiful gift of God’s grace would probably never grow to be an independent adult.
Over the next year and more testing, we discovered our other two children also had a myriad of disabilities, most likely stemming from fetal alcohol exposure. Suddenly, life as my husband and I had hoped became something far different.
Our days have been filled with therapies and specialists—eleven in all—over the course of twenty years. Medications and surgeries all dealt with problems no one could see. Family and friends found us difficult to comprehend. Our kids are attractive with no hint of visible disability. When one has Down’s syndrome, for example, most people can tell and adjust their expectations. They give grace. Not so with people who have invisible, significant challenges. Judged by appearance, people too seldom considering how the invisibly, chronically ill and disabled struggle within—how they try to fit in, but can’t. Like my daughter and two sons, I have become one of the invisible, chronically ill.
Though I had tried as best I could in those hard days of early parenting to lean on the Lord, I became worn thin by loss and by life. Three months after adopting our first two, I experienced my first full-blown bout of clinical depression.
One January morning, I slid to the floor in front of the dishwasher I had started even though empty. My heart hurt. I could feel it pounding in my chest. My brain hurt. I could feel it pounding against my skull. I don’t know whether I felt sad or just felt nothing at all. All I know is I couldn’t get up and get through another day. I had reached the end of my coping ability.
Todd came down from our bedroom and found me in front of the dishwasher, sitting on the floor, staring straight ahead. I didn’t even raise my head.
“What’s wrong?” he inquired as he came close.
“I’m depressed.” That’s all I said. I felt like saying more might deplete me further, if that were possible.
“Well, you’ll be ok,” he encouraged. “Things will get better.”
“No, they won’t. I’m seriously depressed. I need a doctor. Right now. I need medication.”
I was adamant. I was seriously sick. I could hardly move.
Sitting on the edge of the chair in my doctor’s office, I listed my symptoms:
- Significant sadness, tearfulness.
- Irritability and frustration over small things that usually didn’t bother me.
- Loss of pleasure/interest in things I once loved.
- Extreme fatigue and lack of energy. Even the smallest tasks required extra effort.
- Anxiety, agitation.
- Feelings of guilt, self-blame.
- Trouble thinking, concentrating, making decisions, remembering things.
- Frequent thoughts of death and suicidal thoughts (but no intent).
My doctor agreed. I was in the full throes of major depression, not just some normal reaction to loss. She prescribed an anti-depressant, my first. I went to therapy.
Within a few weeks, I felt better and was able to resume caring for Anna and the boys with my normal vigor—the therapies, the homeschooling, the private schooling, the constant meetings with multiple professionals for disabilities no one can see: cognitive, social, emotional, physical.
All through the years, Anna struggled. Friends came and went. Most left when they developed beyond her and could no longer relate to a girl whose body was growing but whose brain was not. They could not understand her lack of social understanding. They could not understand why she made seemingly ridiculous remarks or asked questions most people even much younger can answer. They resented her neediness—how she glommed onto people and couldn’t understand proper boundaries. They couldn’t understand that what seemed to be gross immaturity was really disability. After all, how could a physically beautiful girl who spoke with good vocabulary have any significant disability?
Todd and I have become accustomed to others saying, “She doesn’t look disabled.” We’ve become accustomed to most having no idea the extent of Anna’s challenges—how now, at 26, she needs an assisted living arrangement because she doesn’t know how to choose proper clothing for differing weather conditions, or how to choose and prepare proper food, or even how to shop for food—how she can’t manage money at all—how she can’t and won’t ever drive—how she doesn’t know how to care for the common cold, or make/remember important health appointments, or remember to take her medication. Ah, yes, her medication!
Three years ago, Anna lost touch with reality and found herself in a locked psychiatric unit for twelve days. A new diagnosis was added to her long list of chronic disabilities: Bipolar I Disorder with psychosis. A new professional became part of our lives as well as two new medications taken daily, probably for the rest of Anna’s life. The invisible, chronic disabilities now includes a chronic mental illness.
As I look upon my little girl, now a grown woman, I confess I’ve been angry and sad and bewildered too many times to count. I’m sure the grief from loss has contributed to my own inability to cope at times.
As a Christian, my guilt has been intense. Why couldn’t I just stay positive with prayer? Why couldn’t I just be grateful for all God has provided instead of grieving my kids’ challenges? Why couldn’t I just rejoice in Anna’s moments of happiness instead of aching every time she watches her friends experience something she knows she’ll probably never experience—dating, engagements, weddings, babies, independent living. Why can’t I just trust that God will take care of her, of them, once we’ve died instead of laying awake too often wondering which one of God’s chosen will understand her/their needs when so few have understood these past twenty years?
Living with chronic illness and disability isn’t easy. I have demons I battle every day. So does Anna. So do we all all. But we have joy that I believe has grown because we haven’t been given the lives we expected or hoped. We’ve fought hard for joy. We’ve learned to be grateful for the small things, for the small accomplishments, for the small developments. Most of all, we’ve learned how God defines success much differently than most. Small is big in the kingdom of God. Serving is receiving in the kingdom of God.
Whoever would be great among you must be your servant, and whoever would be first among you must be your slave, even as the Son of Man came not to be served but to serve, and to give his life as a ransom for many. Matthew 20:26-28
Could it be that the disabled and the chronically ill serve best by being “weak” in the eyes of the world?
Could it be that God has worked through Anna and our other children to show Todd and me and the many around us that we all have a desperate need for Him in our lives? That realizing our need and seeking Him more than anything can actually give us everything we want but never quite get on our own?
Could seeing our frail and feeble selves bring us the peace so elusive when we try and make our own way through this landmine landscape of life?
Could letting go of ourselves and our kids and leaning on God really bring us our deepest joy?
I can say now, after twenty years—absolutely yes! Even in the depression, there’s joy. Because loving Anna and our sons with all our chronic needs has taught me total reliance on the King of kings. I’ve learned, day-by-day, that when there seems to be no other way, God always creates a way, bringing me to my knees in humble thanks and awe. Every time we recognize our poverty, we become prosperous because we’re finally open-hearted, open-minded, open-handed and open-willed enough to receive the riches of God’s grace.
Relying fully on God isn’t easy because Pride doesn’t die an easy death. But allowing Pride to be crucified opens heart and soul doors to the freedom and fulfillment all seek but never find apart from God. His ways are often a mystery, but His ways are our perfect destiny.
We’ve been trained up by God’s hard but merciful hand in this knit-together-by-Him family of five. And I’ve come to know, in the deepest part of my soul this one essential:
. . . we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:37-39
God’s grace for us in Christ Jesus has sustained us thus far. And I believe that His grace for us all in Christ Jesus will carry us all, all the way Home.
HEATHER MACLAREN JOHNSON and her husband Todd are parents of three adult children who were adopted with multiple, invisible, permanent special needs due to early institutionalization in a Russian orphanage and fetal exposure to alcohol. They live on 44 beautiful, rural acres in Wisconsin.
Heather has struggled with clinical depression and anxiety since early adolescence. Still, she praises God for His mercy, grace and unending provision. She may walk with an emotional limp at times, but always, she runs with her Savior, seeking His wisdom and direction.
Heather’s greatest desire is to help other chronic emotional sufferers understand that no matter how wounded, we are passionately loved by God, invited to walk and work with Him to help others know of His love, salvation and constant provision, for He works best through those who know their brokenness and emptiness, through those who let Him in.
Heather studied Piano Performance at the Cincinnati Conservatory of Music and earned her B.S. in Education. She went on to earn her doctorate in clinical psychology and established a private practice in Chicago.
Heather loves not only the people in her life, but she is drawn to the songs of the birds and the bees, strong coffee, organic gardening, riding horses on her farm, and unhurried time to read and feed her soul.
Heather is the author of Grace, Truth & Time: Facilitating Small Groups That Thrive. In addition, she has published devotional pieces for The Seed Company, and will be published in an anthology edited by multi-award-winning author, Leslie Leyland Fields in August, 2018. She blogs at truelifewithgod.com
Chronic Joy Ministry has been blessed since the very beginning by the creative vision and capable design work of Kyle Re, founder of kylerecreative.com. Kyle has graciously donated nearly all of his work for the ministry, and we are deeply grateful. We wouldn’t be where we are today without his gifts and vision.
Kyle has gifted Chronic Joy with:
- logo design
- business cards
- founder and board member head shots
- social media ads
- four book covers and interior design elements
- two bookmarks
- Discovering Hope book trailer
- “Our Story” video
- and so many other pieces along the way
Kyle’s heart for others also pours out into missions. He’s served on short-term teams over the past 10 years in Mexico, Peru, Appalachia, in Guatemala with Potter’s House International five times, and in Hong Kong, where he’ll be returning in just a few weeks, twice. He has a huge heart for children, investing in their lives through faith, art, music, laughter and life.
On Sundays, Kyle leads worship teams at both his home church, Immanuel – Brookfield and at a growing, local church plant. On Wednesday evenings, you’ll find him volunteering with the incredible ministry of StreetLife, loving on those who, for so many reasons, find themselves living on the streets.
Kyle works remotely as a full-time graphic designer for Zero Chaos out of Orlando, Florida, in addition to running his own business, Kyle Re Creative.
Kyle writes: I’ve always been in love with the creative process. After earning my degree in Graphic Design, I realized I wanted more than a typical 9-5, so I shifted my focus towards starting my own business in photography and graphic design.
I enjoy traveling abroad, exploring old buildings, and making music. I specialize in wedding, lifestyle, fashion, corporate and fine arts photography. In graphic design, I specialize in logos, apparel design, infographics and corporate branding.
Jeff began his partnership with Chronic Joy Ministry as we took our first fledgling steps, answering technical questions, helping when needed, and most importantly teaching us so we can grow.
Jeff’s passion for serving behind-the-scenes began when he was quite young, using his gifts and growing abilities across a wide array of audio/video teams at his church, making all things technical work seamlessly and smoothly.
Jeff and his wife Katie faithfully invested in Chronic Joy as our first monthly financial supporters, even before we knew what we were all about.
Jeff has been instrumental in:
- purchasing domain names
- pursuing Google Apps for non-profits
- ongoing web support
- many vital, strategic, behind-the-scenes places in the technical world
Without Jeff’s knowledge and expertise, we simply couldn’t do all we do today.
Jeff will continue to serve as Chronic Joy’s Information Technology Consultant as we move to a self-hosted website in 2018.
His patient, unruffled demeanor and willingness to serve, faithfully and quietly behind-the-scenes continues today with his church, with Chronic Joy Ministry and with his family.
Jeff is a quiet, thoughtful, dedicated husband, father, son and IT professional, and we are deeply grateful for his continued investment in Chronic Joy.
PAMELA PIQUETTE is the mom of three adult children, grandma of two sweet baby granddaughters, and wife of 30 years. She has Ehlers-Danlos, chronic migraines, fibromyalgia, and dysautonomia.
Chronic Joy’s Ambassador Initiative reflects a partnership of hope, purpose and worth. In August 2016, those three words took on a new meaning for Gene Ehlinger. Gene is no stranger to chronic illness. He’s lived with Crohn’s disease since age 19. However, on August 29, 2016, an ambulance arrived at his front door for a suspected heart attack. When Gene’s heart stopped two minutes later, his life changed forever.
In nine hours, Gene was resuscitated nine times. His outlook for survival was not good, but HOPE was never lost. He was diagnosed with a massive blood clot in his lungs. Because his heart stopped so many times, it was not certain he would regain mental capacity, wean off the ventilator, or recover any of his kidney function.
Miraculously, after a month in the hospital, Gene was able to go home. However, he did need to return to the hospital three times a week for kidney dialysis. Even though it had been a couple of months since his incident, Gene continued to be hopeful that his kidney function would improve. And it did! After much prayer, Gene’s kidneys recovered enough to discontinue dialysis.
As time went on, they learned Gene’s illness had caused a permanent change in his physical strength and short term memory. He was not able to return to work as physical therapy assistance, changing his sense of self worth and life’s purpose.
Fortunately, Gene has found meaning through wood working. In the shaping and creating of new projects, Gene regained a renewed sense of self worth and purpose that not only bring meaning back to his life, but also joy to others.
In fact, it is for this reason that I am proud to announce Gene Ehlinger as a Chronic Joy Ministry Ambassador for 2017. Through his gift of woodworking, he created and donated a donation and prayer box. This handcrafted box represents a partnership between Chronic Joy Ministry and those affected by chronic physical and mental illness, a partnership of generosity, joy and hope, a chance to redefine one’s worth and purpose in chronic illness.
As Gene continues to find meaning in chronic illness, he is reminded often to never stop believing in hope as miracles happen every day.
You can find more of Gene’s story at: CrossingRivers.org
HEIDI PETERSON is a loving wife and mother to one friendly dog and three amazing, fun-loving children – a daughter born with a congenital heart defect (PA-IVS) and one son with food allergies and a sensory processing disorder – who always remind her to live in the moment. Since childhood, Heidi has witnessed the progression of a genetic, neuromuscular disease called Charcot-Marie-Tooth on her siblings and father. She loves dark chocolate and all things nature and family, and is a registered nurse, clinic manager and wellness coach at Solstice Health, and a Chronic Joy Ministry board member.
The phone rang. It was 3am.
“Mom,” my son Sam said so quietly I almost couldn’t hear him, “can you come get me?”
Eight months earlier, Sam had walked across the stage in cap and gown, head held high, a smile playing at the edges of his lips and accepted his high school diploma. In August, on a Presidential Scholarship, he’d headed for college without a backward glance, ready to shake free from the past three and a half years of serious illness and start fresh. Clean slate. New beginning.
But you can’t shake free from the illness written in your DNA. Read more…
Today, I’d like to introduce you to my friend, Samantha Juneau, known to her friends as Sam. We’ve met just a few times, but there’s something remarkable about spending time with her. Sam’s smile lights up a room and she exudes warmth, kindness and joy.
Last week when we met, I talked almost non-stop as I have a habit of doing. Sam smiled and quietly held my hand. During our conversation, I noticed her necklace. It was beautiful. I told her how much I liked it and reached for it to get a better view. As I released the beads, time stopped. My hand was right beside her ventilator. Read more…