Gently tended flowers of your gardens,
receiving attention and time,
forever blossoming our conscious evolution.
Parks of nature, sensed and investigated
subtly enlightening us to who we are.
Loving, nurturing homes of light,
richly furnished for guiding our growth
of bodies, minds, and hearts.
Spontaneous play and humor enjoyed,
filling our lives with freedom and delight.
Beautiful soul singing in the morning,
illuminating our days
with carefree expressions of joy.
Three birds flying in formation
rising into the sunrise,
spreading our wings of inspiration.
Trees of fortitude bonded together
with valiant branches
tasting winds of transformation.
Sugar and cinnamon of hugs, kisses,
and I love yous sprinkled
throughout our lives in infinite supply.
Colorful vibrant poppies in nature
reflecting our intuitive connection to Self.
Hi, I'm Heather!
I share insights from my experiences with overcoming challenges.
Experience the details
I focus on details which highlight the beauty in the ordinary, creating gratitude for everything in life, even the struggles.
This consciousness reminds me what I am living for, reconnecting me to my humanity, the joy of exploring this life, and my life’s meaning and purpose.
Discover new perspectives
I write about what living with Miller syndrome, hearing impairment, autism, and a genetic lung disease have taught me about myself and other people.
My prose and poetry shed light on the meaning of life, relationships, diversity, acceptance and unconditional love.
Journey with me
Come with me on a journey through emotions that connect us all, the struggles and joys we all share, and the oneness of life.
I hope my writings will influence how you see life, people, and most importantly, the relationship you have with yourself, leaving you forever changed.
There is so much to live for. ~Heather Madsen
Welcome to DebbieJorde.com
Overcoming Challenges Together
Heather Madsen ~ Photo by Melissa Papaj Photography
Hi! My name is Debbie and I’m so thrilled to connect with you today!
All of my life I’ve loved helping people. From a young age, I was randomly cleaning the house to surprise my mom and hugging her while saying, “I love you” when she was sad. This made me feel happy. Doing my siblings chores so they wouldn’t get in trouble helped me feel good. When my youngest brother was born, I was 12 years old. He was my pride and joy. To protect him when our parents fought, I stuffed blankets under the door of his bedroom, held him in my arms, and rocked him as I sang lullabies. Caring for him gave me joy. All I wanted to do was be a wife and a mother. Making a positive difference in people’s lives brings me happiness so I’ve always found ways to do this.
During my school years, I was self-conscious. Being 6 feet tall, having buck teeth from sucking my thumb as a child, and being molested around age 10 by someone I trusted, contributed to my having feelings of worthlessness. Helping other people, and therefore making a positive difference, helped balance these feelings and build my self-confidence. Achieving goals in sports and becoming student body secretary also helped.
After graduation, I went to barber school. Helping people feel good about their hair so they could feel good about themselves made me happy. Being a hairstylist allowed me to stay home, raise my kids, and gave me a social outlet. Never did I imagine how perfect the flexibility of this career would become for me, as I later became the single mother of 2 children with rare Miller syndrome; causing multiple disabilities. They also have a lung disease, autism, ADHD, OCD and depression.
Married in 1976 at the young age of 20, my daughter Heather was born at 21, with unexpected, very obvious, short bent arms, and small hands with only three bent fingers and a thumb, a cleft palate, small cup-shaped ears with deafness, missing lower eyelids, and multiple other problems, later named Miller syndrome. I couldn’t believe this was happening to me! When Heather was 18 months old, geneticists told me this would never happen again. Three years later, my son Logan was born, on April fool’s day (can you believe that) with exactly the same problems! Now, Logan is 36 and Heather 40, and they have had over 55 surgeries between them. When they were only 6 and 3, their father deserted us and I was left as a single mother.
All of my previously accepted religious beliefs were shattered and when I lost all forms of any spiritual foundation, at 29 years old, I hit a breaking point, developing the eating disorder Bulimia. Through counseling and attending Overeaters Anonymous I overcame this debilitating disease. I was one of the lucky ones! Step by step, I developed new beliefs in a “power greater than myself,” and using my newfound spirituality, I learned to accept circumstances which I cannot change and focus on the changeable situations. Believing in a higher consciousness, by whatever name is used, helps me maintain my sobriety from Bulimia. Through continued spiritual studies and practices, I connect to my “higher self,” receiving guidance, strength, compassion, forgiveness, empathy, and love, for self and other people.
In my late 20’s, completing the personal growth seminar, Lifespring, my perceptions of life, people, and myself were literally transformed, an awakening of sorts. I came to see the importance of every choice we make, and the impact our choices have on creating our future.
One new choice I made at that time was, choosing to become an aerobics instructor, paving the way to developing and maintaining healthy diet and exercise habits. After teaching aerobics for 30 years, I recently retired. Videos of my free low-impact aerobics classes and other exercises can be found on my Debbie Jorde youTube.
At age 54, I was diagnosed with Multiple Sclerosis, MS. Having had many years’ experiences of overcoming challenges, I am now overcoming challenges caused by MS and learning many valuable lessons which I look forward to sharing with you.
Today, at 61 years old, I look back and realize that everything I went through, and am still going through, has sculpted me into the woman I am today. Compelled to share the valuable lessons I’ve learned as I have moved through my challenges, I wrote and published my memoir, Eight Fingers and Eight Toes: Accepting Life’s Challenges.
After living 32 years without answers as to why Heather and Logan had Miller syndrome and a lung disease, in 2010 scientists found the disease-causing genes in both their dad and me, making each disease a recessive gene with one in four chances of recurring in each pregnancy. Through sharing personal stories of accepting and overcoming challenges, and lessons we have learned, we experience connections with people, and gain personal rewards of making a positive difference.
I have a supportive, devoted husband, Lynn Jorde, who loves me beyond measure and whom I adore. I live close to the beautiful mountains in Salt Lake City, UT, and Heather and Logan live in their own apartments only ten minutes away. I have magnificent friends—men and women who believe in me, love me and stand by me through thick and thin. I’ve enjoyed careers that didn’t feel like work, and am continuing making a positive difference in many ways. Together, my husband, my children, and I are committed to making the world a better place. We all love what we do and it shows every day! I am blessed. I am grateful. I am excited and hopeful about my future. I wish this same joy for you. I’m so glad we’ve connected!
Fireworks on the fourth of July,
exploding with light and dazzling our spirits
with displays that go on forever in our souls.
Swings sets of freedom,
soaring us higher and higher into the air,
increasing lightness and freshness
of each moment.
River continually flowing steadily,
ever nourishing our spirits
over the rocky bumps and waterfalls in life.
Books we read together, cuddling close
for engaging adventures into consciousness.
Bicycle riding, wandering through
the beautiful streets of trees and flowers
that eternally live inside us.
Canyon adventures in the summer time,
discovering Self, amid roughing it in life
and always coming through.
Holidays of joyful enchantment,
cherishing our family togetherness
and celebrating life as the Three Musketeers.
Car trips uniting us in exploring life,
traveling On the road again with loving
home-made sandwiches (blender now required).
'My name is Logan Madsen. I am a 36-year-old self-taught-fine-artist from Salt Lake City, Utah with I AAS in Graphic Design/Multimedia. I live alone, with my dog Charlie. I have a rare condition called Miller's Syndrome (less than 30 documented cases worldwide) which affects muscle and bone formation, causes hearing loss and affects a few organs. Additionally, I have a lung condition and Autism Spectrum Disorder(ASD). My older sister, Heather, suffers from the same disabilities. In 2010, we were the first family in the world to get our entire DNA genome sequenced. Scientists found that Miller Syndrome is a recessive gene. They also found Primary Ciliary Dyskinesia(PCD) –also a recessive gene- which is the cause of our lung disease, and other attributes here and there.
When I see somebody who looks different, I want to inspect them as much as I can. Clearly, it’s not nice to stare, but WE ALL WANT TO. I wish I could touch them, talk with them, understand them, but it’s too risky. I might offend them or get stuck having to be overly charitable in my efforts to save face. What if they are clingy? I don’t know their mental capacity. How do I to relate to someone who looks so weird??? It’s kind of gross and alien-like. Some may say “This is too hard for me to deal with.” Others might cringe and pray to God that “weirdo” doesn’t look in their direction.
I get it… I do. I have the same reaction. The unknown is scary. Being scared is a negative feeling and wanting to stare is simply human nature. Anxiety is created because of these opposing reactions. I had to find a way to bridge the gap between you and me without anxiety being a factor. With this exhibit, I want to bare my reality for everyone to see. Once I put it out there, it will be OUR reality. I want you to stare at my paintings. You will see there is beauty and magic that exists in even a small patch of skin. We all have skin.
Extracting subtle detail from life is the basis for my Obsessive Compulsive Disorder(OCD). This hyper-awareness requires most of my attention; which, in new social situations, leaves me just enough simple responses. I have come to believe that this is caused by my Pervasive Developmental Disorder Non-Other Specified (PDDNOS). This diagnosis was realized about 8 years ago, putting me on the autistic spectrum. When painting, brushstroke is calculated and deliberate. I “need” to paint all of the detail, but there’s too much pain involved. I want to see all of the detail, but the amount of time it takes is not economical. I am working towards being able to include impressionism in my future works. I am inspired by the confluence of color, texture, and shapes. Art is meant to isolate subject matter from the rest of life, in order to magnify their importance.
Dubious perceptions “made-up” by the media leave me feeling torn, psychologically. I live in a constant state of paradoxical awareness. I see things the way they are, how I want them to be, how you want them to be and how society views them...ALL AT ONCE. I wish I could just stay on my own path without worrying about how it’s going to affect someone else. I want to accept life’s terms and drop the weight of uncertainty off my back. Can’t I just be the me that I know? We all share the human experience, but nobody wants to talk about it. I want to talk about it.
It’s hard to describe how being different makes me feel. I cherish the unique perspective I have on the world, though it changes minute-by-minute. Consumed by anxiety, pain, and depression; I am prevented from maintaining control over my will. I worry that people think I’m weak, stupid, ugly, rude, selfish, wrong, weird, boring, slow, etc. It’s quite possible that I think all of these things about myself. That being said… I KNOW I’m brave, funny, handsome, charismatic, smart, talented, passionate, thoughtful and strong. In my early teens, I was oblivious to any disabilities. It wasn’t until my early 20's that I realized my life is much more difficult than my friends’. Slowly, I am starting to give into the reality that you and I are not the same on the outside but share the struggles on the inside.'
Logan Madsen Fine Art And Graphic Design
Logan is a 36 year old self-taught artist with an AA degree in graphic design and lives in Salt Lake City, UT. What makes him happy is painting and living with his dog Charlie. Logan lives to create art! He spends a few hours each day painting in his home art studio. He finds his voice on canvas, and soon on film in his documentary, “Logan’s Syndrome,” due out sometime in 2017.
Logan has exhibited his art at Art Access Gallery in SLC, UT. In his recent exhibit “Syndrome Psychology,” in spite of physical limitations and the pain they cause, created stunning, hyper-realistic paintings which explore himself, visually expresses what it is like to be Logan Madsen. View these paintings on his facebook page and in youTube videos found on Debbie Jorde youTube.
He loves to create things with his hands and mind, and often redesigns household items to be more ergonomically useful for his use in regards to his physical limitations. He has a rare condition called Miller's Syndrome (less than 30 documented cases worldwide) which affects muscle and bone formation, causes hearing loss and a few organs. Additionally, he has a lung condition and Autism Spectrum Disorder (ASD).
In 2010, when scientists found the disease causing genes to be a recessive gene, Logan was excited to know he could have unaffected children, should he have the opportunity. He was also excited about “paving the way” for other people to gain answers to their unknown conditions when he became one of the first family in the world to have their entire genome sequenced. He likes the feeling of helping other people and “putting his bookmark in making history.”
Logan is insightful, brave, funny, charismatic, smart, talented, passionate, thoughtful and is a strong person. His self-awareness and self-actualization is remarkable. When he speaks publically about accepting and overcoming challenges Logan mesmerized his audience with insight and humor, which brings him satisfaction and purpose.
Debbie Jorde~Photo by Melissa Papaj Photography
I enjoy sharing personal stories of overcoming challenges and lessons learned, in hopes of inspiring you to make more choices in your life which might create better physical, spiritual and emotional health and bring more joy through fulfilling your dreams.
Heather Madsen, is an illuminating writer and speaker with multiple disabilities who relates her struggles and challenges and how she transforms them into deliberate creations of joy, through appreciating the simple beauties of living. Heather is published in the book Eight Fingers and Eight Toes: Accepting Life’s Challenges by her mother Debbie Jorde, and in the book series Desert Wanderings, published by Art Access Gallery in Salt Lake City, Foundation for Nager and Miller syndrome (FNMS) Newsletter, and the Salt Lake Tribune newspaper. Heather earned a BS degree in Psychology from the University of Utah.
“I am aware of my differences and how they impact the experiences of other people by teaching them about diversity and showing them it is possible to face challenges and still enjoy a happy life. I am learning to love myself as I am, accept and love my differences, and be comfortable with myself.”–Heather Madsen, 33, writer
Heather was born with a visible and rare genetic condition called Miller Syndrome, which affects only thirty people worldwide. Her non-visible challenges include a rare genetic lung disease, hearing impairment, ADHD, and autism.
For 20 years, Heather has addressed first-year medical students at the University of Utah about how her disabilities affirm the human spirit in medicine, other groups at the University of Utah, caseworkers at the Department of Workforce Services and Utah Department of Vocational Rehabilitation Services, and at local libraries. As a keynote speaker for Autism Speaks in 2011, she shed light onto some complexities of autism. Recent speeches about seeing beyond appearances, accepting challenges, and insights into communication produced transformational results for audiences.
Heather enjoys speaking publically and looks forward to future opportunities to make a positive difference through sharing her story.