When a child is born the world changes, significantly. In May of 2003, my expectations of child birth and mothering started spinning in wild, irregular circles like a toy top. A routine doctorʼs appointment, in a routine pregnancy led to an emergency c- section. Enter Ellery. Our routine course ended. Mystified doctors diagnosed her with pneumonia and collapsed lungs. After 10 days Ellery came home on supplemental oxygen, with a deep, wet cough, runny nose, and fluid-filled ears. The doctors assured us her symptoms would resolve in days.
Ellery outgrew oxygen, but not her symptoms. On the outside I watched a beautiful, growing, little girl. Nevertheless, was on a grueling journey to discover why inside, this little girl was sick. Something in parents knows what not to ignore. Dozens of doctors, homeopaths, chiropractors, and specialists had no answers. Ellery patiently persevered through diet manipulations and medications. Ear complications caused delayed speech, so we taught her to sign. Proficient enough to carry on full conversations, she delighted the family as a 20-month-old, signing and swinging her hips to Madonnaʼs “Santa Baby.” Seven sets of ear tubes helped with speech but not the often overwhelming pain, constant pressure, drainage, and infections. Nasal washes and antibiotics failed to clear her sinuses. And always, the deep, wet cough.
In 2008, after hundreds of hours of research, and another symptomatic child, I came across a rare genetic disease, Primary Ciliary Dyskinesia (PCD). The wild irregular circles of the toy top balanced, spinning now with order and direction. It would take 2 more years, a third child, attendance at an international PCD Research Convention, and a visit to a Center of Excellency in Denver, for Ellery and her siblings to receive an official diagnosis.
When a child is born with PCD, cilia (small hair-like structures lining the lungs, ears, and sinuses), do not move properly. They are unable to move mucous out of the airways. Mucous is healthy when you donʼt have PCD. When you do, it becomes laden with bacteria, resulting in irreversible lung scarring. A progressive disease, PCD requires aggressive therapy. After diagnosis, it took 3 more years to find a lung doctor who understood this rare disease.
Each cough acts as a reminder of mortality and a call to action. Hours fill with inhaled medications, shaking vest therapies, lung function tests, mucous cultures, antibiotics, x-rays, CT scans, explained and unexplained pain, hospital stays, IV antibiotics, and doctor appointments. To counter the stolen time, we embraced every opportunity. School shifted into our home. As a family we tackle the hard parts of life together. All of them. We have learned not all therapies inhibit, some empower.
At 6-years-old Ellery began playing the piano. Music speaks deeply and intensely when practiced with firm dedication. Side by side we spent countless hours practicing. Persevering to perfect the most difficult measures, Elleryʼs confidence grew. The romance of Chopin coupled with the precision and patience required to play hisworks, pushes Ellery to the piano each day. Finding beauty and passion in incredibly difficult tasks, is an invaluable skill.
Elleryʼs spirit and lungs benefited from more musical therapy when at 7-years-old she began flute lessons. The flute is the most difficult of all wind instruments to play, requiring the most lung strength. Ellery took it on, this time independently practicing, not letting PCD hold her back. Ellery never lets age inhibit a relationship and her relationships with her music teachers are gifts in themselves.
The more pounding, shaking and puffing PCD lungs get the better. Gymnastics fit the bill. Ellery began at 7, old for gymnastics. But true to character, her focus and drive led her to a competition team in less than a year. Gymnastics can be grueling, but Ellery never complained. Hours spent with her teammates and coaches built solid friendships and the courage and support system to conquer fears on beams and in hospitals. Grace became Elleryʼs gymnastics trademark. Her transition to dance was natural. In the fall of 2013 she began studying at a nationally recognized dance studio, and was invited to participate on their most competitive, age specific dance and ballroom teams. Walking in as an outsider with no friends and very little experience, Ellery dug deep inside for confidence, kept a smile on her face, and choose to thrive despite social challenges. Dance is a natural outlet for Elleryʼs passion of all things beautiful.
When Ellery was 10 she plead for a guitar. As a classical music snob, I resisted. But Elleryʼs dad, pop music lover, and her biggest cheerleader, bought her a guitar for Christmas. By the time Christmas break was over she was clumsily strumming and belting out Taylor Swift songs. Nights, after workouts, she picked up her guitar and watched you tube videos to learn chords. In the fall of 2013, she began lessons. no idea then, the lifeline Elleryʼs guitar would be during the dark times closing in.
One day Ellery came home from a gymanstics workout with chest pain. She was hospitalized at Primary Childrenʼs Medical Center in Salt Lake City. Six exhausting days followed of aggressive lung clearance treatments and an exploratory lung surgery. Persevering, Ellery placed herself at the piano, sporting a mask and IV, and presented her gift of music. She played Chopin, Rocherolle, and Haydn, to spontaneous gatherings of doctors, nurses, and patients and their families, drawn to the healing power of music. But sometimes her performances were only to a small boy in a wagon with no hair and many more tubes and monitors than Ellery.
Before leaving, doctors inserted a PICC line to administer IV antibiotics at home. Her 3 week course completed, but the journey didnʼt end. Complications immediately ensued. Doctors prescribed more antibiotics and steroids. Pain flooded her body. We didnʼt know then, but Ellery was experiencing a rare complication in her nervous system. Her nerves developed abnormal reflexes, bouncing pain signals in never- ending loops for no physiological reason.
Any movement in Elleryʼs body resulted in excruciating pain. The fall and winter were long, dark months of immobility, seizures, nightmares, and depression. But those months also overflowed with outpourings of kindness, prayers, and unearned support, forever changing our family. I embraced an extraordinary child stripped of everything, physically and emotionally. These months taught me, with unenviable clarity, how to love. All I invested in my daughter, everything she invested in herself, those couldnʼt be, and werenʼt the essence of my love. Love simply exists. Limitlessly.
Elleryʼs mind needed healing. Her body would follow. We searched for doctors, therapists and medications. We cycled through many, some with frightening side effects. Finally, a combination began working. In therapy, we learned the emotional weight of living with a chronic disease. Under the direction of her therapist, Ellery wrote and wrote, and as she did, the internalized frustrations and anxieties poured out. The content wasnʼt beautiful, but the words often were. Better out than in. Functionality began to return, but the pain remained.
In early spring, something changed. Ellery created a silly game, reinventing herself as a robot, obedient to her baby sisterʼs every whim. For the first time in months she interacted with her siblings, to fabulous effect. A few nights later, her dad and I were beckoned to her room. Ellery, guitar in hand, sat on the bed her 8-year-old sister and started singing. She sang of pain with disturbing vigor and clarity, but of overcoming it with just as much fervor. Seeing passion and music flow out of Ellery once again, and in a new organic way was overwhelming.
Ultimately, Ellery was the only one who could heal herself. She didnʼt cure PCD, but she healed. She found her own voice in the guitar, one not dictated by another composer. Light radiated from her beautiful, warm eyes. Within weeks she was back in dance. Music flowed effortlessly from her fingers to the piano and flute. School returned to our home. Stronger Than Before, her first recorded song, speaks of the young woman she has become.
She created this website to celebrate a reclaimed life. For Ellery, disease and adversity were an inescapable avenue of discovery. She discovered a passion for performance and a profound ability to speak to people in their deepest hardship. Her poems, songs, and example bring hope to those suffering. Watch for Ellery to live a life of significance. Experience bestows gifts. For Ellery these gifts were the priceless power of perseverance and the passion to share a message that hard things make us Stronger Than Before. Ellery advocates for all girls, women, everyone, to reach for their dreams and pursue life with a passion uninhibited.