Genetic > One Who Heals
In memory of Emma Catherine Houser
A bursting summers sun began to light a new day as our daughter Emma was born into this world against a backdrop of mountains and a sky radiant with deep pink and indigo hues. The beauty of the outside world was lost to us as we met and beheld our newly born baby girl. We were introduced to her fiery spirit and catapulted into life with a most amazing child, and on that sultry summers day we became trapped in time, caught in rapture we inhaled joy and absorbed her radiance.
And nearly four years later, during the month of May - with butterflies flourishing the landscape and petals in full bloom, our tiny, exquisite Emma so filled with light, exhaled her last breath and took flight of this world forever. Her scent, laugh and delicate imprint on our soul will forever stay. Our Emma. Her name meant “one who heals” - a tantalizing notion because during her days on earth she seemed so in need of repair, her tiny body refusing to adhere to the rules for a healthy childhood. In the wake of her earthly death, the truth comes and shines its grace all around. She was not to be healed; it was Emma’s presence in our lives that healed us.
In life and death, she continues to be…our teacher. Our journey with Emma led us through denial, darkness, unquenchable desire to make her healthy, acceptance of her disease, letting go of her and ultimately, a quest for healing and realization of truth. The family we were before Emma no longer exists. Torn apart are the definitions that perpetuated our minds of what was a fulfilled life. Left now is an ever ripening wisdom that living life is not to be defined by others expectations, earthly desires or boundaries. A fulfilled life is not measured by accomplishments, wealth, or the amount of time we spend on earth. The brief flickering of time that was Emma’s life held more truth, meaning and fullness than most ever experience.
Emma. Stay a moment and absorb her memory, the peals of her laughter, fiery spunk, and her courage. After she left us, we stumbled over this earth, demons haunting our dreams as we began to realize the pain might not be healed in this lifetime. Lessons learned are all we can take from her flight in and out of our life. She left us as quietly and quickly a single flame is blown out. The glowing aura of her physical presence remained as her last breath was exhaled. She was three. “She is gone, she is gone” my voice repeated and echoed through our home. The ebb and flow of life and death was fulfilled and glorified. Tiny glimmers of reality peeking through the dark cocoon of our shock. Not light filled glimmers but a morose sense of perception - of the world and gossamer draping of knowledge that for a while existence was to grow darker, even darker. She is gone.
After she left it became quiet in our home. At times the rift between our reality and the world’s ticking of time has been filled with such intensity it threatens to rip us apart from humanity. And yet, we survive. We absorb the thrilling laughter of our other children; we notice the warm rays of sunshine that play upon furniture in Emma’s room, still filled with HER things. We are gingerly stepping through a doorway that must be the threshold to…the rest of the journey. It is filled with uncertainty but as time passes, I feel we are kicking at the darkness, and the future must now bleed light.
Light comes. It is the subtle, gentle caress of awareness that Emma’s spirit was shaped and filled with God’s grace. The feeling of contentment, fulfillment, and indescribable emotion when holding her was simply, Him infused through her. Basked in truth while searching for relief from the searing pain we now reflect on her life, and her amazing journey. Emma was beautifully and wonderfully made. Her genetic fabric was carefully chosen well before she began her life on earth. She was placed into our family and lovingly cared for. Her syndrome did not debilitate our family but instead it empowered us. We continue to be amazed by her and by her work here on earth. Our family now travels on the journey without her physical presence but we feel her spirit, and her melodic laughter resounds around us. We keep her memory alive and woven securely into our family’s fabric. Eli and I have not “lost” a child – we still have three. We will talk about her, leave her pictures and favorite things in our home. Her blanket and pillow will forever grace our bedroom. We will remind Peyton and Paige that Emma is always their sister. That life is not forever, but love is.
Throughout the rest of my life I know our family will eternally be shaped around her short presence in our lives.
Thank you Emma for the love, the lessons, and patience you had for each person blessed to have met and beheld you. It was never a sacrifice to give all to you, and wholly absorb all you had to give back. We know well that you were our tiny messenger sent to teach us and that you were only meant to be here a short time. We are humbled to have been a part of your life.
About Cockayne Syndrome
My daughter, Emma died in my arms at age 3 1/2 years old from pneumonia, secondary to a rare, genetic condition called Cockayne Syndrome, a form of pre-mature aging. I wrote this piece on the one year anniversary of her death.
In the two 1/2 years since Emma's death, my husband and I have started a non profit organization to support families in our city who have children with life threatening illness and also families whose children have passed away from stillbirth, during infancy or from a terminal illness. Advocating for families and children is my passion. I am actively involved in the Cockanye syndrome support organization, Share and Care Cockayne Syndrome Network and serve as the volunteer bereavement and services co-coordinator.