It began with a Valentine’s card and a two-week stay at Denver Children’s Hospital.
Lily was hospitalized in October 2014 due to complications from a collapsed lung. After receiving confirmation from an MRI, our Aspen Valley pediatrician sent us off on an emergency trip to the Children’s Hospital in Denver.
Lily was stoic. She packed as quickly as possible and in her characteristic wit, assured her brothers that she would be fine and back home before they could snoop through her room.
A ‘Flight for Life’ was called, however, we chose to drive the three hour trip to Denver. The journey would allow us space to prepare for the onslaught of tests, procedures and for the possibility of surgery.
Lily’s breathing was shallow and tight. Bundled in a blanket and with a pillow clutched in her arms, she stared out of the window. Pensive and quiet, we drove through sleet and October frost with a heavy heart.
Upon arrival and with admittance to Children’s, the reality and severity of Lily’s condition became apparent. Examination, X-rays and CT scans showed a significant collapse of Lily’s lower right lobe. Oxygen and a PIC IV were administered. Surgery was scheduled for early the next morning. A thoracoscopy was performed and a chest tube was placed into the space around Lily’s lungs to help drain the air. Hopefully this would allow the lung to re-expand.
Therapy, rehabilitation and additional testing occupied Lily’s days. From her hospital bed, Lily worked hard to re-build her lung capacity. She learned how to administer medicines through her PIC-line with anticipation that she could finish her IV medicines at home.
It was a long two weeks. “There is no day or night in a hospital,” observed Lily. Rather, our stay was a long period of fluorescent lighting, compulsory beeping from surrounding machines and around-the-clock visits from an army of doctors, therapists and specialists. The days lingered. Lily and I played cards, contemplated hospital menus and watched Halloween specials.
Then William’s card arrived. A bold, whimsical creation emerged from a crisp white envelope and brightened the room. Lily’s youngest brother had sent a beautiful card with hopes that it would make Lily smile. Candy-apple reds, Pulitzer-pinks and soda pop purples in crazy heart patterns proclaimed boldly, “I love you.” Sentiments of inquiry and concern were etched on the pages within. William’s distinctive cursive and lengthy account of happenings at the ranch amused us. We smiled and thought of William.
The nursing staff smiled too. In fact, everyone who entered the room noticed and commented on William’s card. It found a place next to Lily’s bed for the remainder of her stay. Nurses, doctors, pulmonary specialists and visitors were mesmerized with its color and patterns. “This would make a great Valentine card,” many stated.
Lily and I played around with logos and sent our ideas to Aunt Susan, graphic-designer extraordinaire. Susan worked the design into a finished piece and Padre offered to print the art onto card stock. Envelopes were ordered and plans made for distribution.
Nearly a year later, William’s Valentine is still a favorite of the many designs in the Lilybart greeting card line. Lily works with local artists, exploring color and concept. Holiday cards, landscapes of aspen trees in winter, spring, summer and autumn, Valentines and trail map graphics are the fruits from this initiative.
The synergy and magic of this collaborative journey offers connection, joy and an opportunity for Lily’s imagination to flourish. The grace and beauty of our valley provides life for Lily’s enchanting scenes of mountains, trees and blue skies. Working with artists has given Lily the inspiration to create and to transcend the rigor of her daily Cystic Fibrosis protocol.
Proceeds from the sale of Lilybart cards buys time for Lily. With access to integrative medical support, we can help Lily beat the odds of this life-shortening disease. Cystic Fibrosis may dictate the outcome of health but Lily’s potential lies with her ability to hope, to create and to find purpose with each day.
Our Lilybart initiative has grown to become a thriving company. Lily’s cards are available in stores from Aspen to Glenwood Springs. She has worked with artists in Colorado and Pennsylvania. Lilybart is the model from which The Lilybart Foundation has taken flight. This non-profit will provide an opportunity for all children with CF to work with artists, to make something beautiful and to tell their story.