Patient Stories
David Faustina
“In the dandelion field, the winds begin to blow as nature’s puff tosses wishes untold.” The first page in the story, A Butterfly’s Kiss begins in the dandelion field. The choice to begin the story here was intentional and reminiscent of a time in my life where I felt powerful and alive. Can you remember the last time you held a dandelion in your hand? The wishes that started to fill your mind and the anxiety as you quickly had to pick one wish as you filled your chest with air and with one strong exhale the seedlings broke free from the dandelion and floated high into the air. The tiny white fluffs represented all your hopes and dreams of what that wish if granted, would mean to you in your life. It was exhilarating and filled with power because in that moment you could be and do anything that your heart desired. For many, the idea that wishes can come true soon disappears as life moves on. The tiny yet mighty voice gets softer as we grow until one day the voice can no longer be heard.
The image of the wind blowing the fluff into the air is illustrative of the many wishes that now cannot be told because the dandelions are taken hostage by the wind. In life, this seems to be the case all too often, as the winds of change blow our lives into directions we never anticipated and never wanted as a destination. Yet somehow, we all find ourselves in this predicament at one time or another.
A Butterfly’s Kiss is a story about life’s demand for change in our lives yet through it all, each one of us has the strength to come out strong on the other end of this change. A flick or a tail, a flutter of wings and the faith of a girl…even in times of darkness the light is only a kiss away.
I was given a story that demanded to be written and it all happened in a most unexpected and uninvited way, but such is life sometimes. Here is my story and for many, it may be like your story. It was the fall of 2015 and I had just hung the phone up after receiving a call to let me know that a child very special to me had been diagnosed with developmental dysplasia of the hip, commonly referred to as DDH. A simple search on Google will just about throw reasonable minds into an altered state of panic and paranoia. It becomes a cautionary tale if one is brave enough to instead search using the keyword “spica.” Quickly resorting to center my mind I knew therapy was in order and immediately sent my browser to Amazon. Back in a much more familiar place, I started looking for items that might help this child through the upcoming procedure and recovery period. I was shocked that Amazon, like me, had very little information on DDH except for a link to this chair-like contraption, which later proved to be very helpful. For many, I can imagine, news of a loved one or someone very close to you is given news of a health condition, naturally, we want to immediately gather as much information as possible. Unfortunately, unlike the days of the multi-volume encyclopedias, information is no longer secured by gatekeepers who authenticate its credibility. The information superhighway is now littered with self-proclaimed ‘medical doctors” whose only training comes in the form of too many hours spent on WebMD. Yet, intertwined we find credible and wholly reliable sources that provide the substance and information we need to become better informed and more open to being supportive to the loved ones experiencing an unknown condition. The hour was late as I stumbled upon the website for the International Hip Dysplasia Institute. The name alone signaled to me that this was the holy grail of information for DDH. Upon entering this site I immediately knew this was the real deal. I estimate that for the next six hours I clicked through what seemed like every page. If Dr. Price would oblige and confer, I think I could qualify and be known as David Faustina, IMD status after the amount of reading I did that night, and that is not internal medicine, I am a new breed known as internet medical doctor. I hope I never have to draw blood otherwise that is going to be a bad scene.
My experience coming to understand DDH is not one of a patient or even parent. I do not have a child of my own, but consider myself to have many children, including four beautiful nieces and four handsome young nephews, two even look like me, the nephews. I also was once a youth pastor and over the seven years in ministry had hundreds of kids in my care. I’ve sat beside youth who were hearing for the first time that their parents were no longer in love, I have shown up to the Principle’s office to support a youth who was being expelled. I have had to comfort students as they try to understand why they are in the hospital. Ministry was a lot of supporting and comforting students through grief, heartache, rejection and fear. Celebrating, high-fiving, and affirming students through accomplishments, graduations, and achievements. I learned very quickly that kids are resilient and adaptive, but require authenticity and presence and trust is not something they offer freely. I can remember a mentor of mine giving me words I still today remember. She departed this wisdom to me just as I was preparing to relocate to the San Francisco Bay Area to accept the ministry position. I had shared with her that I had been offered a position in ministry for a Lutheran Congregation in Northern California, it was a thriving congregation filled with families. I can remember asking her, how am I going to last in this job? I was a political scientist, not a theologian. I liked to argue policy not live out the golden rule. She stopped me as she spoke, “Obviously God has a bigger reason for your call so your job is not to question but to listen.” Then a final parting line, “and David, never talk to kids like they are kids. They see right through that.”
As I thought of how I could best support this child as her and her family walked through life with DDH I remembered the words of my mentor and remembered the experiences I had in ministry. I did not understand everything, but one thing I knew for certain, God had something bigger in store, and I am convinced now more than ever this to be true. The months following the procedure were difficult and life during the Spica is not something that should be taken lightly, but it appeared at least from my narrow view that a child is far more resilient than we give them credit. It was during the days of the spica that I would jump onto Facetime at least once a week and tell stories and share in laughter with this child. It became a highlight of the week, but not just for us, but also for my little gray cat who would come leaping up onto my lap when he would hear the laughter of the child. Out of these experiences, a story was born.
“Through the long-stemmed forest, a creature too flight, a little gray furball with the butterfly in sight.”
I wanted to do something that would help not only this child but all children and families who experience these circumstances in life. One evening last November I finally sat down and eight hours later I had the first draft completed of A Butterfly’s Kiss. It was raw and incomplete, but it was finally taking shape. My initial intention was to present this story as a gift to this young child. As I continued revising I sought out an illustrator and met a gentleman from Paris, Nicolas Lonprez. I shared with him my intention for the book and shared my personal story and he phoned back a day later and accepted the role of illustrator. He said he was so moved and felt called to work on this project. What little compensation I was able to offer, far below market rate, was acceptable to him because he too wanted to create something that would give children hope. Together we continued to work on the story and illustrations. The result has become a masterpiece where each page is a portrait of light and life. Countless other creative minds joined based on the concept and the story. Each one added something so beautiful that the end result is so much larger than I ever imagined.
My initial desire to write a book for a special child in my life has now visited and been made stronger by creatives spanning 3 continents, 5 countries and 5 states in the Union. A total of a dozen people have been involved in some small yet large way making this book a sign that hope has no boundaries and that although you may feel you are alone in this fearful time coping with DDH, you are not alone, there are people the world away that want you to know that the light is only a kiss away.
The book is intended for any child who is experiencing a time of confinement in their life. Whether confined by something physical like a cast or brace, or something psychological like fear, loneliness or grief, we all experience confinement in one form or another. A Butterfly’s Kiss is the heartwarming tale of a young girl finding hope amid life’s challenges. Change can be frightening, but it often brings new beginnings… just ask a butterfly!
One of my lines of the book is when Sir Butterfly finally meets Lady Faith and shares with her his experience.
Butterfly began, “Faith is your name and a remarkable thing, it can move mountains and is the source of our being. Your name has great meaning and in my life too, once ruled by darkness until light broke through. As the hard shell that trapped me started to crack, my life changed and I haven’t looked back. Slowly escaping from that dreadful hard home, my wings expanded and I no longer felt alone. A new body, stronger and bright, for I needed the dark times to appreciate the light. The time was important to prepare me you’ll see, heaven sent, a butterfly kiss, to you, from me.”
For the child who is or was in a spica cast or brace, this book will absolutely resonate. For the parent looking for a way to start a conversation about what is to come, I hope this book will be a resource you can use to spark that conversation. I truly believe this book is going to help children and families. I also want this book to help in bringing more information, research and possibly a cure to DDH. I also believe in the work of Dr. Price and the International Hip Dysplasia Institute and will be designating a portion of all proceeds from the sale of A Butterfly’s Kiss to be directed to this incredible organization.
To date, I have self-funded the creation of this book and am currently seeking help so I can finish the book. I am seeking support through a Kickstarter Campaign, where you can pre-purchase a copy which will allow me to complete the project and you to get your hands on the first edition due out this summer. Visit our Kickstarter here: Kickstarter or visit www.abutterflyskiss.com for more information. My hope is that this book will help families, children and the Institute for many years to come.
A Butterfly’s Kiss: Faith has just come home from the children’s hospital, but she’s still far from well. Her world seems dark and dreary… but her faithful cat, Jasper, is determined to bring light back into her life. With the healing power of the butterfly and the wishes of dandelion fields, Jasper and Sir Butterfly embark with Faith on a journey towards hope.
A Butterfly’s Kiss is the heartwarming tale of a young girl finding hope amid life’s challenges. Change can be frightening, but it often brings new beginnings… just ask a butterfly!
