THE CHARLEY PROSPECTIVE
Try this. Sit up straight, stacking each vertebrae on top of another. Take a big, deep breath to the bottom of your lungs with your diaphragm. That friends, is a MIRACLE.
Charlotte Oliva Swing ‘Charley’ was born February 4, 2012 into the arms of a mother and dad full of gratitude and with all her grandparents and aunts and uncles waiting on her arrival in the waiting room. After her big sister Sarah got to meet her (wearing her ‘big sister’ shirt), the entire family crowded into a hospital room while her dad held her and introduced her.
Charley was born into love. It was the happiest of days.
As Charley grew, a few things became clear: she has her dad’s eyes. She has her mom’s childhood curls. And she has a bright and zany personality and a tremendous imagination that is all her own.
And a surprise that was less welcome. She was delayed in sitting up. She seemed more flaccid than her big sister had at her age and other babies that were her peers. Her family grew concerned.
Then in November 2012, at 9 months of age, Charley landed in the hospital with declining respiratory function and spent four weeks in PICU, several of those on a ventilator fighting for her life. She nearly died.
And then the news came that broke all our hearts. Charley tested positive for a genetic disorder called Spinal Muscular Atrophy (SMA) Type 1. This is a terminal disease for which there is currently no cure. This was the most devastating of days. Ever. Ever imaginable. Unspeakably dark and unfathomable.
But still—our girl fought to live. And so with broken hearts her family shored themselves up to help her live the best she could. The same mom and dad who welcomed her. The same big sister who was so thrilled to meet her. The same Aunts and Uncles and Grandparents and Cousins who welcomed her on that first day.
Charley has taught us all a lot about what it means to be a family. A real true family in deed, not just in word.
Charley has endured immeasurable hardships with two long term stays in PICU on a ventilator that nearly claimed her life from something as simple as a common cold. She has undergone surgery to ameliorate severe spinal curvature (scoliosis) that was a threat to her cardiac and respiratory function. Charley does not walk. She does not sit or stand. She does not eat anything by mouth but instead is fed via a percutaneous stomach tube. Her muscles are weak. She cannot live or travel without the support of a mountain of medical support equipment.
YET-SHE IS MIGHTY.
She has taught us that life is about savoring moments and less about an overarching grand race to some finish line. It is about the joy of feeling the sun on your face in your own yard and getting to hold a flower or examine the miracle of a leaf. It is about laughing at secrets and jokes. Or holding hands (Charley has the prettiest hands).
Spinal Muscular Atrophy (SMA) is a dreadful disease that steals both life and quality of life. It has gained an enemy in our family.
But—our Charley is a blessing. A miracle of a little girl. A bright spot in the darkness.
Try this. Sit up straight, stacking each vertebrae on top of another. Take a big, deep breath to the bottom of your lungs with your diaphragm. That friends, is a miracle. And its perspective. CHARLEY PERSPECTIVE.
Sometimes life bends and gives you a new direction and new battles to fight. We will all face our own hardships. Life is beautiful but not always easy. Our mission is to help Charley and others in need of something good to MAKE IT COUNT.