Serendipitous Girl

  It's funny how ten people can hear the lyrics to the same song and interpret the words ten different ways. The first time I heard "Footprints on the Moon," I sobbed. The only person or thing I could envision was Jayde and her journey. I look at these pictures and am abundantly thankful for how far she has come. Still, I carry a hope that the brilliant doctors will soon discover the genetic links necessary to crack the elusive code, changing the face of medicine and our lives. I understand how fortunate Jayde is to have been placed with Johns Hopkins Children's Center. My immense gratitude for the few doctors who made it possible to still see those bright green eyes every day never wanes. To the average person, Rare Disease Day is just another day, yet to our family and many like us, it is 365 or, in this year's case, 366 days a year. There was a time when I heard the word rare, and my mind immediately thought of something beautiful, special, and unique. Anytime ...

When I discovered December was Vascular Compression Syndrome Awareness month, my first thought was...Ugh, it's December, the holly jolly month. But as our family all too well knows, these syndromes, their symptoms, and the hell they wreak NEVER take a break. Over her twenty-one years, I have begged, bargained, and pleaded. Still, her birthdays, school events, Halloween, our birthdays, vacations, Thanksgiving, milestones, Christmas, and every other day in the calendar year have been affected. The first time you hear the words, "It is better to have a thin child than one who is obese," you cringe. The third time you hear those vile words, you find there is nothing charming left within you to give. When doctors refuse to listen, you learn to push harder. You learn to be blunt because you only have fifteen minutes to make this doctor comprehend what your child lives through every waking and sleeping minute of her life. In those fifteen short minutes, you also know if you will...

She is graciously composed. Inside, dying to scream at someone. Anyone. The entire world. Her misty eyes speak a thousand words. Words only I can hear. Though she is hesitant, she is learning to speak out, allowing her voice to empower her. When she cannot, I am her voice. I am her advocate. There is nothing I would not do to remove her pain and the torture of the many tiny needles. The nurses fully adopt the mantra, if at first you don't succeed try, try again. It's time to bring in the backup nurses. This is where I pointedly remind my seventeen-year-old, in front of the frustrated crew assembled before her, "This is YOUR body. Only you get to decide when you've had enough." Today, it only took three nurses to progress. This is why an IV team is necessary. It will not be long before clouds of blue and purple reach the surface of her translucent skin, another blunt reminder of her body's inadequacy. She stares out into nothing as the music plays on. For today...