Serendipitous Girl

Though they are seventeen years apart, from the time he was an infant, my daughter Jayde-Rhiannon and my nephew Stephen shared an undeniable connection. As Stephen aged, the pieces of the puzzle began to slide together. It has been over twenty-five years since my son Brady was in Kindergarten, and I began volunteering in our school district. In that time, the world of Autism has come so far. There was this little girl I regularly worked with. Not long into the school year, I remember asking her aid what she was diagnosed with. She brusquely responded, "We don't know. She is a tough nut to crack." The aid's response saddened and angered me. I quickly informed her that the idea of any child being described this way was unacceptable.  When Jayde began Kindergarten, there were a few autistic children in her class. Two of the autistic classmates were sweet and responsive, while one was primarily nonverbal, headstrong, and occasionally combative. I quickly understood I coul...

  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 ...

  There was a time when I heard the word rare, and my mind immediately thought of something beautiful, special, and unique. Anytime I look at my brave daughter, I know I am not wrong. However, when it comes to a rare illness, rare is also complex and frustrating; beating your head against a proverbial wall and shouting until your voice is hoarse–to bring attention to the medical community about something invisible to the even trained eye battle. Rare is understanding for every good day. There is a slew of bad ones waiting to wreak havoc. Rare is the nurse who is a caregiver, therapist, friend, and family all in one beautiful person. Rare is the husband and father who struggles with his own pain every day yet still takes care of his girls. Rare is our way of life. Today, across the world, is Rare Disease Day. In medical school, doctors are taught when they hear hoofbeats, they should look for horses, not zebras. This analogy refers to horses being common while zebras are rare. This ...