Serendipitous Girl

  Can you imagine living your life being judged and discriminated against for the thing about you that makes you different and vulnerable? Thirty-five years ago, the Americans with Disabilities Act was enacted. July is designated as Disability Pride Month. It's a time to educate the public while promoting inclusion and accessibility for individuals with disabilities. I wasn't sure where I wanted to go with this topic, but two separate incidents this past year have taken up too much residency in my mind. One of them I wrote about in detail a few months ago. Now it is time to expel these lingering thoughts the best way I know how. You travel this journey long enough, and you develop a thick skin. However, that tough exterior doesn't stop the frustration when your child is consistently bullied or excluded because their abilities, or lack thereof, are not the norm. It's been our experience that many individuals who are eager to embrace diversity and inclusion don't want...

  July is Disability Pride Month, commemorating the Americans with Disabilities Act (ADA) that was signed into law on July 26, 1990. Until a decade ago, I took this law for granted. Sure, I had heard of it, but I was unfamiliar with its content. Inclusivity and accessibility are something most healthy individuals take for granted until they break a leg or need surgery. Then, the doors to a world of accommodations you pass by daily without consideration open. Our children are born, and we imagine what their lives will be like. Who will they become? What kind of hobbies will they enjoy? What types of friends will they have? What profession will they gravitate towards? You envision the places they will go, the things they will see and do along life's journey. In the end, none of it matters, only their health and happiness. Except what happens when health is not a part of life's plan? You begin to grieve the dreams you once had. Then you grieve for the dreams your child held dear t...

  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 ...

A diagram from Dr. Rowe illustrating  how Dysautonomia correlates and connects to most of Jayde's illnesses. Each trip to Hopkins is full of anxiety. We never know what will change or be discovered. Today's appointment felt like two lifetimes in the making. If I had to choose one word to sum up Jayde's appointment, it would be ' validating. ' Growing up, my joint pains were written off as growing pains. My migraines were dismissed as mere headaches. I stopped seeking medical treatment because I could not bear to hear yet again, "We cannot figure out what is wrong," or "It's all in your head." Although medicine has advanced since my childhood, some doctors practice medicine, while others specialize in it. When I realized Jayde was sick, I was determined my fate would not be hers. I refused to give up on her or allow any doctor to make her feel insignificant by dismissing her. Today was the culmination of all of that. Jayde's comprehensive ...

To understand the latest diagnosis, I need to go back a few years. This is an excerpt from December 12, 2015 It's been several years since Jayde was forced to give up taking dance classes. It was a difficult decision, but in the long run, the three of us knew it was for the best. As much as she enjoyed dancing and golfing, it was apparent her body was not a fan. So when she came to me and said she was trying out for the cheerleading squad, I was leery, but I certainly wasn't going to discourage her. The week before the tryouts, she began preparing herself by stretching, exercising, and keeping herself hydrated. The first night, she came home so excited. That spark in her eye and fire in her belly was reminiscent of her dancing days. I loved it. Day two was similar; she went on for almost thirty minutes about the session, but the embers were steadily fading, and she started a steady dose of Advil and Tylenol and requested an Epsom salt bath. On day three, she had a considerable ...

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...