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 ...

          Coming to terms with the fact my daughter is disabled was an emotionally challenging road. Although I rarely discuss it, there are still days I struggle with the reality that is her life. A significant part of that struggle stems from the ignorance in the world around us, whether that ignorance is in the form of attitude or lack of education. Today, compliments of the rantings of a political commentator who needs to check her attitude and gain some education, I am fighting the struggle. Last summer, one of Jayde's healthcare professionals, attempting to justify why she felt Jayde no longer needed care, stated, "She went to Chicago, so I assumed she is doing better." If you follow Jayde's journey, you witnessed a glimpse of what it took to prepare her for that trip. Besides being infuriating, the comment was ableist. However, it wasn't the first ableist comment our family has encountered. Sadly, I'm confident it will not be the last.  Jayde-Rhianno...

  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 ...

October is Dysautonomia Awareness Month, and October 25 marks the annual POTS awareness day. Just as no two journeys are identical, the path to a POTS diagnosis is different for each patient. However, as Jayde-Rhiannon and I have discovered, the lengthy road to a diagnosis is usually full of speedbumps and hairpin turns. A month shy of turning forty, I had a total hysterectomy. It was a necessary evil. While taking care of certain parts of my health, my surgery threw me headfirst into menopause overnight. Menopause really should not be a taboo subject. If it weren't, maybe I would not have been surprised by the alien that took over my body, but that is a subject for another day. Insomnia and hot flashes were the worst and lingering side effects of my body laughing and shouting, "You are no longer in your twenties." However, on the plus side, I was told the migraines I had experienced since I was six should see a drastic improvement. Thankfully, they did. Gone were the two...

April 19, 2022 It's all a part of the journey, her journey. Compliments of Brett's family, this time tomorrow, Jayde and Brett will be in Chicago. For the first time, Jayde will be flying while accessed. Mama Bear is excited for her yet terrified. It was a rough morning. She has her gummies to help with the pain, nausea, and anxiety while flying. Here is hoping her experience with the TSA is better than when we flew to California, and they do not grope her port again. April 20, 2022 Thank you, everyone, for the comments on my prior post and texts from my dear friend checking in on me last night and this morning. This is Jayde-Rhiannon's first significant trip and flight without us. This morning, Brett's mom, Nicole, drove them to the airport. Then, TSA Cares ensured they made it through security without incident. No groping was involved. Jayed and Brett arrived in Chicago before 1:20 our time. For the next five days, Jackson and I are empty nesters. Have a blast, my ...

This is the speech I was honored to present at last night's Make-a-Wish Cheers for Wishes Gala. I am not the most eloquent of speakers, but since I am a passionate writer, I decided to put pen to paper to help you envision how our family arrived here tonight. While I cannot convey to you what it feels like to be a wish child, I can tell you what it means to be a wish mom. Our family's story is one of hope—of losing hope and then finding it in the most unlikely of places. The word rare is defined as something unusually good or remarkable. Yet, when you combine the word rare with the word illness, you quickly find yourself adrift, desperately searching for answers. In our daughter's journey, we discovered many doctors were hesitant to admit they did not understand what was wrong with her. This behavior only compounded the frustration we experienced from not having answers. However, when your child is sick, that once pointless frustration transforms into sheer determina...

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...