Serendipitous Girl

  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...

  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 ...

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 ...

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 ...

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...

  It is ironic how one little word can have a variety of connotations. How one simple word can prompt your heart to sink or make it soar. Normal. What is normal? For years, we shunned normalcy. Normal is boring, be you, whatever you are. Why attempt to live your life fitting into a box society believes you should be in when you were born to stand beside it in all your glorious self? We adopted this mantra as we navigated raising an adolescent with mental illness. An adolescent who desired to be anything but himself. The mantra, which seemed to suit Jayde-Rhiannon, was from a favorite book, “My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage." Having been raised to believe that fitting in was necessary, I wanted the opposite for my children. I wanted them to understand it was all right to be who they were, never fearing to say what they felt. This would come back to bite me many times as their personali...

There they are, the words I am not supposed to utter. Nonetheless, the unspeakable phrase comes rushing out of my mouth, much like a dam that has broken. Fortunately, my daughter and I are at opposite ends of the house. She is safely out of earshot when I screech, “I GIVE UP!” I am unable to re-cork my explosion of  words. Instantly regretting my emotionally charged outburst, it becomes a cloud of guilt cascading over me like a waterfall.  Though it can be daunting, caring for a chronically ill child requires you to keep your wits and maintain composure whenever possible. You learn to master the art of squashing the varying emotions deep below the surface. Even when it feels almost impossible, somehow, you learn to figure it out, and it becomes your new norm. I walk out onto our deck, allowing the necessary tears to fall, collecting myself before re-entering our home. A  few days before my outburst, I sat in our living room with my phone on speaker, discussing the latest ...