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...

Over the last eighteen months, I came to truly know a man I could only dream of having in my life—my Dad. Finally, he wasn't just the Dad I wanted, but the Dad I needed. He had come and gone too many times. Now, it didn't matter why he had returned to our lives. It just mattered that he did. Through our countless hours of conversation, I finally understood why he was the man he was, which made coming to terms with our sometimes volatile relationship much easier. Yesterday, my Mom said, "Take time to process and feel what you need to feel." I told her, "I need a month or two alone in a tiny, secluded beach town where I can just listen to music and write." I've been through enough death and grief to understand the process is anything but linear. This past week, going through my Dad's things has been a rollercoaster of emotions. He saved everything. At first, it was almost annoying, but I couldn't find it in me to be annoyed—only sad.  I know that h...

The day after finding out my Dad had passed, my best friend checked in on me, "How are you holding up?" My answer was simple, "I'm not." I told him, "I am blocked. I can't write." A few minutes later, I scrolled through my music library and found my muse—the words and music of David Gilmour and Rodger Waters. As the music of Shine on You Crazy Diamond began, the tears and words magically flowed like a fountain. Today, we celebrate and remember the man, the myth, the legend—my Dad, Bill Garrett. My Dad was an enigma. Quirky even. He marched to the beat of his own drum, living life on his own terms—even until the very end. I've met many stubborn individuals in my life, but I can unequivocally say he was the most headstrong, stubborn person I ever knew. It was a blessing and a curse all in one. We often laughed about nature vs nurture and our shared traits. He was proud to claim he generously shared that headstrong trait with me and his grandchild...

Today, I received a phone call that no amount of time could prepare me for. We often laughed about nature vs. nurture. He gave me a passion for music and concerts. "If you aren't in the first few rows, you might as well stay at home and listen to the radio." Dad, you gave me my stubbornness and your smile. I will miss our three-hour minimum phone calls, being able to talk about everything and nothing at all, your pearls of wisdom, your stories, and your sense of humor. Your laugh was the best. I love you, Dad. #ForeverYoung #MyDad

  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 ...

Today is purple day in the Jackson household, but not because the Ravens are playing. Today is SMAS Awareness Day. Each year, I try to give a glimpse into Jayde's journey with this disease. Superior Mesenteric Artery Syndrome. What can I tell you that you haven't already heard? SMAS is so much more than nausea, pain, vomiting, and weight loss. This disease is relentless, it's frustrating, and it is heartbreaking. That is on a good day, and I am only the mother and caregiver. Yes, those are two very different roles, and I will be the first to admit that on the bad days, I find it challenging to figure out where one begins and the other ends.  About a week ago, I told a dear friend, "If I don’t answer when you call, it's because I am having trouble getting my arm out of the straight jacket."  The culprit of my most recent spiral into madness—Jayde's port. Along with her many illnesses, Jayde has Factor V Leiden Mutation. This is a genetic mutation that cause...

  1 in 3 women and 1 in 4 men are assaulted in their lifetime. Each year, over 3.6 million children are victims of child abuse. In the span of one minute, nearly 20 individuals are assaulted during a domestic violence attack. I lost track of how many times I was one of those individuals. Frankly, I never kept count–the black eyes, broken noses, taped-up broken glasses, bruises, concussions, and welts seamlessly blended together through the fabric of time. From the age of seven until the age of twenty, this was my life. When I should have been in gymnastics class, I was forced to hide or lie by stating, "I was hit in the face with a softball."  Yes, there were moments, and even months, when my body was not used as a punching bag, but that is when verbal and emotional abuse took over. I mastered the art of walking on eggshells. It took years for me to comprehend that my abuse was not my fault. The day I realized I didn't deserve to live a life riddled with the physical and ...

  The journey to understanding is often filled with misconceptions, fallacies, and ignorance, but when you arrive at your destination, everything seems clearer. Almost as though the fog has lifted and from atop the mountain you can finally view everything below. Most of the time, when I share about our journey with chronic illness, it is from the vantage point of the mom and caregiver. However, when it comes to Ehlers-Danlos Syndrome, this is a journey I've been on my entire life, even when I was unaware. Jayde-Rhiannon grew up hearing her doctors consistently state a phrase that made me cringe, "It's just growing pains." I cringed because, as a child, I routinely heard the exact phrase. I remember being in my early teens and retorting, "Well, I really need to stop growing!" When I was younger, I excelled at gymnastics. Friends thought it was neat I could do a split with the greatest of ease or contort my body with my legs behind my head. The most comfortabl...

          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 ...

  Jayde-Rhiannon's first Christmas was memorable. She was two months old, and we had been in our new home for all of five weeks. There was still much unpacking to do, and I decorated the best I could. Since I was not up to traipsing through a field, there was a Charlie Brown Christmas tree in the corner of our living room. However, none of that mattered. On Christmas Eve, our home overflowed with people carrying the title of aunt, uncle, mommom, pop-pop, grandmom, grandpop, and cousin. Jayde was dressed in the sweetest green velvet dress, resembling a human baby doll as she was passed from relative to relative. After the past year, all seemed right in the world. In preparation for our joyous evening with our family, I timed Jayde's feeding so she would be good for the next four hours. The evening was perfect until it wasn't. Two hours into the festivities, Jayde threw up all over Chris. I didn't think her little body could hold so much fluid. She had never spit up befor...

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...

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 be...