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Rare Disease Day 2024

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  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

SMAS Day 2024

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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

Love Shouldn’t Leave Bruises

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  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

It's Just Growing Pains

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  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

Disability in an Ableist Society

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          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-Rhiannon h

Rare Disease Day 2023

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  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 line

Superior Mesenteric Artery Syndrome Awareness Day 2023

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  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

Vascular Compression Syndrome Awareness

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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

Dysautonomia Awareness Month

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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

Jayde's Trip to Chicago and the Fallout

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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 beaut

Superior Mesenteric Artery Syndrome Day 2022

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There are images, moments, and emotions from the past several years that are indelibly etched into my mind and soul. They are forever a part of me, a part of her and her journey. I began documenting Jayde's journey with the hope it could help another family traveling our same path. My heart smiles, knowing we have.  Because this battle is relentless, I chose to chronicle her story...the good, the bad, the ugly, and all the moments in between. I use words and photos, so on the days she feels as though she can't go on, she will see just how far she has come and find the determination to continue pushing forward, when with every fiber of her being all she desires is to give up. January 28, is SMAS Awareness Day. Though no two journeys are the same, I would like to share the necessity for SMAS awareness day. This is a glimpse into our journey - Jayde's journey. Since her diagnosis almost four years ago, Jayde-Rhiannon and I have cried a river of tears together and separately. E

Myalgic Encephalomyelitis puts the Chronic in Chronic Fatigue Syndrome

In our family, there are no truer words than, music is food for the soul. Growing up, I would fall asleep at night listening to my mother playing her piano. It was soothing. Anytime I am happy, sad, or feeling indifferent, music is a close companion, so it comes as no surprise that both my children feel the same way. Especially when it comes to live music. Green Day, Weezer, and Fallout Boy. They were all Jayde could talk about for weeks. Brett's mom bought tickets for Jayde, Brett, and his sister Greta to attend the concert at Hershey Park. I spent a few days ensuring Jayde had all the necessary supplies, from extra clothes and medications to plenty of frozen bottles of water and Gatorade and snacks in the cooler. She spent the week leading up to the show resting. Saving her spoons for the big day. I gave her a mani/pedi the night before and washed her hair. The plan was for Brett to drive my car so they could easily take Jayde's wheelchair, and she could lay in the back if ne

Allies of Love

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While running errands a few weeks ago, I ran into an old acquaintance. We were catching up with the usual pleasantries. “How is your son? Does he have a steady girlfriend?” I replied, “No, but he and his boyfriend have been together for more than a year and a half.” With a horrified and shocked look, followed by a snarky reply, she inquired, “Well, how is that?” I gave a quizzical glare until she finished. On some level, my mind knew where her comment was going, “Having a gay son?”   After what I am sure was an equally, if not more, shocked look in my eyes, followed by an image in my mind, playing out like a seventies cartoon of a baseball hitting her upside the head. I replied with, “I don’t know. What is it like having a heterosexual son?” My response left her speechless, and we soon parted ways.   Since that afternoon, I have not been able to shake the insensitive encounter from my thoughts. I am unsure if it was the underlying tone of her question that offended me. Perhaps it w

Not too Rare to Care

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  Superior Mesenteric Artery Syndrome, to the majority of the world these are merely four random words put together, having no significant meaning. To our family, these words are anything but random or meaningless. These words have taken us on a journey of discovery, fear, anxiety, relief, and sadness. Today is SMAS Awareness Day. It is the day where I wish I did not need to explain the purpose of wearing purple. It is the day when I wish the same wish as the other 364 days of the year - that no one else needlessly suffers from this disease and the ignorance that surrounds it.                                                Though no two journeys are the same, I would like to share with you the necessity of SMAS awareness day. This is a glimpse into Jayde's journey. Since her diagnosis almost three years ago, Jayde-Rhiannon and I have cried a river of tears together and separately. It was a diagnosis made sixteen years too late. I witnessed the light in her eyes extinguish when her

Meeting Dr. Rowe

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A diagram from Dr. Rowe shows 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." Though medicine has advanced since my childhood, some doctors practice medicine, while other doctors specialize in medicine. 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 exam with