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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

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

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

Coming Out Day

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Yesterday was National Coming Out Day. I cannot fathom ever forgetting the day Brady came out to me. If for no other reason than the importance of the event to my son's life. He was on his way home and called me, "When I get home can we talk?" His voice was heavy with apprehension and fear.  When he arrived home, he requested we go to my bedroom to discuss what was on his mind. I knew then this was serious. I braced myself for the worst. "Mom, I am gay." Not hesitating, I breathed a sigh of relief, "Ok." His eyes widened. He was in utter shock, "What? That's it?" "Yes. You are still the same sweet boy I gave birth to nineteen years ago. I loved you then, and I will love you until the day I die and even afterward. This does not change anything." The worst never came. Brady had lifted his anchor. I could see and feel this heavy burden drift away and disappear like a boat out to sea. Though looking back at those last words, his com

We're Off To See the Wizard

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  The elevator speaks with the sweet voice of a child. The brightly colored art is familiar, like an old friend. While we walk in together, as we have countless times before, she voices, "I am nervous." "I completely understand. After your last experience several weeks ago, of course, you are." She expresses her anxiousness again as the nurse asks questions and takes her vitals. I assure her, "Momma Bear is here. We've got this." Sadly, this was once the only place, other than home, where she felt comfortable and at ease, where people did not stare, question, or judge, and where she knew she could be among her own kind. That all changed six weeks ago. After the echocardiogram was over, I geared up for battle, much like I did a few years ago, right before Dr. Brenner sent us to Dr. Jelin. I straightened my back as I rolled Jayde into the exam room. After the pleasantries with Dr. Brenner, I proceeded to tell him about the past nine months and how Jayde

Sometimes Mamma Bear Needs to Make an Appearance

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  This morning, Jayde-Rhiannon and I spent an hour and a half with her primary care physician. During a phone call with my mom on Tuesday night, she inquired about Jayde's upcoming visit. I told her, "If you hear an explosion coming from the Cracker Barrel area of town, no worries, it is just your daughter." She laughed but wholly understood. Thankfully, there was no big explosion, just two much-needed mini outbursts - one from Jayde, the other from me. After Jayde informed her doctor, she did not feel she was receiving proper care. I went into great detail regarding the mismanagement of her health from almost all physicians involved. I finished with, "I am watching my daughter wither away right before my eyes. Either you will be the doctor who figures this out while helping her heal, or we will find a doctor who will. If this is out of your scope of expertise or you are too booked to take time to focus on Jayde thoroughly, please speak up so we can find someone wh

In A Perfect World, There Would be More Answers and Less Questions

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  I am beyond grateful to have my sister, mom, aunt, and mother-in-law's constant contact and their help behind the scenes, being my pillars, supporting me so that I can better support Jayde. It truly does take a village, and these women are my tribe. I know my post from last night was not easy to read. It was challenging to write and share. Yesterday was mentally and emotionally messy. In life, sometimes, you need to create more chaos to clean up the original mess. Jayde is still struggling to process everything happening inside her body right now, but she is mentally doing somewhat better. Witnessing lifeline helicopters flying in and out at all hours of the day and night helps keep her current circumstances in perspective. Regardless, we are secure in knowing she is where she needs to be to receive the best possible care. To help everyone following Jayde-Rhiannon's journey better understand how we arrived here, she has lost twenty-four pounds in the last three to four mont