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    Erica Deel

    What It's Like to Eat Out When You're a Supertaster

    Visiting from college, I was having lunch with my mom and stepfather at one of the approximately 50,000 diners in the state of New Jersey. I was finishing up a delightfully soggy plate of disco fries — french fries smothered in brown gravy and mozzarella cheese. It served as my perfect almost-last meal. My mom stared in disgust as I shoved another fry into my mouth. “I have no idea how you can eat that, with how food-picky you are.” “Hey, my ‘supertaster’ taste buds enhance bitter flavors. There is nothing bitter about this! Just cheesy, carb-y deliciousness.” Ah, supertaster. Such a silly word for an actual condition. But I relished finally having an explanation for my food-freakishness, courtesy of my Biological Psychology class: I had more tastebuds than the average person. There’s nothing super about this abnormality, though, other than making me miss out on things most people find delicious: tea, wine, grapefruit, yogurt, etc. What a terrible superpower to have. It mostly just singled me out as a freak in any social dining setting. A short time later, our meal was cleared, and dessert arrived. A portent of doom settled upon our tiny table as the waiter set a sundae dish in front of my stepfather. It looked like a dirt parfait with its beige-and-brown layers. At first bite, his expression changed to one that should only occur in a bed behind closed doors with my mom. “Here, hon, you have to try this,” he said, feeding some to my mom. At which point she proceeded with her own reaction that rivaled the infamous “When Harry Met Sally” restaurant scene. Awkward. After their mutual mouth-gasms subsided, the moment of reckoning had arrived. My mom twisted to me in almost slow motion, raising a spoonful of that suspicious glop to my mouth. “What is it?” I asked. “Just try it. You’ll love it,” Mom said. Famous last words. My taste buds imploded as a monstrosity of flavors descended on their fragile, unwitting existences. My tongue recoiled with the horror of what I imagined a Tide Pod smoothie tasted like. My stomach churned with the disgust of watching the guy in “Saw” hack off his own foot. I gagged through swallowing the lump of death. I grabbed the glass of water in front of me and washed out my scorched throat. “What… is… that?” My mom stared at me with a confused expression. “Tiramisu.” “Oh,” I choked out, “You mean just the amalgamation of the two most vile tastes on the planet: coffee and alcohol? Thanks, Mom! Are you trying to poison me?” “I’m sorry, honey, I should have remembered your condition. Here, water won’t get out that taste. Try this.” I took a swig of whatever Mom just handed me, and my taste buds gave a slight whimper and died. Tea. If looks could kill, my mom would know the same fate as my poor taste buds right now.

    Parenting a Child With a CHAMP1 Mutation: Fighting for Care

    After searching for answers for seven years, we finally a diagnosis. I truly appreciate what living as undiagnosed means for a family. However, I want to let people know that even when you get that diagnosis — especially an ultra rare one — it doesn’t stop there. We are one of only 41 families (that we know of) with a child affected with a de novo mutation of the CHAMP1 gene. We no longer live in the world of being undiagnosed, and for that I am truly grateful. We have our support network, those who were there before our diagnosis and remain beside us on our new journey. We now have all of our other “CHAMP” families who are walking on the same path as us, our champions guiding the way. With the diagnosis comes a whole new set of questions that unfortunately don’t have many answers. So we continue on our new journey doing the best we can with the information we have. We continue to fight — fight for services our children need and deserve. But as always, I ask myself, “Why? Why is it always a fight with the professionals for us to get what our children need?” I have a meeting next week to ask (again) why my nonverbal child doesn’t receive speech therapy. He uses an AAC device which, again, I had to fight for him to try. He uses this device well, however technology shouldn’t be the only answer. He uses some of his own versions of makaton (a language program). This allows him to have some words, though not many, and not all are clear. As the years have passed, he has added more sounds/words to his vocabulary (no thanks to any therapist I’d like to add). A short while after he was given his AAC device, he was discharged from a service that should have continued to support us. We were told he wasn’t completely discharged and we could always ask to be reassessed. I’ve had several discussions with them and have asked for this to be looked at again. I didn’t get the outcome I wanted. I have yet again another meeting and this time I’m not taking no for an answer. We are told we are now the “experts” on this diagnosis by our geneticist, as we have our support group. We hold the knowledge within our “CHAMP” community and we are seeing progress with the right intervention. They say knowledge is power, and in a world of so many unknowns, we know our kids inside and out and we need to be heard. Listen when we tell you that we know what they need. So, although they are true champs, the fight still goes on.

    What Sleep Paralysis 'Demons' Look Like, as Told by Twitter

      Waking up and temporarily not being able to move your body is already scary. But a tweet challenging social media users to draw their “sleep paralysis demons” highlights another scary element of a sleep paralysis episode. On Feb. 6, Twitter user Rachel challenged followers to share their sleep paralysis drawings. Her own sleep paralysis image depicts four characters in black and white — an insect-looking creature who, Rachel writes, “crawls on the ceiling,” a tall figure she labels as “loud and scary but harmless,” a smaller figure who just looks at her surrounded by flies and what she said seems to be the number seven. draw ur sleep paralysis demons challenge pic.twitter.com/iC6H7XkgH0— rachel ❄️ (@rhymewithrachel) February 6, 2019 The Twitter thread now has nearly 35,000 likes and 10,000 comments, including posts from others who have added their own creative depictions of their own sleep paralysis demon stories. heres mine. i drew this on my phone pls no judge pic.twitter.com/w47bH4C8My— Laværis (@lavaeris_lavvy) February 6, 2019 i get drug(medicine) induced sleep horrors. i can only sometimes interact with/during them. pic.twitter.com/YbzLDR80br— bear (@dogtreat_) February 6, 2019 Mine is the dude in the back, he likes to mimic the voices of my loved ones and say really mean things to me. I call him Shadowman. He just needs some love.The other ones are just personifications of my narcolepsy and cataplexy haha pic.twitter.com/F1djtFQzJr— ????Cryptid Colleen???? (@Slothakiin) February 6, 2019 mine looks like a dumb pirate pic.twitter.com/jwC23jJF0z— Levon Jihanian (@ForkFrenzy) February 6, 2019 It’s not surprising so many people would represent their sleep paralysis with sometimes threatening and intrusive images. Sleep paralysis is a well-known phenomenon across many cultures. When people report thinking they were abducted by aliens or possessed by demons, it’s sometimes believed to be the result of sleep paralysis. What Is Sleep Paralysis? Sleep paralysis can occur when you wake up before your body moves out of rapid eye movement (REM) sleep, the last of a full five-part sleep cycle. During REM sleep, your mind becomes active and you’re most likely to dream. To prevent your body from acting out your dreams (like running away from a threat, for example), your brain disconnects its motor neurons so you can’t move. Alcibiades Rodriguez, MD , medical director of NYU Langone Health’s Sleep Center, told The Mighty that when you wake up suddenly out of REM sleep, however, your body may remain in its paralyzed REM sleep state. As a result, you will be awake and conscious but completely unable to move your body for a short amount of time, usually less than a minute but up to a few minutes, Rodriguez said. Sometimes during an episode, you might also feel like you can’t breathe or have hallucinations, essentially dreaming while awake, according to Rodriguez. These hallucinations could be the sensation of an evil presence (intruder hallucination), feeling like there’s something on your chest (incubus hallucination) or feeling movement when there is none (vestibular-motor hallucinations). People often refer to these hallucinations as sleep paralysis demons. How Common Is Sleep Paralysis? While an estimated 30 percent of the population will experience an episode of sleep paralysis in their lifetime, recurrent episodes may indicate an underlying condition. It’s most strongly correlated with narcolepsy, a sleep disorder that causes you to fall asleep during the day, among other symptoms. Sleep paralysis also seems more common if you have a mental health condition with an anxious or fight-flight component such as panic disorder or post-traumatic stress disorder (PTSD). Other studies suggest it may happen more often along with substance abuse or some chronic illnesses. There also seems to be a genetic component related to who experiences sleep paralysis. How to Cope With Sleep Paralysis To cope with sleep paralysis, Rodriguez recommends not sleeping on your back when possible and taking steps to reduce your anxiety overall. If you have recurrent episodes, check in with your doctor to evaluate for sleep disorders like narcolepsy, mental health conditions and other potential underlying causes. You may also be prescribed a low-dose antidepressant . Though many expressed fear and discomfort about sleep paralysis hallucinations and “demons,” some who commented on Rachel’s tweet found other creative ways to manage sleep paralysis. S. R. Jones said, for example, that turning their scary hallucinations into something more tangible was useful. “I grew up with sleep paralysis,” Jones wrote on Twitter. “I coped by making these things my imaginary friends. That is largely why I am the way I am now.” Ah, he’s an OK guy really! ????(I grew up with sleep paralysis- I coped by making these things my imaginary friends. That is largely why I am the way I am now… ????) pic.twitter.com/lSAWhzS94w— S. R. Jones (@AegisImmemorial) February 6, 2019 Have you ever experienced sleep paralysis or sleep paralysis hallucinations? Share your experience with The Mighty’s community: Does anyone here experience sleep paralysis? #sleepparalysis Article updated Aug. 30, 2019

    How to Deal With Doctors When Your Child Has a Rare Condition

    My daughter was born April 24, 2015. I was able to hold her for a total of five minutes before the nurses scooped her out of my arms and took her to the small NICU they had. My husband and I had no idea what was going on. I was scared, worried, and downright exhausted. Fast forward two hours later, when we were taken to Johns Hopkins Children’s Hospital in Baltimore, Maryland. We were standing in her NICU room in silence scuffling back and forth to give the nurses room to do what they needed to do as they hooked her up to numerous machines. My heart was breaking with tears streaming down my face as my child was crying and all I wanted to do was hold and comfort her. The nurses finished putting in the IVs and monitors and left us to “relax” a little bit. We settled down in her room. That’s when my husband and I made a promise to each other: no matter what they say, we as her parents will make the final decision. So my husband and I got down to business. We looked up all the symptoms and read hours and hours of medical papers and articles. In one month we self-diagnosed her with solitary median maxillary central incisor syndrome (SMMCI). SMMCI is a rare condition where the face is centralized and instead of having two front teeth she has a special “unicorn” front tooth. The one out of 200,000 recorded births we read about were all very different. Some had severe mental disabilities and some had none at all; the only defining link to this syndrome was the one front tooth and tiny nose. We figured this out a month before the genetics department told us. During our next appointment, they sat us down in a room told us to prepare ourselves for the news. We blurted out that we already knew. We told them what they thought it was and they said we were correct. Then they proceeded to tell us the she will without a doubt have failure to thrive. We were outraged because we knew better than that. In the span of three months, my daughter had three different surgeries because she could not breathe through her nose since it was so tiny. On the fourth and final month they suggested they give her a tracheotomy and put her in a home. My husband and I would have none of that. They sent in doctor after doctor to tell us the same thing, that she would not have any kind of “normal” life. At that point, we kicked in our promise in full gear. We demanded to speak to the head ENT in the country and after few days we finally did. He sent a resident who was working under him and he told us the same ridiculous thing all of the other doctors had been pushing on us. They would tell us that they’re doctors; they went to school for this kind of stuff and they knew what was right for the patient. By this point, we were extremely fed up to the point I was screaming at the top of my lungs to speak to the actual doctor. I let them know I was not going to leave the room until I do. He finally came, and we told him what kind of surgery we wanted done on our daughter. He said the procedure was unheard of for an infant. We told him that while we understood, this is what she needs to have done so she can live at home with her family, away from this hospital. After a few more days, the head ENT came back and he agreed to do the surgery. The surgery was successful, and after four months of living in the NICU– that’s 124 days –our daughter was finally able to come home with us. My advice is this: yes, they are doctors, and yes, they go to school for this kind of stuff for years — but they know your child as nothing more than a patient. You are the parent. Never forget this. Do not be afraid to speak up and do what you think is right. If we would have just done what the doctors told us to, our daughter would be in a home away from us being taken care of by strangers. Instead she’s here in our home thriving day by day. She can’t speak and she can’t walk just yet, but she can sit up and she can crawl and she can babble and laugh and cry and eat. I believe children are strong and resilient little angels. At a young age, they cannot speak for themselves, so it is your job to do it for them. Don’t give up. Don’t underestimate your child. Give them a chance that they so rightfully deserve.

    Lisa W.
    Lisa W. @lisamighty

    Parenting a Child With Linear Nevus Sebaceous Syndrome (LNSS)

    When our son was diagnosed with a rare genetic condition shortly after birth, the first question my husband and I asked was, “What do we do?” The answer will not surprise anyone who has dealt with a rare illness: wait. Baby Z was born with a large growth on his head, a small hole in his head, and three growths on his right eye. If these turned out to be his only issues, we were dealing with best case scenario. But the combination of these symptoms meant he had linear nevus sebaceous syndrome (LNSS), a disease that usually impacts multiple organ systems in severe ways. In many babies with such a large nevus growth on their heads, the brain inside the head is affected in the same way the outside skin is – as one doctor put it, “like scrambled eggs.” So when we asked the doctor who made the initial diagnosis what to expect, she said, “You wait for things to blossom.” I now hate the word blossom, along with the phrases “Vegas odds” and “crystal ball.” Like with many rare diseases, there is no one doctor who treats linear nevus sebaceous syndrome. For Z, a geneticist looks at the big picture, but doesn’t treat anything. A pediatrician manages his overall health and keeps an eye out for anything unusual. A dermatologist treats the exterior skin issues. A neurosurgeon and craniofacial plastic surgeon monitor the hole in the head and plan the surgeries needed to remove the growth. A pediatric radiologist oversees the complicated process of performing MRIs on a baby. An ophthalmologist regularly examines his eyes to makes sure the growths aren’t interfering with his vision, and will perform eye surgery to remove the growths once he’s old enough. If other symptoms present, other specialists are added. Our job as parents, the doctors said, was to love our baby. But the overwhelming love I’d felt since his birth had instantly transformed into an equally powerful feeling of helplessness and fear. Was his forehead uneven? Did that mean he had cranial asymmetry? Was he on the short end of the growth chart because his bones weren’t forming properly? Did he just have an infantile spasm – or was he simply reacting to bumping his knee on a table? As he grew older, each milestone became a victory. Every mom feels excitement and pride when her baby sits or babbles for the first time. I felt soul-shaking relief. I cried when he rolled over for the first time, and when he started crawling, and when he got his first tooth. And still I waited. I felt guilty that he was healthier than so many kids with this illness. I felt resentful that he wasn’t as healthy as the other babies around me. I felt grateful with each day that passed. There is no set timeline for manifestations of this syndrome, but the general sense is that he’ll be “out of the woods” if serious symptoms don’t present before his first birthday. He’s 9 months old now, and seems to have been spared the worst: no neurological problems or development delays, no vision impairment or cancerous tumors in his eye, no issues with his teeth, bones, or muscles, no seizures or infantile spasms. The very best case scenario. Yet being “out of the woods” does not mean his medical journey is over. Over the next few years, he’ll have a series of surgeries to remove the large growth on his head, ear, and neck, which has the potential to turn into skin cancer. Each of these procedures will involve several months of preparation that entails inserting a balloon under his skin and pumping it up with salt water each day to stretch the skin so it can be pulled over part of the growth. He’ll also have surgery or surgeries to remove the growths on his eye. We are grateful, but we also are aware that for Z, the hard part is still ahead. So we try to teach him resiliency for when he’s in pain or exhausted from medical procedures. We work on building his confidence so that he can better handle possible teasing over his appearance. We expose him to lots of different situations and people, in the hope he’ll be comfortable in a hospital staffed with caregivers who are strangers. But mostly we focus on the day-to-day life of raising an incredible kid. Through the exhaustion and exhilaration of everyday parenting, we do the best we can to surround him with love – because that’s our job.

    B.J. Schmeisser

    Why I Feel Like a Chronically Ill Underdog

    Today, I saw an infectious diseases specialist. She was lovely, caring, and invested in my care, but in the end, this appointment was just another metaphorical box to tick off in my quest for a diagnosis. You see, I’m sick and have been for a long time according to this lovely doctor – sick since 2012. I couldn’t believe it. Sick since 2012? According to my medical chart’s hard data of vitals and lab work, I’ve been sick for over five years but, apparently, chose to ignore it. Why would I do this? Why would my doctors do this? What kind of reckless game was being played with my health? Or was I just doing what I had been conditioned for years to do – ignore symptoms? That’s right. You read that correctly. The conditioning borne through years and years of figure skating and familial reinforcement led me to think that my symptoms weren’t anything to be alarmed about. Part of me hears AC/DC singing “Stiff Upper Lip” when thinking about how I’ve been conditioned to look past the ephemeral moment and go for that golden ring just beyond my reach. “Fever? Oh, it’s probably nothing. I just overdid it today…”“Sore throat? C’mon! It’s allergy season…”“Headache? Hah! Who doesn’t have one…”“Fatigue? I’m just not eating well enough. I’ll add some magnesium and zinc to my dinners…” And on… and on… and on… “Complexion? I know it’s pale. I just need to do this or that or the other…” So many of us are conditioned to overcome. We were the underdogs in 1776; yet, we prevailed! And, my fellow Texans would shout, “ Underdogs? Remember the Alamo!” We are a country and society that loves a good underdog story. However, when it comes to chronic illness, it’s not a battle of an underdog. It’s just not that black and white. The battle, in my case, is trying to discover what on earth is wrong with me. It’s shuffling between specialists – all of which are convinced that I’m sick but can’t prove what it is, and that is frustrating because all of these learned doctors can’t provide any relief without a definitive diagnosis. It’s moments like the one with another specialist whom shared that he was sure what label belonged on my illness, but couldn’t provide said label because it isn’t his field. Stiff upper lip? Forget it. It’s a rigid, clenching feeling just above your stomach and below your heart that threatens to loose itself, that must be reined in and contained lest words that will be regretted will fly. That’s the moment of strength – when one contains the ever waxing and waning frustration that dwells in the center of your chest borne of chronic uncertainty. Chronic illness is an exercise in chronic uncertainty. We wait and wait, all the while jumping through the required medical hoops that are gapped out by availability of the specialist and all the while getting sicker and sicker. Recently, I was talking with my therapist about my experience. While this man’s “poker face” is good, he couldn’t hide his own frustration on my behalf. He said something along the lines of, “What if they can’t find a diagnosis?” To which I replied, “Oh, they will when I’m on an autopsy slab.” In the nine years that I’ve been seeing him, he’s never seen or heard anything so grim that wasn’t followed by a dark smile and a stab at humor. That moment was the single exception in nine years. Hopefully, I’m wrong. I want to be wrong. I want to keep fighting like the underdogs who came before me. Diagnosis or no diagnosis, I want the treatment for what three different specialists strongly believe is my diagnosis, but I haven’t jumped through enough hoops or spent enough copays or given enough wait time at appointments or have had enough blood draws for lab work or whatever nonsense awaits me while unravelling the enigma of my health. While I didn’t start pursuing this issue until the end of May of 2017, because I was too sick to even do a load of laundry at times, I’m still hopeful and grateful to be taken seriously. In the end, I just want relief and would be happy with just half my energy back. Whatever autoimmune label awaits me, I just want the treatment – but, no label means no treatment. So, I try to keep the underdog spirit alive by getting up, proverbially dusting myself off, and going to the next appointment. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Stockbyte

    Laurie Krause

    MALS: Strangers React to Daughter's Food Celebration

    I encouraged my daughter to order all the items on the breakfast menu that sounded good. We were sitting on the end of an L-shaped bar at the local family restaurant, and soon the waitress brought strawberry waffles, potato pancakes, eggs with bacon, and biscuits with gravy. Our plan was for her to have one or two bites of each, then take it to go and let her graze the leftovers for a few days. Makanda’s plates overflowed into my part of the bar, but that’s OK because I just had coffee. There were two more people seated to my right, and it was clearly a show when the waitress brought all of the food. Makanda was sporting a huge smiling, I had tears in my eyes, and the waitress was very proud of her offerings. The lady one seat over had a confused look on her face and commented to me, “You’re going to bust her out of those size-two clothes.” We both smiled at her comment and took turns telling our story. Makanda had not had food like this for three years because she has been fighting pain, nausea and vomiting. We were having a food celebration today because she had just had a surgery called a median arcuate ligament (MAL) open release. Makanda was born with her diaphragm too low and this ligament, the MAL, was rubbing on her celiac artery and compressing it with breathing and eating. One day, December 10, 2013 to be exact, she started to vomit as if she had swallowed poison, retching and dry heaving if she just breathed in the wrong way. We had searched for answers, seeing countless doctors, running countless tests and trying countless drugs to stop the pain and nausea. Makanda was a big, beautiful woman starting law school when the problem started; she lost 150 pounds over the next three years as we struggled to nourish her body. “So today she can eat again, and we are living it up!” I exclaimed to the waitress and the man and woman on my right. The woman seemed horrified that I would support weight gain and made several unsolicited nutritional recommendations. Her own issues with weight seemed to be coming through, and we didn’t even engage. We had been living with life or death for so long, her worries seemed superficial to us. We just continued to celebrate with each bite; we talked about the flavors she had missed and I cried tears of joy! I paid our bill, and Makanda apologized to me for costing so much. I cried again and told her it was worth every penny to share these moments of happiness. After barely making a dent in the food, it was time to box it up and leave. We said our goodbyes to the two people who listened to our story and headed for the door. The waitress stopped and handed me a credit slip for our bill, telling me an anonymous person had paid the bill for us. I was stunned. I walked Makanda out to the car and got her situated, then went back in to the quiet man who had sat beside me through breakfast and told him thank you with tears in my eyes. He stood and hugged me and said, “Every year I try to do something nice for a stranger, and this year was almost over. Your story was worth waiting for.” Images via Contributor. A version of this post originally appeared on Derailed. We want to hear your story. Become a Mighty contributor here .

    Pamula Floyd

    Coping With Seasonal Affective Disorder During the Holidays

    It’s that time of year: the time when we’re cooking, cleaning and entertaining more than usual. We’re traveling and shopping, all on top of everything else we tend to do every day without fail. It’s also when our days get shorter and our nights longer. And for some of us, that means our eyes are not twinkling and our dimples are not merry. Instead, it can be hard to be excited about anything. All many of us really want to do is wrap up in a cozy blanket with a cup of tea and a good book. Even though voices are tempting me to be jolly, inside my soul is sad and retreating. Psychology Today reports an estimated 10 million Americans have seasonal affective disorder (SAD). This time of year used to be my favorite. I looked forward to the cold weather change, the sight of twinkling lights on houses and the adornment of red and green in the stores. People always appeared to be walking a little lighter and behaving a little friendlier. I looked forward to time with relatives rarely seen and succulent dishes prepared only on special occasions. But something happened as I got older, and all of that changed. It got to where my depression would worsen. I became sad — the kind of sad where some days I just didn’t bother to get out of bed. My anxiety increased. Just the thought of going to the grocery store for bread and milk caused my anxiety level to rise. My brain would become blank, and I couldn’t carry on conversations. No amount of holiday tunes, apple pie, or bright lights helped to ease my struggle. Even though my symptoms of SAD have never truly gone away, I do wake up determined not to let it get the best of me. As much as I’m not a fan of the sun, I force myself to get outside for at least 15 minutes each day (though 30 minutes is most often recommended). I pet my dog more than normal; pet therapy can be a wonderful thing. I have found watching comedies puts a smile on my face and in my heart, more so than reality TV housewives do. During a moment of SAD, they are only a reminder of what I don’t have. The thing I want my family and friends to remember most is that in a SAD moment, I won’t be the life of the party, and it may not make sense to them, because it doesn’t make sense to me. SAD is not something I can just snap out of. When I force myself to enjoy holiday activities, that will usually mean I’ll become even more fatigued and will need a nap. I may even go to bed early. The thing to remember is I am trying. And that’s all I can do. Image via Thinkstock. We want to hear your story. Become a Mighty contributor here .

    Michelle A.

    Cleft Lip and Palate: When My Son Felt Like the Only One

    Our first son was born eight weeks premature. We were warned he might not cry and would immediately be taken to the NICU. The words “He is out” and a small cry were all I needed. With worried eyes, my husband said something was wrong with his lip — but I heard his cry. He was fine! A nurse let us know he was stable but had a unilateral cleft lip and palate. We had no idea what that meant, but she explained it and reassured us he would be fine. Our son had two surgeries before he was 3 months old to repair his lip/palate. Over the next seven years, he had a few ear tube surgeries, started orthodontic work and he led a pretty typical life. However, at age 8, he came home upset about kids making fun of his appearance. He told me he felt like he was the only one in the world with his condition. I was heartbroken! In our eyes he was perfect, but I didn’t know anyone else with a similar condition either. We visit our craniofacial clinic yearly, and this year was the first time they had a psychologist. I filled out the paper about his feelings and assumed he was happy with no problems. However, she asked him questions (he avoided eye contact), and this is when I realized how much the bullying has had an effect on him and that he might not be as happy as he portrays. She explained he should not feel this way and that we should seek help. She also warned the services would mostly likely not be covered by insurance. We immediately sought private schools, but we couldn’t afford it. In a quest to find someone like him, I contacted the clinic and joined social networks without success. I then found the Children’s Craniofacial Association (CCA), which holds a retreat each year for kids like my son. I contacted them and immediately felt welcomed. We were sent brochures on the organization, information on his condition and the retreat, and the book “Wonder” by R. J. Palacio, which tells the story of a fifth grader with a facial difference and his fight to fit in at a new school. The book is now being turned into a movie. I showed my son, and with tears in his eyes and a smile he told me, “Mom, now I don’t feel like the only one!” Those words hit deep, and I knew I had to figure out a way to get him to the retreat. The webpage to register for the retreat said we could apply for state funding. We applied and were denied. How could this be? So many people have donated to charities in my son’s name. With the emotional support of many and financial support from some, we found a way and made reservations. We also read “Wonder,” and it gave my son a sense of belonging. This was a book he could relate to, the bullying especially. The retreat was wonderful. They had a magician, pool party, trip to the beach, and more! The children felt comfortable around us and freely offered hugs. The best part of the retreat, my son said, was making a local friend and leaving with an understanding that he is not the only one and there are other kids facing similar challenges. Fortunately, the retreat will be held locally for us next year in Reston, Va., so our entire family can attend. Shortly after arriving home from the retreat, our orthodontist informed us his bone graft surgery needed to happen within two months or we would risk losing his tooth. Since insurance premiums went up, we went with a PPO with in-network doctors. Going with his original surgeon meant we would pay 100 percent out of pocket, including a couple nights’ hospital stay. Continuation of care would only be considered after I contacted all (79) in-network doctors. I do have an open mind, but I don’t want just anyone operating on my son. After many unreturned phone calls and failed consults with surgeons not willing/able to operate, we found Dr. Renee. She was more than wonderful and completed his surgery on September 15. She left the following Sunday for a mission trip to help those in need in Venezuela. In anticipation of the surgery, we created a P.O. Box for him. He received gifts, cards, and letters from friends and strangers. CCA was the first care package he received; it included a quilt, homemade cards, glow glasses and such. These things helped ease his mind before surgery. Again, CCA, our new family, was there for us! I often feel things work out for the best, but wow, what a ride! Our son can’t be the only one in this world, and we can’t be the only parents fighting this fight. He has a relatively common birth defect, with 1 in 700 people born with a cleft lip and palate. My son often asks me if he can meet Auggie Pullman, the main character from “Wonder,” and I explain that he is Auggie! We are now looking forward to the upcoming movie. Unfortunately, his school did not apply for the Target grant, which was a sponsored field trip for him and his classmates to see the movie on opening day. I never received a response from the Board of Education, but the principal said it didn’t fit into their curriculum. I’m not quite sure I will ever understand that when they have anti-bullying signs everywhere in the school. Teen suicide is up. What would an expenses-paid, half-day field trip hurt? Oh well, our son is worth the fight. We will continue our quest to make sure he is not bullied and lives a happy life. He is also the proud big brother to twins, a brother and sister he prayed for. If you would like to help, please feel free to donate directly to CCA in Kyle’s name or send him a letter: Kyle, P.O. Box 216, Pomfret, MD 20675. Image via Contributor. We want to hear your story. Become a Mighty contributor here .

    LaTaasha Byrd

    Being a Special Needs Mom on Super Tuesday

    I checked the clock: 8:07 a.m. I have roughly 20 minutes to get the little girl who lives in my house dressed, hair done and out the door. Will I make it? Heaven only knows. I have everything laid out next to me on the couch: lotion, underwear, outfit, shoes and socks, hair bows, brush, comb, spray bottle. My oh my, this little girl has a glam squad getting her ready for kindergarten. It’s a good thing her mommy is a stylist because this level of suitin’ and bootin’ is usually reserved for those who regularly walk a red carpet. You couldn’t tell her that, though. The world is her stage, and she rips the runway with much ‘tude. The television is on and Scooby Doo is helping solve the latest mystery along with his meddlesome compadres while DD, my little girl, finishes her breakfast. As I maneuvered behind her, I could hear another television just behind the wall. The presidential candidates are in a fierce war of words, trying desperately to outdo each other with clever witticisms. Pundits are all so eager to opine and sip on airtime. “Humph,” I thought to myself. “The campaign trail has nothing on our household. Forget the race to the White House. The real race is getting out of my house.” I checked the time again: 8:15 a.m. I picked up the spray bottle and aimed it at her hair. A few quick sprays of water and like magic her curls reform. I pick up a brush and smooth one puff, then two, then one double-ponytail, then two. A few twists and barrettes on the ends and we are done. 8:23 a.m. I tap her on the shoulder and she turns to look at me. “Let’s go, Toot,” I say. She picked up the remaining bacon on her orange sectioned plate and heads to the kitchen with plate in hand as I headed to that place behind the wall where I hear the candidates’ voices. I glance at the television as I put on my shoes and shake my head again. I can still hear them as I walk away from the room and toward the front door. I picked up the previous night’s homework from the cubicle by the door along with the backpack she refused to acknowledge this morning: 8:30 a.m. I am now officially running late. “Time to go to school, Toot.” “No,” she said as she dances with her shadow outside the SUV, oblivious that the clock is ticking and her mother is, too. “Toot, let’s go !” I shout as I walk toward her. She spins on a dime, hand on her hips as she bops toward the SUV and stops again at the open door. “Get in, Sweet. We’re late for school,” I say. Once we’re both finally buckled in, I look at the clock: 8:36 a.m. The morning bell rings at 8:45 a.m. Late isn’t even the word. As a matter of fact, this is what can be called “normal” on any given day in our household. A short mile later, I stop at a stop sign and hear, “ding ding ding!” I look at the digital dashboard. Fuel Level Low. At this point all I can do is laugh. I chuckled to myself and thought about all the things I needed to do after I dropped DD at school that did not include a trip to the gas station. Nonetheless, a quick jaunt around the next corner and the entrance gate was in full view. Following the circular road, I bypassed the parking lot and pulled up to the curb right near the yellow “no parking” line. I checked the time again: 8:42 a.m. I’ve got three minutes to make it happen. I helped her arms through her backpack. I handed her the homework and grabbed my phone. We headed toward the gate. A short walk past two opened doors and we were at her classroom. She walked in and looked around. After a quick greeting from one of her classmates, she took her backpack off and hung it on the hook under her personal cubby. The teacher walked towards me as I watched DD. “Good morning,” I said. “She’s having quite a day.” The teacher replied with a smile saying, “It’s OK. We all have those mornings.” DD had joined her classmates on the carpet for morning story time. I looked at her smiling face as she found her assigned space and sat between the children who were already seated. It makes me proud to see her assimilate herself into the classroom culture. With all of the problems we have had to get to this point, seeing her happy in this space makes me feel confident about keeping her in public school. It’s a daily struggle, though. For as much as I am happy about her school days, the reservations I have are just as numerous. I took a deep breath in and waved goodbye as I exhaled and turned to walk away. I checked my phone as I sat in the drivers’ seat and turned on the engine. The radio station has gone to commercial break and the morning anchor is urging all who listen to exercise their right to vote. I listen and reply to the voice I hear through those Bose speakers, “I’m already with ya, sister.” Today is Super Tuesday. It is 8:50 a.m. and this super mom is already super tired. At least I didn’t have to travel far to cast my ballot. Let’s get this show on the road… if I don’t run out of gas first. I headed to the church in my neighborhood where I had voted before. There were no sign-wielding, flag-waving, honk-your-horn-for-us volunteers on the road. If I didn’t already know it was an election day, I wouldn’t have even realized it. I entered the polling place, which also doubled as the main sanctuary, and walked over to the poller who took my driver license and proceeded to search for me in the system. The poll worker quietly gave me my license back and directed me to another worker who gave me a ballot and directions to enter it to be counted. I did so. As I exited I could feel their eyes on me as I walked away with my “I Voted” sticker. I am the primary caregiver to a child with special needs. I listen to the candidates degrade each other. I watch the candidates’ actions toward each other. I watch the candidates exploit each other’s differences. They throw rocks and hide their hands. They craft words to puff themselves up even at the expense of someone who they campaign to govern. I hear them in the morning. I see them at noon. I see them at night. I see them, but they do not see me. I belong to a specific subset of the population you rarely see on the campaign trail. They don’t see the hurt these words cause daily in our lives. They don’t see the fight we undertake just to be included. They can’t possibly understand the effect the programs they cut have on families who depend on them to give our disabled loved ones a decent quality of life. They talk about education but likely cannot fathom the struggle we face in getting an individualized education program (IEP) written effectively to give our children the support they need. And they talk about “No Child Left Behind.” They bicker over submitting tax returns and how much someone was paid to speak at a convention. I wish they could see my tax returns, or those of any other mom who had to end her career to take care of a child with special needs. Our children aren’t left behind for sure — but they aren’t readily seen. You may not see us, but we are here. We are not lazy by any means. We are strong beyond measure. We are advocates and caregivers and tired and frustrated and courageous and invisible. We are not on any stage behind a mic. We are not included in campaign slogans. We are not in memes circulated on social media. We are not a superset of any platform. We may not be primary monetary contributors. It’s Super Tuesday, and I haven’t heard one super word that would help our population. I watch the commercials. I search the Internet. I have found nothing that will make me favor any candidate over another as it concerns my family. Nada. Zip. Zilch. Zero. Yet in some respect, everything they say affects my family in some way. If I could have, I would have voted “Kindness” for president. It wasn’t on the ballot. Perhaps it should have been. I wonder if it would get the nomination uncontested. We’ll never know. I’m a Mighty mom. I’m a super mom. It’s Super Tuesday, and if you look real hard you’ll see my cape blowing in the wind. Image via Thinkstock. A version of this post originally appeared in LaTaasha’s book, “Inclusion Is for the Included.” We want to hear your story. Become a Mighty contributor here .