Amy Neyer

@amy-neyer | contributor
Amy is a mom, wife, physical therapist, musician, and most recently, medical director of her family. She writes in a blog as a way to communicate with friends and family about her son’s rare medical conditions, and as a way to help her cope and manage stress. When she’s not taking care of her son, she is spending time with family, playing her ukulele and training for triathlons.
Amy Neyer

What It's Like to Parent a Child With Mast Cell Activation Syndrome

This is my reality. I’m coping with the fact that my child has a medically rare, chronic diagnosis: Mast Cell Activation syndrome (MCAS). I haven’t fully accepted it yet, but I’m getting there. I recently read a blog post about being a mother of a “special needs” child. I cried when I read it because I never thought of my child as “special needs,” but when I read the article, I realized it applied to me perfectly. I am a mother of a child with special needs. No quotation marks needed. My child does not “look sick.” I am often told: 1) how good he looks; 2) how he looks like he’s gaining weight; 3) how happy he seems. My response? 1) Yes, he does look good. It takes a ton of effort to keep him looking this good. The majority of his symptoms are internal anyway, so even at his worst, he would probably still look pretty healthy. 2) Tell that to the scale. He’s not gaining weight right now, and your comments minimize my reality and the intense fear, sadness, helplessness and frustration I feel every time we go to the doctor’s office for a weight check and see his lack of weight gain. 3) He is happy. We are so lucky our child is generally happy, playful, relaxed, inquisitive, patient and engaged. But his disposition is often like that even when we know he’s uncomfortable, which hurts us. And when he’s really screaming and crying, we know the pain must be pretty bad. That hurts more. This is my reality. I’m coming to terms with the fact that my 10-month-old son is allergic to everything and anything — meaning he could react to triggers (food, environmental, etc.) with vomiting, rashes, abdominal pain, sleeplessness, restlessness and hyperactivity. And once he reacts to something, it can take weeks to start seeing improvements again. I’m nervous during play dates, and I’m terrified to take him to parks and public places. If I take him outside, I spend the entire time worrying about every possible trigger, so we just go back inside because it’s a lot less stressful. Any time I have someone over, I’m half-listening to their stories and half watching them like a hawk. (Yes, you just washed your hands. Thank you. But then you ate those pretzels. So yes, you need to wash your hands again before you touch my son or his toys. Yes, I’m serious. This is my son’s life. This is my life. Wash your hands again.) This is my reality. I often find myself comparing my child to other children with chronic health conditions. I look to other children and sometimes think “at least my child doesn’t have ‘XYZ.’” This mindset minimizes my own child’s condition, and dumps me back onto the denial train. It also makes me feel guilty for having sad feelings regarding my child or my situation. How can I feel bad about this when another parent is dealing with that? Not healthy, I know. I’m trying to find acceptance by looking to families with healthy children, and acknowledging my current experience is quite different. I’m pretty sure typical families do not take their child for weekly weight checks or scrutinize over every dirty diaper. I’m sure that it never crossed their minds that their child may have an allergic reaction to heat, and therefore maybe they should not go to the park that day. Very little of what we’re going through with our child is considered “normal.” I’m allowed to mourn the loss of my hopes and expectations for my experience as a first time mom. I’m allowed to compare. It’s all part of my process. This is my reality. Other parents are proud of their children for talking, walking and clapping. We are proud of those things too, when they occur, but we’re also really proud of how well he takes his medicine. My child, who is 10 months old, is just now starting to take his disgusting, compounded medicines without crying or spitting them out. Every time he takes his meds (which is four times a day), we throw a party, praising him profusely. “We are so proud of you! Way to go! What a big boy! What a trooper! Yay baby!” And this really pisses me off. He shouldn’t have to take his medicine like a big boy. He is a baby! And that compounded, no-dye, no-flavoring, no-preservative medicine tastes terrible. He has every right in the world to protest, scream, and spit. But he just takes it peacefully now. I’m proud of him, and simultaneously, it breaks my heart that this has become his new normal. This is my reality. My child was diagnosed with Failure to Thrive (FTT) at 4 months old. We calculate everything that goes into his mouth, to the 10th of an ounce. We feel anxious when he does not want to eat some days, and we celebrate each ounce he does eat. We take him to see a GI specialist every three to four weeks, and we take him to the GI’s office weekly for weight checks. We used to weigh him at home every night before bath time, but then stopped when we realized it was not helping anything, and it was not changing anything. This is my reality. I have the sweetest child, who is also my greatest educator. He teaches me patience like I never knew it was possible, and to be comfortable with uncertainty. We rarely feel confident in knowing what triggered a reaction. Sometimes it’s near impossible to tell whether he’s teething/fighting a virus/[insert normal baby thing here] or having a reaction to something. While I’m not at the point of being comfortable with these uncertainties yet, I’m learning to accept them, and I’m more familiar with them now. He teaches me to be strong, and to speak out. I have always been one who is eager to please, who does not rock the boat. By advocating for my son, I have found my voice and my strength to speak up, ask for services, demand answers and expect nothing less than the best for my child. My child is worth it. I am truly lucky to be his mommy, and I hope my struggles during this time will help eliminate or ease the struggles he will face as he gets older. My child came from me. He is a part of me. He is my reality. This is my reality. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Amy Neyer

When My Son's Phlebotomist Made Me Cry

My son is 2.5 years old. He has several chronic medical conditions that require frequent doctor appointments, loads of daily meds, a special diet of formula that he receives through a feeding tube, and 30+ hours of therapies a week. His conditions also require fairly regular labs to assess the status of his many conditions. Unfortunately, these labs require blood draws. If you have ever taken your toddler to get blood drawn, you immediately feel my pain on a visceral level. It goes against every fiber of my being to hold him down against his will, despite his desperate, anxious, fearful pleas, screams and cries. It is contrary to everything I do in my every waking day to subject him to pain and emotional suffering. But I know, as an adult and as his mother, these labs are important and necessary for his overall health. They are not optional, and because of that, his pain and emotional stress is just one more thing I have to accept as “part of his journey,” along with all of the other things my brave boy handles every day. Just as I wish he would not have to get blood drawn two to three times a year, I also wish he did not have mast cell activation syndrome (MCAS), or that he did not require a feeding tube. The list goes on, and so must I. So, last week, I took him to the lab for his blood draws. Each time I take him for labs is more challenging than the last. The older he gets, the more aware he is, the better his memory is, the more anxious he becomes, the harder it is to hold him down, and the more traumatic the experience is for him. It takes two adults to hold him steady while the phlebotomist works as quickly and carefully as possible. Every time the phlebotomist’s assistant holds his flailing arm down — pinning his elbow straight against the arm rest of the chair — I’m terrified he will injure himself during his struggle to wriggle free. Despite my fears, I remain focused. My number one job during lab draws is to make sure he gets through it as quickly as possible, with as few adverse reactions as possible. My task is to be his strength. This means that I must manage my own fears and anxieties. I cannot stop his tears, but I can control mine. I cannot make it hurt less, for either of us, but I can try to distract him (and me) by singing his favorite songs. And I can hold on tight — even tighter than last time — because that is what I need to do. Letting him move is not an option, and in my mind, contributing to his chaos with my own tears is not an option either. Focusing on my task, on my one job, helps me keep my composure. I can cry later, when we’re home and he’s safely asleep for the night. But for those tumultuous minutes, I am his strength when he needs me most. Generally, as soon as the labs are done, I strap him into his stroller, give him some Benadryl (to help with mast cell reactions), and we move on with our day, albeit shaken, exhausted and emotionally depleted. But last week, he was more shaken than usual, and required more from me to help him calm down after the blood draw. While sitting close to him, I fantasized about curling up on the couch with my husband later in the evening, debriefing and crying to release from the pressure of the day. But in that office, on the floor next to my son, I held my composure, and I would not break. But then it happened — she broke me. His phlebotomist. The woman who tried to entertain him with her adorable cow figurine, who tried to get us in and out as quickly as possible. The woman who successfully stuck his vein on the first try, drawing his blood as quickly and carefully as possible. The woman who worked with my son with all the professionalism and care you could hope for from someone in that position. His phlebotomist approached me and asked me to sign some paperwork, so I stood up and marked my name on the dotted line. She then turned to me and threw her arms around me in the biggest, firmest, not-letting-go-until-you-know-I-am-completely-sincere way. She held me tight and told me, “You are so strong. You are so strong.” My son’s phlebotomist made me cry. She broke my hard outer shell, and she allowed me to acknowledge the pain and release my fears and anxieties. My son, at that point, was calm in his stroller, entertained by one of his therapists, and did not see me cry. I succeeded in maintaining my composure in front of him, and then, because of this act of kindness, I was given a safe place to feel and to release. Ultimately, her professional care and handiwork gave my son a safe experience, and her hug gave me mine.

Amy Neyer

Turning My Pain Into Gratitude as I Parent My Son With Complex Needs

Having a son with complex medical needs can be an emotional rollercoaster. His tough times can bring with them depression andfeelings of helplessness, but with the successes comes a quick return to our usual happy selves. I have never cried so hard as I have since becoming a mother, and I have never felt such elation and love. My son’s medical conditions have led me to experience positive moments of parenthood more deeply than I may have otherwise. When you experience the lowest of lows, then even the moderate highs seem, in comparison, really, incredibly high. A day filled with your child’s vomit, crying, tantrums, pain, and GI bleeding can leave you feeling like you were attacked — exhausted, worn, physically and emotionally beaten. But then, in that raw, vulnerable state, all it takes is a smile, a giggle, a split second of eye contact while reading a book, or a successful feed that doesn’t end in vomit to elicit true joy. My 2.5-year-old son was in the bath last week, splashing around and singing songs. The experience brought me to tears. Here he was, happily playing in the bath with his g-tube accentuating his tummy rolls, with no awareness that three months ago he was diagnosed with failure to thrive, losing weight rapidly with a BMI percentile of 0.03 percent, and lacking any sign of a belly roll. His smiling eyes during this bath had no memory that after his g-tube surgery, he was so anxious about his new abdominal accessory he could not take off his clothes or take a bath. Last week’s bath was anything but standard or routine — it was a celebration. A milestone. One of my happiest moments in months. It was this bath that made me wonder: are my happiest moments with my son and my family built upon a foundation of heartache? If I had not experienced the emotional trauma of the last three months after my son’s surgery, would I have been moved to tears over the simple act of splashing in the bath? I do not have other children, so I have no other parenting experiences from which to compare. It seems possible, and probable, that many of my most pleasurable moments with my son are accentuated, and made more pleasurable, by the pain we have gone through, and continue to experience, together. This realization allows me to feel more grounded and more stable during his tougher times. It creates a genuine sense of gratitude for our challenges as a family. I can trust that even in our most difficult times, we will experience light, humor, laughter and happiness again. Not despite our challenges, but because of them. We want to hear your story. Become a Mighty contributor here .

Amy Neyer

How I Honor My Son on Rare Disease Day

My son is 19 months old and has mast cell activation syndrome (MCAS), a rare condition that affects every aspect of his life. The past 19 months have been a journey as we learned to navigate this challenging condition while keeping him as healthy and safe as possible. My son can have severe reactions to practically anything, including most foods, heat, cold, scents, perfumes, cleaning agents, medicines, stress, pain, fatigue, and several environmental triggers. He takes four medicines several times a day (all compounded free of dyes, preservatives, and flavors), and he has other rescue medicines for acute flares. MCAS caused him to have a diagnosis of failure to thrive during his first year of life, as he was unable to tolerate breast milk or any formula, including every hypoallergenic elemental formula on the market. I pumped around the clock, eating only three foods to avoid triggers, only to find that he was not absorbing nutrients and his gut was rejecting my milk. It was not until we started him on a modular formula, gave him an effective cocktail of meds, and made significant lifestyle changes did we start to see some weight gain. He is now close to the 17th percentile for weight (up from I often hear from friends and family that he looks so good. It’s true – he really does. He has an army of incredible doctors, pharmacists, family, and friends working so hard to help him looking and feeling as good as he does. But with MCAS, there are bad times too. Sometimes they are subtle, and sometimes they are invisible, but they are always just a moment away. Rare diseases give you a double punch of a complex medical condition and a condition that no one understands or people don’t believe because they cannot see it. Knowing what you know now about my son, you may see him differently, and that is OK. He is different, and also beautiful and remarkable and unique and special. Seeing him for who he is and what he has, and acknowledging and respecting the reality of his condition is what keeps him safe. Spread awareness, spread love and spread kindness. Rare disease Day is February 28, but let us celebrate the successes and acknowledge the challenges of living with a rare disease every day this month and throughout the year. We want to hear your story. Become a Mighty contributor here .

Amy Neyer

Accepting Our New Normal While Caring for a Child With a Rare Disease

When my child was diagnosed with a rare and chronic medical condition, my life went through many changes — rapidly. I cried, I mourned and, at times, I felt despair. But eventually, I picked myself back up. I coped with the loss of the life I thought I would have, and I learned to accept my new normal. “New normal” is a term that most parents of kids with rare and/or chronic health conditions hear often. Medicines four times a day? That’s our new normal. Testing every dirty diaper for blood? That’s part of our new normal. Weekly doctors’ appointments, weight checks and therapies? New normal. Staying up until 1:00 in the morning and researching said rare diagnosis, only to go to bed at 1:15 a.m. and be woken up at 1:30 a.m. by your baby crying out in pain? Yep, new normal. Constantly questioning every symptom and sign and flip-flopping between denial and acceptance? New normal on a daily basis. But gradually, ever so slowly, “new normal” just becomes our “normal.” I have been cruising at 0.5 miles per hour in the land of our normal for months now, slowly growing accustomed to the ins and outs of my son’s condition, begrudgingly realizing there’s no rushing his body’s process and learning we’re all truly passengers along for the ride of his rare condition. And then it happened. His condition changed direction for the worse, requiring new daily treatments, creating new hourly worries, resurrecting previously buried worries and leaving us passengers headed in an unknown direction. Suddenly the familiar, comfortable proverbial rug was pulled out from under us, and we were left begging for our normal to return. I cried. I mourned. I felt despair. But now, I look at my beautiful son and realize the only thing to do is to keep moving forward. I am picking myself up, piece by piece, and realizing that while this new direction is unknown and scary, it, too, will eventually become my “new normal.” The new treatments, the new questions and the new symptoms all will become my new normal. And new normal will eventually just become normal. We want to hear your story. Become a Mighty contributor here .

Amy Neyer

Raising a Child With Mast Cell Activation Syndrome

I’m a physical therapist. I value the scientific method. When working with my patients, I use objective measures and assessment tools to determine level of progress and the effect of my treatments. When a patient does not perform well on an assessment tool, I do not want them taking it personally — it is just one measure of function and does not define them as a person. Given this background, why is it that I take it so personally when my 11.5-month-old does not meet milestones, or ends up in the gray and black zones of assessment tools? Why does it feel like a punch in the gut every time I hear about all the words someone else’s child says, when my almost-toddler, who used to have “ma” and “ba” sounds, only utters “ga” and “da” and often is silent? Why do I worry so much when my son, who has been crawling since he was 7 months old, loses control of his arms and face-plants into the floor? Why do I still cry when I cannot fill out assessments about his self-feeding because he still cannot tolerate any solid foods? I worry because I know regardless of how tough this first year of parenting has been and all of the therapies he already had, there is still so much more work to be done. Even though it took months of heartache, labs, tests, therapies, doctors appointments and sleepless nights to get his diagnosis of mast cell activation syndrome (MCAS), there’s still a strong likelihood something else is at play. I worry because I feel like there’s reason to worry. I worry because I have given all of myself to him this past year, and I worry I will burn out and not be able to give as much as he needs and deserves in the coming years. I love my son for who he is and value his personality, his sweet and playful nature and his strong independent spirit. But it has also been a tough first year, and I am well aware the tough times may not be over yet. I am constantly reminding myself that in loving and accepting him, I must love and accept his pace. He will do things on his own time. He will need more therapies, more treatments, more assessments and more assistance than some other kids, but I have to trust that he will get there, that he will say “mama,” and I’m sure one day I will not be able to get him to stop talking. And while I am on this ride with him, working endlessly to give him the tools he needs to be a social child and eventually a successful adult, I challenge myself to stop worrying and instead celebrate. My son will be 1 year old next week. He has accomplished so much, and has become such an incredible person already. He crawls everywhere. When his arms give out and he falls and hurts his face on the ground, he does not let that stop him. He just keeps on crawling! He is determined. He takes his medicines four times a day with minimal fight, even though they are unflavored and taste terrible. He is so brave. He loves his books. He feels pictures, turns pages, and refuses to take his bottle (no matter how hungry he is) until we read one more book (or two or three!). He is thirsty for knowledge. He loves to play. This child will play and play and play, regardless of how bad his stomach is hurting, how much his rash itches and how much he just threw up five minutes ago. He will continue on playing, often without a pause. He is endlessly strong. I choose to celebrate my son as we near his 1st birthday and every day. I choose to suspend my worry and to allow myself to simply enjoy my son for who he is. He deserves it, and I deserve it.

Amy Neyer

My Identity as Parent of Child With Medical Condition

I am a woman. I am a body that created a human and fed that child in the first months of his life. I am a wife. I am deeply grateful for the most amazing partnership with my husband. I am a mother. I am proud of myself for creating, birthing and raising this beautiful child.I am hard on myself for not doing things perfectly. I am a mother to a baby with special medical needs. I am sad that my first year as a mom was marked with so much confusion, heartache, and tears.I am so grateful for my son for teaching me patience and a depth of love I never knew existed. I am a daughter. I am more sensitive to my parents’ feelings after becoming a parent myself. I am a friend. I am often feeling guilty about not being a better friend. I am a physical therapist. I am a better physical therapist because of my experiences as a mother.I am a worse physical therapist because I am so damn sleep deprived. I am a multitude of roles that make me me and that define me as a person, but I am not the sum of all my parts. Sometimes I am more. Sometimes I am less. At times I am lost. At times I am tired. At times I am helpless. At times I feel that I fall short in my roles as mother, wife, physical therapist, daughter and more. Amy and her son But other times I can look in the mirror and know I am the best version of myself at that moment. I am not currently competing in triathlons because I am busy running an ultra marathon of medical diagnoses, doctors appointments, medicines, fights with insurance, breast pumping, dishes, more dishes and even more dishes. I did not go in to work today because my son needed to go to the ER instead. I am not able to attend social events and dinners with friends because of my son’s medical needs at night. I hope my body and professional and personal relationships stay strong through this time. But at the end of the day, I am my son’s mommy, and I am my best version of myself because I am available to him. 
I am vulnerable by sharing my feelings.I am empowered by sharing my feelings.I am growing and evolving, ever-changing because of my experiences.I am at the core the same person I have always been. I am. The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? Check out our Submit a Story page for more about our submission guidelines.

Amy Neyer

What It's Like to Parent a Child With Mast Cell Activation Syndrome

This is my reality. I’m coping with the fact that my child has a medically rare, chronic diagnosis: Mast Cell Activation syndrome (MCAS). I haven’t fully accepted it yet, but I’m getting there. I recently read a blog post about being a mother of a “special needs” child. I cried when I read it because I never thought of my child as “special needs,” but when I read the article, I realized it applied to me perfectly. I am a mother of a child with special needs. No quotation marks needed. My child does not “look sick.” I am often told: 1) how good he looks; 2) how he looks like he’s gaining weight; 3) how happy he seems. My response? 1) Yes, he does look good. It takes a ton of effort to keep him looking this good. The majority of his symptoms are internal anyway, so even at his worst, he would probably still look pretty healthy. 2) Tell that to the scale. He’s not gaining weight right now, and your comments minimize my reality and the intense fear, sadness, helplessness and frustration I feel every time we go to the doctor’s office for a weight check and see his lack of weight gain. 3) He is happy. We are so lucky our child is generally happy, playful, relaxed, inquisitive, patient and engaged. But his disposition is often like that even when we know he’s uncomfortable, which hurts us. And when he’s really screaming and crying, we know the pain must be pretty bad. That hurts more. This is my reality. I’m coming to terms with the fact that my 10-month-old son is allergic to everything and anything — meaning he could react to triggers (food, environmental, etc.) with vomiting, rashes, abdominal pain, sleeplessness, restlessness and hyperactivity. And once he reacts to something, it can take weeks to start seeing improvements again. I’m nervous during play dates, and I’m terrified to take him to parks and public places. If I take him outside, I spend the entire time worrying about every possible trigger, so we just go back inside because it’s a lot less stressful. Any time I have someone over, I’m half-listening to their stories and half watching them like a hawk. (Yes, you just washed your hands. Thank you. But then you ate those pretzels. So yes, you need to wash your hands again before you touch my son or his toys. Yes, I’m serious. This is my son’s life. This is my life. Wash your hands again.) This is my reality. I often find myself comparing my child to other children with chronic health conditions. I look to other children and sometimes think “at least my child doesn’t have ‘XYZ.’” This mindset minimizes my own child’s condition, and dumps me back onto the denial train. It also makes me feel guilty for having sad feelings regarding my child or my situation. How can I feel bad about this when another parent is dealing with that? Not healthy, I know. I’m trying to find acceptance by looking to families with healthy children, and acknowledging my current experience is quite different. I’m pretty sure typical families do not take their child for weekly weight checks or scrutinize over every dirty diaper. I’m sure that it never crossed their minds that their child may have an allergic reaction to heat, and therefore maybe they should not go to the park that day. Very little of what we’re going through with our child is considered “normal.” I’m allowed to mourn the loss of my hopes and expectations for my experience as a first time mom. I’m allowed to compare. It’s all part of my process. This is my reality. Other parents are proud of their children for talking, walking and clapping. We are proud of those things too, when they occur, but we’re also really proud of how well he takes his medicine. My child, who is 10 months old, is just now starting to take his disgusting, compounded medicines without crying or spitting them out. Every time he takes his meds (which is four times a day), we throw a party, praising him profusely. “We are so proud of you! Way to go! What a big boy! What a trooper! Yay baby!” And this really pisses me off. He shouldn’t have to take his medicine like a big boy. He is a baby! And that compounded, no-dye, no-flavoring, no-preservative medicine tastes terrible. He has every right in the world to protest, scream, and spit. But he just takes it peacefully now. I’m proud of him, and simultaneously, it breaks my heart that this has become his new normal. This is my reality. My child was diagnosed with Failure to Thrive (FTT) at 4 months old. We calculate everything that goes into his mouth, to the 10th of an ounce. We feel anxious when he does not want to eat some days, and we celebrate each ounce he does eat. We take him to see a GI specialist every three to four weeks, and we take him to the GI’s office weekly for weight checks. We used to weigh him at home every night before bath time, but then stopped when we realized it was not helping anything, and it was not changing anything. This is my reality. I have the sweetest child, who is also my greatest educator. He teaches me patience like I never knew it was possible, and to be comfortable with uncertainty. We rarely feel confident in knowing what triggered a reaction. Sometimes it’s near impossible to tell whether he’s teething/fighting a virus/[insert normal baby thing here] or having a reaction to something. While I’m not at the point of being comfortable with these uncertainties yet, I’m learning to accept them, and I’m more familiar with them now. He teaches me to be strong, and to speak out. I have always been one who is eager to please, who does not rock the boat. By advocating for my son, I have found my voice and my strength to speak up, ask for services, demand answers and expect nothing less than the best for my child. My child is worth it. I am truly lucky to be his mommy, and I hope my struggles during this time will help eliminate or ease the struggles he will face as he gets older. My child came from me. He is a part of me. He is my reality. This is my reality. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.