Hillary Savoie

@hillary-savoie | contributor
Hillary Savoie is a writer, advocate, mixer of killer cocktails, and friend to punching bags everywhere. She is also mother to Esmé, a beautiful little girl with multiple rare genetic conditions. Hillary has blogged about life with Esmé, since September 2012 on her blog: The Cute Syndrome. She also blogs at Mom, Imperfectly. Hillary is the Founder and Director of The Cute Syndrome Foundation, which is dedicated to raising research funds for and awareness of PCDH19 Epilepsy and SCN8A Epilepsy. In 2015 she published two short memoirs, Around and Into The Unknown and Whoosh. And she holds a doctorate in Communication and Rhetoric from Rensselaer Polytechnic Institute, which was great preparation for parenting Esmé, who is an expert in nonverbal persuasion.
Hillary Savoie

A Special Needs Mom Reflects on Mother's Day Gifts

Mother’s Day 2010: I watch as my mother unwraps the first of her presents. It is a pair of pretty handmade slippers. She is pleased. I am anxious, though. As I watch her sweetly looking over the slippers, I try to resist the urge to push the next package toward her and demand she open it immediately. I quite literally sit on my hands to keep myself in check. When she finally unwraps the second package, I watch the confusion on her face as it settles into a hopeful realization. She holds up the tiny little slippers and asks, “Are you?” I smile and nod, tears welling up in my eyes. “It is really early, Mom, but we wanted you to know… Happy Mother’s Day!” I am four weeks pregnant, expecting my first child, my mother’s first grandchild. I can already imagine what it will feel like, one year later, celebrating my first Mother’s Day. Mom and I will sit under the big umbrella, our faces and arms in the shade, our feet in the sun. We’ll pass the baby back and forth, laughing and talking about this baby’s future. We’ll walk around mom’s gardens and admire the flowers. We’ll already be a little clan: mom, me and my baby girl — she will be a girl, I just know it. I am right. The tiny bundle of cells and joy growing inside me is a little girl, just as I imagined. But, also, she is already unbelievably different than I ever could have imagined. Mother’s Day 2011: I glance over my sleeping 3-month-old daughter, Esmé. I take her in completely — her full head of dark hair, her pouty lips, her dimpled hands. For a moment I swim in the calm of watching her little chest rising and falling rhythmically — in and out, in and out. After a beat, I snap to, scanning the lines running from her, glancing over the IV, oxygen and monitors. I have the same thought I have had every morning for the last week: She made it through another night. It takes a moment before I realize the nurse, Mary, is holding out a Mother’s Day painting — tulips made from hand and foot prints — for me. Right, today is Sunday. It’s Mother’s Day, I think. She says, “Look what Esmé made for you!” There are traces of green paint between Esmé’s toes and pink paint on her fingertips. Mary was part of the team that saved Esmé the week previous. Mary was there when Esmé stopped breathing, when the ambulance sped down the highway, when Esmé’s stretcher rushed down the hospital hall from the bank of elevators to the ICU. I love Mary in a way that cannot be described beyond the fact that she helped keep my daughter alive through the impossible. The flower painting — and saving my child’s life — isn’t the only gift Mary has in mind, however. “Do you want to hold her?” she asks. I have not held my daughter since I handed her limp body over to the nurse in the emergency room. “Are you sure?” I ask, looking at the mess of wires and tubes running over every inch of her body. Of course, I ache to feel the weight of her body in my arms. But I am terrified. Mary reassures me, “I spoke to the doctors, and they agree that it is OK. I’ll help you.” Mother’s Day 2016: I look back to that day, five years ago, holding my newborn daughter and carefully navigating the NG tube, the oxygen and the PICC line in her neck. I held her as I sat alone in the pediatric ICU. I held her for the first time in what felt like an eternity. The cool dark room was still, save for the life sounds of the medical equipment keeping her tethered to this world. Esmé slept on me, her body feeling far heavier than its 10 pounds — as if all the weight of her short life was bearing down on both of us. As Esmé rested, I considered the dreams I’d had for this day, the dreams I had for her future. They all escaped my grasp. I could no longer picture the mother and daughter moments I’d imagined stretching forward through our future. I could no longer visualize sitting in my mother’s garden with nothing more to do than take in the flowers and relax with my baby in my arms. It seemed, after all of it, I could no longer imagine what the sun felt like on my feet. But, holding Esmé for the first time since I was forced to understand the challenges she faced were going to be unfamiliar and terrifying and mysterious, I started building another dream, another vision of motherhood. A dream where spending Mother’s Day with our favorite nurse is a gift. It is a dream where we’ll grow flowers to admire — even if they were painted with Esmé’s sleeping hands and feet. It is a dream where the only mother and daughter moment that matters is the one between us… a dream in which she and I will build sunlight between us when there is none. Five years later, my daughter’s challenges are still mysterious. But they are familiar, and far, far less terrifying. This Mother’s Day, my mother, Esmé and I may be able to sit in the sunshine and admire the gardens as they burst into life. Mom and I will pass Esmé back and forth as we tube-feed her. Esmé will babble in words we still don’t quite understand. We will smile at her and tell that her words are beautiful. And, later, when she falls asleep in my arms in her darkened room, I will remember that day five years ago, when just holding her felt like the most tremendous gift in the world. I’ll feel her little chest rising and falling rhythmically — and I will whisper into her hair, “Thank you for staying with me.” Hillary’s daughter, Esmé. Follow this journey on The Cute Syndrome. The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! 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.

Hillary Savoie

When I Heard a Child Speak and Imagined It Was My Daughter

Yesterday I was the woman who walked into Target looking tired and rushed, placed her child in the shopping cart seat and, seemingly for no reason at all, began crying. Thankfully, I was also the woman who didn’t put on makeup that morning, so I wasn’t the woman who walked around the store with streaks of mascara running down her face. What wasn’t clear yesterday, if you were the man watching me (but trying to look as if you weren’t watching me) and wondering what was wrong, was the tiny voice I heard that brought tears to my eyes. Ok, wait. Let’s back up. I was running late yesterday morning. I find myself running late a whole lot of the time these days. I suppose I’m finally making amends for having spent the vast majority of my life being chronically (and impatiently) 15 minutes early for everything. I’d slept far less than I should have. There was barely time for one cup of coffee. And I needed to stop for diapers for my daughter, Esmé. Because there were like three left. And that, my friends, is a recipe for disaster. So we left early for swimming therapy. We had just enough time to pop into Target. Pulling out a red shopping cart, I said, “OK, Ez, here we go.” I lifted her into the shopping cart seat while struggling with her legs, which are far too thin again after her recent illnesses, as they moved haphazardly every which way other than into the leg holes. As I was doing this, I heard the tiny little voice of a child at the cash register talking to the attendant. I couldn’t see this child; she was hidden from my view by the counter and the laws of perspective. But I could hear her. She said proudly and clear as a bell, “I am 5 years old.” And my heart shattered into a million pieces right then and there, because I heard this child, and for just a moment, I imagined it was Esmé speaking. She is, after all, 5. For a moment, I allowed myself to imagine what it would be like to hear my daughter speak. The kind of fluid, weird, stream-of-consciousness exchanges that characterize the speech of many 5-year-olds. Not just an exchange of information, but the sound of her little voice forming the words — such a simple thing. And yet, such a complicated thing: The muscles, the coordination and the motor planning involved are nothing short of astounding when you stop and think about it. So, I stood there in Target and let that sadness wash over me until it passed. It’s a thing I just have to do sometimes. And when it passed, Esmé and I just went about our business. Frankly, I sort of forgot about the whole thing until the next morning. Hillary and her daughter, Esmé. The next morning, I was packed and ready to head out on a short overnight trip. I was so pleased that Esmé woke up a few minutes before I had to leave, so I could kiss her and remind her she would see me again soon. She was still looking pretty sleepy when her father carried her out of her room to say goodbye, but she turned in his arms and looked at me. I could tell she was taking in the fact that I was dressed to leave — with hair and makeup done. She put her hands up in my direction and said in the littlest, sweetest voice I have ever heard, “Aye, Mum mum.” Hi, Mama. “Hi, Mama,” I repeated back to her, to acknowledge her words. “Hi, Mama. Hi, Esmé.” I felt those tears working their way up again — my heart shattered again. And I wondered how I could have ever imagined her words any other way. Because if those are the only words she ever speaks, they will be more than enough. Follow this journey on The Cute Syndrome. The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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.

Hillary Savoie

When You Use the Word 'Brave' to Describe a Child With Medical Challenges

I feel like people toss around the idea of bravery a lot when they are talking about children with medical challenges. And as I am lying here in a hospital crib at 4 a.m., pinned under my sleeping daughter, Ezzy, unable to sleep myself, this is what I find myself thinking about: What does it mean to call Ezzy brave? Ez has been sick these last few weeks. We’d kept her home, working carefully with her wonderful pediatricians’ office and home care team to keep her out of the hospital. In the last week we’ve spent no less than seven hours over four days in the doctors’ office. But Esmé took a little turn, and we decided she needed to be seen in the emergency room yesterday. This meant routine work-ups — chest X-ray, IV placement, catheterization, blood draws, exams by a half-dozen doctors — as well as some simple things that are really tough for Ez, like fighting to see in her throat, something that is difficult as a result of the medical trauma she experienced as an infant. Looking in her throat requires coaxing/prying open her mouth with a tongue depressor and a subsequent coughing/retching/spitting up routine. So far we know she has two viruses, and we are also treating her with antibiotics until we have more information about potential/suspected bacterial infections. As I think about today — and really, any day — I know my daughter is certainly one of the bravest people I know. She stares down things that can make adults weak in the knees. Many times I have watched Esmé go through frightening things, painful things, challenging things and just somehow manage not to be wrecked by it — even as her mama wants to curl up in the corner and cry. Sometimes, I realize it is just that she doesn’t know any different. Esmé doesn’t know that all kids aren’t regularly subjected to these kinds of awful procedures. This — hospitals, doctors, procedures — it’s normal to her (although, mercifully, it’s far less frequent lately than in the past). Sometimes, she seems brave because things aren’t actually as big of a deal as we make them out to be. And sometimes, Ez seems brave because she is straight-up just a seriously tough cookie. It has to be said, though — sometimes, she isn’t brave. Sometimes, she is terrified. Sometimes, she feels pain and shows it. Sometimes, I’m sure, she doesn’t want to be brave and has to be pushed and held into doing something that has to happen for her safety. Sometimes, she doesn’t have a choice. Sometimes, it is just awful and unfair. This is the problem behind talking about how brave kids are who go through things like this. Because they are so often so brave — at least they often seem to be so brave — and it is a pretty humbling thing to watch. It puts all kinds of other things into perspective. But also, and this cannot be emphasized enough, Ezzy is just a kid. All the other kids who are sick? They are also just kids. Each of them. Kids whose hospital trips should be “that one horribly scary time we had to go to the ER,” not “the ER: the place where everybody knows your name.” Talking about the bravery of kids who are sick isn’t a bad thing, but sometimes it masks the things people don’t want to think about: kids’ suffering and the undeniable reality that some kids suffer. And it is so wrong. But it is also true. I believe it is true and real for Esmé — even though she cannot say it, even though she has no choice but to go through it. Talking about the bravery of kids like Ez can diminish their experience of pain. I know this because it is one of the things I tell myself when, like yesterday morning, I hold down her jumping, fighting, sneaky arms and legs so she doesn’t get loose and dislodge the IV being threaded through her delicate veins. I say this over and over to myself to make me feel OK: She’s so brave. She’s so brave. She’s so brave. And she is so brave. But it isn’t her job to be the one whose bravery is biggest in the room. She’s allowed not to be brave. It’s my job to be brave enough to allow her to be scared. Follow this journey on The Cute Syndrome. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and 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.

Hillary Savoie

When My Child's Doctor Said She Wasn't 'Perfect'

Hillary’s daughter Esmé in a park A few weeks ago we had an appointment with one of my daughter Esmé’s doctors. He’s a good doctor. We have had a great working relationship for a number of years. I like that he is a specialist who realizes that while his particular specialty is his priority, it may not be mine with Ez. He knows I will resist doing interventions as much as possible. He knows I will make jokes about how little we are able to carry out his prescribed therapy. And he knows I will listen when something needs to happen. We trust each other. Like all of our current doctors, it is not an accident that we work with him. We’ve long since dropped doctors who don’t work well with us, opting, in many cases, to drive three and half hours away to Boston to find some of the best doctors in the world. For this particular specialty, however, I never really considered leaving our local practice. I was always satisfied. But during this last visit he sort of stopped me in my tracks with the language he used to refer to my daughter — language that betrayed something about how he sees Esmé. I have written a lot about language, like how much I feel like the words people use tell stories about their experience with disability tell stories about their feelings about people with disabilities. I bump up against this a lot in places I expect it — people with little experience with disability using pitying language, or struggling to find the words to ask the kinds of questions they would like to ask and coming out instead with things like, “What’s wrong with her?” Sometimes I feel forgiving of such things — sometimes less so. But I, perhaps naively, expected that doctors — at least the doctors we’ve been working with for some time — have a better understanding of disability, of the way we see Esmé and of the importance of the language we use, especially in Esmé’s presence. So, during this particular visit, the doctor and I were discussing a possible future surgical intervention. I wanted to understand the procedure in detail, including what was involved in the actual procedure, time in the operating room, recovery expectations, as well as what the desired (and likely) outcomes might be. The doctor did a great job of explaining exactly what would be involved — where the incisions would be made, and so on. I was just thinking about how much I liked him for going into such detail with me, and then, thinking out loud, he said, “But, really, I doubt that the surgery would be worthwhile in her case… if she were otherwise perfect, then I would recommend it… it really is primarily cosmetic.” It took me a minute to understand what the hell he meant by “otherwise perfect” because who is “perfect” anyway? (And, frankly, if anyone is perfect, it is probably Ezzy, if you ask me…) And then he said, “You know, if it would be something that would cause her trouble in the future, like if people would notice in a job interview or something… but that’s not going to be a problem for her.” Uh. Right. Now I see. First, he was trying to sell me a primarily cosmetic surgery for a 5-year-old, which is ridiculous. Second, he thinks my kid need not be shown the consideration of being spoken about like she is a full human in the room with him. Third, he sees very little future for my child, while I am pretty sure she may be his boss in 20 years. Fourth, this guy sees the world in terms of perfect and imperfect, when we are all, each and every one of us, perfectly imperfect. Fifth, I feel terrible for the child he sees as “otherwise perfect” and in need of fixing. I didn’t say anything in the moment, because I’m a writer and my brain only finds witty responses ages later when I am obsessively revisiting the scene in my mind as my well-spoken and much more collected alter ego. But I did pack up my daughter as quickly as I could, and as I walked out the door I leaned over my daughter and told her the truest thing I know: “Ez, you are absolutely perfect just as you are. You are just exactly as you should be. And I love you.” Hillary and Esmé outdoors Follow this journey on The Cute Syndrome. The Mighty is asking the following: Describe a moment when someone made a surprising comment that caught you off guard. How did you respond to it? 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.

Hillary Savoie

Why Our Daughter’s Epilepsy Isn’t Just About the Seizures

One night in the fall of 2011 after my daughter, Esmé, was tucked into her crib, I climbed into bed, grabbed my laptop and opened YouTube. I took a deep breath before I started searching terms like “infant tremor,” “infant shaking” and then, finally, in what seemed like a betrayal of my daughter and my own carefully honed optimism, I typed the words “infant seizure.” That night I watched video after video of babies having seizures. I watched so many that my husband begged me to stop. But I still watched, carefully analyzing each movement and reading the video descriptions and comments hoping to see the words, “We thought it was a seizure but it wasn’t.” I didn’t find that. What I found, instead, was justification of my fear that my daughter was having seizures. During Epilepsy Awareness Month in November, I do my part to raise awareness. I share memes about what to do if you see someone having a seizure (don’t put anything in their mouth), figures about how many among us will be diagnosed with epilepsy in our lives (1 in 26) or will experience a seizure (1 in 10). These are important messages to share, but I often feel that there is something missing — the explanation that epilepsy isn’t just about the seizures. I tend to feel it the most as the month draws to a close. I want to explain that epilepsy awareness isn’t about a month. It isn’t about wearing purple. It isn’t always even about the seizures. For us, epilepsy is also about the shadows cast by the seizures. The first time I knew my daughter had a seizure she was 8 months old. Esmé was asleep next to us. My husband and I both turned to her in time to see the tremors in her tiny plump hands and feet subsiding and a blue-ish tinge just leaving her face. It was so fast — fast enough that I questioned if it actually happened. But deep down I knew. And that is how I found myself scouring YouTube that night. Esmé had been unwell since birth. We had spent weeks in the hospital after severe aspiration pneumonia almost took her life. We were not unfamiliar with the world of terrifying medical things that can happen to a baby. We already had a neurologist, who we called the next morning. He assured us that it was very unlikely to be a seizure, but ordered a 30-minute electroencephalogram (EEG) to check her brain function “just to be sure.” Several days later, the doctor told us that the EEG was normal. He confidently stated that Esmé was not having seizures. This was supposed to be good news, but it didn’t feel that way. Esmé was still having these trembling spells, several of which I’d recorded on my phone. I showed the videos to him and asked him to please tell me what they were. He watched the videos of Esmé trembling, turning blue, her eyes rolling up and to the left and pronounced it to be neurological reflux. He sent us on our way with instructions for Esmé’s gastroenterologist to get her reflux under control. It wasn’t reflux, but it took almost a year, three hospitals, many new doctors, weeks of inpatient EEGs, five emergency-room visits and two 911 calls to confirm beyond a doubt that our daughter was having seizures. During this time, the seizures came at least weekly and sometimes daily. The seizures would cluster together in one 24-hour period, knocking days out of each week where we’d do little more than lie in bed waiting for Esmé to experience or recover from seizures. The rest of the time we were terrified to venture far from home. Esmé lost skills: the ability to sit, to focus, and, most painfully, to say “Maman.” Now, three years later, after trying seven different anticonvulsants — many of which lead to unbearable side effects — Esmé takes a very high dosage of a single medication that works. Her seizures have been dramatically reduced. She is thriving, in her own deliberate, beautiful and delayed way. This is a tremendous gift — one I am thankful for every day. However, it can’t be confused with her epilepsy being absent, with her being “all better.” Esmé’s epilepsy is always with us, even when the seizures aren’t. Epilepsy is about the seizures, of course. But epilepsy is also the anxiety I feel while I watch little tremors run through her body or her eyelids flutter in those fleeting neuro-like ways that suggest that her brain is struggling to maintain control. Epilepsy is about our bi-weekly hour drive to the compounding pharmacy that makes the only drug that works. Epilepsy is about giving my child three doses a day of a drug that I am indebted to, but that I also despise for the effects it has on my daughter. I have nightmares about being unable to attain this drug, but I worry daily that I don’t know where the drugs end and Esmé begins. Epilepsy is wondering what damage has been done to my daughter’s brain, and what we could have spared her had we just gone to a doctor who listened to us sooner. Epilepsy is wondering if and when, as has happened with so many of my friends’ children, the drug will fail her. Epilepsy is wondering when the seizures will come back, and what they will steal away from her this time. These are the things I want people to understand from our story: Epilepsy is elusive and confusing. It isn’t always simple to diagnose or to treat. It isn’t easy to live with, even for individuals who, like Esmé, are currently “stable” but not “better.” And, most of all, I want others to know there was a time that I didn’t think epilepsy awareness was important to me, personally. And then my daughter was diagnosed, another 1 out of 26. Trust me, when that “1” is someone you love, epilepsy awareness is every month. Every day. Follow this journey on The Cute Syndrome. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and 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 Share Your Story page for more about our submission guidelines.

Hillary Savoie

When My Child With Special Needs Learned What No Adult Could Teach Her

My daughter, Esmé, has a developmental delay. She doesn’t yet speak or walk or eat with her mouth. Harder still, Esmé also struggles with a number of social cues. Her special education teacher has been working on waving for I don’t know how long. I lift her hand every night to wave good night to her papa. Every therapist waves hello and goodbye to Esmé, urging her to join them. Whether it’s because of her lack of control over her body or because she doesn’t understand, we don’t know, but Ez has never indicated any interest in waving. Never once has it seemed to register for her. I’ve never truly worried that she wouldn’t have friends. I know there are kind and gentle souls out there waiting to embrace her. And I also know Esmé is sweet and fun — even if she can’t run or speak or play in a typical way — and that people are drawn to her. But I certainly never imagined she would garner the kind of consistent and genuine friendship I have observed while she plays with her peers on the playground of the Taylor School where we’ve been visiting once a week for a year. On the playground, I stay out of Esmé’s visual range while helping with the other children as they play. Esmé is almost constantly in the middle of a circle of friends. One moment she is sitting at the top of the slide with her teacher, Dorothy, banging her feet on the platform while other kids joyfully join in, laughing and getting louder as they see her happy response. Another moment I scan the playground and find her sitting up in a circle of friends. I had missed her — passed over her twice — because I couldn’t recognize her strong posture. Last week as Dorothy and I pushed Esmé’s red wheelchair out to the playground, we heard the usual shouts: “Ezzy! Esmé is here!” One of those shouts came from a girl just a few feet away. She ran right over to Esmé. As the girl approached, Esmé shifted to sit up straight as her back lifted off of the support of the chair. She leaned toward the girl who had stopped in front and to the left of Esmé’s chair. The girl raised her left hand and said, “Hi, Esmé!” Esmé looked back at her for a beat, and then, pointedly, lifted her own hand and smiled back at her. Dorothy and I audibly gasped. We glanced at each other, each of our faces clearly asking the same question, “You saw that, too, right?” Just like that, her peer modeled something, and Esmé, on cue, returned the gesture. Esmé’s friend taught her what none of the adults in her life could: the signs of friendship. However, what I keep turning around in my mind isn’t so much the gift that the school is giving Esmé. What I think about is the gift the school is giving to Esmé’s peers — like this little girl — by modeling inclusion when kids are old enough to understand she’s different, but not held back by that understanding. I have come to terms with the idea that my daughter’s trajectory will be as unique and unpredictable as her combination of genetic disorders is unique and unpredictable. I have grown to understand all we really can know about Esmé is what we know of her in the present. I had to unlearn everything I knew about childhood and milestones in order to meet her there in the present. But her friends have learned the right things from day one. This is their friend, Esmé. She is going to be 5 in January. She doesn’t speak, but she knows her colors, letters and numbers. She can read. She doesn’t stand without support, but she moves through space in her dancing motion of rolling, pivoting and crawling. Perhaps, most importantly, she has a cat named Chicken. And she likes it when her friends make loud sounds on the slide. Her friends have included her, as she has learned to mirror their signs of friendship. And that’s exactly what kids should be learning on the playground. Follow this journey on The Cute Syndrome. The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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 Share Your Story page for more about our submission guidelines.

Hillary Savoie

Mom's Response When Someone Blocks the Accessible Bathroom Stall

I often find myself struggling with how I set the boundaries of my expectations of others with respect to my daughter Ez. What are appropriate expectations to have of caregivers? Of her doctors? Of her school district? Of her family members? Of the children she meets? Of the strangers who see her out in the world? What are their obligations to her? How do I walk the line between recognizing and accounting for (and expecting others to recognize and account for) the things that make life a bit harder for Ez and expecting her to be embraced as “just another kid,” as a peer, as a member of society who isn’t actually more important than anyone else? These are not easy questions. But these questions are ones I grapple with constantly. I find myself constantly saying to my husband André or my mom or a friend, “Is that OK? Um, no. Right? Or am I overreacting?” I had one such experience on Tuesday that so clearly fell into the “not OK” category that after walking away from it and explaining what happened to André, I was still so aghast that all I could say was, “Well, at least I know what my next blog post will be about!” Dear reader, let me set the stage: On Tuesday we took Esmé for a trip through Vermont. We had several things in mind to do, but among them was a visit to the Ben and Jerry’s ice cream factory. I’ve always wanted to go. Ez has been showing some interest in eating ice cream by mouth — and Ezzy eating anything is honestly reason enough to go just about anywhere. So we went. I waited in the crazy long line in the ridiculous heat to order super yummy ice cream, while André pushed Ezzy’s red wheelchair around the whole place, stopping to get tickets for the factory tour inside. So far so good. When we settled in a shady spot on the patio, we each offered Ezzy tastes of our ice cream over and over. And over and over she pushed them away, crying pitifully with the little bit of chocolate on her trembling lips. So we shifted gears, quickly devouring our rapidly melting ice cream ourselves and moved inside to gather at the designated tour starting time. We waited for approximately 30 seconds before hearing Ez vocalize in the unmistakeable sound that let us know a trip to the bathroom was in order. André and I looked at each other with that “Uh-oh” expression. I thought about her portable potty… in the back of our car down the hill. “I’ll take her to the bathroom,” I said, “Hopefully she can use the restroom here. If not, we will have to head to the car.”  Ez can use a regular toilet, but it isn’t always easy on her or me . So with a hopeful glance back at André she and I and her wheelchair headed to the bathroom line. Any parent in the world would have recognized the look on my face. With a crying, wiggling kid in my arms, too much stuff hanging off her chair, I tried to navigate a just barely accessible bathroom. A handful of kids stood in line ahead of us. A little girl, perhaps 10 or 11 years old, got in line behind us and her mother was directly behind her. By the time Ez and I made it to the front, Ezzy was panicking in my arms. The next bathroom to open up was a regular stall — in which we absolutely would not fit. So I turned to the little girl behind me and said, “You can go ahead, sweetheart,” then nodded toward the accessible stall next to me, I said, “I need to wait for this one.” The girl walked along to the stall and stepped in. She immediately backed out with a concerned look on her face, and said, “Mom, come here.” An exchange between the two commenced across the bathroom; turns out the stall wasn’t totally clean. While the conversation was going on, I was relieved to hear a flush come from the accessible stall. I started to shift Ezzy’s weight and her chair around so I could get her frustrated flailing little body into the stall quickly. The mother behind me had still not gone over to her daughter. She instead responded with, “OK, well, you may just need to go into another stall.” And then as the person vacated the accessible stall, the mother stretched her arm in front of me and waved her daughter in before us: “Here, just go in that one.” Wait, what?! I’m going to pause here to discuss this. Even if she was clueless enough to not see that I was holding a child with a disability and pushing a wheelchair (exactly who this stall was there to serve), and thought instead that Ez was a baby, that was still the only stall with a changing table. It was also the only stall I could fit in. I’d clearly communicated this was what we were waiting for. I’d allowed her to pass in front of me specifically because we needed the accessible stall. Even her daughter seemed to hesitate, looking back at her mom like, “Really, because… um…” I felt completely invisible, or perhaps it’s fairer to say I felt as if the mother was trying to make us invisible, actively ignoring the needs of others to fill her own needs. I know the look she had, the look of trying to ignore the inconvenience we seemingly pose to the world around us. It’s the partner of the exasperated look she gave me as I tried to maneuver in the small, crowded bathroom. I see it on some drivers’ faces when it takes us a bit longer to walk across the street. Or on some shoppers’ faces when Esmé blocks the way in her gait trainer. I see it when we take up too much space or move too slowly or need a bit of extra attention, when we ask for accommodation. Not every time. Not all the time — but more often than seems right. And like many things that happen over and over to a person, often the question isn’t so much the single isolated incident of being wronged, or overlooked, or treated as less than, or being made invisible — so much as it is the whole thrust of our reality. It’s the weight of minor infringement after minor infringement — of having to be the one whose job it is to regularly “tell people firmly but nicely not to be a**holes” (as my friend put it earlier this week), because my kid’s needs might otherwise be overlooked in a harsh world. It’s particularly hard for those of us who lack strong voices of our own or whose voices are regularly crowded by the din of “me” and “mine.” In the end I did not, as the polite self-sacrificing side of me might have liked, shrink back and allow it to happen. I also did not, as the snarky voice in my head did, say, “Of course, I’m so sorry my upset disabled child and I have gotten in the way of you doing whatever you want to do all the time…” Instead, I turned toward her, my heart racing just a little bit, and said, as I’ve had to say before, “Um, no. Absolutely not.” Follow this journey on The Cute Syndrome.

Hillary Savoie

When My Daughter Recognizes She Can't Do Things Other Kids Can Do

Last Monday, my daughter Esmé, her caregiver Mayah and I went out for ice cream. We sat in a shady spot with our cones. Ez sat in a tired and slightly wilted, but happy, side reclining pose in her wheelchair. We gave her tiny tastes of ice cream off our fingertips, and we gave her a tube-meal while trying to down our ice cream before it melted down our hands. After a while, I noticed a little girl sneaking closer and closer to us in a shy effort at making friends. Eventually she started talking with us. She was sweet, articulate and curious, telling us about her big sister and baby brother between darting back to her grandmother now and then to steal bites of her ice cream. At one point, I asked her how old she was. Four, she said. I responded with a smile. “Esmé is 4 too. When is your birthday?” Turns out, she was born the day after Esmé. I found myself troubled by what Esmé must think or feel when she sees another child her age able to do these things so easily — when she sees another child engage her mother in a way she cannot. This worries me more that it has in the past, because in the past she seemed not to notice or care much what others did if it didn’t impact her. But we’re seeing this emerging social awareness — primarily born, I believe, from her time with her wonderful school friends. For example, this week at school for the first time she recognized that her classmates were transitioning from the reading rug over to the tables for snack. Her classmates all stood up and moved in that direction. She followed them, purposefully army crawling to the table to meet them. And then she sat at the table until all of the children were finished. This is a feat for her. Later on in the week, she tried to crawl out of her occupational therapy session with her caregiver and her therapist. She then aimed herself toward the door I had disappeared behind, answering their questions as to where she was going with a Maman, Maman, Maman. All of this is wonderful. It means she’s increasingly attuned to her surroundings and what people are doing around her. It also means she’s going to be increasingly aware of the difference between her and others. Recently we watched an unfamiliar episode of “Yo Gabba Gabba!” And in it the characters talked about all the things “babies” cannot do — walk and talk and eat on their own. Ez loves “Yo Gabba Gabba!” and had been watching in her intent way — chin up in a way that always makes me think she’s about to take notes. But as soon as this discussion started, she began to whine in protest. She got increasingly anxious until I turned off the show. It may have been a coincidence. But I can’t help but think she understood and was upset she might be seen as a baby because she doesn’t walk or walk or eat on her own… just like I can’t help but think she understands when kids younger than her point at her and say, “Look Mommy, a baby!” I tell her all the time what a good girl she is, what a big girl she is and how proud we are of everything she can do. And I try very hard not to place pressure on her about future successes. I never want her to form her self-worth or identity around what she might do or not do someday. Nor do I want others to perceive her as incomplete because she’s not doing something yet. You can’t explain to the kid who calls her a baby in passing that she’s older than him. But we have been able to educate her classmates about something I believe is so much more important than anything they might learn in preschool: thoughtfulness and sensitivity to someone who is different from them. I truly believe they will carry this gift with them for life in some way. And, at the end of the day, I have hope that the little girl we met last week who was one day younger than Ez is learning that, too. There is evidence she is in the way she seemed unfazed that Ez was her age, in the calm model her grandmother presented as she kindly remarked about Esmé’s beautiful name. They weren’t overly curious, or eager to categorize her. They just accepted her as she is: this is Esmé, and she is 4 years old. Follow this journey on The Cute Syndrome.

Hillary Savoie

When My Daughter With Autism Kissed Me for the First Time

Last summer I wrote about being asked if I felt loved by my daughter Esmé. At the time I quickly responded that, yes, of course, I felt loved by Esmé. And I do. I really do. I know beyond a shadow of a doubt that Esmé loves me deeply. I know it with the same certainty that I know I love her. I know Esmé loves me by the thrilled sounds she makes to me. By the way she sinks her head into the softness of my side. By the way she looks meaningfully into my eyes as if she’s trying to transmit an important message to me. I know by the way her emotions jump across the space between us. I’m still so close to my daughter that I believe we often mistake each other’s body for our own. Her hands explore my mouth and hers, my fingers tickle her sides, and I laugh with delight as the tips of my fingers tickle me back; I need to remind myself to breathe when she cannot. More than four years of supporting her body, reading her motions, compensating for her weaknesses has made her an extension of my body. Her need has made me an extension of hers. In many ways, we love each other as we love ourselves — in that honest, quiet, accepting way. But I also know how this must look from the outside. Esmé doesn’t run to me and leap into my arms. She doesn’t speak the words, “Maman, I love you!” She doesn’t cling to my leg. Loving a mother in these ways requires understanding that we’re, in fact, two separate people. As a result, it’s the kind of love that grows in time. It’s the kind of love that develops slowly as children and parents move from the immediacy of newborn love to the acknowledgement of a child’s individuality all the way through to the respectful love that exists between adult children and their parents. It’s a love that’s impossible without distance. I’d be lying if I said I didn’t crave this other love from her. But I’m not certain I realized how much I craved it until last night. In December Esmé kissed me for the first time. It was a tremendous experience. I knew she was trying hard to show me she missed me. She was more likely than not trying to do something she thought would please me. It was loving but also quite fleeting. In the manner of much of Esmé’s affection, it’s a “here one moment, gone the next” kind of experience. There’s no negotiation. Her love is ethereal. If you look at it directly it might disappear. I accept this. I pride myself on loving Esmé the way you can appreciate an exquisite flower — carrying the image with me without needing to pluck it, without needing to claim it. At the same time, it’s undeniably isolating. I grew up in a family filled with a lot of love. We’re an effusive bunch. There are hugs, squeezes, back rubs, kisses, loving words — more than enough to go around. Most of my life I have savored that love. But I have learned to live with less of it in the last few years. Part of me has stiffened against it, afraid that the kindness might unravel me. Another part of me is determined to explore how love can exist in the less obvious spaces — how you can nurture the subtle love that grows in between words, in the clinical actions that fill much of my time with Esmé. Like in the stillness of her body for the pause between an uncontrolled hand smacking my chest and a loss-of-tone head-butt against my lip and nose. Recently Esmé has started to hug me. At first I mistook it for a flinch — an indication that she did not want to be set down — or a little snuggling in to get comfortable on my shoulder. But, much in the manner of her kisses, she’s kept repeating the action to be certain I understand her intention. The first time it happened clearly was after I lifted her from someone else’s arms. She’d wanted me in a way I’d seen other children want their mommies but never experienced myself. She’d indicated her pleasure at our renewed closeness by squeezing me, letting go, sitting up and then returning with a squeeze. I so appreciated it but didn’t want to look at it directly for fear of this love slipping between my fingers. “Oh Ezzy, Maman really loves your hugs, thank you!” I’d said. And we moved on. She’d repeated the hugs a few times again over the last few weeks but not with great intensity. Until last night. Last night she was struggling, having been awake since 1:00 a.m. with only a brief nap. I brought her into her room to change into her pajamas. I sat on the floor in front of her dresser and stood her up next to me, with my left leg and arm supporting her. I asked, “Ezzy, what color pajamas do you want tonight?” She became giddy at the prospect of her pajamas, smiling and clinking her little fingers against her teeth. I held up a set, “Green?” She turned toward me and smiled bigger. “OK, green it is, my love.” She suddenly lunged toward me; I braced myself anticipating an unintentional smack. Instead, she wrapped her slender unruly arms around my neck, settling her mouth next to my ear as if she was going to whisper a secret to me. And then she squeezed, hard. The left arm working harder than the right, as usual. In that moment I realized with such clarity how difficult it must be for her to do this… the coordination alone is a feat, not to mention the strength to wrap me up in her grasp. In that moment I understood in my heart that she hasn’t been avoiding hugging me for lack of desire. She’d been unable to figure out how to do so. When she released me and leaned back to look at me, a look of pride on her perfect little face and a clump of my hair caught in the stiffened fingers of her right hand, I crumbled, crying. Then I quietly hugged her again. She squeezed me back again, sensing my need. We held each other for a moment and then let go. A version of this post originally appeared on The Cute Syndrome. Hillary Savoie, PhD, has blogged about life with her daughter Esmé since September 2012 on The Cute Syndrome Blog. Hillary is also the Founder and Director of The Cute Syndrome Foundation, which is dedicated to raising research funds for and awareness of rare disorders like PCDH19 Epilepsy and SCN8A Epilepsy. She is also the Chief Communications Maman at the Feeding Tube Awareness Foundation.  Hillary tells the story of her family’s journey through her daughter Esmé’s genes as they try to find a diagnosis in her story Around And Into The Unknown, available as an individual e-book and as part of the paperback anthology 6 of 1 Travel. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Hillary Savoie

Why Hearing ‘You’re Stronger Than Most People’ Makes Me Feel Awful

Recently I was trying to explain to my hubby why it sometimes gets under my skin when people tell me (regarding Esmé) things like, “I don’t know how you do it… you’re just stronger than most people.” He said that I should take it at face-value and just accept the compliment that it is no doubt meant to be. I know he is probably right, but the emotional fact remains that it makes me feel sort of awful. I suppose it gets to me for a number of reasons, but the worst of it is because I feel a bit like it is insulting to Esmé, like others night see her as “too much” work… and suggests that they don’t see the particular and unexpected joys that can only only come (in at least equal measure to the difficulty) from life with a child like Esmé — a child who insists that you take her as-is on her terms, a child whose every inchstone is a major celebration, who constantly reminds us of the goodness in the world. It makes me want to shake the person and say, “Yeah, it is totally hard sometimes. But it could be 1,000 times more difficult… And, honestly, what is the alternative? I mean, really, just because it is hard, what am I going to do? Leave her at the firehouse? Is that what you would do with your kid?” What most people would do is cry, be terrified, yell and scream… and then do the very best they can with what they have to work with (and maybe cry and yell again). Telling people in somewhat unusual or trying situations that they are naturally “stronger” or better equipped to handle their difficult situation than other people is almost a denial of the very real and often overwhelming emotions that parents like me feel while trying desperately to be “together”… trying to accomplish something beyond just surviving day to day, trying to sort out some kind of stable daily life. It also overlooks the tremendous amount of work that goes into life with a child who is medically fragile — work to construct some kind of structure that nurtures and challenges a child who lives in a precarious world where a simple misstep (a lost night sleep, too much stimulation or exposure to a cold) might mean seizures, hospital stays, lost milestones. It overlooks the work in takes to maintain physical, emotional and intellectual health in the face of building a life around the never-ceasing needs of another individual with an uncertain future… as well as the work of the intricate scaffolding of people who we have to rely on to make it all work: therapists, doctors, nurses, family, friends — people who we’d rather not need to help us raise our daughter, but, honestly, cannot do without. I am absolutely not strong enough to do this on my own. I work hard to make myself stronger every day, but I constantly fall short. The idea that I am somehow naturally stronger than other people would be in my situation — that I am in some way built for this — is essentially a disavowal. Anyone’s life can go from status-quo to real life-threatening chaos in a single step that turns into a freefall. Because it can… and that, friends, is terrifying. And because that reality is so terrifying, most people prefer to think such things happen only to people who are somehow prepared for them. But they don’t. They happen to people, just regular peopled, imperfect people. People like me. People like you. This post originally appeared on The Cute Syndrome. Hillary Savoie, PhD, has blogged about life with her daughter Esmé since September 2012 on The Cute Syndrome Blog. Hillary is also the Founder and Director of The Cute Syndrome Foundation, which is dedicated to raising research funds for and awareness of rare disorders like PCDH19 Epilepsy and SCN8A Epilepsy. She is also the Chief Communications Maman at the Feeding Tube Awareness Foundation.  Hillary tells the story of her family’s journey through her daughter Esmé’s genes as they try to find a diagnosis in her story Around And Into The Unknown, available as an individual e-book and as part of the paperback anthology 6 of 1 Travel. The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. 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. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .