Blind Judgment

I was expecting a lovely afternoon at the park as I walked down the street with my sons toward the toddler playground near our house. It has a spider web climbing structure made out of rope that my boys were excited to play on. But when we got there, I was immediately met with one of my biggest pet peeves…older kids on the little kids’ playground. The five girls looked to be 13 or 14 and were more than old enough to be playing on the older kids’ playground 100 yards away. My good mood immediately shifted to annoyance as I hoped these girls did not disrupt the free play of my little boys.
I sat down in front of the giant spiderweb climbing structure. The idle chat of the teenage girls was amusing. They were very cute and giggly, as young girls are. They talked about the boys they liked, their favourite classes and how much homework they had. I wondered why a bunch of teenage girls had chosen the kiddie park as a place to come and talk about their day.  

Less than ten minutes after we arrived, a woman, who I assumed was one of the girl’s mothers, came over and told the girls they had ten more minutes before they had to leave. Looking at her they said, “okay,” and they got up and headed towards the equipment to play. Three went to the slide and two walked toward the spider web where my sons were busy climbing. 

It was right about this time my older son was reaching the top of the climbing structure. “Mom…mom! Look at me! Look how high I am! Take my picture!” He called down to me. I took my iPhone out to take my little boy’s photo. But before I could push the button to take the shot, one of the girls stepped directly in front of me blocking my view. She was completely clueless to the fact that she was in my way and she stood there obliviously chatting with her friend. 

After a minute or two they decided to climb the giant web. The were having fun bouncing on the ropes as they made their assent. However, this made the whole web quite wobbly. My little boy at the top felt scared and wanted off. When he called for help both girls froze. One of them looked directly at my son and said, “I’m so sorry, I didn’t see you there.” I felt annoyed. Here they were on the little kid equipment and they didn’t think to stop and look if there were any toddlers in the way before they started jumping on the ropes. “That’s okay,” my little boy said happily, “I was getting down anyway.” Once the boys were safely off, the girls continued making their way up. I took my sons to the other side of the playground to pay on something else.  

I couldn’t help but feel aggravated watching the girls sit on the ropes and chat. Right next door was the playground designed for older children. Yet here they were in the kiddie park inhibiting my sons ability to play on the playground designed for them. I looked disapprovingly at the adult who had brought them here. I watched as she sat and said nothing while the girls clumsily and thoughtlessly took over the playground. It was clear to me why these kids were environmentally clueless. They were not being taught any different. I felt like the mother was doing a disservice to the girls for not directing them to the other playground. Instead of teaching them to be aware of small children and the impact of their presence, she allowed them to play in an area that was not appropriate for them.  

I watched my little two year old climb the ladder to the highest platform and push his way through the girls legs to reach the top of the slide. My older son saw his little brother going down the slide and ran over to join him. When he reached the top platform I heard the voice of one of the girls. “Hey there,” she said to my son. He smiled and waved but said nothing. The three girls at the top blocked not only the entrance to the slide but also the entrance to the little bridge that led to the other section of the structure. I watched and waited silently, curious to see how my five year old would handle the situation. “Which way are you headed?” one of the girls asked. He happily announced that he was going down the slide and they all smiled at him. The girl blocking the entrance to the slide stepped to the side so that he could go down. “Girls…time to go,” called the mother watching the girls. 

The two girls on the spider web began walking back and were so deep in conversation that they didn’t even see the slide in front of them. The girl on the left bumped into the end of the slide with her knee. Her arms went up defensively as she stopped abruptly. The girl on the right of her felt her friend stop and, in turn, ducked. Their arms reached out frantically in front of them but were met by nothing but air. All of a sudden, I knew. These beautiful little girls weren’t clueless and they weren’t on the wrong playground. These little girls were blind.  
My perspective changed in an instant and I could now see subtle things I hadn’t seen before. I was amazed that they compensated so beautifully that even watching them I had no idea they couldn’t see. They moved with a confidence and fluidity I never anticipated from someone that has severe visual impairment. They looked at each other when they spoke and even climbed on the rope web with sure feet. They had no assistive devices or animals. They defied everything I thought I knew about what a blind teenager would be like. I watched in amazement as one of the girls felt her way to the fireman pole. She slid down it and called to her friends, who followed one by one. Guided by the voice of their teacher they each felt their way across the playground to the entrance of the park.  
I felt horrible. I interpreted them stepping in front of my camera and climbing next to my son as them being clueless. But now I realized I was in fact the clueless one. How could I have been so hypocritical? My own children have an invisible disability caused by a rare neurological movement disorder. I should have known better than to make assumption. These little girls faced great adversity and they handled it with so much grace. They did not deserve my judgment and I did not deserve an explanation for their presence in the park. I judged them without all the facts. I assumed because they looked typical and seemed able bodied, they were. I had been annoyed at children who were doing absolutely nothing wrong. It was a realization that instantly soured my stomach.

Making me feel even worse was the fact that I have been on the receiving end of this kind of judgement and I know how bad it can hurt. I absolutely hate when people judge my choices with my children. Just because my choices don’t make sense to a passerby doesn’t mean they don’t make sense. And yet here I was, passing by, judging this teacher. I no longer saw an adult who had failed to teach these girls appropriate playground etiquette, but instead saw a beautiful person with a very special career working with blind teens. Counter to my initial assessment, she had made a very calculated and thoughtful choice bringing them here. They were in a fenced in area that the girls were clearly familiar with. The soft mulch was the ideal surface should they trip or have an accident. The lower height to the climbing structures allowed the girls the freedom to move and climb and be normal kids without the risk of a high fall. I was so disappointed in myself. I had became the thoughtless adult who judged a caregiver’s choices when I didn’t have the whole picture.

I now knew that these girls were incredible. They were kind, they were confident and they were very aware of their surroundings. Watching them leave the park I felt nothing but respect for them. It’s funny because I’ve spent so much time and energy and effort to cognitively and consciously stop judging other moms. Moms like myself. Moms who make seemingly odd choices because they have extenuating situations. But what I had failed to realize was that special needs moms have special needs children. The judgment that moms face is simply a reflection of the judgment the children receive. It’s the kids’ bodies that work differently. It’s their brains that are wired uniquely. I’m the one who feels the judgement now, only because my kids are little and they are always with me and in my charge. But what happens when special-needs toddlers grow up to be special needs teens? Special needs grown ups? The judgment I face will transfer to them. It will no longer be my strange choices, but theirs. They will be expected to fit in with society and behave like the masses, except they won’t because they can’t. And while they won’t owe the world an explanation, the world will expect one. People like me will judge them.  
Standing there watching my sweet little boys play together I couldn’t help but be a little heartbroken. In judging the girls, I had failed my own kids. I’m acutely aware of hidden disability and special-needs and yet I still fell into the trap of judgment. How could I raise my boys to feel like it was okay to be themselves and do things differently when their own mother jumped to conclusions about people who were facing unique challenges and struggled to adapt to a world that was often harsh and unaccommodating?
It’s funny how life surprises us when we’ve let our guard down. When we are not paying attention it can teach us things and change our perspective by illuminating the faults in our existing view of the world. Sometimes these moments are big and hard to miss, and sometimes they emerge from the obscure. Today it happened on a giant spiderweb while my kids were playing at the park. The girls’ inability to see me allowed me to see myself. They showed me that awareness does not necessarily equate to change. They reminded me that kindness and compassion is a choice we must constantly make. 
So to the blind teens in the park today, I am so glad our paths crossed. I feel beyond blessed to have people like you as a part of my community. You humbled me. You amazed me. You made me a better person. I hope you continue to use your tremendous abilities to defy the expectations of the world around you. You stood tall, you overcame and you serve as tremendous role models for my children. I thank you. 

If you believe in ending the cycle of judgement known as “the mommy wars,” then please join me in making a commitment to supporting our fellow moms. To join the Motherhood Movement go to mommitment.org and make your #mommitment today!

Another Baby, Another Inch

Looking in the dressing room mirror I wanted to cry. But doing so seemed silly and childish, which made me want to cry even more. I was the same size…the same weight…and yet somehow my clothes didn’t fit me. The truth was, regardless of what the scale said, I wasn’t the same. I no longer knew my own body. It had changed and now I felt foreign to myself. Standing there looking at myself I realized that I was going through a second puberty of sorts and I didn’t like it.

I felt like I did when I was thirteen and I started to get breasts and hips. My budding breasts were neither childlike nor womanly. Too small for a bra and too big to not wear one. It was awkward. My hips began to widen far more than I ever thought possible. The girls section became too little kid for me and the junior section, filled with mini skirts and tube tops, felt too grown up and sexy for my still developing body. I was stuck in between girl and women.

By college, even though I was no longer trapped in the purgatory of puberty, I still had parts of my body I didn’t like. There were things I wished I could change. The heavy bone structure that made me one hell of a gymnast did not translate well into the fashion world. I wished I was less short and less thick and I envied long and lean women. Despite my less than perfect physique, I was still fit, attractive and healthy. I had grown to accept my body and I was no longer self conscious of how I looked. So I was caught by great surprise that day in the mirror when I looked at myself and felt utterly deflated. I may have been in my mid-thirties, but I felt like I was in my mid-teens.

Earlier in the day when I stood in my bedroom staring at the button of my pants I was confused. It didn’t make any sense. I tried to pull the two sides together in yet another futile attempt to close them. But it didn’t happen. The inch wide space between the two sides of the fly remained. I tried another pair. It was the same thing. I pulled my pants off and went back to the scale in my bathroom. Looking at the number I tried to figure out how I could be back at my pre-baby weight and yet my pre-baby jeans did not fit. Same body, same weight, but different size. Annoyed, I called my husband and told him all my old jeans had shrunk.

My husband was undeniably amused and told me that it was highly unlikely that all my clothes simultaneously and spontaneously shrunk at the same time. Chuckling, he agreed to meet me after work so he could help with the kids while I shopped for new clothes. It was this decision that caused my pubescent-like freak out. Standing there in the dressing room I was wearing jeans the exact same size as the ones at home, except these jeans fit. “How is this even possible!?” I argued with the sales girl. She smiled and quietly said that the size wasn’t the issue. It was the shape. My shape had changed. By body was different.

Back in the dressing room I stood looking in the mirror and cried. The sales girl was undeniably right. My boobs were smaller from years of breastfeeding. My hips were wider from carrying and birthing babies. Looking down at my sandals I knew even my feet had grown half a size. I no longer had the body of a young woman, but not yet the body of a middle aged one. My bras were too big, my pants were too small. For the second time in my life my body felt foreign to me. I felt awkward and unattractive. I suddenly understood the whole mom jeans phenomenon. I honestly had no idea how to dress my new figure. The cute clothes of my past were no longer appropriate and not something I could wear in the sandbox. The comfortable utilitarian clothes that fit made me look old and frumpy. Just like when I was thirteen, I found myself stuck between two eras. Not wanting to look too sexy, but still wanting to be young and attractive. I was not sure if it was possible to be both at the same time.

My husband opened the dressing room door and I felt instant annoyance by the big goofy grin on his face. I gave him my very best, “this isn’t funny” look, but it only seemed to heighten his amusement. “Babe,” he said, “you really didn’t think you could grow two human beings without any physical changes did you?” I shook my head no. But I was still surprised. Every mom I knew talked about loosing the baby weight and getting back to normal. So I assumed losing weight would see my physique return to normal. No one warned me my body would be so dramatically changed that my old normal would cease to exist.

As I paid for my new jeans, I wondered if my husband found my new body as foreign as I did. I wondered how long this awkward phase would last. I hoped I could come to peace with the changes I was experiencing and once again feel comfortable in my own skin. “Mommy, up!” came the voice of my little boy pulling at my shirt. I bent down, picked him up and set him on my hip as I signed the credit card slip. It was as if he knew I needed it, because he nuzzled his face in my neck and wrapped his little arms around me in a tight hug. I melted and hugged him back.

My little boy fit perfectly on my hip. I was suddenly grateful that it was as wide as it was because it acted like a shelf that took some of his weight off my arm. I wondered how I could carry him so much without the aid of my new hips. I thought about how my new smaller breasts had kept two children alive and provided years of nourishment and antibodies. My softer rounder stomach may never be my favourite aesthetic part of my body, but it had allowed me to grow two people. It was then that I finally heard my husband’s words. I grew two human beings.

I could not argue that while my body was not the same, it was incredible. Women are amazing. I had no appreciation for what my body was capable of. But, buying blue jeans that day I realized my body is remarkable. I may never feel comfortable sporting my flabby mom stomach in a bikini again, but it didn’t mean that there was anything wrong with my stomach. It meant that there was something wrong with my perception. I had a long way to go before I reached full acceptance of my body again, but that day I took the first step. My tummy may not be conventionally beautiful, but it had brought two amazing littles lives into this world. I could think of nothing more beautiful than that.

“I can’t believe I had to buy new jeans,” I said to my husband as we left the store, “thanks for being so understanding.” He smiled at me and took our little boy off my hip and opened the door. “What’s not to understand?” he asked, “You grew two people. Some new jeans seems like a pretty small price to pay for me to be a dad.” I felt a strong and immediate urge to hold my husband’s hand, but I couldn’t. He was busy carrying our two little boys.

“Mommy grows people,” my older son informed his little brother as we we walked down the street, “she grows them in her stomach!” My little boy turned and looked at me in disbelief. “It’s true,” my husband said laughing. “Isn’t that so cool?” my oldest asked. My husband nodded his head in agreement. “It’s more than cool,” he said to our boys, “it’s amazing.”

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My Guardian Angel Wears Blue

The man dressed from head to toe in dark navy blue materialized out of nowhere as he stood outside my window. “I need you to put the car in park,” he said. I didn’t answer and I didn’t move. He didn’t ask again. Instead, he leaned inside my widow and reached across my lap as he pushed the gear up into the park position. “Ma’am are you okay?” he asked as he pulled himself back out my window. I didn’t know how to answer. I didn’t know where I was or what was happening, let alone if I was okay. So, I said the only thing I was thinking…the only thing that came to mind, “I’m pregnant.”

I closed my eyes and rested my head on the back of my seat. The pain in my face was horrible. I felt like someone had lit it on fire. I tried not to throw up as I laid my hands protectively on my budding stomach and listened to the voice of the man outside my window, “Dispatch. I’m going to need a bus too. The driver of the vehicle is pregnant.” There was a fuzzy white noise and then the sound of a woman’s voice, “Copy that. Ambulance is in route.” Then the man standing outside my window disappeared.

In the minutes that passed I experienced an odd convergence of time as everything seemed to speed up and slow down simultaneously. The sensation made me feel disoriented. I closed my eyes in hopes it would make me feel less dizzy, so I never even saw the men get into my car. “Don’t worry ma’am, I’m just turning off the engine for safety,” came a calm but intense voice next to me. I nodded okay and immediately regretted it. Shooting pain shot up from my shoulders and neck and into my face. I looked over and saw a middle aged man in turnout gear sitting next me. “Captain? I asked. He smiled and asked how I knew. “My dad and grandpa are both firefighters,” I explained, “I wore my grandfather’s captain bugles on my wedding dress, so I recognized yours.” I felt someone behind me grab my arm and I jumped. A deep but gentle voice assured me he was just putting on a blood pressure cuff and taking my vitals. “Ma’am are you experiencing any pain?” asked the Captain. “My face hurts like hell,” I said as I looked down. My shirt was covered in blood. “Am I bleeding?” I asked. Neither man answered me. Instead the captain told me he was concerned about my baby and asked if I had any abdominal pain or if I was wet. I reached down between my legs and felt the seat. “I think it’s dry,” I said cautiously, “I don’t feel wet and my stomach doesn’t hurt.” He told me that was a good sign and promised me they’d get me to the hospital as soon as they could. Then both men got out of my car leaving me alone to wait. 

“Hey!” yelled the voice of a man outside my window. He was new to the scene and dressed in blue and white and I knew he must be a paramedic. “Tell the guys to get a crowbar or something to pry the door open. I can’t get her out!” The captain returned and I heard the scraping sound of metal followed by a pop. My door opened and the men pulled me out. Once I was standing I turned around to look at my car. I gasped. It was crunched all the way to the front doors. The passenger space inside was intact so I didn’t expect the damage to be as bad as it was. Even more surprising was the car behind be. It looked like a ball of metal. “Oh my god!” I said, clearly shocked. The paramedic was kind but serious as he helped me onto the stretcher. I saw an absurdly long line of cars in front of me and for the first time I realized that my car was sitting directly in the way of oncoming traffic. 

 My heart began to race as I tried to figure out how my car ended up where it did. Even more importantly, I wondered how the oncoming traffic hadn’t hit me. “Is the other driver coming with us?” The paramedics asked one of the firemen. “No. He’s fine. Amazingly, he just has some airbag burns. He’s still talking to the cops. Take her in and get the baby assessed. We’ll call for another transport if we need it.” Then they scooped me up and drove me to the hospital.

The doctor stood smiling at me as tears fell from my face while we watched my baby do backflips in my tummy. Seeing the little black and white blob on the screen showing strong vitals made me start shaking uncontrollably. It was almost like I was hanging on and compartmentalizing until I knew everything was okay. Now, I seemed to be falling apart. To make things more emotionally charged was the knowledge that I was hurt. I had a concussion and a sprained neck and back. I had a laceration over my eye and my face was broken in two places. One fracture over the orbital bone and one on the cheek bone. It was what they called an “unusual fracture pattern” that left my face still structurally intact, but shifted slightly. I heard words like “asymmetrical pre-mature aging,” and “probable permanent indentation.” Even worse was the news that to fix my face would require me to undergo a reconstruction of the facial bones that would put me at high risk of losing my baby. 

When I got home I called my dad and told him what had happened to me. I cried as I told him I had refused the surgery. The risk to the baby was too high and I was not willing to risk losing him over a dent in my face and some lopsided aging. The emotion in my dad’s voice was clear and I could tell he was trying not to cry. “Well, congratulations,” he said “today you became a parent.” I couldn’t help but be annoyed. It’s like he wasn’t even listening to me. “Dad, I’m not a parent yet. I’m still pregnant!” I half yelled at him. But my dad was calm and very self confident in his assessment. “Parents,” he explained, “put the needs of their children above their own. They protect their children at all cost. You did that today. Today you became a parent.” I knew he was right. Turning down treatment was a self sacrifice I never even had to think about. The answer to anything that put my baby at risk was an automatic and resounding no. But that didn’t mean I wasn’t devastated about my face.

Now, as I lie in bed with the divot in my left cheek resting against the top of my now five year old’s head, I can’t help but reflect on the miraculous chain of events that allowed us both to be here today. My facial divot and new asymmetrical cheeks seem like a small price to pay for the little life laying in my arms. Even now, its hard to believe that I was hit by a reckless driver in front of a speed trap. Even harder to comprehend is that the police officer looked up from writing a ticket just in time to see the car speeding toward me as I sat in the left lane waiting to turn. The officer dropped his ticket book and ran into oncoming traffic stopping the vehicles that were speeding toward me in the opposite direction just moments before I was hit from behind at an estimated seventy kilometres an hour. The driver that hit me never even attempted to break. The impact pushed me into the oncoming lane. If not for the officer’s quick action I would have been hit from both ends in back to back impacts. To say I’m lucky does not even begin to describe it. What happened to me that day goes far beyond luck. I never believed in angels before my accident, but now I know without a doubt they are real. I had a guardian angel watching over me that day. An angel that saved not only my life, but also the unborn life of the little boy laying in my arms. Except unlike the stereotypical depiction, my angel wasn’t winged and wearing white. My guardian angel was an ordinary man dressed in navy blue.  

“The Mighty” month of September

At the time I didn’t feel mighty. I felt tired, overwhelmed and stressed. So when a fellow blogger suggested I submit one of my articles to The Mighty for publication I laughed. I had never heard of The Mighty before, but I was sure I did not fit the description. Besides, I write about dystonia. I could not imagine a publisher would want articles about a disorder they had probably never heard about. But she insisted and I figured the worst that could happen is a rejection letter. It was a fateful decision and one that would change so much for me.

I didn’t know that The Mighty was a media company whose main goal is to highlight the beauty and triumph in disease and disability. Not only did they publish my article about dystonia, but over the course of the next year they published seven different articles I wrote. I still find it hard to believe that a media company stepped up and helped to spread awareness and understanding for an unknown disorder that no one seemingly cares about. I will forever be thankful to them.

Now that it’s Dystonia Awareness month and the Dystonia Medical Research Foundation’s September awareness campaign is kicking into high gear, The Mighty is once again showing support for the dystonia community and its foundation. They are publishing dystonia articles from a variety of authors every day throughout the month of September! These wonderful articles highlight the many voices and perspectives of dystonia while demonstrating the strength and perseverance of the people it affects.

To Mike Porath and the entire editorial team at The Mighty, thank you. Words cannot express how important what you are doing is or how honoured I am to be a contributor to an organization that is so willing to give a very loud voice to those of us who have been living in a world where few have been listening. You are providing a platform that will help break the silence that has plagued nearly half a million Americans and their families. Families like mine. This is personal. Thank you for not forgetting that! As cheesy as it may sound, you really are making a difference. Not just for the dystonia community, but for countless communities. Every article you publish spreads awareness, perspective and compassion. You are uniting people together and strengthening communities. This is perhaps my favourite thing about this particular awareness project. It has connected me to the dystonia community in a new way. It has united dozens of writers and advocates that would not otherwise have met. For this I am grateful. Thank you.

I really hope everyone enjoys reading all the wonderful stories that will appear on The Mighty site this month. I will post a page with links to them all so it will be easy to find. I will keep adding links throughout the month, so don’t forget to check back for the newest publications. While you are there reading the great dystonia articles please check out the rest of The Mighty site. I promise you will find something extraordinary there. Wether you’ve been touched by cancer, autism, mental illness, dystonia or anything in between, you will find support and community. You will find triumph and resolve. You will find joy and inspiration. You will find the mighty.

Here is the link with an up to date list of all the articles so far.

The Mighty’s Dystonia Awareness articles! September 2015 http://wp.me/P4ZlgH-2G via @RaisingDystonia

How It All Began

I sat there holding him against my chest in the rocking chair. I looked at my watch. Two hours had passed. I was both relieved he was still asleep and yet praying he would wake up. He had been up in pain all night and needed to sleep. But, I was mind-numbingly bored. I knew if I put him down he would wake. Truthfully, he woke even in my arms, but it was much easier to settle him and keep him asleep in the comfort of my embrace. So I sat. Usually I’d watch TV while I rocked him. However, there is only so much daytime TV one human being can handle. I was sick of Candy Crush and nothing had been updated on Facebook in the last 60 seconds. I picked up my cell and opened the App Store in search of games I could play with one hand. Before I could even begin, a notification popped up. I had a text message from my friend, “How did everything go at the hospital yesterday? You OK?” I sighed. I didn’t know how to answer or begin to explain. I had tried to so many times with so many people, but it was impossible to articulate. Without even thinking I tapped the Notes app on my iPhone. It was a impulsive decision that would change everything.

I stared blankly at the screen. My friend had done nothing wrong. In fact, her inquiry was kind and supportive. And yet I was frustrated. Frustrated that my family and friends didn’t understand and frustrated that I didn’t know how to make them. I knew it was my own fault. I knew that saying, “good, but hard,” didn’t really explain it. I also knew more in-depth details led to uncomfortable silence and awkward moments. I hated that even when I poured my heart out to someone they still didn’t get it. They wanted to. But, they didn’t. I felt isolated from those closest to me. I was desperate for someone to just understand that even though the medical episodes were difficult, the biggest impact on my life laid in the spaces between Dystonic episodes. The real impact resides in the seemingly innocuous little moments. Its these moments that take my breath away and leave me forever changed.

My train of thought was interrupted by the shaking and jerking of my youngest son. I put the phone down and held him with both hands just in time to catch him as he bent his back into an extreme arch and screamed. I held him through the spasm and kissed his cheeks as he cried. There was nothing more I could do. So I just sat and held him. Once the spasm was over he snuggled into my chest. Sweaty and exhausted, he fell asleep.

I picked up my phone without even thinking and began to push the buttons as my son slept in my arms. I typed without thought, structure or strategy. I never chose a subject, rather the words just flowed out of me involuntarily. Even at the time, I thought it was an odd thing for me to do. I had always hated writing. I had struggled with dyslexia my whole life and therefore avoided putting my thoughts into written word at all costs. Writing had always been painful, slow and embarrassing. So I found the sudden urge to write surprising, foolish and silly. But still, I couldn’t stop and I continued writing furiously as my baby slept. It wasn’t until he stirred in my arms and I was forced to look down that I found his head wet with my tears. The cathartic release I so desperately needed had occurred in the most unexpected way…through the most unexpected medium. Writing.

When I was finished, without rereading a single word, I scrolled up and entered the title, “To The Mom On The Other Side of the Curtain.” (http://wp.me/p4ZlgH-8) I cried as I read it, just as I had when I wrote it, and just as I had when it happened. But now that I had finally articulated the answer to the question, “How was the hospital?” I didn’t know what to do with it. How to deliver it. Who do send it to. I wanted the people around me to read it. It explained so much of what I felt. But, putting it in a mass email felt strange. As odd as it sounds, I wanted to give the people around me the option not to read it. I wanted them to choose to read it. I wanted them to be able to digest what I had to say on their own time and in their own way. A quick google search landed me on WordPress where with a simple copy and paste a blog was born.

Before I hit “publish” for the very first time, I panicked. What if my words only made sense to me? What if I looked stupid? What if my dyslexia shone through above all else? What if those close to me didn’t approve? Didn’t understand? What if my writing was horrible? But, even before I read through it again, I knew I was going to hit the publish button. I figured it didn’t really matter. No one would read it anyway, except maybe my dad and a few close friends. At the time, I assumed no one would want to read about dystonia.

The second I hit publish, an unexpected thing occurred. The urge to write more. I closed the new WordPress app on my phone and opened Notes. Then I wrote. When I was done, I wrote more. It was like the flood gates had opened and I couldn’t stop. I knew that I wouldn’t stop. While I thought I would have run out of things to say by now, I still find myself eager to write. Writing has become a compulsion for me.

Now, one year later, 17 outside publications, 53 posts and over a thousand followers, I never cease to be amazed by the outpouring of support and kindness. I feel beyond honoured that so many of you have given your time to read about a disorder that you have probably never heard of. Every single day I open my phone and feel humbled that so many of you are reading, sharing and connecting. I never imagined all the little stories I write on my iPhone would have reached so many. I’m thankful to all of you for caring about Dystonia, for sharing awareness and for spreading understating and compassion.

This has been an exciting and rewarding experience because of you. So thank you. Thanks to each and every one of you. Without your interest, compassion and willingness to embark on this crazy journey that is Dystonia, there could be no awareness. There can be no change.

When Words Matter: Why I won’t ask my kids what they want to be.

“Mama,” he said softly as we walked down the street, “I really don’t want to be a palaeontologist.” I looked down at him and smiled. It was the third time that week he informed me he didn’t want to be a palaeontologist. I could tell he was annoyed that every one kept asking him about his future career with dinosaurs. “That’s okay buddy!” I said cheerfully, “you don’t have to be a palaeontologist. You can be anything you want to be.” He said nothing as he took my hand and we crossed the street. “So,” I asked unaware of just how much my words mattered, “If you don’t want to be a palaeontologist, what do you want to be when you grow up?” He let go of my hand and hung his little head so low it pulled his shoulders down into a slump. I instantly knew I had said something wrong.

I stopped and knelt down on the sidewalk in front of him. I put both of my hands on his shoulders and asked him what was wrong. He ignored me. Using my sound, grownup logic I concluded that maybe he didn’t know what he wanted to be, but felt pressure to decide on something. I tried to explain that he didn’t have to decide what he wanted to be for a really, really long time. I told him that people only thought he would want to be a palaeontologist because he loves dinosaurs so much. He looked up at me with an expression of total frustration. “I know what I want to be! And I don’t want to be a palaeontologist!” he said in protest. I was surprised and confused. For the life of me I had no idea why he was so upset. “Well, what do you want to be then?!” I asked again. He hung his head and answered me. His sweet little words barely audible over the sounds of the busy street. “I just want to be me.”

I took a deep breath and absorbed his words. It took a few minutes of listening to him speak before I finally understood. He thought he had to grow up to “be” something else…someone else. If you conjugate, “What will you be?” into present tense, it would be like asking, “What are you?” This is a question of identity. While as adults we often associate our job as part of our identity, for my five year old, what someone does and who they are, are very different.

The association of job and identity is inherent in the answer to the common question “What do you do?” After talking to my son, he made me realize that even though we ask, “What do you do?” we answer by using the present tense of the verb “to be.” For example, when asked what we do for a living, we answer by saying things like, “I am a doctor…I am a teacher…I am a lawyer.” When we speak, we mix up what we do with who we are. When grownups describe their jobs by saying “I am” not “I do,” my son hears people describe their identity. It sounds to him like they are describing who they are not what they do.

Technically he is correct . The verb to be is used to describe the identity of a person or thing. However, in common vernacular, the verb has a more liberal definition and is often used to describe what we “do.” I sat there and stared at my little boy. I was amazed that he had made such an astute observation. He heard adults talk about what they do, by describing it as who they are and it bothered him greatly. In order to “be” a palaeontologist he thought he would have to stop being himself. Every time someone asked what he wanted to be rather than what he wanted to do, he thought there was an expectation that he should want to grow up and be someone or something other than who he already was. I loved that he had such a strong sense of self that he was willing to give up his passion to prevent having to surrender his identity to something he’d do. He loved being himself more than he loved a seemingly awesome job. His thoughtful and innocent proclamation made me grab him and hug him tight.

I also felt a little sad because while I’d like to believe my son was just being overly literal, the truth is he was kind of right. As a society and as individuals we tend to tie up a person’s job into their identity. Unfortunately, what we do often garners more respect than who we are. A lot of value is placed on our identity through what we do. It was surprisingly transformative for me to realize that we use the verbs “to do” and “to be” interchangeably in the context of professions. Even more revealing was that it took a five year old to bring our use of to be to my attention. Value and identity being wrapped up in what we do is one of the harsh realities of being grownups. It’s a reality my sweet, innocent little boy was hoping to avoid.

I pulled my son onto my lap so I could hold him as I explained how grownups sometimes use the wrong words. I told him that everyone was really trying to ask him what he wanted to do when he grew up, not what he wanted to be. As he soaked in my words, the relief on his face was undeniable and it made me hug him even tighter. Then, sitting on the sidewalk of a busy downtown street, I made my little boy promise me that he would never be anything but himself. He nodded and kissed my cheek and promised me he would always be him.

I knew in that instant I’d never ask another child what they wanted to be when they grow up. Now I ask things like, “What kind of job would you like to have?” or “What do you want to do when you grow up?” Thanks to my little boy, I now understand the power and influence of the language we use in a way I never had before. I saw for the first time the confusing messages the adult world can send to a young person. I knew our words mattered, but I underestimated how much. I wondered what other negative messages I was sending inadvertently with my words and descriptions.

I got up and I took my little boy’s hand. As we walked down the street I decided to start the conversation over. “So, my love,” I asked him smiling, “What would you like to do when you grow up?” He didn’t miss a beat and I knew I had asked the correct question. He looked up at me with a happy grin, “I’m going to dig up dinosaur bones!”

I couldn’t help but laugh.

The Value Of A Nurse

It was a familiar walk. One I had made countless times. Over the years I had entered the Children’s hospital Operating Room (OR) on a regular basis to observe and support surgeons during surgery. It was my job. I worked for a minimally invasive surgical device company and I loved it. But, today’s trip up to the second floor was not for work. This time was different. This time I was on the other side of the double doors marked, “Authorized personnel only.” They were doors I had walked through many times, but had never been forced to wait behind. Today would be filled with deja vu and reflection because today the little person walking down the long corridor to the OR was my son. My little boy. My everything. And I was overcome by emotion.

What must he be thinking? I was his mommy and I was handing him over to complete strangers in scary masks and hats. I told him to do whatever they asked and had allowed them to poke him with needles and take him away from me when he was terrified. As I watched a nurse take my little boy into the OR, I knew what he would see. Bright lights, computers, a huge anesthesia cart, empty canisters and TV screens. I pictured him assessing the room and climbing up to the giant operating table. I wondered if he would be afraid of the scopes lying on the sterile scrub table? Afraid of the room? I was relieved he chose his dad to go in with him. Looking him in the eye and seeing his fear was overwhelming me.

I immediately flashed back to work and the first time I had to go into the OR at the children’s hospital. It was about two months into my new job and I was excited to see my first major pediactric Urology case. I remember it as clear as yesterday. The patient was a 12-year old girl with a congenital condition that caused her to manufacture kidney stones like a production line. I would see nothing like it again in a child. I was there to assist with the machine that broke up the stones and removed the fragments from the kidneys. It was a long and tedious process. The normally two hour surgery was finally aborted after six hours. What I remember so clearly about this case was that this was the first time that I became acutely aware of the nurses. Six hours of observing them in the OR that day gave me a whole new appreciation for all the intangible things they do that makes them special. It was the day I noticed them do so many things that I’ve come to associate with nursing and yet are not in the nursing job description.

While the surgeon was worried about his patient and her kidneys, the nurses were worried about the child and her family. It was a beautiful balance that exemplified the importance of each of their roles. While the surgeon was ordering more suction, it was the circulating nurse who noticed the little girl had cold feet and ordered socks. While the urology nurse was prepping the patient for another access point she took the time to adjust the pillow that was slipping out from under the little girl’s head. When the two hour mark passed, it was the scrub nurse who looked up at the clock and reminded the doctor that the surgery was taking longer than planned and her parents were probably worried. He thanked the nurse and sent someone to update the family.

Sitting in the OR waiting area the vivid events of this day flooded back to me. In large part because I finally understood. During our pre-op meetings we saw two doctors and probably five different nurses. It was the nurses who we we interacted with most of the time. The nurses answered most of our questions and gave us our instructions. It was the nurses who tried to make my crying child laugh. The surgeon who came in to speak with us was kind, patient and sweet. The surgeon smiled at my son and said hello, but she was all business, efficient and serious. I now understood why. She did not want to have the image of my son’s face and tears in her mind as she tried to find out what was wrong with him. She needed to be focused on the procedure and the medicine, not on the fear of the child or his family.

I felt blessed that I had seen the OR from the perspective of doctors and nurses. Knowing there would be so many nurses in the room gave me immense comfort. The doctors may have been in charge of overseeing his medical care, but it’s the nurses who determined my son’s overall experience. I knew It would be the nurses who made sure his stuffed shark got the same hospital band as my son. It would be the nurses who made sure his feet were warm and his body comfortable. They would be the ones transferring him and holding his hand as he fell asleep. And I knew it was the face of a nurse that my son would first see when he opened his eyes from the anesthesia. It was her arms that would hold him when he freaked out. Her hands keeping him from pulling the tubes out of his nose and mouth. Her voice telling him it would be ok and that he was safe. It would be a nurse who would come and get me when he cried for his mommy.

As patients we often see nurses executing the doctors orders. However, it is my hope that the nurses who helped my son in the OR that day know that they did so much more for him. While their job to help manage the execution of medical care is important, watching them with my little boy showed me what it is that makes them so valuable.

So, to all the nurses who helped my son, Thank you. Thank you for holding his hand and taking away his fear. Thank you for dealing with the emotion and the pain and crawling into his cot to hold him when he was scared. Thank you for being an extension of mommy when mommy couldn’t be there. Thank you for seeing a child and not another patient. It may have been his Doctor who treated my son as her patient, but it was the nurses who humanized him. It was the nurses who gave him back his status as my little boy. You never forgot what really mattered. For that I am eternally grateful.

One Simple Definition

I sat staring at the discharge papers confused and frustrated. It did not make any sense. I looked up at my little boy who was climbing on the stretcher. “Mom, I’m bored. Can we go home?” he said. Feeling helpless and crazy I knew we had no reason to stay. No one was going to do anymore for us. So I gathered up our things and we left the emergency department. As we waited for the elevator down to the parking garage I watched my son jump from tile to tile following the pattern on the floor. I did not understand. I could not come up with an explanation. This was not the same child who woke up crying in pain. Nor the child who a few hours ago had a leg so contorted he couldn’t walk and who’s primary physician sent him straight to the ER concerned that he had broken his femur. How was it that an hour ago he couldn’t walk and now he was running around happy? I knew the doctors and nurses thought he was faking or trying to get attention. But I had been there and seen his pain and the odd way his body moved. In my heart, I believed my son. But, still, I could think of no way to explain what was happening. I wondered if anyone ever could.

The whole ordeal started when I went into his room in the morning and found him crying. He was sweating and stiff and struggling for his words. “Leg…Hurt,” was all he said. His leg looked misshapen and twisted inward. Despite my best efforts to get him up and dressed, he would not stand. At first I thought maybe he slept on it funny or was having growing pains. But, an hour later, he was still crying and begging for help. So I loaded him in the car and took him to the doctor.

She was kind and concerned and tried everything she could to get him to walk. Her exam yielded no helpful insights. He screamed when she tried to move his leg and he swatted her hand away as she palpated his thigh. Eventually, as a last ditch attempt to make him walk, she pulled out a lollipop. Like most three year olds my son would do almost anything for candy. She placed the sucker across the room on a chair and told him he could have it while the grownups talked, but he would have to go and get it from the chair. He immediately started crying, “I can’t!” But she did not budge and the lollipop remained where it was. Determined, he stood up on his left leg. His right leg twisted and tucked behind his left knee in a way that resembled a flamingo stance. He began his attempt to hop over to the lollipop. But, after one attempt to hop, he let out a screech that brought tears to my eyes and he fell to the ground. With his little hand outstretched toward the chair, he laid on the floor, leg still twisted, and he sobbed. The doctor instructed me to help him up as she walked across the room and picked up the lollipop. She handed it to my son and said, “Here you go buddy. Thank you for trying”. My son cried while ate his lollipop. “In my professional opinion,” she said, “this is not a child who is faking or trying to get attention. I think you need to head to the hospital and get some x-rays of his leg.”

After the x-rays, I sat with my son waiting for the doctor to come examine him. He had finally begun to calm down and was no longer whimpering and crying. I felt a mixture of relief and frustration when he suddenly got up, walked across the room and began playing with the bottle of hand sanitizer sitting on the counter. “You’re walking!” I exclaimed. He smiled and said, “Yeah mom. Doctor fix me. My leg no hurt.” Conflicting emotions overwhelmed me. I was so glad my boy didn’t hurt and I was frustrated because he was fine. I knew now that his leg could not be broken. He was standing and walking fine, pain free. I also knew that he was going to look like a faker and I was going to look like the crazy mom who rushed her kid to the emergency room for nothing. Less than 10 minutes later the doctor was telling me that his images were fine. There was no sign of injury to the leg. She examined him and watched him happily run around the exam room and play. Sympathetically she said, “Sometimes this happens with kids. I think there is nothing to worry about.”

As we pulled into our driveway it started again. The distress cries, “MOM! HELP!” I tried hard to hide my irritation that he was having pain now and not when he was in the ER. When I pulled him out of his car seat there it was. His flamingo leg. Tears rolled down his face and he begged me to make it stop. “Why the doctor no fix me mommy?” he asked though his tears. I picked him up and tried my best to carry him in a way that didn’t make his pain worse. He was sweating and shaking and stiff all over. His right leg was twisted so far inward that it could not be straightened. He could not walk. “I don’t know,” I answered, “But your mommy is going to keep trying to find someone who can help you.” Tears rolling down his face he nodded okay and buried his face in my neck.

It would be more than a year, a dozen trips to the ER, 9 specialist and countless people calling him a faker before we would ever hear the life changing sound of the word, “dystonia.” Now I sit here, two years later, staring at the discharge papers from that day. I found them in an old stack of papers while I was cleaning off my desk. In this moment I truly feel the power of hindsight. I’m shocked. I’m saddened. I’m frustrated. His hospital papers state that his primary care physician examined him and observed a painful twisted posturing of the leg, and that his mother had reported that this as an intermittent problem and that he is unable to walk when it happens. The papers went on to say that x-rays and examinations were normal and no observation of any abnormal posturing was made. My son was discharged and sent home with no prescriptions and no referrals. We were instructed to “follow-up with GP if pain worsens or continues.”

What surprises me most about this little piece of paper was he left the hospital that day with a diagnosis. They just didn’t know it. I didn’t know it. According to the Dystonia Medical Research foundation, dystonia is characterized by “persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting and may resemble a tremor.” The ER docs description of the events that day all but define dystonia. I can’t help but wonder what would have happened if one doctor or nurse knew the definition? Looking at my happy boy running around, what if they thought, “Intermittent and repetitive limb twisting and posturing…sounds like possible dystonia. We should page neuro and get a consult.”

But that day in the ER, not a single soul knew the definition. No one called neuro. No one gave a referral. No one saw anything other than a little boy seeking attention. And for two more years he suffered. For two years, I watched him cry and I watched him hurt, all because no one knew one simple definition.

The Rarest of People

She stood there with a neutral expression on her face, but her words and actions were defiant. I tried to tell her to stop, but she blatantly ignored me. As she handed me my three day old son, I wondered what had become of my compliant and agreeable friend?

“Already done,” she said when I insisted she was under no obligation to take care of me. “No, but really,” I argued, “this isn’t your issue.” It was a statement that she apparently found funny because her only response was laughter. As I fed my baby, I cringed at the pain in my stomach. I had forgotten how bad the newborn breastfeeding cramps were. I closed my eyes and tried to imagine my uterus shrinking with each contraction and taking my big postpartum belly with it. Somehow this made me feel like the pain was worth it. My friend touched my shoulder to get my attention and handed me the medicine the doctor had prescribed. I took the pills from her and wished my husband would come home even though I knew it was not possible.

It seemed cruel that my oldest would be sent to the ER with a serious lung infection just hours after my water broke. He was really sick. In fact he was the sickest he had ever been. My husband’s parents took great care of him, but he was scared and wanted his mommy and daddy. My husband stayed with me until our baby was born. He held him and cuddled him and got me all settled in. But, an hour after I gave birth my husband left me with our new baby and went across town to the children’s hospital to be with our oldest son. His infection was contagious and so my oldest could not come near his new baby brother until it cleared. Keeping them apart created some logistical challenges. In the end, my oldest went to stay with his grandparents and my husband commuted back and forth to his two sons.

This is where my friend entered the picture. I had been injured in the birth. As a consequence, I was in a lot of pain and not very mobile. She arrived at my house to visit the baby, just as my hubby was leaving to go see my other son. She had intended on staying a few hours, but two days later she was still there. She refused to leave until my husband and son could come home. I never asked her to stay and she never offered. She just never left.

“Seriously. Please stop doing the dishes and the laundry,” I told her, “I can do it later. I hate to make you do it.” She took my baby from me and carried him to the change table. “You are not making me,” she said flatly, “and no, I’m not going to stop. So deal with it.” I laughed and told her she was stubborn. Truthfully, I was really glad she was there. It would have been really hard on my own. I also knew that her presence allowed my husband to focus on my sick toddler without having to worry about me. When she was done changing the diaper my friend crawled into bed next to me with my baby cradled in her arms. I was exhausted and could feel myself drifting off. I fell asleep watching my son being cuddled by the woman he would one day call “Auntie.”

Almost four days after she arrived, my husband and I sat on my bed with our boys in between us. We helped our two and a half year old hold his new baby brother for the first time. Watching two little people instantly connect in what would become a life long bond was overwhelmingly beautiful and sweet. I smiled at my friend who was sitting on the end of my bed watching us for the first time, be a complete family. “Thanks for staying,” I said to her, “I hope some day I can repay you.” She smiled and leaned forward kissing my boys goodbye. “Don’t worry,” she said, “the boys have already paid me in snuggles.” Then, just as quietly as she came, she left.

So to you my dear friend, I’m not even sure what to say. Thank you just doesn’t seem like enough, especially when this event was but one in more than a decade full of unconditional acts of friendship. It was neither the first nor the last time you stepped up without being asked to rescue me and help me through life’s unexpected and challenging circumstances.

As the years progressed and dystonia began to run my life, you stepped up over and over again to literally pick my boys up off the floor and be there for me when I most needed it. To this day I don’t ever remember once asking you for help. I don’t know how you always seem to know when I need you, but you do. I am immensely grateful for you.

But, as many struggles as you’ve witnessed, you’ve been there for the good too. You’ve helped me celebrate the happy times and bask in the joy of life’s triumphs. Sometimes I feel like calling you my friend just doesn’t seem right. You are so much more than just a friend. You have become family. My kids call you “Auntie” for a reason and I love that you are around for them just as you always have been for me. We are in very different places in life, but it doesn’t matter. That’s what I love about you. Your ability to be a friend transcends circumstance and distance and you always know how to be there for me even when I refuse to ask. You are truly remarkable and I am honoured to have you a part of my life, a part of my boys life and a part of my family. Thank you for all that you’ve done for me, for all that you do for me and for all that you will undoubtedly do in the future. You are truly the rarest of people.