An American in Canada: The day I became more than an American abroad

I stood adorned in foreign attire looking at myself in the mirror while I waited for them to finish arguing.  The group had grown to six and spanned three generations. None of them could agree on what I should wear and none of them asked for my opinion. All strangers to me and each other, I was surprised at how much they cared about my clothes. It felt as if I was their own child shopping for a wedding dress.  They wanted me to look perfect.  The issue at hand was simple: How do you dress a white girl in Indian formal wear and have it look authentic?  

I picked this particular sari shop simply because it was closest to my parking spot. When I walked in I knew I looked as out of place as I felt after the shopkeeper asked “Can I help you?” in a way that implied I needed directions more than I needed something from his store. I pulled out my phone to show him a list of events that I was attending for a wedding in Delhi.  I told him that I knew nothing about Indian culture, but I wanted to dress respectfully. I did not want to look like a tourist in a costume. 

An hour later I found myself in the middle of a group of arguing Indians. “This is the latest fashion!” The shopkeeper said.  The elderly women countered that the latest fashions were not traditional and made me look like I was going to a Halloween party.  The young bride, who had put her own wedding shopping on hold to join the discussion, feared the older members of the group would dress me like a sixty year old.  “She looks too white in this!” the shopkeeper’s wife said before everyone switched to Hindi leaving me ignorant to the rest of the conversation.

 I turned to look out the window. It was beautiful how the snowy sidewalks clashed with the colourful streets and the smells of spices.  If not for the weather you would never guess that you were in Canada. As I wondered what language the street signs were in, I saw Toronto in a whole new way. I finally understood. For the first time since I had immigrated a decade ago, I felt like a Canadian. 

I came to Canada as an immigrant from the United States. I am as American as they come. My ancestors first came to the New World during the early days of the colonies.  They fought and died in the American Revolution and on both sides of the Civil War.  I never imagined that I would be anything other than American. Yet here I was, living in Toronto and the mother of Canadian children.  Even after more than a decade of residency and several years of being a citizen, I still identified as American.

When I first came here I was shocked at how different the culture was from my own.  I expected it to be like America with a different currency. I was wrong.  The socialist nation 3,000 miles from where I grew up was distinctly different in ways I didn’t know how to articulate. None was more apparent than the ways each nation expressed multiculturalism.

It’s undeniable that America is a very multicultural place.  Canadians never disagreed with me on this fact, but were always quick to point out that America is a self-described melting pot. “We are more like a mosaic” I heard more times than I could count.  I argued that the difference was nothing more than semantics.  But, standing here in Toronto’s district of Little India I finally understood what everyone was trying to explain. 

For countless generations people have flocked to the United States in search of the American dream. It’s a place where people from all over the world come together.  Separate cultures meld to form something beautiful and new.  Something American. In Canada there is no melting together in the same way as America. Here it’s more of a co-habitation of cultures that intertwine to form a fabric of people.  Canada’s immigrant cultures often hold more strongly onto their distinctiveness, forming a unique collection of little communities living side by side. In the neighbourhoods of Toronto the cultural communities are so distinct it’s sometimes hard to tell that you are in Canada by looking around. On this cold December day in Little India, I was the only woman on the street not in a sari.

 What I loved most in that moment listening to strangers argue over my clothes was the open conversation about culture. The friendly acceptance of our differences.  It was not strange to me that women who had lived in this country for decades had not adopted western clothes.  They did not find it odd that an American girl needed a sari.  They laughed at my American accent and my difficulty in understanding their own.  We bonded over our immigration experiences and how all the construction was messing up traffic in the east end. I learned that every Indian in the store that day was also Canadian. 

 I realized that feeling American is part of what made me Canadian. I live in a city where over 50% of its residents are foreign born and also identify as something other than Canadian. My feelings were not unique. I had never truly appreciated that that most beautiful part about being Canadian is that I don’t have to stop being American.   My friends here, who come from all corners of the globe, wish me happy Fourth of July and celebrate American Thanksgiving with me.  In turn, I often celebrate holidays like Iranian New Year, Diwali, October Fest and Geek Independence Day.  It’s honestly hard to live in Toronto and not celebrate something from another culture. It’s the result of living in a place where open multiculturalism and immigration are more common than not.

 It took another hour, but I finally left the store with three outfits that everyone could agree on.  I drove north and watched the street signs turn from Hindi into English, then into Greek.  I picked up my boys from my Irish Canadian friend who was babysitting for me and I laughed when I saw my son holding a Pasynka, a Ukrainian Painted Egg, one of my close friends had given him.  Then, I picked up my husband from work on our way to his best friend’s house for a traditional Ghanaian dinner.  

 As we drove through Little Italy my husband asked why I was smiling. “Because I am American” I said, “and Canadian.”  

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An Open Letter to Kevin Pillar

Dear Kevin,

 You don’t know me.   I don’t know you either.  In fact, I never even knew your name until a few months ago.  But, it is precisely the fact that we have never met that makes this letter necessary.  The truth is, in life we can have an unintentional impact on those around us.  As a famous athlete this truth for you is all the greater. So I fully acknowledge that you have no way of knowing the ways in which you have impacted my family, but I do. While I know that you never intended this to happen, I still hold you responsible. 

It all started when I heard my two little boys calling me as they sat giggling and shouting at the baseball highlights on TV.  When I came to see what all the commotion was about my six year old simply asked “Who is that!?” I had no idea.  It is my husband who follows baseball not me.  Don’t get me wrong, I love baseball.  A lot. But my love of baseball has nothing to do with the professional game. My love of the game stems from the fact that my dad, as a child in the 50s, had a female sports role model. As a little boy, when my dad wanted to learn how to throw a curve ball, it was his mom’s sister whom he called.  She had been a pitcher in the pro women’s league during the war. According to my dad, his aunt had the “meanest curve ball” and she taught my dad and his buddies all about the game.

When I was growing up my dad passed on this love of baseball to me and my sister.  It was a wonderful feeling to know that while other dads wished for a boy to play sports with, my dad never did.  To him, playing baseball with the girls was as normal as playing with the boys.  My dad coached my girl’s baseball team and I’ll always remember him laughing at the term “throwing like a girl” and reminding us that he spent half his childhood trying to throw as good as a girl. His was a mentality not commonly shared with young men of his generation, and it had a tremendous impact on me and the girls he coached. Growing up I had no doubt that girls could also be fierce competitors and athletes.  I have baseball to thank for that. 

So believe me when I say I really do love baseball even though I couldn’t care less about who has been traded and who is putting up the best stats.   And this is precisely why I had never heard of you until that day I sat down to watch your highlight reel. Listening to the announcers I learned your name.  “Kevin Pillar,” I told my son as he cheered at every catch you made.  His enthusiasm made me chuckle and I left him and his little brother watching you on TV while I made breakfast.

Weeks went by and your name was never mentioned.  Then one day, in the most unexpected way I could have imagined, my son said your name. Only this time the words “Kevin Pillar” took on a whole new meaning.

The episode, like so many others, left my son sprawled out on the floor.  You see, both of my boys have a rare neurological movement disorder called Dystonia.  It causes painful twisting and contractions of the muscles.  The episodic nature of it means that one minute they are running and playing like any other child and the next minute their hands and legs stop working.  This means lots of falls and has made my six year old apprehensive about participating in team sports. But on this particular day when his feet locked and twisted beneath him while chasing his friends, something unexpected happened. 

He had been running hard when he hit the ground and he slid across my hardwood floor with one arm outstretched over his head.  But instead of embarrassment, his expression showed joy.  “Hey!” he said giggling, “did you guys see that? I looked just like Kevin Pillar!”  It made us all laugh. He was right.  It looked like a sliding dive he had seen you do on TV.  The only thing missing was a baseball in his little hand. 

“Hey who wants to play Blue Jays?” he asked his friends, who all eagerly agreed.  It was amazing to watch him play baseball with his friends for the first time.  Not because he didn’t fall. He did.  But because for the first time in his life he considered it a physical advantage to be like him.  To look like Kevin Pillar.  You gave him this and for that I thank you. 

Over the past months, talk of baseball has filled our home as my little boys practice their sliding dives and imaginary throws from center field.  My six year old is teaching his little brother about the game and that no matter what he should “always cheer for the blue team.”  I love that the sport which dominated childhood in my family is living on in my children.  You have given them a reason to play and a way to embrace their disability.  In all your athleticism they have found in you someone that they can recognize in themselves.  You have accidently given two little boys an unexpected hero and in doing so, made the game of baseball inclusive.

I don’t know how to thank you.  But you should know that I’m grateful. Grateful that because of you two wonderful little boys have been given the confidence to play and with it gained back a piece of their childhood I feared their disorder had stolen from them. 

So to you, Kevin Pillar, please keep diving and sliding and catching baseballs.  We will be watching and cheering you on. But most importantly, we’ll be playing baseball. Go Jays!

 

With gratitude, from the mother of your two biggest fans,

 Heather

The Greatest Gift

Just listening to it filled me with fear. I begged them to stop, but my plea made them all the more determined to continue. Both boys sat giggling on the entryway stairs singing as I frantically put their shoes on. “I need you to stop signing and laughing right now,” I scolded my oldest. He nodded and smiled before bursting out into song once more. I grabbed their coats, picked up my two year old and went outside. “Mama cold!” My youngest said when the cool night air hit his face. “I know,” I said apologetically, “there is no time to put your coat on. We gotta get your brother to the hospital.”  
The preceding events happened so fast. I was standing in the kitchen cooking dinner when I heard the sound we dread most in our household – a combination of wheezing and stridor. It was the sound caused by my five year old’s lungs swelling and whistling when he breathed out while his obstructed windpipe vibrated as he breathed in. I looked up over the kitchen ledge to see my son standing in front of the sofa in a panic, flapping his arms as he fought to breath. He had tears dripping down his cheeks and his complexion had changed to the pale shade that preceded the scary blue color that would force me to call 911. 
I grabbed the inhalers out of the medicine cupboard in my kitchen and ran to my son. I put the puffer mask to his face as I released the meds. Four puffs later the wheezing had improved, but the squeaky sound of the stridor remained. When he spoke to tell me that he was breathing better, his voice was raspy. I checked my watch. I knew it would be five minutes before the meds would take full effect, but was relieved at the immediate improvement. I reached for the orange steroid inhaler off the counter and swapped out the rescue inhaler in the mask. I gave my son the maximum amount. “Shoes on. Now!” I ordered them as I rushed to the kitchen to turn off the stove.
I don’t know what possessed him to start signing. But, as he sat there watching me put his brother’s shoes on, his squeaky, raspy voice began singing, “If your happy and you know it clap your hands.” It was a poignant song choice against the backdrop of a medical crisis. He coughed and wheezed as he sang, but he wouldn’t stop. His little brother soon joined in clapping his hands and stomping his feet mimicking his big brother. “Guys, I need you to calm down. Save your breath. No singing. No laughing. Just calm slow breathing. Okay?” But they didn’t listen. Instead they burst into smiles and sang louder.  
As I loaded them in the car I stopped to listen to my son’s chest. He was no longer in danger but he was still not breathing right. While I loved that my son was happy and singing, I feared for his health. “You are not breathing well,” I explained to my son, “I need you to stay as physically calm as possible. No singing. Save your air. Focus on breathing. Please!” He looked at me and saw the fear in my eyes. My two year old saw it too and he began to cry. My oldest son smiled at me and said to his little brother, “It’s okay. The doctors are going to give me medicine to make my lungs strong. No big deal! But I can’t sing, so you take over.” It was an explanation that made my eyes fill with tears. We had been through this so many times he never needed to ask where we were going. He knew exactly what was happening. His little brother followed his orders and as I buckled him into the carseat his sweet little voice sang, “if happy and know c’ap hand.” They both clapped and my oldest smiled at me. “Mom,” he said before I closed the car door, “I may not be able to breath good, but I am happy.”  
My heart exploded. His song choice was not an accident. He was trying to tell me in the sweetest way that he was still happy despite all his physical and medical challenges. Even in a time of fear and crisis, he was content and unafraid. He was happy and he wanted me to know it. I wanted to hug him and tell him how much I loved him. But there was no time. The squeaky sound that accompanied the rise and fall of his chest compelled me to hurry. So instead, I got in the car and cried as I listened to the sound of my youngest son singing for his big brother.
We were rushed right into the doctor who prescribed oral steroids for his lungs. He smiled through his entire exam and tried to make his brother laugh when he got bored. He was calm, confident and knew exactly when I needed a hug. I wondered at what point in his five years of life he became so comfortable in crisis. So unafraid at the things that terrified me. So aware of how to help others work through their own fear. I felt so guilty that I was deriving my strength from a five year old little boy when I was the one who was supposed to be strong for him.
In the end he was kind of right. We went to the doctor who gave him medicine to make his lungs strong. No big deal….. Except for me it was a huge deal. It meant that dystonia was affecting his esophagus and he was once again inhaling stomach acid. It meant his treatments were not working as well as we needed them to and the possibility of surgery would once again be brought up by his medical team. It meant I would have some impossible decisions to make. It also meant that I would go days with little to no sleep as I sat in his room listening to his breathing.
During the next four days, I had to give him additional rounds of oral steroids three times. By the fourth day, his breathing normalized and our life returned to normal. But for my son, all of this was no big deal. It was a regular part of life. It was not something he stressed about or feared. It was just something to be dealt with.  
In the aftermath of the episode I feel so blessed that my son sang his song. Even though it scared me, it gave me relief too. My son gave me the knowledge that no matter what happens in his life, he is at peace and is happy. It’s quite possibly the greatest gift he will ever give me.

A New Adventure

I don’t know what I was expecting.  That is the problem with impulsive decisions, not a whole lot of thought goes into them.  I never sat down and pondered what my goals were for writing.  Truthfully, I had none.  I didn’t design an attractive web page or purchase my own URL.  I never debated “voice” or “tone,” and I had no predetermined or deliberate direction.  I simply wrote because it was an outlet.  I expected only my parents and family would read it along with a handful of very close friends. But instead it connected me to not only the Dystonia Medical Research Foundation but to a whole dystonia community I never knew existed. I never imagined this little hobby of mine would lead to this.

When the Dystonia Medical Research Foundation Canada called and asked me if I would be interested in joining the Board of Directors, my initial reaction was a mixture of surprise and excitement.  I was surprised because even though I had been volunteering for the foundation for a while now, I never viewed my contributions as worthy of the Board of Directors.  But the mere thought that I could be part of an organization that is doing such great work with both the dystonia and the medical communities made me beyond excited.

In the past year alone, DMRF-funded investigators identified new gene variants, gained new insights on cellular proteins that contribute to dystonia and made critical discoveries about how brain circuitry influences movement.  The DMRF is part of leading edge research and their numerous contributions to the medical community are undisputed.

However, the science is not why I am excited about joining the organization.  I am excited because of the impact the science is having on individuals.  The science is improving the quality of life of children, who like my own boys, have suffered for too long.  Today, Deep Brain Stimulation (DBS) surgery allows children with certain forms of dystonia who might otherwise face life in a wheelchair to return to the playground, pain free.  Genetic discoveries by DMRF-funded investigators ensure that children are born without one of the more severe dystonia gene mutations predominant in Jewish families. DMRF efforts toward drug discovery are revealing the possibility of an entirely new generation of therapies that will interrupt or alleviate dystonia at the cellular level. The science is showing us that a cure is not only possible, but within our reach.

I am thrilled to join the Board, because it will allow me to make a difference.  To do something. To fight back.  While the idea of helping so many families affected by dystonia is incredible, my motivations are admittedly selfish.  My primary motivation is my own children.  You see, the amazing advances we are seeing in the treatment of dystonia affect my family very little.  Our type of dystonia remains difficult to treat.  While on the one hand I am thankful to organizations like the DMRF for funding the research that led to the treatment options we currently have, there is still a lot more work to be done.  I need my boys to know that I am doing everything I possibly can to help them and to help their doctors.

Over the next year the DMRF Canada and the dystonia community have some very fun and exciting things happening across the country.  If you would like some information on how to get involved, volunteer or attend one of our events please let me know!  If you would like to donate to the foundation all you need to do is click here.  I feel honored and privileged to be on the Board of Directors for the Dystonia Medical Research Foundation Canada.  I look forward to serving not only the foundation, but also the dystonia community. Please let me know if you need any information or recourses.  I am here to help.

How A Picture Of a Booby Changed My Marriage

“What’s wrong with this one?” my husband asked me in a way that made me instantly feel both frustrated and guilty. “Nothing,” I said in a forced peppy voice, “It’s a nice picture of a bird.” My husband tensed and sat down next to me. “Listen,” he said, “you asked me to take a picture of the bird, and I did. Now you are annoyed that I did exactly what you asked. I feel like I can’t win.” I put my head on his shoulder and looked out over the ocean. He had brought me all the way to the Galapagos as a gift and I was frustrated that I didn’t like many of the photos.

The truth was I had never taken an art or photography class and I was in over my head with wildlife photography. I knew exactly what I wanted to capture, but I lacked the skill to do so. I wished I could figure out how to work the camera and I feared I would leave the islands with no images that captured my memories. I looked at the photo my husband had taken of the pelican and I was amazed by the quality of the photo. But, I was also taken aback at how it captured exactly what was happening in the surf without capturing at all what I was watching in the surf. It was in that moment that I realized what the problem was…one photo had captured so much. Looking at my husband it was never clearer that perception really is everything.

“Look,” I said pointing at the bird, “you see a pelican being splashed by waves.” He nodded yes and looked at me with a questioning expression. “Well, that’s not what I see,” I explained, “I mean, I see it. But it’s not what I find interesting about him.” My husband nodded and said nothing as he turned his gaze back to the bird. “Watch what happens when the waves go out,” I said, “He will chase them. He will spread his wings and stomp his feet like a toddler splashing in a puddle. He will not turn around, because he is not afraid of us. He is at peace. He is happy. He is having fun.” I saw the corners of my husband’s mouth go up in a smirk as he saw the personality of the pelican come alive. “Your picture is honestly really good. But it does not capture what I see as memorable about this bird. You see a bird. I see THIS bird. I see a unique little soul.”

Pelican wave CopyrighedPelican Copyright

My husband took my hand and squeezed it. “What else do you see?” he asked. I shrugged, not sure how to answer. “Take that crab,” he said smiling, “I see the contrast of a bright red crab on black lava rock. What do you see?” I giggled at his inquest and was also a bit surprised that when he saw color, I saw something entirely different. “Watch him a sec and you’ll see.” My husband did as I requested, but the expression on his face made it clear that he did not see what I did. I sighed as I began my explanation into what was special about that crab. “When the tide comes up, all the other crabs scurry away. But not him. This one is different. He stays. He sits in the sea foam and likes to pop the bubbles. I like him. I think he is funny.”   My husband said nothing as he got up and walked down the beach in attempt to take pictures from my perspective.

crab contrast copyrightedbubble crab Copyrighted

I had no way to know at the time that this conversation would change our relationship. But it did. It changed how we engaged in conversations when opinions differed and served as a poignant reminder that we could take very different things from the same experience. I gained a new respect for the man who worked very hard to learn how I saw the world around me, so that he could use his skill to capture it for me. As the days went on I found myself getting a kick out of the photos he took from his perspective as they showed his world to me. I was baffled by how we saw the exact same moment so differently and we continuously discussed what we found special and interesting in each scene.

Less than a week later when my husband proudly handed me the camera to look at a photo he’d taken, I cried. Without direction he had captured the moment between a mother Booby and her chick exactly as I experienced it. Through practice and effort he had learned my perspective of the world and was able to look at “just a bird” and see it through my eyes. Even though he would never be moved in the same way I was, he knew what I would find special in the way the mother fed her baby. His photo and those that followed it may have started as out as a quest to get better pictures, but it turned out to be one of the greatest and most loving things he’s ever done for me.

Booby Feeding Copryrighted

“Mom!” he said giggling, “look at this bird dancing.” My son sat on my lap looking at a long forgotten album that he found under the coffee table. I smiled a big and genuine smile at the memory. “You know, I thought he was stomping and splashing. But I think you may be right. It does look likes he’s dancing doesn’t it?” He nodded as he looked at the page. I marveled at my son and smiled as I took in the lesson this image was once again teaching me. One picture, three perspectives. It was just the reminder I needed to remember the value of our individuality and the importance of being understood. I turned the page and his eyes widened at the site of a colorful crab submerged in sea foam. “Tell me more. What else do you see?” I asked my son.

The Only Advice You Need, But Will Never Get

I know exactly what you are feeling right now. I promise I do. I know that you are lying there watching your husband hold your new baby, just hours old, wondering how the whole world can fit into a space so small. You are confused by how something can feel so natural and so foreign at the same time. You are a new mom and over the the next few years you are going to get all kinds of advice about parenting from practically everywhere you look. Sadly, my advice is the only advice you will ever need, but you will never get. 

You don’t know me yet, but we will meet in time. Our introduction will not be a single event, but one that occurs slowly. By the time you are aware of me, you will wonder how long I’ve been around. I will wonder too. What I do know is that you are lying there in a hospital bed feeling like your baby is somehow different than the other babies in the maternity ward. You will ask the doctors and nurses and they will all tell you that he is perfect. But you won’t believe them. You will insist that he be reassessed by a paediatrician before you leave. The medical world will respond with kindness, but chalk up your concern to new mom paranoia and postpartum hormones.   

I want to warn you that your life is about to get unimaginably hard. But even if I could, I wouldn’t know how to begin. There seems to be no good way to tell you that your perfect baby is going to stop growing and that a good day will mean he only vomited a dozen times. I can’t prepare you for sleeping upright and the devastation you will feel when you first realize that your baby is in pain and suffering. Even worse will be the sinking feeling in your stomach when doctor after doctor tells you everything is “normal.” 

You will spend long nights in the hospital waiting to see why your medically normal child keeps bleeding internally and goes through periods when he can’t walk. You need to know that it will take years, but they will find the cause. You were right, your boy is different, and for the longest time he won’t be okay. I’m sorry. I really wanted you to be wrong.  

I want to curb your sense of relief when your second son is born. I know he appears not to suffer from whatever is ailing your first child. However, appearances can be deceiving. You will need to brace yourself for two “normal” children who no one will know how to help. Your nights will be filled with tears and your days filled with fear. You will experience a level of exhaustion that will make you understand why militaries use sleep deprivation as a form of torture. You will feel weak, scared and alone. And you will be. Your friends and family won’t understand and you won’t have the energy to try to make them. Your professional ambitions will dissolve into thin air and you will become so engrossed in surviving that the world around you will become immaterial. Tough times are coming. I want to warn you. But I can’t. I hate that I can’t.

Perhaps even more frustrating is that I can’t prepare you for what these challenges will mean. Because they will mean something even when it seems like they don’t. I want to tell you that the man holding your baby will be the only person on this earth who believes in you. He will stand behind you and hold you up, even when you don’t realize he’s doing it. While you’ll be busy worrying that all of this is too much for one relationship to take, the situation will be busy binding you together in a way you never knew possible when you took your wedding vows. 

I wish you knew that in spite of all the challenges ahead, there will be light in the darkness. You will find joy in the struggle. Diagnosis will be made and effective treatment plans will change your life. The two little boys who struggled to thrive and grow will become the strongest, happiest people you could ever hope to meet. A day will come when you sit and listen to your five-year-old tell you’re very frustrated three-year-old that he can’t quit. You will cry as you listen on the other side of the door as one boy teaches the other about the importance of persistence and moving forward even when it seems like we physically can’t. Your little boys will be connected beyond the normal bonds of brotherhood forging through life in a way that resembles two soldiers united after serving time together at war. They will inspire you. You will feel like you don’t deserve them. No mother could ever hope for anything more than what you will be given.

The world will feel overwhelming at times but your boys will make it mean something of great significance. They will give you a purpose. When you feel lost, you won’t be. You will just be too deliriously tired to know that you are exactly where you need to be. I wish you could know that your boys will thrive in spite of their circumstances. Their pain will eventually be controlled. Your marriage will remain intact. 

But perhaps the one thing I wish I could talk to you about more than anything else is regret. Pretty soon you’ll wonder what you should do, what you could’ve done, and what will do. You’ll worry about making the wrong decisions. You will stay up all night researching possible outcomes and choosing between the lesser of the evils. You will spend your days fighting, arguing and advocating. You will wish you had more knowledge and the ability learn medical jargon faster. Frustration will become a natural byproduct of your life. If only you could accept that there’s no right and wrong and no matter what you do you will not get the outcome you want because Dystonia has no cure.

The good news, however, is that there is one very important thing that as a mom you will never ever regret. You will never wish you hadn’t listened to your instincts. You will never look back and wonder if trusting the cues of your baby was the right thing. You will always be glad about the lengths you went to to help your kids physical discomfort. You will never regret fighting for your boys even when it makes you look crazy. You will have the gift of never looking back and wishing you had done more. This lack of regret in your world full of stress and emotion will mean everything.  

I wish I could go back and tell myself all the things I know now. But I can’t. The only one who can truly know what it’s like to walk in our shoes and give us the advice we need is our future selves. So all I can do is look back in history and ache that you, my younger self, will have to get there the hard way. By the time you know what I know, you won’t need my help anymore. You will be shocked by how much you’re going to change. How much you are going to grow. Your perceptions will evolve, your extroverted personality will become more introverted and your life will be better than you could have ever dreamed. You will feel like a different person. You will learn things you didn’t know you needed to learn. You will begin to emerge from the fog of exhaustion and will be amazed by all that surrounds you. You will be loved, you will be happy, and you will find a way to accept dystonia as a part of your life. 

What I Learned From Sleep Depriving My Son

I shook him, but he didn’t wake. “Come on buddy,” I pleaded, “It’s two in the morning. Time to wake up.” I sat him up but it didn’t help. He just slumped over and continued sleeping. After five minutes, I was rewarded with two sleepy but awake brown eyes looking at me. “Mommy, I’m tired” he complained. I nodded in understanding. “Yep. That’s the point of sleep deprivation.” I took my little boy by the hand and we went downstairs. It was going to be a very long night.

Holding a coffee I sat next to my son and couldn’t help but feel guilty. I understood why the doctor had ordered a sleep deprived EEG, but it still went against my maternal instinct. I was taking away something that was vital to his health.   “So…what do you want to do?” I asked him. He shrugged and yawned. I pulled out two glow sticks and a black light flashlight left over from Halloween and smiled playfully at him.   “Yes!” he said giggling. I opened the package and bent the tubes. To the delight of my five year old, glowing neon lights instantly appeared. I got up and turned the lights out so the effect of the glow would be that much stronger. Then sitting in the dark next to my son, something unexpected happened that would shape our future Interactions.

My younger son was still sleeping, which meant we had to keep the house quiet. So, side by side, we snuck through the dark house with the help of the glow sticks and I introduced my little boy to the effects the little purple light had on different colors. We debated the reason it was called a “black” light when the light was in fact not black. He marveled at how flat boring colors exploded under the new purple light. He delighted at each item we shone it on. But his uncontrollable laughter at the sight of the glowing white spots on our black cat made me thankful for this test. Thankful for this time.

Glow Sticks

When the night started to fade into morning, my five year old curled up on my lap and whispered in my ear, “Can we do this again tomorrow night? This is fun.” I hugged my boy and felt conflicted as I shook my head no. He looked down and I could tell he was trying not to cry. “But I like spending time with you mommy. Can’t we please do this again?” Now it was my time to cry because I realized that it was not the novelty of being up all night that he found exciting. It was the uninterrupted, lengthy and concentrated time with me. I felt sad that this kind of time with me was something that he believed could only happen in the middle of the night. During the day we were busy at life – Grocery shopping, cooking, cleaning, doctor appointments, kids at two different schools. I felt like I was always doing something and at the same time not doing anything. Filled with conflicting emotions, I grabbed my son and held him until he asked me to let go. While I loved getting such a unique and quality experience with him, I did not want to get up at two in the morning and play all night ever again. It was exhausting. I knew in that moment that my days would have to change.

In the days following the test, I felt so blessed to have had this medically mandated experience. It reminded me of the power of uninterrupted and undistracted time with my kids. I was unaware of just how busy I am during the day until everything was halted by the stillness of the night. When laundry and dinner, shopping and cleaning, school and work were all out of the way, we were left with nothing but each other. Nothing but what really matters. Thanks to a sleep deprived EEG, I have changed and reframed how I spend time with my kids. I am now trying to give them each more focused individual time doing something important to them. Even if it means I must leave the sink full of dishes when my boys need me to play with them.

A week ago I would have said “wanted” me to play. But I would have been wrong. Because regardless of the time of day, my little boys “need” their mommy. They do not need perfectly folded clothes or a sink that is free of pots. But they do need me. Since my unexpectedly fun all-nighter with my five year old, I have seen some pretty amazing changes in our interactions. He listens to me more and I yell less. He is calmer and more willing to help me around the house. He talks more and I talk less. We are both happier. While I do not yet know the results of the EEG, I do know that the testing process itself taught me about the power of connection and reminded me that the quality of the time with my kids is more important than the quantity of time itself. It’s a lesson I hope I never need to learn again.

The Cut That Binds

He struggled to free himself from my tight embrace. He was terrified and pleaded with them not to hurt his little brother. Undeterred they continued preparations to cut into my younger son’s skin. My oldest son’s reaction overwhelmed me and my grip began to loosen. It was a horrifically beautiful moment that illuminated the bond of my boys in a way I never thought possible. A moment that taught me the power of struggle and family.

 Truthfully, the biopsy hurt. They gave us freezing gel before taking the skin sample, but it was still very uncomfortable. The doctor assured my husband and myself that the kids’ skin was softer and thinner, so they would feel less during their biopsies. When the time came for my five year old to have his turn, his wincing face told us that the procedure was not pain-free, but it was also not horrible. His tears seemed to be more out of fear as he watched the doctor cut a piece of skin off his arm.

I was excited for what information this procedure might yield about their dystonia. But, it was yet another procedure and I was anxious that my sons would be mad at us for subjecting them to so many tests. I was unsure how they would respond to the experience of being forced to allow someone to cut them. But, none of the issues I worried about were a problem on the day of the test. After watching my husband and I go first, my oldest seemed to understand what the test entailed. He accepted his fate and was so brave it made me proud. What I was not expecting was his reaction to his little brother’s biopsy. I assumed he would find comfort in the fact that the whole family was going through this together. But I was wrong.

“I do not like this! It’s scary” he said to me with tears running down his face. I hugged and kissed him and told him it was all over. The doctor put the band aid on his bleeding arm and told him what a great job he’d done. When she was finished she asked my son to switch places with his little brother. But instead of relief, he looked panicked. He sat there frozen momentarily before pulling up his other sleeve and said, “I don’t want you to cut my brother. Do me again instead.” It was a brave and selfless move that caught the doctor by surprise. She smiled softly at him and explained that she needed both of their skin because their bodies were unique and could tell her different things. But my son was too emotional to cooperate. He walked over to his brother and protectively placed himself between him and the doctor. “Please. Don’t hurt my brother,” he pleaded with tears rolling down his face. I went to pick him up and told him that this had to happen. He seemed to calm, but struggled to free himself from my arms the second my husband sat down in the procedure chair with my youngest son. I was not expecting such a protective response and I was unsure how to respond. So I didn’t. Instead I watched in an emotionally paralyzed state as the bond of my boys manifested in a way I was unprepared for.

Overpowered by an insanely strong five year old, I was unable to keep my grip on his flailing body. It only took a minute for him to free himself and run to his baby brother. Except rather than try to stop the test, he did the unexpected. He held his brother’s head and sobbed, “I’m so sorry. I’m so sorry. I tried to stop them, but I can’t. I love you. I’m here.” I wrapped my arms around both my boys as the doctor cut into the soft pink skin of my baby. My oldest son squeezed his brother tight and just kept repeating “I’m sorry. Don’t worry, I’m here.” Then came the awful yelp from the skin being punctured. My oldest son didn’t freak out like I feared he would. Instead he forced his two year old brother to make eye contact with him and assured him it was almost over.  

Once the band aid was on, the boys just hugged one another. They didn’t want mom and dad. They wanted each other. It was one of those moments in life that I will always remember. It made my heart feel both broken and full at the same time. “I’m proud of you buddy,” my first born said to his little brother. It was a statement that was rewarded with a smile and a hug from the little boy he loved so much. In that moment I too was proud. Proud of both of them. Proud of their compassion, bravery and bond. Proud they were mine.

The biopsy was less traumatic for my two year old than the other tests he has been subjected to in a search for answers. Like so many scary events in life it was over quickly and not as bad as the buildup in our minds. But I did learn one unexpected thing that day. Our struggle with dystonia had influenced our family in profoundly unexpected ways. As a mom I worried that a chronic and painful disorder would make my boys withdrawn and jaded. That it would pull us apart, wear us done and divide us. But that day I learned it had done the opposite. It had fortified the bond of my boys beyond anything I could hope for. Their disorder had taught trust, love, empathy and strength. Through our struggle with dystonia, I have found a richness in family I never dreamt possible.    

Dystonia Fundraiser and Education Class

“Mom, who are you talking to?” my son asked between coughs. I laid my phone on the bench and walked over to my little boy. He looked so small and helpless in his hospital bed with tubes coming out of his nose. I checked my watch. It was 1:30 in the morning. I marked the time on the piece of paper that was lying on the tray next to his bed. I had been up all night for this PH impedance probe test and I was exhausted. I had to document every time he cleared his throat, sneezed or coughed for his doctor, who hoped the data would shed some light on the impact his Dystonia was having on his esophagus. “Is it daddy? Can I say hi?” I kissed him on his forehead and hugged him. “No baby. It’s not daddy. Daddy is asleep at home with your brother.”   He wrapped his arms around me and asked, “Who are you talking to then?” As I hugged him back I tried to think a way to explain my relationship with a man I had met on the internet.

I had met him several months earlier when he messaged me on Facebook to say he had read my blog. He was a nursing educator and was surprised at how little he knew about the neurological disorder plaguing my family. He invited me to guest blog for his company’s web site to help raise awareness for Dystonia. I eagerly agreed. Over the next few months I would go on to write three separate articles for his company.

The very first time we conversed about my writing, I knew I liked him. He was by all accounts a good person. After serving ten years as an Army Medic, he re-entered civilian life as an ER nurse and later started his own nursing education company. He was smart and talented, but rather that choosing a high profile career, he had chosen a life of service. He reiterated more times than I could count that his number one priority was education and awareness and that the key to change can lie within a single person. I will never forget the day he first told me this. I laughed at him. I was struggling with helplessness as my kids’ healthcare providers were running out of ways to help them. His notion seemed so idealist. So simple. But he was determined to prove me wrong, adamant that education could lead to change.

“Yeah,” I countered, “Well who’s going to teach then? You care and even you do not have a Dystonia class.” My statement was met with resolve. “You are right,” he said. “I should have a class. And just to prove to you that I care, I will do a class for free, so that it is accessible to everyone.” I sat stunned. His offer was so kind. “If you are willing to work for free,” I said without even thinking, “then why don’t you do the class, but charge your regular fee and donate all the money to the Dystonia foundation?” The man who I had met on the internet never even hesitated, “Great idea. I’m in.”

I had no way to know just how much work writing a dystonia class would be. Truthfully I’m still shocked that he agreed to do it. But not only did he deliver on his promise, he enlisted the help of Pedagogy Education. The medical education company has graciously offered to host and run the class free of charge so that Dystonia education can be easily accessible online to all nurses across the US and Canada. Pedagogy asked for zero compensation and worked tirelessly to ensure every dollar generated from the class would go toward the Dystonia Medical Research Foundation (DMRF).

So after several months of working with the DMRF, Pedagogy Education and Central Valley Medical we finally have a course designed to help create a better understanding of a little known neurological movement disorder called Dystonia. Dystonia is a complex and varied condition that can present, manifest and be treated in many different ways.  This course will differentiate and define the key characteristics of Dystonia, discuss the prevalence and explain how the disorder impacts those affected. Understanding traditional treatment guidelines and medication therapies will help nursing staff better care for and assist patients suffering from Dystonia. But that night sitting in a hospital room with my little boy I didn’t know how to explain why I was talking to a nursing educator about a class in the middle of the night. I didn’t know how to tell my son that there was a person so dedicated to helping a child he had never met that he was working with me to write a course while he was on his break during his graveyard shift at a hospital thousands of miles away. I didn’t know how to explain that complete strangers had stepped up and volunteered to help spread awareness for a disorder that few had heard of. So instead I told him the simplest truth, “My friend. I’m talking to my friend.”

 

If you are a nurse and would like to help raise money for Dystonia awareness, go to the following link to sign up for the class: http://pedagogyeducation.com/Main-Campus/Class-Catalog/General/Class.aspx?Class=239 This 2.5 hour fully accredited class will count toward CE credits. All proceeds of the purchase of this course will be donated to the Dystonia Medical Research Foundation. You may learn more about the DMFR here: https://www.dystonia-foundation.org/ Special thanks to Central Valley Medical and Pedagogy Education for their hard work.

 

If you are not a nurse and would like to help, please share this post with the nurses you know.