The Trampoline

I had never thought much about the saying, “A picture tells a thousand words.” But, as I stood next to my boy in the isle of Walmart, staring at the image on the side of a box, it said everything. It summed up years of struggle and longing. Years of exclusion and isolation. It told a story of pain and triumph. This picture of kids jumping happily on a trampoline, seemed to tell our whole story.

In reality we were not there for a trampoline. We were there for something entirely different. That summer we had begun to spend most weekends at my in-law’s place in the country. We were looking for a climbing structure for the lawn. It was a special gift for our little boy. In retrospect, a trampoline should have been an obvious choice. The fact that we hadn’t considered it spoke to how engrained into our mindset and lifestyle our accommodations and prevention of Gasto-Esophageal Reflux Disease (GERD) had become.

The cold hard truth is that GERD had been ruling our life. It terrorized our entire family for years. It affected everything from eating to sleeping and even playing. While it can have many causes, for our son, the doctors believe dystonia is opening his esophagus. Regardless of the cause, one thing is certain, childhood GERD is a war. Babies who suffer from it don’t eat and when they do it’s only after a battle. As a mom, the heartbreak of not being able to feed your baby effectively is hard to describe. They are so little and helpless. Every time you feed them it’s like pouring salt into an open wound. You are hurting them and they don’t understand why. The most awful part is you can’t stop. So, day in and day out, you have to hold your baby and force him do do something that causes him excruciating pain. Then tragically, after you’ve hurt your baby by forcing them to eat, they vomit it right up. All the pain and sacrifice for nothing. As parents, it is a torture we are forced to repeat.

When my son was 10 months old the discussion of a feeding tube began. Our little peanut had not gained weight or grown in five months. He was still in clothes for a three month old and had fallen to the 10th percentile in weight. We were told if we couldn’t get his weight up we would have no choice but to put in a tube. So, we were advised to keep him upright and do our best to keep food down. Thus began our ridiculously extreme “lifestyle” changes.

Swings, rockers, bouncers, jolly jumpers and tummy time were outlawed, along with anything else that would cause jostling or pressure on his stomach. My arms and back were not strong enough to hold him upright all day, every day. So my little boy rode in the carrier against my chest for 8-10 hours at a time. He ate and slept upright in the carrier, only coming out for diaper changes. Because a full stomach increases the odds of vomiting, I began breast feeding small quantities every 30 minutes during the day and every hour at night. Lying down meant vomiting, so his dad and I took turns putting him in the baby carrier at night. We slept in shifts with our little boy strapped to us upright while sitting in the recliner. When he jumped to the 13th percentile we were able to put the feeding tube on hold, as least for as long as he was stable.

It was over two years later that we were able to start lying him down at night. Our little man, at two years of age, was finally in 12 month-old clothing and had climbed to the 15th percentile. One of the hardest parts was watching him learn that he couldn’t do many things the other kids could do. No gymnastics classes and trampolines. No seesaw at the park and no eating anything without asking mommy first. He would watch kids play with a look of longing in his eyes, but he knew the pain was not worth it.

By the time he was three-and-a-half, with the help of medication, his GERD was classified as controlled. He was free to be a normal kid. It was this clearance from his doctor that led us to the playground section at Walmart. We wanted to get him something to celebrate that he had come out the other side of his terrible ordeal. We wanted to get him something that would allow him to do what he couldn’t do in all the years before. My husband and I stared at all the options, trying to figure out what we should get. I looked down to find my son no longer by my side. I felt an immediate sense of panic as I called frantically for him. His little voice called out, “I’m right here mommy,” but he was nowhere to be seen. I followed the sound of his voice and felt relief when I found him standing behind the box to the left of me. I went over to him, intending to lecture him on how I need to be able to see him at all times. But, when I saw him starring longingly at the box, I knelt beside him to see what he was looking at.

The picture on the box was filled with laughing children jumping on a trampoline. His face did not mirror those of the kids on the box. It was a face of defeat…of resignation. “I’m just looking,” he said defensively. He had this beaten tone to his voice that hurt my heart. He looked like a child who was just told he couldn’t play with the other kids at the party. “I know I can’t have one mommy. I’m just looking,” he said again. My heart broke even more when I realized he thought he needed to defend himself for simply wanting something so seemingly out of reach. I was saddened that he was so aware of his own limitations. Children are supposed to feel limitless, but my little guy knew all too well the risk he faced in even the most innocuous situations.

For so long he had wished to jump on a trampoline, but he had never been allowed. In the world of GERD, jumping like that would have caused excruciating pain. But unlike in years past, we now had the go-ahead from the specialist. It filled me with unimaginable joy that today, I could make it happen. Today I could give my little boy the gift of simply being normal. Today I could get him a trampoline. I looked at my husband and he just nodded. We bought the trampoline and headed home to set it up.

I was giddy as I watched his dad lift him up on the trampoline for the first time. He had the biggest grin imaginable. It was funny to watch him jump for the first time. The sensation was foreign and awkward. He reminded me of a colt trying to walk for the first time. All wobbly and uncoordinated, he couldn’t get his feet to work out the timing and move together. Eventually he figured it out and he was up and away, flying as high as his little feet would take him. Every time his feet left the surface of the trampoline, sounds of laughter hit the air and warmed my heart. I was so at peace and so filled with joy that I didn’t even notice the rest of the family join me outside to watch. “Look at me,” he said giggling, “I’m jumping mom! I’m jumping! I’m jumping!” His laughter completely replenished my tired body and in that moment I could think of nothing I wanted more. He was jumping. He was happy. He was not in pain. I stood on the lawn and cried. He was radiating so much joy it was impossible not to feel moved watching him. He had waited for so long to do something so normal, so common, so ordinary. And yet, his reaction was extraordinary. I looked at my husband who was also beaming, “Who knew a trampoline could make us all so happy?” I said to him, with tears rolling down my face.

Our journey with GERD had come full circle. In the year to come we would have yet another battle with his Dystonic esophagus, but today was a good day. Today our son was just a normal little boy on a trampoline. Together with my husband, we stood on the lawn and watched our little boy jump until the sun went down.

Be Careful What You Ask For

I sat there in the car…frozen…staring at my phone. I didn’t know how to process the information I was just given. Overwhelmed, tears fell down my face and I had to remember to breath as I suppressed the urge to cry. My son’s little voice from the back seat made it that much harder, “Mom! Who are you talking to? I’m gonna be late for school!” I swallowed and tried to take some deep breaths and steady my voice. “Well, let’s get inside then!” I said, in the peppiest voice I could muster. Once in the school, he gave me the biggest hug and told me he loved me. I had to fight the urge to grab him and tell him how sorry I was. As he walked up to his teacher he began coughing and she lovingly reminded him to cough into his elbow. The horrible bark like cough sounded painful. With the new information I had just received, I knew that it probably felt even worse than it sounded. I started to well up just hearing it. The mere thought of his little lungs sore and swollen made me feel broken. When he greeted his teacher his words pushed me over the edge, “Hi miss. I have a big cough again. I’m not sick, I promise. But I can’t stop. I’m sorry.” I quickly walked away before he could see me cry.

We all know the old adage, “Be careful what you wish for”. We have all said it or had it said to us. And it’s funny because I knew exactly what I was asking for, even praying for. It’s the same thing I ask every day, “Please let them find out what’s wrong with my boy.” Mystery GI symptoms have plagued him since birth. Years of testing has yielded dozens of normal tests results. There is nothing medically wrong with him, yet for years he has had pain, vomiting, slow physical growth and periodic internal bleeding. This year, when his bleeding increased, we became aggressive and desperate. We demanded second and third opinions and went back to the hospital every few days for two weeks. Finally, we found a GI specialist who had ideas and who didn’t seem stumped. She ordered new tests and believed everything we said. I hoped and prayed that she would find something…that she could help. So now I sit here confused and conflicted at my own feelings of devastation and guilt that hit me the minute I heard the words, “Abnormal test results”.

These are the words I’ve been fighting to hear. Desperate to hear. I have known something was wrong since the day he was born and I have begged and pleaded for help. I have demanded testing and answers because I knew that finding the cause of his distress is the key to getting him treatment. But now that I have been given what I asked for, I’m freaking out. Until now, the existence of his GI issues had not been medically confirmed. We knew something was wrong because he had symptoms. But what it was, how severe it was, and how to treat him was anyone’s guess. Now that I have confirmation, all I want to do is cry. Both tears of relief, but also sadness.

You see, I have been telling every doctor with great confidence that they are missing something. That they need to look harder. That their tests are inaccurate. That I know I’m right, and they are wrong. I have looked crazy. Overprotective. Obsessed. Arrogant. Demanding. Impatient. I was sure getting these results would make me feel vindicated and validated. It would be a bit fat I told you so. But even better, I would have answers that would lead to treatment and pain relief for my boy. This call was supposed to be exciting, relieving, validating and helpful. But in reality, I got more than I bargained for.

The truth is, while I knew I was right, I was hoping I was wrong. To learn that even medicated, his pain is immense, was more than I could take and the news completely gutted me. To hear that his “asthma” like symptoms are indeed caused by stomach acid in his lungs took my breath away. The fact that fluid and acid was pooling in his esophagus made me sad. Hearing phrases like “possible structural defect”, “dysfunctional esophagus”, “exploratory surgery” and “high risk for anesthesia” made me cry. But it was the “concern of esophageal and lung damage” that made the physically shake.

I feel guilty that I ever wished for validation that I was right. And I feel even guiltier that hearing I was right made me feel relief. I feel absolutely devastated that my brave sweet boy is in so much constant pain and I feel hope that he can finally get some relief. As his mommy, it’s my job to help him. It is my only purpose. Yet I don’t have the power to save him from his own body. I feel like I’ve failed him, but I also feel proud that I followed my instincts and fought for him.

The cold hard truth is that this is all good news. It’s information we can use to help him. Now that we know what’s wrong, the doctors can start looking for the underlying cause. While I know this is good news and a step in the right direction, it honestly feels like bad news. My heart is shredded, my soul broken and my eyes weepy. But, my head is relieved. My brain is happy to finally have choices and direction. The hubris in me does in fact feel validated. It’s an odd battle of logic and love, of compassion and resolve and of weakness and strength. I feel confused and conflicted. Scared and relieved. Happy and sad. Guilty and proud. The simultaneous polarized emotions I am experiencing makes me feel off kilter and disoriented. It’s foreign and strange and I do not like it. I know how to feel happy and I’ve learned how to deal with pain and sadness. But both at once is a wild, stomach-turning ride.

I will keep fighting. I will keep praying. I will keep loving him. But now I will have to also remember to be careful what I ask for. The answer may not be as easy to accept as I think.

Extraordinary

We were exhausted. Tired and emotionally raw. Our little boy was finally stable and home from the hospital. He was in so much pain that I was actually surprised and relieved he’d finally fallen asleep. He was almost two and had given us quite the scare. His feet seemed to stop working and he vomited relentlessly until it became red and streaked with blood. He had no fever and every test had yielded normal results. His discharge papers read, “Undiagnosed. Suspected underlying neurological condition.” We were given referrals to neurology and GI, prescriptions and sent home. It was a beautiful summer day and our little boy slept in the carrier as we walked to the pharmacy to fill his prescriptions. Standing on the corner waiting for the light to change, I became so lost in thought pondering what could be wrong with my precious boy that I almost didn’t hear her.

My husband’s abrupt “Excuse me!?” snapped me out of it. I looked up to see the whole street corner staring at us. I felt immediate confusion by the appalled look on the woman’s face. What happened? Did we do something wrong? I could think of nothing. We were just standing there waiting for the light. She had aggressive body language, matched only by the angry look on my husband’s face. “I said he’s old enough to walk,” she said gesturing to my child sleeping soundly against my husband’s chest. I stood looking at her my mouth literally gaping. Did she really just say that? People were staring at us, waiting to hear what we had to say. I instantly became self-conscience. I wondered if everyone felt this way? I spent the last week in a nightmare and had just been told my sweet child probably has a mysterious neurological disorder. Now I felt like the whole world was judging me for it.

We just stood there silent. It was as if we both decided simultaneously that she was not worth engaging. My husband’s jaw was tight and I could tell he was upset, but he turned his head and ignored her. But apparently our child in a carrier was too much for the woman to take. She reached out and tapped my husband on the shoulder forcing him to acknowledge her. “You are not doing him any favours treating him like that,” she snapped, “He should be walking!”

I was truly caught off guard. I was humiliated as I looked around at all the people starting at us. Was she really questioning us as parents!? Especially after all we’d been through to help him!? Could this one act of carrying our sick son be enough to announce to the whole world that we were not doing right by him? I felt so judged…so isolated…so misunderstood. It made me feel all alone and inadequate. I wanted to do more for him, but how could I? I was giving him everything I could.

Sanding on this corner looking at this woman, I tried to think of something clever to say to make her understand. But, in my emotionally exhausted state, the only thing that came was stunned silence. My husband, however, was not as lost for words as I. He said to her softly, yet firmly, “Not that it’s any of your business, but he has some neurological issues and was just released from the hospital earlier today. So no, he can’t walk right now.” There was an audible gasp amongst the audience. No one expected this response and all eyes turned to the woman to hear what she would say next.

She was stunned. Her indignant self-righteousness was fading, but not gone. She looked at my husband still holding her aggressive posture and said flippantly, “Well, I didn’t know that.” I was surprised by this response. It was as if her lack of knowledge made her actions justifiable. “No, you didn’t,” My husband retorted. “And you may want to consider that fact the next time you feel the urge to walk up to parents and publicly judge and insult them. We are doing everything possible for our sick child. The ONLY one not doing him any favours is you.” And with that she turned around and ran away.

This short interaction has had a lasting impression on me. And not just because of her audacity, but because I can relate to what she was thinking. While I have never walked up to a mom and criticized her, I have thought things to myself not too dissimilar and it made me feel awful. Here I was in an extraordinary situation wishing that others would understand and I was guilty of thinking the same things as she. My husband’s words hit me like a hammer. I had silently judged without stopping to think maybe I didn’t have all the information. The thought that I could have dismissed a mother in desperate need of support, a mother like myself, deeply bothered me.

It was not too long after, I witnessed a scene in the cereal aisle of the grocery store. A woman was standing there watching her son flip out, doing nothing to control the situation. He was maybe four and was sitting on the floor screaming at the top of his lungs with his hands over his ears rocking back and fourth. As she stood there watching, a man walked by and scoffed at her. He was trying to maneuver his cart around the screaming child. He said to her, “Lady, control your kid. People are trying to shop.” Now, personally, if this were my kid I would pick him up and leave the store. A week ago I would probably be thinking something like, “Why isn’t she removing him from the store?” But just coming off of my public judgment on the street corner, I decided to change my approach of silent disapproval. I too had something to say to her. So I walked up and said it.

“Don’t worry,” I said in my most sympathetic tone, “This was my whole day yesterday. Gotta love life with toddlers.” The woman said nothing. “Honestly,” I continued “it happens to all of us. Don’t worry about it.” I said gesturing to the man who was now further down the aisle. The woman broke into tears. She explained that her son was recently diagnosed with Autism and he would freak out for unknown reasons. Right now, in the cereal aisle, she had no idea what triggered the episode or what to do about it. She did know that touching him or attempting to move him would only worsen his hysteria. My heart sank at her story. This woman was in an extraordinarily difficult situation and doing everything she could. Sadly she was only met with judgement. As I reached for my box of Cheerios, I told her to hang in there. I reassured her that she was doing a good job and was a good mother. To my surprise she grabbed me, hugged me and said, “I really needed to hear that today.” Her words hit my heart and echoed what I have felt so many times before.

Over the years I continue to think back to those two events and they have been forever burned into my soul. Because of these two random encounters I feel compelled to offer words of encouragement to parents who I catch publicly struggling. I force myself to smile approvingly at parents who seem to be doing the odd and unconventional and I am constantly surprised. I’ve met a wide range of unexpected and extraordinary circumstances. The eight-year old girl who was saying mean things at her mom in the kitchen store was angry that her dad had just been deployed to war. The mom who was indulging her son with candy every time he fussed was fighting cancer and had no energy for a battle of wills. The dad who was on his phone at the park while his son begged to be pushed on the swing had just lost his mother. In years past, I might have silently disapproved of these interactions. But because of one mean stranger I was able to offer words of encouragement, load a tired cancer patient’s car for her and push a grieving man’s son on the swing. The more extraordinary situations I uncover, the more I realize that at one time or another, we all fight something extraordinary. Things that make us feel alone and desperate. And desperate times call for desperate measures. When these things happen, we do what we must to survive. Sometimes that means our parenting choices look strange. These are the times when the world feels harsh, but we need it to be kind. I truly believe that if anyone should have compassion for parents, it’s other parents. What we really need is support, not judgment.

So to the random lady on street, I can’t thank you enough for making me realize this. You hurt me and embarrassed me. But, you made me realize that I was guilty of forgetting that my battle is not an isolated one. You reminded me that we all struggle and that none of us have the whole picture. You changed how I see others and how I approach them. You connected me to my community and gave me compassion for the unconventional. But mostly, you opened my eyes and showed me something extraordinary.

Soldier

I sat there listening to you scream on the other side of the door. At first I was relieved when you chose your dad to go in with you, but now I was regretting it. I could hear you crying for your mommy and I could not go in. The hospital had a one parent in the procedure room policy. So I stood there and cried as I listened to you call for me.

I felt huge relief when the nurse opened the door and asked me to come in. But the emotion was fleeting. My heart sank when she told me they needed me to help hold you down so they could get the probe in. As I entered the room I could see you fighting and I was surprised by the sense of pride I felt. When things get scary and tough, you don’t hide or run. You hold your ground, you stand there, and you fight. And I love that about you. I did my best to look confident as I walked up to you. The terror and fear on your face devastated every part of my being. But there was no choice. This had to be done. I walked up to you and placed your face in my hands and said, “Baby, it’s not going to hurt, but it will be uncomfortable. I need you to lay still. I need you to trust me. This will help you.” You looked at me, your eyes as wide as I’ve ever seen them, and you nodded ok.
Then dad held your face, I held your hands, and they inserted the probe into your nose. The sound of your scream is something I will never forget.

The next 24 hours was brutal and exhausting for both of us. You, because you had a probe that went up your nose, down your throat, and into your stomach. You were confused and uncomfortable and not happy with me. But for me it was hard in ways I didn’t expect. The fact was, we needed this test. It was purely for diagnostics and I was excited to see what information it would tell us. We were hoping to learn about your gastric bleeding and determine if your were indeed inhaling stomach fluid as suspected. But, as I sat there and watched you sleep, none of the science mattered.

The cold hard fact was that you were lying here scared and alone in a hospital bed with tubes coming out of you, simply because it’s what I asked you to do. You did not want to be here from the minute I told you about it and yet you came here willingly. And when you were terrified on a surgical bed being held down by strangers, you complied, because I asked you to. You trusted in me and believed in me. So really, I did this. It’s my fault this is happening. And I’m a mess about it.

I want you to know that I’m sorry. I hope you are not scarred for life. I want to thank you for believing in me and trusting me. You have no idea how much it means to me. I hope as you grow, you will come to know that we had to do this and that it really will help us learn how to treat your pain. What struck me through all of this was that once again you expressed understanding and compassion in the simplest ways. The nurse who held you down and placed the probe tried to console you. This is her job and she’s used to it, but she still felt bad. After the device was in place, you would not look her, even when she explained how it was going to help. You just hid your sweet face in my neck and cried the whole time she talked to you. As she got up to leave the room she said she was sorry and as she closed the door to your hospital room you finally spoke. Your face was hidden and your voice muffled, but your words clear, “Thank you.”

Those words had a profound impact on me. You have such grace, even in times like these. You are not angry at the stranger who just held you down, but thanked her. It let me know you understand that we are all trying to help you, even if the process is scary and confusing. It showed kindness and manors in a moment not requiring it. And it made me proud.

It also made me sad. You are only four and yet, you are stronger than me. Braver than me. More trusting that me. Sitting here looking at you, I feel so much love for you that it makes me weepy. Tears are flooding my eyes, and I feel like I’m truly overflowing.

So my sweet boy, thank you. I’m proud of you. I’m proud of how you handled this and how you handled yourself. Please know that I am so sorry this is happening to you. I’m sorry I made you do this. I know it’s my fault and I hate it. But being a mommy is hard sometimes and I have to make hard decisions. Decisions that I hate. But, in the end, I would rather you be mad at me for one day than inhale stomach acid for four more years. I’d rather you be freaked out for a five minute tube insertion than spend all winter bleeding internally.

So while I felt awful, know too I would do it all over again. I love you enough to overcome my own guilt and fear to try to help you. You have taught me to fight and fighting is exactly what I’m doing. I just hope and pray that one day you understand that I am fighting the same battle as you. I am your soldier and I will fight until this battle with dystonia is over. I will fight with you until the day I die. And when you are too tired or scared to fight, I will keep waging war. You will never ever have to fight alone. This is my promise to you. It’s a promise I wish I didn’t have to make, but is a promise I will never break. So please know that no matter what happens, I am battle ready, and this soldier is never backing down.

Blueberries

I sat on the floor of their room in front of the closet. I came in here exited at the prospect of getting rid of clothes that are too small. Our house has been overrun with baby clothes and I was excited to make some room. But I was not prepared for the flood of emotions that would hit me. Confusing, conflicting emotions that left me sitting on the floor holding a shirt and crying.

It’s silly I know. But I couldn’t help it. I was overwhelmed. It was a blueberry stain that got me, pushing me over the edge to tears. How insane does that sound? I literally sat on the floor, crying because I saw a 2 year old blueberry stain on a pair of pajamas. I was not ready for it! But I saw the stain and I lost it. There were so many reasons why this shirt made me cry, that I don’t even know where to start. So I guess I will start with the most obvious.

My babies are growing up. It’s cliche I know, but they are getting so big, and I’m sad I don’t have my babies any more. I’m sadder yet that I know I will probably never have another child. I want more babies. Badly. But with the nature of our genetics, I just don’t think I have the physical and emotional capacity for more. I don’t think I would be the best mom I can be. I would be too strung out and pulled in too many directions. But the thought of being done makes me sad and long for another baby. So I sat there, struggling with the closure of giving clothes away. There’s a finality to it that is overwhelming. And I found myself on the floor of my sons’ room, mourning the loss of a baby I will never have.

Compounding my emotions was the size of this particular shirt. It’s from a pair of PJs that are size 18 months. Not surprisingly, they fit my 18 month old. But here is what got me. These were the same PJs my first born was still wearing at almost 3 years old. He was tiny. I had forgotten how tiny, till just that moment, when I sat starring at his old hand me down pyjamas. The size difference of my two boys for their relative ages exaggerates this all the more. It brings me back, and reminds me of just how hard my oldest had to fight to grow. How small and helpless he was. It made me ache just remembering his pain, and my agonizing over it.

It made me proud too. Proud of his growth, and of what we did to get him to where he is. At four and a half he sits firmly in the 50th percentile. He’s average. But average for him, might as well be as big as a mountain. He is resilient, and he didn’t quit. Looking at this little shirt showed me how far he’s come and it made me proud of him. Proud of me. Proud of my husband. We have never worked harder for a 50 percent. Never been so happy for an average score. It made me appreciate the meaning of words like normal and typical It made me overjoyed that, for the first time in his life, he gets such a label.

Then I saw that stain. I remember the day the stain was made. He was two, and this shirt was massive on him. He sat in his high chair waiting for me to bring him breakfast. We had finally started to get his GERD under control and I was now allowed to give more than toast, rice and bananas. It was a glorious morning, and for the first time that I could remember, he ate without crying. No fighting, no pleading, no need for distractions. He sat in his chair and he happily ate blueberries. And when he squished one between his fingers, he erupted in a fit of giggles. That smashed blueberry got smeared on his shirt. But I didn’t even bother to wipe it off. Instead, I got my camera and took pictures to show his dad. As I watched him eat, I was flooded with emotion. I was filled with relief. As I saw it was possible for him to eat pain free, I melted from the inside out. And just like I did today in my sons’ room, I found myself on the floor crying. Tears of pure joy. He was eating. He was happy. It was amazing. The memory of the moment came flooding back to me, and as I saw this faded little purple mark, I felt an overwhelming urge to go and hug my son.

I found my average sized four year old sitting in his playroom. He was just recovering from GI bleeding and had lost a lot of weight. After a long and heartbreaking summer, the bleeding had stopped and the weight was coming back. When he saw me, he said with a muffled voice that indicated a full mouth, “hi mom. Want some crackers?” Already in my emotional state, the sight of my boy for the first time in well over a month, happily eating pain free caused an explosion if emotion. I burst into tears. My sweet boy crawled into my lap, hugged me and said “Mom, it’s ok. They are just crackers”. As I sat there holding him in my arms, I wondered if he would ever understand that he was eating more than just crackers. He might as well have been eating blueberries.

Because You Don’t Know.

Over the last month that I have been writing, I’ve been absolutely overwhelmed and shocked by the outpouring of love and support we have received. It has opened a dialogue with our loved ones around what we’re going through and what we need. This has been a wonderful outcome of this little project. As the blog is talked about and discussed amongst those close to us, two question consistently come up. Why am I doing this, and what am I hoping to get out of it? There is no judgment behind this question, but rather a tone of genuine curiosity. What is it, that I have to gain by posting in such a public forum the challenges facing our family? It’s a good question. I’ve had a hard time articulating the answer. For me the answer is emotionally intuitive rather than something that is clear-cut and easy to explain. Many assume it’s therapeutic, or that it is an easy way explain to all those that love us what’s happening. And while yes, both of these are true, they are only side benefits. The real reason is complex for me to explain, yet simple to feel. While I don’t feel like I owe anyone an explanation, I feel like the answer to this question is incredibly important. So here it goes…. I will try to explain why this has become so important to me and why I felt like I needed to do this.

When someone knocks on your door with the March of Dimes and asks you to support juvenile diabetes, people do so gladly if they have the financial means. As a society we know what diabetes is. We know that it affects thousand families. We know these families have expensive medications and that kids diagnosed with it go through a lot. Simply put, supporting diabetes is supporting a good cause. With a certain level of societal awareness comes a basic understanding of the disorder. If your friend calls and tells you her daughter is in the hospital because her insulin levels are out of control and she started to go into shock, you would know exactly what she means. You would be terrified for her. You would feel for her child. You would want to know how you could help. And more importantly, you would understand words like insulin and diabetic shock.

When your friend has to cancel a play date because her son is having an asthma attack and is in respiratory distress, you completely understand. Chances are you would text her throughout the day to check on her little boy and make sure that he was doing alright. You wouldn’t question the need for his inhalers, nebulizer and medications. You wouldn’t see him playing at the park and think “well he seems alright now he must not have asthma.” You would understand that asthma attacks are episodic. If you heard a child with asthma wheezing, you would know he needs help. If you were a close friend, chances are you would even know where to get his rescue inhaler.

Now, if I call you and say my child is having a dystonic storm. What does that mean? If I tell you I’ve had a bad night and need support because esophageal Dystonia was causing GERD, do you even know what I’m talking about? If I say my son’s chronic cough is due to Dystonic spasming, do you understand what I’m saying? If I simply say my son has Dystonia, do you know what it is without me having to explain it to you?

And here my friend, lies my struggle. The answer to all of these questions is no. You have no idea what I’m talking about. Even if you are a doctor or a nurse. Dystonia is more common than Parkinson’s, and yet everyone knows what Parkinson’s is. My issue is awareness. It feels like I’m showing up at your front door and asking you to support jibber jabbers. When I call you to cancel a play date, I feel like I might as will be saying “I can’t come because the thinga-ma-bob is bothering his watcha-ma-call it. When my son goes to the park and has the dystonia equivalent of a wheezing, no one knows he needs help.

How can I ask you to support gibberish? to understand babble? to help my sons when you don’t know what’s wrong? This is my attempt to translate the gibber jabber and the babble into plain English. To make you understand and be aware of the disorder, what it means and the overwhelming impact it can have. With understanding comes compassion for it’s impact. My dream is that someday dystonia will be a disorder that has the social understanding and support similar to that of diabetes and asthma. In reality, the kind of Dystonia that we suffer from impacts our life in ways not too dissimilar to severe asthma or diabetes. It’s obviously very impactful and challenging. However, with the right diagnosis, the right treatment and the right medication sufferers can live a very long and happy life.

The awareness is where the problem lies. My kids suffered for years longer than necessary, because nobody knew what they were looking at. We continue to struggle because treatment is not accessible. This lack of knowledge and awareness that the disorder exists, even within the medical community is tragic. We were luckier than most. Between my husband and sons we ONLY had to see 10 specialist over the course of four years to find somebody that knew what was wrong. Most people search longer and see even more specialists before they get a diagnosis. However, your GP can tell you that your child is wheezing and has asthma. Your GP would know to order blood test and check for insulin levels if certain symptoms appeared. This is what I want for other families and for other children with Dystonia. I don’t want them to have to go decades in pain simply because the doctors weren’t aware of their symptoms and that this disorder even existed.

I also want people to know outside the medical community. Community support, participation in fundraising campaigns, research grants, and social awareness all start with the general public. How can these things happen for our children and how can we find new treatments, or even get new medications if nobody’s ever heard of Dystonia!?

So, long story short. To you reading this, the fact that you are reading this is why am doing it. For those of you who don’t have Dystonia, do you now know what it is? do you know how it impacts individuals and families? The next time you hear someone trying to raise money or awareness for Dystonia, will you feel like it’s a good cause? Will you have compassion and understanding when you think of dystonia sufferers? If you can answer yes to even one of these questions, then you know why I am doing this.

As September ends, I plead with all of you to go to the White House website and sign the petition to make September Dystonia awareness month. It is a very important first step in helping 500,000 people and their families across North America. You do not have to be American, you just have to have a valid email address. It’s free, it’s easy, and it’s fast. Please click on the link below to show your support.

http://wh.gov/lh5aj

Thank you for reading, and for showing your support for Dystonia!

Dear Dystonia,

I hate you. You have challenged me in ways I never knew possible. You cause exhaustion, pain, frustration, confusion. You leave isolation, and fear in your wake. You steal innocence and worry free childhoods. You make your victims unrelateable to those who once understood. You work your ways into all aspect of life and into places that nobody wants you. You are mean, you are unforgiving and you are relentless.
I hate that we can never beat you, never get rid of you. I hate that you turn the everyday mundane into obstacles. I hate you for taking away my right and ability as a mother to help my kids, and make them feel safe. I hate that you cause stress, and anxiety, and helplessness. But mostly, I hate that you have my kids. They are sweet and little and perfect, and they do not deserve you. You are destructive, and I hate you.

But, I have to tell you a little secret. All the while, you have been attacking the people I love most in this world, you have unintentionally left behind some unexpected consequences.

When you force me awake time after time, night after night, you give me time. So much extra one on one time. Time with no distraction, no phones, no TVs, no toys. Just me and my little boys snuggled up in my bed together. While you were busy causing vomit and pain, you left behind lessons in what it means to truly love unconditionally. While you are busy forcing four people into one bed, you have also forced in closeness and intimacy. While you were busy causing pain in little boys legs, you taught them that they can overcome, persist and achieve. While you are busy making funny postures and movements, I am learning to read the minute details of my children that would have otherwise gone unnoticed. While you are busy disguising yourself to outsiders, you have taught my kids that their parents will always believe them, even when others don’t. You fostered a trust and a bond that I never knew possible. While you were busy trying to stress my marriage, you left us with the true meaning of partnership, and commitment. The financial stress caused by your cruelness gave us real life lessons in what it means to prioritize and put family first.

So my dear Dystonia, bring your best. We can take it. Just know, that while you are busy causing pain and irritation, I’ll be busy picking up the little nuggets of gold you’ll be leaving behind.

The Silver Lining

To say my oldest son is adventurous would be an understatement. We joke that he is going to grow up to be a stunt man. The kid is afraid of nothing. By four years old he has done some crazy stuff for his age. From swimming with sting rays in the open ocean to boogie boarding and Zip lining. He loves rock wall climbing and roller coasters. There is nothing he won’t do.

More than anything else, however, he loves to climb. When all the other moms are looking low to child proof door knobs, outlets, and kitchen cabnets, I was looking up. I became the master of climb prevention and could give a seminar on all the ways a child can use everyday household items to reach the ceiling.

One day while at the park, yelling at him to get out of a tree, it finally hit me why he is so fearless when he climbs. “Down. Now”, I said sternly, “this is not safe and you are going to get hurt.” My little boy stopped his assent and sat down on a branch. He looked at me and said in a clear tone that sounded just like his dad, “but I hurt anyway. So why can’t I have fun?” My heart broke at this. I pulled him out of the tree and hugged him. I explained to him that there are different kinds of hurt. Not all of them go away. Some can last a long time or be permanent. Falling out of a tree could cause an ouchie we can’t make better. “Ok,” he accepted, “sorry.” I looked at his sweet little face, all dirty and disheveled. I couldn’t help but smile at him as I picked pine needles out of his hair. “‘Come’on”, I said, “let’s go play on the jungle gym. That will be a safe place for you to climb.” But, my suggestion did not satisfy him. “Boooooooring” he said in a sing song voice. “Sorry kiddo”, I said, “It’s the best I can do.”

It’s a funny thing, how good emerges from bad. If you stop and take the time look for it, silver linings can appear in the most unfortunate of circumstances. It took four years for me to see the silver lining of dystonia. But it is there. It’s not a dull and tarnished silver either, but rather, it is bright and shiny and hard to miss. In fact, it is so wonderful that I never knew it was even related to dystonia, until my four year old pointed it out.

You see, to call him fearless is inaccurate. Rather I should say, fear is not a deterrent. As we all know, fear can be paralyzing. Even as an adult. It can stop us from making good decisions, or tying new things. Dystonia has given him so much to fear at such a young age that he has been forced to learn how to overcome it.

In retrospect, he began so many things with fear, many of which we take for granted. I remember as a little one year old he was even afraid to eat. Food caused pain. His solution was not to eat. When his feet hurt, he was afraid to walk. When he couldn’t hold a pencil, he was afraid to go to school. So many little things to be afraid of. But, he had no choice, he had to eat, and learn to walk, and go to school. However, he has learned to quickly conquer that fear to do the task at hand. He does not quit because he gets scared. As a sheer matter of survival, he had to learn to overcome his fears.

That is dystonia’s gift. I love his “what’s the worst that can happen”attitude that makes him bold and adventurous. I think for him, he already knows the worst that can happen. He knows what its like to fall down, to be hurt, to be singled out. He has faced all these issues head on, day after day, his whole life. For him failure is an invitation to be creative and find a new way. He’s an outside the box thinker. He has to be. While others fear the unknown, he is busy enjoying it. He chooses to be happy and experience all life has to offer regardless of what challenge is in front of him. This is a life skill that even most adults have not mastered. It’s a really hard thing to do, but my little four year old does it with grace and humour. And, as much as I hate it, I have dystonia to thank for it.

The Little Doctor

He’s finally doing better. After weeks of back-and-forths from the emergency room he’s finally stopped bleeding internally. The final diagnosis is esophageal dystonia as the underlying cause of GERD. Basically all the spasming in his throat is causing the esophagus to open and let out acid. This is causing widespread and severe gastric ulceration, bleeding and pain.

With the right dose of medication and lots of hugs and kisses, he seems to be on the mend. Today is a good day. No cramps no crying, just a happy healthy kid. These days warm my heart and make me long for more of them. Getting ready for bed, he decided we all needed our medical exams to make sure we were okay before we slept. I had a twang in my heart as he went and got his toy doctors kit, because a doctor’s exam had become part of his daily routine.

He very carefully examined his baby brother. He was deemed to be in perfect health. Next to go was dad. He took extra time making sure he got a good look at his ears, throat and nose. After, he checked dad’s heart. He took his little hands and pushed on his dad’s stomach to make sure it wasn’t sore, just like the doctors had done with him. My husband was deemed healthy. “Hooray!” he clapped “Good work dad” he said in his most encouraging tone.

Next came me. A little piece of my heart melted as I watched him get out his blood pressure cuff and put it on my arm. “Now mom,” he said, “this is just going to give you a little hug okay? It’s not going to hurt, but I need you to be still”. “Ok doctor” I said smiling at him. I sat watching him squeeze the ball on the cuff, and wondered if he knows how much these moments mean to me. Not only are they sweet and heart warming, but they give me such great insight into what he is thinking and feeling. They let me know which moments in his life and day have left a lasting impression. It made me happy to know that the care he had received from his doctors and nurses was kind and loving. He mimicked them perfectly. I received a high five for my excellent blood pressure exam. Next came the usual eyes, ears, nose and throat. He nodded in approval, and I assumed I passed. Then, out came the toy stethoscope. I was really amused when he put it on my legs instead of my heart. He clearly had no idea what the stethoscope did. He knew enough to know that it helps the doctors to determine if somebody is sick. How exactly it did that, he hadn’t quite figured out yet.

Then he got serious.

“Mom, it’s not good news.” I was actually quite surprised by this turn of events. Quite Frankly, I expected a clean bill of health. “Oh no.” I said, doing my absolute best to look concerned and serious. “Please doctor, can you tell me what’s wrong?” He looked at me, his sweet little face full of concern and compassion. “Well mom, it’s your legs”. Now I was listening. I knew I was about to gain insight into his little world. “Your legs are sick mom, they are not working right”. Trying really hard to go with the flow, I asked “what’s wrong with them? Can you make me better doctor?”. He shook his head from side to side, and in an oddly matter of fact tone said “I don’t know what’s wrong. Sorry, I can’t fix it. But you are going to bed now, and they are going to start hurting”. At this point I was really not sure what to say. I chose to play along and simply said “that doesn’t sound good.” “No.” He continued “And the pain mom, it’s probably going to move to your back, and it may make you want to throw up. It will probably wake you up. But don’t worry it won’t last forever. But it will come back”

I took a deep breath, and tried to control my urge to grab him tightly and sob. So instead, I asked him if I could have a hug. He wrapped his little arms around me and said “don’t worry mommy, if you wake up and get scared, I’ll be here”. He was still wearing his little stethoscope around his neck. I told him how happy I was to have such a good doctor. I asked him if he could hop into bed and wait for me while I went potty. He nodded, kissed my cheek and I left his room. I went immediately into the bathroom, I closed the door, sat on the floor, and I cried.