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 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.

Newton’s 3rd Law

It’s serendipitous that my passion for science started in 3rd grade. Although it did not seem so at the time. I hated third grade. It was the year the teasing began. The year I spent every night crying. The year I wish I could forget.

The biggest, meanest bully in the whole school happened to be in my class. He was my teacher. He picked on me and made fun of me the whole year. I was diagnosed early on with a very obvious and often debilitating case of dyslexia, which affected me particularly severely in english and mathematics. This made me a very easy target for my horrible and disgruntled teacher. To make matters worse, the whole class followed his lead. Because of my dyslexia, I was forced to watch like an outsider while kids played, learned math and read books. I found myself isolated, without friends and falling further behind everyday. Each school experience was wrought with heartache and was permanently scarred into my memory. There is not a year of my life I remember more vividly than third grade.

My teacher was eventually fired. He shoved a little boy into a book shelf and was let go with just weeks left in the school year. It was toward the end of his time at my school that our class had a guest speaker come in and do a physics demonstration. It blew my little mind. Nothing he did was new. I had seen pulleys and ramps and levers. I already knew what they did. What I did not know was how they did it. The demonstration took something so common and boring and made me see it in an entirely new way. All of a sudden I became aware of the invisible forces of the universe.

As the years went on my life improved socially. But I could never get caught up academically from the year I lost in third grade. I continued to struggle in school. In an attempt to help me achieve “attainable” goals, my educators’ suppressed and discouraged my passion for science. Instead I was always steered in the direction of careers that I “would be more capable of achieving” and unfortunately less interested in. Despite my resistance and best efforts I could not overcome who my educators’ thought I was. My high school math teacher told me I was unteachable. My english teacher said extra tutoring would be a waste of both our times and the guidance councillor advised me against taking any courses that were too challenging.

Through immensely hard work I got into university and studied international affairs. But as much as I enjoyed my program, I still could not forget third grade and I could not forget science. As the final weeks of university approached, Newton’s Third Law weighed heavily on my mind. So, with my liberal arts degree in hand and absolutely no qualifications, I began applying to as many science-related jobs as I could. I relied on my belief in Newton’s Third Law and the knowledge that it would help me.

I’ve always remembered the Third Law. If you asked me to tell you the first and second laws, I couldn’t. But that Third Law…it struck a cord with me. I thought often of it when life got tough. It tells us that for every action, there is an equal and opposite reaction. Anyone who has observed the kickback of a gun or seen footage of a rocket launching to space knows that this is true. It’s a simple concept, but an important one.

I quickly came to believe that Newton’s Third Law had real life implications outside of the context of physics. Even in the events of day-to-day life we experience the equal and opposite reaction. For example, good often emerges from bad and we triumph over struggle. For me, Newton’s Third Law meant that while I never got to pursue my academic dreams, I was able to enter a versatile program where I would share all my classes with a boy who would become my husband. Had I been able to pursue my dream to work for NASA, I would have missed the love of my life. As the forces of my life were pushing me away from science, there was a powerful counter force pushing me to try more things, do more things and therefore find more opportunities. This led me to my career in surgical devices, which I love. It allowed me to spend every day in an operating room engrossed in science, but in a way that was never sabotaged by my dyslexia. Most importantly, the opposing forces of Newton’s Third Law meant that all my pain and struggle to find meaning in a life that robbed me of my passion, led me to my most exciting, most meaningful and most rewarding ambition of all…being a mom. My struggles were great, but they were not the only forces in play. The counter forces were there too and they gave me my life, my career, my love and my boys. In this way, dyslexia may just be the greatest thing that ever happened to me. My disability set in motion all the greatest things in my life and I’m grateful for it.

So, my sweet boys, please absorb Newton’s Third Law and think about it as you go through your journey with dystonia and things get hard….For every action there is an equal and opposite reaction. All that pain you feel in your legs sucks. But from this will come tremendous strength and perseverance. This will be a huge asset as you mature into men. When you feel solitude and isolation from the world around you, at home you have a whole bunch of people just like you. When you feel misunderstood, you are gaining empathy and compassion for those around you. When you feel singled out, you are gaining a strong sense of self. Where you find pain, you will learn to find humour. When you feel fear, you will learn the power of bravery. When you feel overwhelmed, your mom and dad will be here for you and you will feel love too.

For all the struggles you will face, remember good is happening too. I need you to remember to open your eyes and see the blessings happening during these challenging times. See the compassion, the love and the support. It’s all around you and it’s everywhere. It’s easy to lose track of it when we are feeling our worst. The good can hide lurking in the dark waiting for you to find it. So please, get up and look for it. Find a way to see the powerful positive forces blessing your life pushing back against all that seems impossible to face. Know that the stronger your adversity, the stronger the reaction is on the other side. Good comes from the even the most unfortunate of circumstances. So, when it seems no good is in sight, think of this Third Law, and get up and find the equal and opposite reaction.

What He Always Does….

It happened fast and sudden like accidents usually do. I was relieved that he was ok, but the mother in me was still a bit in shock and feeling overprotective. He had such confidence and was so calm while my nerves and adrenaline were pumping wildly. But, I was also amused and proud. Amused by the snow still stuck to his ski goggles, helmet, and shoulders from the fall. I was proud because my little pint sized man had expressed wisdom well beyond his years at the most unexpected of times.

I always ski behind him in case he falls, which is a rare occurrence. If he looses his balance or feels something is wrong he usually just kinda plops down. I guess that is the beauty of being four. You don’t have far to fall. But this time was different. This time, as I skied behind him and watched him practice his turns, I was shocked to see him suddenly flip. It was a proper front flip that catapulted his skis over his head. His skis popped off and went flying and he landed flat on his back with a hard thud. I gasped and skied down to him. “Baby! Are you ok!?” I asked with panic in my voice as I approached. He did not answer immediately, which only heightened my fear. A very long two seconds later I was standing over him and I was surprised by the huge smile on his face. “Are you ok?” I asked. He just nodded yes while looking at the sky, still grinning.”Give me your hand,” I said. But he did not accept my extended hand and just laid there. “Are you hurt?” I asked worried about him not wanting to move. I was met with no words as he shook his head no. “Can you sit?” I asked. I was relieved to see him immediately pop up. “Holy cow mom!” he said giggling, “That was a good one!”

Now the annoying grown up in me kicked into high gear. The part that wanted to understand how this could have happened. The part that needed to have a full assessment of the situation so I could do my best to prevent it from happening again. I began asking questions and he patiently sat and answered all of them. My heart was still pounding. Slowly my sense of panic began to wain and I could not help but notice the stark contrast between what we were feeling. While I was visibly worried, he was cool, calm and collected. My voice was shaky and his was giggly. My adrenaline dump was due to fear and his was due to a sense of adventure. Somewhere between me asking, “Did your feet cramp?” and, “Did you loose your balance?” he interrupted me, looked me in the eyes and laughed at me. “Mom,” he said calmly and reassuringly, “sometimes we just fall. Just because. For no reason.”

I stared at my little boy and just smiled. He was right. Sometimes accidents just happen. Sometimes little boys just fall. But what he didn’t understand was that he wasn’t just a little boy, he was a little boy with dystonia. He had no idea how terrifying it was to watch him climb and play and ski. I knew what he did not. I knew his body could stop working at any moment. That excruciating pain was always lurking just a moment away. He did not know that I live in constant conflict, torn between protecting him and allowing him to have normal experiences. With dystonia, normal activities can go wrong in an instant. Dystonia makes joy turn to fear and turns laughter into tears. When something goes wrong I worry that I made a poor judgment call in allowing him to participate. When I force him to sit out, I worry that I’m teaching him to let his disorder hold him back. It’s a conflict that can never be resolved.

Hearing his words made me realize that I was asking questions not to prevent falls, because I knew they were unpreventable, but because I wanted to know if it was my fault. Was it a bad decision to let him do just one more run? Was it a bad decision to allow my child with dystonia to strap skis to his feet and slide down a mountain? I wanted to know if it was my eagerness to let him feel normal that led to him flipping head over heels down a mountain.

Standing there looking at him it occurred to me that worrying about him falling doesn’t matter because he will always fall. Trying to prevent all accidents should not come at the expense of life’s experiences. Sure he will need to learn how to assess situations and take reasonable precautions, but more importantly he needs to learn how to fall, how to get up and how to live in spite of his challenges. What I really want for my son, more than preventing him from falling, is to allow for him to truly live. But the fact remains, he is a kid with dystonia. This is going to happen a lot.

I realized now the important part for me to focus on was not the events leading up to a fall, but the moments that happen after the fall. It’s the, “Now what?” the, “Where do I go from here?” that matters. It’s how he handles being down that is the most important.

I said nothing and just smiled at him as I thought about a way to impart these lessons on my four year old. I grabbed his skis and helped him up. He was giggling at all the snow on his mask and coat and my heart twanged at the mere sight of him looking and sounding so grown up.

“Do you need to rest a minute?” I asked. Again he just shook his head no. But, this time snow flew off his helmet and we both laughed. It was the first big wipe out he had ever had skiing and I was unsure of how he would respond. I didn’t know if he would be shaken and scared to go the rest of the way down. I wanted to use this moment to teach him about the importance of perseverance in moments like this. I thought heavily about the right words as I popped his bindings and lined his skis up for him. Struggling for the right words I asked, “Do you need anything?” His response hit me hard and I froze. Happily and confidently he said “I need to do what I always do when I fall down. Get up and try again!”

The smile on his face melted my heart and all I could think of to say was, “Well then, let’s go!” A minute later his skis were back on and he was cruising down the mountain again. Watching him race ahead, I was humbled that this beautiful human being was my son. I hoped that in life when he falls down he will continue to do what he always does…..get up and try again.

Not Enough

It was not long after his first birthday when the fever spiked. I wouldn’t have known that he was even sick had it not been for me kissing him on the head before I went to sleep. He was hot. Really hot. I gave him Tylenol but it didn’t work. The fever stayed at a solid 104 degrees. So I gave him Advil too. I sat in the rocking chair with him in my arms and watched the rise and fall of his chest. Staring at him I tried to will the Advil to work and bring the fever down. I wondered what I should do next if it didn’t work. In the screen of the baby monitor I could see you tossing and turning and I hoped you weren’t sick too. Within a minute I could see the arching start. Your neck pulled back, your arms stiff and spine arched. Your posture resembled the shape of a rainbow. Then your screaming started. The pain from the muscle contractions woke you up and you cried for me. I got up to put your brother down to come help you, but as I walked across the room to his bed, he began to convulse. The Advil was not working and he had begun to seize. It was the first seizure I had ever witnessed and I was instantly terrified. Alone and afraid I had no choice but to ignore your cries for help and stay with your brother. As I held his shaking body in my arms, my ears were bombarded with your cries, “Mommy where are you!? Why aren’t you comming?! Mommy help!”

After I got off the phone with the doctor and got his fever down I came to you. But you no longer wanted me. You felt angry and betrayed. In your moment of excruciating pain I ignored you. I had hollered down the hall several times that your brother was sick and I would come as soon as I could, but it did’t matter to you. At four-years old you were not capable of understanding. You just knew that I didn’t come. I was trying to get you both the best medical attention and care that I could and in doing so I had failed you. I knew I had to, but it still destroyed me.

For me, this is by far and away the hardest aspect of raising two kids with dystonia. It’s horrible that I have to choose between you and your brother when you are both in crisis. I can only do so much at a time. I can’t be in two places at once. I can’t always be simultaneously with both of you. What I will always struggle with is the fact that in doing what one of you needs I sometimes have to ignore what the other needs. So I have had to learn to triage needs. Your need for treatment for gastric bleeding trumps your brother’s need for emotional support during a dystonic storm. When you were crying from pain in the middle of the night and your brother was having a seizure, I left you alone in your room screaming for me. Seizure trumped back spasms. Its these choices that break me apart. I want to be there for you always. But I can’t. I am doing my best to accept this fact.

My greatest fear is that you will be scarred and confused by what I do and don’t do. Because no matter how I try to explain it, you don’t see the choice. All you see is mommy walking away from you and mommy choosing not to come help when you call me in desperate pain. You don’t see that I am trying to save you both from your own bodies. You don’t see me cry over the impossible decisions I’m forced to make. All you see is me not choosing you…me not aways being there when you need me. It is my hope that in time you come to realize that I gave you all I could, even on the days when it wasn’t enough

So to you my little love, please know I’m sorry. I am sorry for all the times I have left you scared and crying for me. I’m sorry for all the pain I can’t fix. I’m sorry for not being braver and stronger. I’m sorry that any of this is happening to you. I’m sorry I am not more. I am sorry that I am not enough. Please know that I am doing all can. I will never stop trying to help and I will never stop looking for answers. I will always do everything I can to be there for you even though sometimes I know it just simply won’t be enough.

Chosen

He was sweet and little and cozy as he sat on his bed in his T. Rex PJs waiting for my response. His repeated asking of the question broke my heart. It encapsulated perfectly how my four year old interpreted the events of the past week. “Mama are you happy with me?”, he asked again.

All week long had been filled with doctor visits and trips to the ER. I was exhausted and worn out. My very supportive friends and family had repeatedly inquired how we were holding up, how we were doing and if we needed anything. My son heard things like, “This must be so hard,” and, “I’m so sorry.” Being four, he interpreted these comments as him being hard and people feeling sorry for us that we had to deal with him. He did not understand that it was directed at the situation and his pain. He did not understand how he could be separated from his physical condition.

Having already answered him a dozen times that day, I simply crawled into bed next to him saying nothing and just hugged him. I was too emotional to speak. I was at a loss for an explanation he could understand. Then he asked me again “Mama, are you happy with me?” With tears in my eyes I said, “Yes. I am. I’m happier with you than any mommy has ever been with her little boy.” His eyes were sad and he forced a smiled at me. “Thanks,” was all he said. But I knew he didn’t believe me. While I read him his bedtime stories, I desperately tried to think of a way to make him understand just how happy I really was with him.

But, just as soon as I thought I had figured it out, he turned the tables on me. It was a simple response to a rhetorical comment. Nevertheless, laying there in the dark next to him, I was now the one who was confused and who didn’t understand.

I had put the books down and laid on my side, nose to nose with him. Quietly and seriously I said, “Of all the little boys in the world, I don’t know how you came to be mine. But you need to know that I am so glad you did. I will never ever want or love any other little boy more than you and your brother. I am so happy I get to live every day with you.” The room was filled with a heavy silence as my son absorbed my words. After a while, he spoke. I did not expect my statement to yield an answer. But he gave me one. A very unexpected one.

He was smiling now and looking at me like I was silly. “I know how I became yours mom,” he said matter of factly, “baby brother sent me.” I was genuinely caught off guard. It was not only a surprising answer but it didn’t make any sense. I felt a bit shocked, almost like I had been slapped by his words and I gave myself no time to think before I asked the only logical follow up question, “Well, if baby sent you, who sent the baby?”

Now he was giggling. He looked at me like I was an idiot for not knowing such obvious information. His answer left me speechless. I just laid there pondering his words in silence as I cuddled him in my arms. It wouldn’t be until I woke up the next morning, still next to my son, that I would find my words again. His answer still haunted me, challenging my understanding of the universe.

“No one sent him mom. Baby chose you. He chose both of us.”

I Happy

We’ve all heard the saying “laughter is the best medicine”. But, when we are at our saddest and most desperate, this saying rings hollow. Fear, anxiety and uncertainty take control of your body and you become blind to the joys of life that are so essential to moving us forward. However, as I laid there on the floor of my bathroom crying, I was about to learn that the most powerful laughter does not lie within myself. The most powerful, most healing laughter of all, was the laughter of my children.

I am not sure of the exact details of the events that brought me to my spot on the bathroom floor. Like so many emotionally big things in life, the trigger was small and not noteworthy. One thing was certain though, exhaustion was not helping. I had had a long and horrible night that had been preceded by a long and horrible week. Both the kids’ Dystonia was acting up and I was not sleeping. Trying to effectively parent two tired toddlers when you are sleep deprived and emotionally exhausted is as impossible as receiving the moon on a platter. I hate to admit it, but my kids were driving me crazy and I couldn’t cope.

Sadly, I had lost all perspective. I’m not sure what made me lose it, but all I remember is yelling. I don’t even think it was for anything important. But, here I was, losing it on my two little boys. Mid-rant, I froze. I heard myself. I don’t know what made me listen to myself, but I did not like what I was hearing. I was being unfair and I felt like a monster. Freaked out and unsure what to do, I did what any sleep deprived, irrational and emotionally overwhelmed person would do. I ran into the bathroom and hid. In tears, I called my husband at work. “I’m so tired,” I sobbed, “I can’t parent like this! I’m going to mess up our kids!” As I expressed my fears of inadequacy and not measuring up, my husband tried to calm me down and reassure me. But, I was like an over-tired toddler who just needs to lie on the floor and cry. So that’s exactly what I did.

I felt 20 years older than I actually was. It was as though my life was being sucked right out of me. I was up every hour at night with children in pain who would scream and cry and beg me to make it stop. But all I could do is hold them and rock them. The honest truth is that the phycological and emotional toll of watching my kids in pain was catching up to me. My lack of sleep compounded the issue by depriving me of the energy I needed to cope. I had no reserves to deal with kids being kids. I was sad and tired and I felt overwhelming fear that I could not be the mom they needed me to be. They needed more. They deserved more. And yet I had nothing more to give. I hated myself for not being stronger, for not being capable of more than I was. As I sat on the floor wallowing in my own exhaustion, I wondered how on earth I was going to survive this phase of life.

Then I heard it. The giggling. Crazy, hysterical giggles that made me get up and investigate what was happening on the other side of the bathroom door. I had this terrible thought that I was going to encounter something disastrous, like marker on the walls or poop all over the floor. But instead I found both boys sitting nicely on the floor laughing. When they saw me, they stopped and turned to look at me. “What’s so funny?” I asked my oldest. The baby was sitting with his legs outstretched and was smiling at me. All of a sudden he bust out laughing and his older brother followed suit. Between fits of laughter my oldest smiled and said, “I don’t know! Baby brother is just laughing. It’s funny!” Looking at them I couldn’t help but smile. The baby had the giggles and it was wildly entertaining for his big brother. The more his big brother laughed the more the baby laughed. And thus began the snowball effect for this hysterical fit they were having.

As I watched my baby, who at 17 months was not really a baby anymore, I couldn’t help but wonder what was so funny. So, I asked him. I don’t know why I asked him. I wasn’t expecting an answer. He couldn’t really talk. He had words, but not that many, and he had not yet begun to combine them. But, sitting there on the floor with his little legs outstretched and with a smile on his face, he did answer. The best most unexpected answer ever. “I happy!” he proclaimed.

His statement overwhelmed me. Not only did he speak his first crude sentence, but it was the best two words this tired mom could ever hear from her child. His timing was impeccable. I needed to hear something good, something to let me know all this struggle would pay off. This was the single greatest way my kids could ever give me that message. “I happy!” he said again clapping. His smile was big and his chipped front tooth and little dimple made me laugh too. “I Happy, happy happy,” he chanted between giggles. His older brother was now laughing so hard he fell over. This amused the baby so much that he squealed in delight and threw his head back in laughter. He lost his balance and fell over too. As I watched my two sweet munchkins rolling on the floor in a fit of joy, I couldn’t help but wonder how I could have been so upset only a few seconds earlier. I felt a warm sense of relief that my boys were seemingly unscarred and happy, despite my parenting fail.

They were now both laughing so hard they were turning red. The ridiculous scene before me was impossible to resist. I surrendered to the moment and I was now cracking up too. I sat on the floor with them and together the three of us laughed at absolutely nothing. I don’t know how long we sat there, but it was long enough to make my face and stomach hurt. Every time I heard my baby say, “I happy,” I could feel my energy stores filling and my world right itself. Hearing those two simple words made all the sleepless nights and emotional stress more than worth it. With all their pain and struggle, I had hoped and prayed for joy and happiness for my boys. Seeing this happen made my heart happy and put my tired soul at peace.

I was by no means going to be winning any parenting awards. But, my kids were happy, “happy, happy happy,” and that was more than I could ever wish for.

Choices

It’s 12:30 am and I can’t stop thinking about it. I am awake and sitting on your feet. The pressure seems to give you comfort and keep the cramps at bay. Every time I get up, you wake. So I’m sitting here, wondering if you’ll ever get relief, and wondering what choices you’ll make if you don’t.

Life is complicated and confusing. It sends mixed messages and tries to trick us. It can make us feel both blessed and cursed at the same time. You don’t fully understand what Dystonia means. But I do and I know it will do all of these things in your life. I am scared that I already see the impact of life’s harsh realities making you grasp for control of things you can’t have control over. It scares me and puts me on high alert as a mom. Right now you are in possibly one of the hardest periods you have ever been through. Your symptoms are making your life hard and the meds to help you are only making it worse. They give you convulsions, anaphylaxis or hives. My job as your mommy is to get you a diagnosis, seek the best doctors, and get you access to all available treatment. But right now, I’m really really scared. You see, my powers to do theses things are running out. This terrifies me. All I can do is love you, hold your hand, and sit on your feet in the middle of the night.

I’m sorry to tell you that you live in the real world in a way other kids your age do not. The world that you know can be harsh and daunting. It can honestly be flat out scary, even for grown ups. It’s unfair, unjust and relentless. You will have pain and frustration that others will never be able to understand. You will have no control over so much in life that it will be frustrating. But, you will still have choices over your situation, even when I do not. No matter how hard life gets, you will always have choices.

It is important you know that none of us have control over life’s circumstances. People get cancer and have car accidents. Children everyday are told they have autism and dyslexia. People have infertility and surprise unwanted pregnancies. People can loose everything in a fire or win everything in the lottery. Sometimes it feels like the cosmic forces are just spinning the wheel of destiny to make things happen. Please remember this when you wonder why this is happening to you. It isn’t. It’s happening to all of us. Every single person will feel singled out by life’s circumstance at some point. It’s part of the human experience.

What I hope you learn and what I hope I can teach you is that you have so much more control than you think you do. You can always control choice. Control over your life is a mindset, not a reality. No one has the kind of control you seek. All we can do is assess the situation we’ve been handed and make choices. So make choices…good choices. Choose to see the good. Choose compassion and hard work. Choose open mindedness and acceptance. Choose positivity and when things get tough choose to look around for perspective. Choose kindness and persistence. Choose happiness. Keep your chin up and learn how to dominate adversity by extracting the lessons from it. These are the choices that will make you a man, a father and a husband. These are the choices that determine how your life will be judged. When your life has passed its final day no one will care that you had Dystonia. They will care that you were a good person and that you made their life better for having been in it. I hope you choose to make a positive impact on the world.

Please know that I don’t care how old you get, I am mommy and I will be here beside you. I will help in anyway imaginable. But the day is coming when all I will be able to do is help. It is your life, not mine. I can’t make you happy and I can’t control the thoughts in your head. I can’t require you to have inner strength. I can’t control how you feel and how you treat people. These things are all on you. These are the choices that you can control. Never ever forget that. Life will throw some unexpected things at you. But you, and only you, will get to decide how to react.

Whatever happens, whatever choices you make, know this: I will always choose you and your brother. I will love you and I will support you, even beyond my last breath. So while the cosmic forces are busy making whatever plans they have for you, know that I’ll still be here. And know that I will still choose you.

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.