epilepsy dad

Category: lifestyle

  • Walking Through The Mud

    Walking Through The Mud

    I’ve been having a hard time finding the motivation to write lately. The thoughts in my head and the words on the page all seem the same as they have been for the past few months. The past few years.

    My son isn’t better. He’s still seizing. He’s still limited. He’s still heavily medicated. We’re still dealing with his school and trying to get him an education.

    Everything is harder than it should be.

    It feels like I’m walking through mud. Every step takes extra effort. Every step requires my full attention. I need to push my hands through the mud to search for my leg that is trapped in the muck. When I find it, I have to wrap my hands around it and pull it towards the surface. The mud resists, not wanting to let go. Even as my leg reaches the surface, the weight of the mud clinging to my legs and shoes threaten to pull it back down. It leaves me unbalanced. Even though it is only inches in front of where I started, I’m forced to push my foot back through the mud to the ground underneath. Even though I know it means that I will have to struggle for my next step, it’s the only way to find temporary stability. Otherwise, I risk falling over and being fully consumed.

    The struggle reveals itself everywhere.

    Parenting is harder.

    There are fewer right answers. There is more uncertainty. There is more acceptance of things that no parent of a 9-year old should have to accept.

    Marriage is harder.

    We’re in the same stressful, relentless situation watching our son struggle and seizure, but we have different perspectives and have different needs. We’re both trying to be there for our son but we go at different paces and we aren’t always within reach of one another.

    Work is harder.

    It’s hard to go to work after endless sleepless nights. It’s hard to concentrate on the work when the mind wants to worry about an upcoming surgery or the handful of seizures he had that morning.

    Friendship is harder because we’re so focused on the things we can’t afford to ignore that we ignore the relationships we need. Finances are harder because of the mounting costs of medical care, nanny care and tutoring. Diet and exercise are harder because we’re always so tired and pressed for time and it’s just easier to order something from the couch.

    But like many families in our situation, we continue to move forward. We keep taking labored steps towards a destination that we can’t see. Because where we are isn’t where we want to be. Because we hope we are heading in the right direction. Because there is no other choice.

    The mud is unforgiving, but in those moments of brief stability in between each step, I sometimes catch a glimpse of something wonderful. The struggle has given us gifts. I am a better parent to my son because I can’t take a moment for granted. I am a better partner and friend to my wife because we know what it is like to truly need and love another. And I have brought my whole self in to work and been surrounded by people who accept and care about me. We found understanding friends. And we have learned the value of trying to live the best life we can with what we have.

    It’s not always easy to see these gifts when I’m stuck in the mud. It’s difficult to be motivated when everything feels harder than it should be. But I’m doing my best to keep moving. I’m doing my best to learn and to grow and to be a good father, and husband, and friend. Because, really, there is no other choice.

    “The lotus flower blooms most beautifully from the deepest and thickest mud.” ~Buddhist Proverb

  • Escaping From Reality

    Escaping From Reality

    This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

    When I was young, I was always looking to escape. I could read a book and see the scenery described on the page around me. I would read Spider-Man comic books and imagine myself, the awkward outcast, swinging from web to web through my neighborhood. And I would get so immersed in a video game that I wouldn’t notice that I was hungry or tired or that the sun was starting to come up and that I had to get ready for school.

    My ability for my imagination to transform the world around me helped me escape from the inescapable situation that was my complicated childhood.

    My son has that same gift. When we play hockey in his room, I think he sees a sheet of ice, feels the cold air around him and hears the support from his teammates on the bench and the fans in the stands. When we play Avengers, I think he sees our apartment as the city in smoldering ruins and himself as Captain America defending the citizens against whichever villain he has me portraying.

    I’m grateful he has that. My son’s childhood is differently complicated than mine was. Where mine was lacking, my wife and I try to provide for my son in abundance. But the challenges that he is facing because of his epilepsy and the myriad of complications that come with his diagnosis is not something we can remedy.

    In his imagination, those complications don’t exist. A seizure doesn’t prevent the game-winning goal or take down The First Avenger. The side effects of medication don’t slow down the action or the hero’s mind. Those are things for the real world. Those are things to escape from.

    As someone who needed a place to go myself, I’m empathetic and want to encourage the behavior. As he gets older, he can evolve his ability to craft a world to wrap himself in to shape the real world around him. That world is likely to be sometimes hard, sometimes cruel, and sometimes dark. But imagination and creativity have a way of shining a light into the darkness and illuminating the way.

    However he chooses to use his gift as he grows up and whatever form it takes, I hope he dares to shine that light on the world. Because I’ve watched it grow inside of him and have seen how it already impacts those around him. And it’s glorious.

    NEXT UP: Be sure to check out the next post tomorrow by Glynn Partington at Living Well With Epilepsy for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

    And don’t miss your chance to connect with bloggers on the #LivingWellChat on December 6 at Noon ET.

  • Around The World

    Around The World

    I’ve always loved to travel. I lived in Germany when I was in the Army and I traveled to Japan and China in my single days. My wife and I honeymooned in Fiji and Australia. Almost as soon as we stepped foot back on American soil, I began looking for jobs in Sydney and Melbourne.

    When my son was younger, he took French classes and we planned to start with Montreal before exploring France and then, ultimately, starting a second career working in kitchens across Europe as a chef.

    Our move from Colorado to Philadelphia was part of that adventure. We left the relative safety of the whitewashed suburbs and moved to a diverse, gritty city and everything that brings with it. But as soon as we landed, my son started having seizures.

    In a way, I’m grateful for the timing because we are within ten minutes of one of the top children’s hospitals in the country. The people in that building saved my son’s life and continue to care for him. But now I feel tethered to that place. If we go too far away for too long, his seizures snap us back, sometimes violently, into their care.

    The daily seizures, the weekly doctor and therapy appointments, and the monthly medication refills make it impractical to look too far outside of our little bubble in the city. There isn’t a way to accommodate my son’s needs while chasing the dream of a life unbounded.

    But I’m not resentful. As much as that might have been the life I wanted, this is the life I have. I wouldn’t trade that life for the moments I’ve had and the lessons I’ve learned in this one.

    The dream of living in another part of the world seems so far away. But the reality is that we are exactly where we need to be.

  • The More Things Stay The Same

    The More Things Stay The Same

    The only thing that is constant is change. ~Heraclitus of Ephesus

    In many ways, our life is constantly changing. We meet new people and have new experiences. There are new projects at work. The changing season is bringing cooler temperatures and color to the trees. Things look different than they did a few months ago.

    My son started third grade and has a new teacher, a new aide, and is meeting new kids in his class. He’s in a different place than he was this time last year. He’s a year older. He’s on different medications with different benefits and side effects.

    The more things change, the more they stay the same. ~Jean-Baptiste Alphonse Karr

    But even with so many things changing, the world looks very much the same.

    In spite of the new medications, my son is still seizing. He still labors physically and mentally through the impact of those seizures and the many medications he takes to try to control them.

    In spite of the new grade, teacher and aide, the school is still not set up for him to succeed. He still cannot physically or mentally make it through the day. We’re having to explain and defend ourselves again this year, just like we do every year.

    In many ways, my son’s life changes so much that it’s unpredictable. But after a while, even that becomes expected. It becomes the same. A change for us would be stability. A change for us would be knowing what to expect from one moment to the next.

    But there is no way to control what that looks like. We could find ourselves stuck at the bottom instead of at the top. He could always be seizing. He could always be at the mercy of the cruel side effects of the medicine that keeps his brain from losing control. So, at least for today, I welcome change. Because, as long as things keep changing, there is always hope that things will change for the better.

  • Questions Without Answers

    Questions Without Answers

    Like many fathers, when my son was born, I had a list of things that I wanted to teach him. I wanted to be the sage, the guru that imparted to him wisdom drawn from my life experiences. I looked forward to the opportunity of leaving him feeling like his old man was a fountain of knowledge for all things. I longed for the bond that the transfer of knowledge would create between us.

    How do I tie my shoes?

    How do I throw a ball?

    How do I tell a joke?

    How do I ride a bike?

    How do I catch a fish?

    How do I program a computer?

    How do I ask a girl out on a date?

    How do I drive a car?

    But after he was diagnosed with epilepsy, I began to fear the questions that I knew he would eventually ask. I went from wanting to be the person he went to for answers to the person afraid to disappoint him when he asked questions for which I didn’t have an answer.

    Why is this happening?

    Will it ever go away?

    How do I live with epilepsy?

    These questions may be the biggest questions that he will ever ask because they are the biggest questions that I have ever asked. I’m also on a search for answers, but I don’t think I’ll have them before he poses the questions to me because not every question has an answer. We may never know why this is happening to him, but it is clear that this is our path. We may never know if it will go away, but we know that is here now. And we may not know how to live with epilepsy down the road, but we are doing the best we can today.

    Rarely does life go according to plan, but we are facing a life that can’t be planned. How my son is each morning, depending on seizures and side effects, determines what we can expect from the day ahead. It’s impossible to predict anything in the future when you can’t predict the next day.

    In the beginning, this uncertainty shut us down. I’m not sure it could have gone differently when my son was first diagnosed with epilepsy because we were fighting for his life. But even after he was stable, we were consumed with finding answers. After four years, it has become clear that there aren’t going to be any. But instead of letting that pull us back into hopelessness, we’re trying to allow it fill us with gratitude for what we do have. Because we have today, and for a time we didn’t think that we would even have that.

    I went into fatherhood expecting to show my son the things he needed to know. But maybe the most important thing I can show him is how to live without having all the answers.