Category: parenting

  • 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

  • What Can’t Be Undone

    What Can’t Be Undone

    The suggestion to implant a VNS was made by our neurologist years ago. But there were still options to try so we held off. Unfortunately, CBD was not our miracle and other medications didn’t help. The seizures kept coming and we ran out of things to try.

    When our neurologist brought up the VNS again, I felt the overwhelming weight of the decision squeezing the air out of me. If it even has the potential to improve his quality of life, she asked, shouldn’t we try it? Of course, she was right, but that knowledge didn’t help me breathe.

    Neither did having an amazing surgeon in one of the best children’s hospitals in the country. Neither did the love and support of friends who would try to reassure me about how safe surgery and anesthesia are. Neither did my wife who held everything together when I couldn’t.

    It wasn’t the mechanics of the surgery that occupied my thoughts. It was the idea of cutting into my little boy. It was the permanence of it all. It was the thing that can’t be undone.

    We can wean off a medication that doesn’t work. We can stop the ketogenic diet. If years from now his seizures miraculously go away, we could stop everything and pretend that all the hard things about his childhood didn’t happen. There would be no signs, no trace. I could live in denial about how traumatized I was by this experience.

    But the surgery forced me to confront the fact that these things aren’t going away. That the magical, unburdened life I wanted for my son is not going to materialize. That I can’t fix this or make it go away. That this is real, and that the future for him will include challenges brought on by his condition. That I’ve somehow failed him.

    From the time the decision was made to the time they wheeled him away hopped up on “giggle juice”, I pushed my feelings down. I was practical but emotionless. I showed up for the appointments and answered the questions as he was prepped for surgery, but I wasn’t really there. I couldn’t be. I had to push it all down just to appear strong enough to make it through.

    Even after his surgery was over, I had a hard time being present and acknowledging what had happened. I had a hard time looking at his scars. They were bigger than I thought they would be. Instead of small ones hidden by clothes, they’re long and visible. I looked away. I caught a glimpse of the device itself, raised under the skin and I looked away. It’s more than just being squeamish, it’s a spotlight of reality shining into my eyes and blinding me.

    I worry that he’ll think I can’t look at him. I worry that he’ll feel like he did something wrong or that there is something wrong with him that is causing this reaction from me. I’m worried that I can’t get over my own hang-ups and be there for him when he needs me.

    I tried to explain to him the feelings I was having but he didn’t understand. I didn’t, either, until I started to unpack them. But I still don’t know what to do with them. I want my acceptance to turn the spotlight that was blinding me into a beacon that brings me to him. But instead, it feels like the light has turned off. It’s not repelling me but it’s also not drawing me in. Instead, I’m left in the darkness trying to find my way.

    But I can hear his voice. And I hear my wife’s voice. They’re calling me. And so I’m pushing through the blackness, the emptiness, to find my way back to them. It’s scary and impossibly hard. But I can hear them and they need me. I can hear them, and I don’t feel alone.

    I’m on my way.

  • To My Son On His 9th Birthday

    To My Son On His 9th Birthday

    Dearest son,

    When I had the idea to write you this letter, I was worried that I was going to fill it with talk of epilepsy and how hard things are for you instead of words that celebrate how far you’ve come in your journey. Because even though it defines so much of our day-to-day, you are so much more than epilepsy. I want to celebrate how brave you are and how having you has changed me into a better man and a better father.

    The world looked very different for me when I was your age. Grandpa wasn’t around yet, so it was just me, Grandma, and your aunt who passed away a few years ago. Things were hard and I learned to do things for myself but I felt very much alone. I carried that with me through my entire life until we had you. The idea of you having to go through life alone filled me with an unbearable sadness that caused me to finally see that there was a different way.

    Knowing that you look to me for behaviors to model has made me focus on and work on demonstrating the behaviors that I most wish for you and, in turn, I’m exhibiting those behaviors for myself. Demonstrating things like self-love and being confident and communicating what is inside has allowed me to have a more

    And you continue to show me the way. I used to think that I had to model every behavior I wanted to instill in you but, many times, it’s the other way around. I’m so proud of how hard you work and how much joy you bring to the people around you and I want to do the same. I love how, in spite of everything, you remain funny and curious, and so alive. It puts my own struggles into perspective and helps me be present and enjoy my life even when times are tough. And you have a way of making me and the people around you know they are special to you, which is something I have rarely done but am inspired to change.

    The biggest lesson you taught me is to stop letting my own baggage twist the amazing, creative, loving person you are becoming. The beauty of it all is that you didn’t have to do anything other than be yourself. The worst mistake I could ever make would be to help you build the same walls that I did. Instead, you are helping me take mine down. I don’t know how to receive that gift, but I’m trying.

    Nine years ago, you changed my life forever and you continue to do so every day.

    I hope your next trip around the sun brings peace and joy and more amazing experiences. But whatever lies ahead, I am luckily, gratefully here with you. Really here, thanks to you.

    Happy birthday, buddy.

    Love,

    Dad.

  • I Don’t Have The Answers

    I Don’t Have The Answers

    Every day, I wake up, head to the computer, and write about my life as the father of an amazing child who has epilepsy. I’ve been doing it for more than three years. But I don’t feel like I have any more answers now than I did when I started.

    When I write, it’s from the perspective of a father trying to work out his thoughts and emotions on the page. I am not an expert. Wisdom comes from hindsight but we’re still in the thick of it. And every day I realize more and more of how much I don’t know.

    I don’t know how to minimize his pharmaceutical side effects. I don’t know how long he’ll be on the ketogenic diet. I don’t know whether there is something out there we haven’t tried. I don’t know what new medicine or technology is on the horizon that will help. I don’t know how to prepare him for the world with epilepsy. I don’t know what to do to get my son to stop seizing. I don’t know if he ever will.

    An expert would have answers. An expert would know what to do. An expert would speak from the perspective of someone who has been through it. They know how the story ends or how the tension resolves. I don’t have any of those things.

    But here is what I do know. I know that I love my son more than anything. I know my wife and I are doing everything we can to keep him whole and to give him the best life that we can. I know that I need to be the best man and father for him. I know we need to take each moment as it comes and make the best choice we can with the information that we have. I know we have this moment right now, and I know that nothing else is guaranteed.

  • 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.