Category: parenting

  • It’s Time To Stand Up

    It’s Time To Stand Up

    It’s been a while since I’ve sat in front of the computer to write. It’s also been a while since I’ve felt the need to engage with the outside world. But, to be honest, who would want to engage with the world in the state that it is in?

    A powerful country invaded another in an ongoing war. There’s been a string of mass shootings, including another at an elementary school. The highest court in our country is slowly stripping away the rights of its people while, at the same time, making it easier to carry weapons of war capable of tearing through the children in that elementary school…children the same age as my son.

    The outside world is a shit show.

    It’s only going to get worse. Our country is reverting to a time when women and people of color didn’t have rights. Every group that clawed and scraped to get recognized and to finally see some protection or equality or benefit is going to have it taken away from them.

    Our job as parents is to love our children, protect them, and prepare them to go out into the world. We try to help them understand what is happening and make sense of it. But that is hard to do when we don’t understand it ourselves.

    That’s not entirely true. I understand it. There are people with money and power who are trying to transform the world in a way that gives them more money and more power. They’re dehumanizing the “other” so they can take away their identities and their ability to prevent what is happening, making it harder for them to vote. They’re rigging the game to create a world full of people who look just like them.

    My son doesn’t quite look like them, and the thought that keeps going through my head is, “how long before they take away his rights?” Even in the gun debate, the side that wants to arm every person with an assault weapon says that the problem isn’t guns, the problem is mental health. They’re hand waving to distract us away from the carnage that these weapons do by pointing to a different villain and pretending that if we can defeat it that we won’t need to do anything about guns. The reality is that we do have a mental health crisis stemming from the way we talk about mental health, the stigma associated with it, and the lack of affordable, quality resources that we offer. And we have a gun problem. But the overlap between them is so small that solving only one of them won’t have a meaningful impact on the other. We need to address both.

    My fear with the holding up mental health as the scapegoat is that, rather than investing in better health care and addressing the problem, we’re going to start taking away the rights of people with mental health issues. Taking something away is cheaper and easier than committing resources to address the problem. They’ll start with something easy like taking away guns from those with a diagnosed mental health issue, but its a slippery slope to taking away other rights, too, that eventually will include the right to vote. And it will be the people in charge who decide where that line is between “normal” and what constitutes a mental health issue that poses a threat. (Spoiler: we all have mental health issues to some degree…that is being human and IS “normal”).

    I am not one who normally shares his opinion on these matters. My nature is to avoid conflict and to stay invisible stemming from trauma in my past. These issues are upsetting and, while I have an opinion about them, the impact of the issues is not immediately relevant to me. No one in my circle needs an abortion. No one in my circle was a victim of gun violence. At least, that’s the story that I tell myself so that I feel justified in staying silent. I layer on all the possible consequences of sharing an opinion…conflict, losing relationships, all the way to physical harm to me or my family. Those fears have kept me safe. But they’ve also kept me from being seen.

    There is another problem with staying silent.

    This is a poem with a complicated history by Martin Niemöller called First They Came written after World War II:

    First they came for the Communists
    And I did not speak out
    Because I was not a Communist
    Then they came for the Socialists
    And I did not speak out
    Because I was not a Socialist
    Then they came for the trade unionists
    And I did not speak out
    Because I was not a trade unionist
    Then they came for the Jews
    And I did not speak out
    Because I was not a Jew
    Then they came for me
    And there was no one left
    To speak out for me

    First They Came by Martin Niemöller, 1946

    I’ve been thinking about that poem a lot lately. Different groups (for now) are being targeted, but history is repeating itself. The people in charge are systematically targeting the “other” under the guise of nationalism, convincing segments of the population that the “other” is evil and attacking “true” Americans. They spew lies about scarcity and how the “other” is stealing from them and pretend the current landscape gives every group a fair shot at opportunities. They believe themselves to be the victims, ignoring the hundreds of years of oppression and persecution, and so much so that they don’t want “that” history taught in schools.

    Those in charge have also convinced broad segments of the population that they are victims, too. They’ve activated these groups to fight for their cause by making them believe that they are on the same side as the leaders of the movement. The irony is that these groups don’t realize that, while they might look like the ruling class, they’re an “other,” too. But our lack of critical thinking skills, our willingness to be a victim and to need someone to blame, and our lack of empathy blind us to this manipulation and cause us to focus only on our differences and need to “win” by making the “other” lose.

    These groups mobilize and attack the source of their perceived struggles; usually the same people the ruling class has oppressed for generations. They continue the oppression because, somehow, giving rights and protections and recognition to the “other” takes away from the rights of the majority. Because, for some reason, it’s impossible to be equal. Rather than lifting the “other” to be on the same level, they believe that raising the “other” lowers the status and privilege that the majority has enjoyed throughout history.

    The people that are being attacked may try to speak up, to organize and rally and raise awareness of what is happening. Some just take it because that’s how it has been for them all along, anyway.

    Then, there are the rest of us, not directly affected so we stay small and silent and hope that they don’t eventually come for us or someone we love. (Spoiler: it’s only a matter of time.)

    The frustrating thing is that if you watch the news, you’re led to believe that these opinions come from the majority. They don’t. If you asked every person whether they think it’s a good idea to continue to allow assault weapons with extended clips to be handed to civilians, I’d bet the answer would be “of course not.” If you asked every person whether the woman should have the right to decide for herself what to do with her body, the majority would say “yes.” But we don’t ask everyone, and the majority don’t offer their opinion or don’t think it matters. Hence, the people with the money and the power manipulate the system to force their view on the rest of us until it becomes our reality. But, again, it doesn’t affect us, so we stay silent.

    Staying silent is a choice, and I think about how my choice to stay silent affects my son. Not just for the inevitability that he will be impacted by these changes, but also the example that I am setting for him. I worry about him a lot. I worry about him fitting in. I worry about him being hurt because of his differences. For me, the solution when I was young was to be invisible, but I want so much more for him. I want him to love himself, to be proud of who he is, and to surround himself with people who feel the same. I want him to feel confident and brave enough to show his full self, to believe in things, and to be willing to stand up for those beliefs.

    But if I want him to do those things, I need to do them myself. Not just to model the behavior for him, but also to be seen myself. I don’t want to look back on my life and simply have survived it, I want it to have meant something. That’s not to say that I have to have an opinion about everything or always be standing up for something. But if I stay silent and stand for nothing other than myself, then I will have been part of the problem, and my son will likely repeat the pattern.

    If you’re reading this blog, you probably have someone in your life who is considered an “other.” You might be benefiting from assistance to give that person a better quality of life or an opportunity to thrive in this world in spite of having a disadvantage. You are probably also empathetic because you’ve seen how hard life can be and the struggle that comes from being different. I know it feels safer to stay safe, to stay invisible, and to not speak up. But we’re all going to have to speak up, either because we find the courage to stand up now when so many are under attack, or because eventually we’ll need to because they finally came for us.

    This post is my choice to stand up now.

     

  • Slow Down

    Slow Down

    I’m standing with my left foot on the edge of the baseline. I bounce the bright yellow tennis ball a few times with my left hand while my right hand dips low, holding my racquet. I’m ready, so I steady the tennis ball before tossing it high into the air slightly in front of me. I rock backward on my heel, then forward, lifting my racquet to meet the ball’s descent. Contact.

    “No, no, no,” my instructor says through his thick French accent. He points upward at the ball that has soared high enough to qualify as a space flight, and that still hasn’t completed reentry.

    “Too fast. Watch.”

    He takes my place on the baseline and tosses a ball into the air. His movement is controlled and intentional. The racquet methodically completes its arc and makes contact with the ball, sending it across the net where it lands in front of the service line.

    “This is you.”

    Again, he tosses a ball into the air. But instead of the slow, intentional movement, the racquet disappears into a blur of speed and sends the ball crashing into the fence on the far side of the court.

    “When you go slow, you are present…you can control. When you go fast, you can’t.”

    “Story of my life, ” I think to myself.

    I’ve never been good at slowing down. I’m nervous and anxious and always feel like there is something I should be doing. I’ve created lists upon unending lists of the things that I need to do. Not “want” to do. Need. Must. Obligated to. Compelled to.

    But there is only so much time, so I race from one thing to the next. Sometimes, I don’t quite complete the task that I’m doing or do it as well as I could have, but, usually, I don’t look back to check. Checking slows me down. And there is still so much to do.

    Often, I don’t remember details because, as it turns out, I’m not there at all. And that, I realize, is part of the problem, especially when there are other people involved. What is the point of doing something with my wife and my son if the goal is to do it so that I can move on to the next thing? I’m not there with them if I can’t slow down enough to be present with them.

    None of us knows how much time we have in this world. With my son’s condition, that is a fact of which I am too well aware. It should serve as a reminder that it is the quality of the time we spend together that matters more than the quantity of the things we do. But, as my wife has pointed out too many times lately, I haven’t always been showing up that way. I know she’s right.

    Awareness is the first step of change. Acceptance is the second. I’m working on that part. I know it’s time to slow down.

    The instructor backs away, and I retake my place on the baseline. I bounce the ball a few times before tossing it into the air. I raise my racket slowly towards the ball. Deliberately. Intentionally. I can feel that my arm is extended. I can feel it when the racquet makes contact with the ball. I watch as the ball flies over the net and lands in the box. It’s a different experience. And it’s the same type of experience I want more of with the people around me, too.

  • Stepping Up To The Plate

    Stepping Up To The Plate

    There is a screen saver on our television that lets us use our own photos. One of the pictures we used that has come up in rotation is from one of my son’s baseball games. He’s standing at the plate, adjusting his helmet with his left hand while his bat hangs down from his right.

    It feels like that picture was taken in another life so long ago. But it’s only been a few years. “Only,” as if that is an insignificant amount of time.

    He said the other day that he misses baseball. I miss him having baseball. I miss him playing a game that he loves, surrounded by other kids being kids. I miss the look of his “game face” or the excitement and expression on his face after he got a hit. I miss his laugh as he and the other kids ran around the bases at the end of the game and created a pile-up as they slid into home plate. I miss retelling the best moments from the game in the car on the way home.

    We had signed him up for this season, hoping to introduce a bit of normalcy back into his life. But because of an abundance of caution for his health and other changes on our horizon, we decided to pull him.

    I still haven’t told him.

    Seeing that picture on the screen is my reminder, not just to have the hard conversation but also about how isolated he is. Baseball was one of the only places where he showed up as an equal. That feeling and those bonds that he made on the field were the same as the other kids. But the other kids created bonds in school, as well, that my son missed out on because of his long absences over the years.

    He plays Fortnite with a few of his former classmates, but I can hear the conversations sometimes, and, with a few exceptions, he is treated as an outsider. Many of the kids who developed those classroom bonds still go to school together or play sports together. They have the real-world bond that carried through to the online world. It’s hard to compete with that when the only interactions that you have are virtual ones.

    It’s the same reason my son is struggling with a virtual school. In addition to the difficulty many of us have to stare at a screen all day and the mind-numbing burden of an all-day video call, he’s getting zero in-person social interactions. He’s not making friends, even though he receives online social skill classes because it’s hard to build those relationships and connections in a meaningful way when the person on the other end is only a face on a screen or, worse, one of the dozens of faces on a screen.

    But even though the other kids have stronger bonds and sometimes exclude him, he still sends that invite to play online with his friends. Despite feeling like an outsider and that sting that comes from not getting picked, I’ve seen my son be so kind and generous and play the game modes that his friends want to play. I’ve also seen him put his own needs out there and ask to play the games he wants to play.

    He still wakes up every school day and sits in front of that screen, and he tries to follow along. He fights through his exhaustion and attention issues to participate in the class as best as possible. In both cases, despite the challenges, he shows up with an open heart and a willingness to learn, be included and connect. Like the picture on our television, every day, he steps up to the plate.

    And I couldn’t be more proud.

  • Trapped

    Trapped

    The pandemic has us feeling trapped.

    We’re trapped in isolation. It’s been almost a year now since we’ve been able to hang out in person with our friends. It’s been almost a year since I’ve stepped into the office and looked across a conference table at a colleague. It’s been almost a year since my wife and I have sat down in a restaurant or gone on a proper date.

    We’re trapped in the city. We’ve stayed downtown because we spent so much time in the nearby hospital and because I work a few blocks away, so it saved us time and money. But our small condo feels smaller since our son and family have grown with the addition of a (not-small) seizure dog. We’ve been thinking about finding a place with a little more space. However, the exodus of people leaving the city has home inflated prices in the suburbs. Few people want to move into the city during the pandemic and no one knows how much cities will bounce back if more people are working remotely at the end of this. As a result, we can’t go anywhere.

    We’re trapped in our schools and our jobs and our patterns. We’re trapped by our trauma. We’re trapped by our pasts. We’re trapped by our circumstances. We’re trapped in our lives.

    The sense of being trapped is suffocating. The air is slowly escaping our lives and leaving us struggling for breath.

    We occasionally find a way to break free. We escaped to Maine last year in a desperate attempt to catch our breaths. But, ultimately, we were pulled back into the real world and felt the trap closing tighter.

    As much as I would like to believe that this sensation was caused by the pandemic, the reality is that we were trapped before the world started getting sick. We were already isolating ourselves. We had already let the difficulties we were facing take away our freedom, our connections, and our air. This was our pattern before it became everyone else’s pattern, too.

    The question, then, is when the world opens back up, what will we do? Have we learned anything during this time of forced confinement that will cause us to do anything differently? Will we have more energy to do anything differently? Or will we continue on, doing what we did before and during the pandemic? Will we choose to stay trapped?

    There is a quote that says, “Water, when trapped, makes a new path.”

    I suppose I should try to be more like water.

    But it takes so much physical and emotional energy to do something different. It takes energy to change mindsets. It takes energy to pretend, and to move forward. Trapped water builds pressure and it uses that energy to push through obstacles. Pushing through our obstacles and making a new path takes energy that, most days, we don’t have.

    I guess I just imagined that it would be different. I imagined it would be easier. But it’s not.

    Maybe that’s okay. Maybe that’s part of the journey. Maybe it’s enough that we’re making it through right now. Maybe it’s enough that we’re still here, still living, still trying, and still together. I’m so grateful for that.

  • Our Story – National Epilepsy Awareness Month

    Our Story – National Epilepsy Awareness Month

    Recently I attended a class where I needed to give a 4-minute talk. Inspired by National Epilepsy Awareness Month, I took the opportunity to share our story with my classmates.


    A little over 6 years ago, my company offered me a new position that would move my family from Colorado to Philadelphia. I had been to Philadelphia for work many times, but my family’s first visit was shortly before our move. We flew there together and my wife and son explored the city and hunted for houses while I worked.

    One night, after a long day of house hunting, we went to an arcade to play games and have dinner. My son had a fascination with Guitar Hero and spent a good chunk of the night shredding the plastic guitar to AC/DC.

    When we were done, we headed down to the exit to wait for a taxi. I remember there was a thunderstorm, and we stayed inside the lobby watching the rain and lightning. Before it arrived, my wife and I both noticed that something was happening with our son. He stopped responding, and his body had stiffened. At first, we thought he was joking but, when he wouldn’t come around, we knew something was wrong. I held my son as my wife called 911. Instead of a taxi, we left the arcade in an ambulance and headed to the hospital.

    Finding yourself in a strange city, late at night in the hospital waiting for the doctor to tell you what happened to your toddler is an experience that I wouldn’t wish on anyone. The rooms were full so my son was on a bed in the hallway as we watched the chaotic energy of an urban hospital and the activity around us. Eventually, the doctor confirmed what the paramedics had told us what likely had happened, and that was that my son had a seizure. Because it was his first one and because he was slowly recovering, they sent us home.

    A few days later, we left Philadelphia to go back to Colorado. There were no other signs or lingering effects from his seizure, so life went back to normal. We packed up our house and headed east.

    Once we moved, we spent time exploring our new home. Eventually, we stopped worrying about epilepsy and seizures. But epilepsy wasn’t done with us. A few months later, my wife and son were boarding a plane to visit friends in California when my son had his second seizure. Fortunately, the flight crew was able to get my family off the plane and they found themselves in another ambulance, this time headed to the children’s hospital.

    The second seizure came with an official epilepsy diagnosis. At the time, I didn’t really know what epilepsy was other than what I had seen in the movies. Even though seizures and epilepsy are common, that is true for many people, so I want to share some information with you.

    First, what is epilepsy? It’s a seizure disorder characterized by uncontrolled seizures.

    More than 3 million people in the United States have epilepsy. 1 in 26 people will develop epilepsy in their life. 1 in 3 people lives with seizures that aren’t controlled by treatment. Sometimes, there is an identifiable reason why someone has seizures, but 6 out of 10 people with epilepsy don’t know the cause.

    Unfortunately for my son, the last two bullets apply to him. We have not been able to figure out what causes his seizures and, even though we’ve tried different medicine, put him on a special diet, and had a device called a VNS implanted, he still has seizures almost every day.

    The reason I wanted to use my time today to talk about epilepsy, in addition to it being such an important part of my life and my family, is because November is also Epilepsy Awareness Month. If you didn’t know anything about epilepsy before today, I hope I gave you a glimpse at what it is. And if you didn’t know anyone before today who was affected by epilepsy, now you do.

    While epilepsy is a big part of our life, I wanted to end my talk on a positive note. While my son does still has seizures, he is also a very happy, energetic 11-year old. He loves hockey and baseball, and last year he was selected to the All Star team for his baseball league. This picture is one of my favorites, and that’s him sliding into home plate underneath the tag of the catcher. He scored and wound up receiving the game ball as the game MVP.

    Thank you for listening to our story, and if you have any questions or want to learn more about epilepsy, please reach out!


    Resources:

    Epilepsy Foundation – National Epilepsy Awareness Month

    Epilepsy Foundation and Epilepsy Foundation of Eastern Pennsylvania

    Epilepsy Dad