A Sense Of Time

I had a birthday recently. Getting older doesn’t generally bother me but, this time, my birthday felt different. This time, my birthday came with the realization that, realistically, I’m past the mid-point of my life. It made me feel like I was running out of time.

I’m running out of time to spend with my family.

I want to spend as much time as I can with my family. I want to look back on my life and not think that I worked too much, or was on the computer too much, or was on my phone too much. I want to look back on my life and know that I was a present father and husband. I want to know that I went to all the baseball games and performances and that my wife and I had date nights. I want to know that I was there when my family needed me.

There are so many obligations. There are so many distractions. There are so many demands on my time. My birthday made me wonder if I was making the right choices with how I spend my time.

I’m running out of time to prepare my son for the future.

Epilepsy through such a curveball at my son’s development, both intellectually and socially. It set him back a few years, and the gap is widening between him and his peers.

I worry that there will not be enough time to prepare my son for the world. I worry about what will happen to him after I am gone. But sometimes, I worry too much about preparing him for the future that I forget to let him be a kid. My birthday made me wonder if there was a way to help him develop and grow while still giving him the childhood he needs and deserves.

I’m running out of time to prepare the future for my son.

I also feel such a sense of responsibility to prepare the future for my son. We don’t know what his life will look like after we’re gone. We don’t know if the seizures will ever be under control. We don’t know if he’ll be able to support himself, or hold a job, or have a family.

I used to think only about having enough money for a comfortable retirement, but now I think about how I can best secure a comfortable future for my son. There is less time to do that now, and focusing on the future takes away from the present and spending time with my family. My birthday made me wonder if I was making the right choices now to protect my son in the future.

There is still time.

Although it originally felt like a sense of urgency, what my birthday actually gave me was a sense of time and the importance of it. It made me question my relationship with the future and the present and ask myself if I am spending my time in each way that I should. It made me realize that I often live at the extremes, ignoring either the present or the future, instead of finding the healthy balance between the two.

I’m not sure what I’ll do with the gift, but I’m hopeful that I will make the most of it. I suppose we’ll have to see what happens.

In time.

Enjoy yourself. It’s later than you think. ~Chinese proverb

Today Is Not Yesterday

I was recently in Colorado and had a chance to catch up with friends that I have known for more than ten years. We knew each other before I was married and before any of us had children. They’re also one of the few people who knew us before epilepsy.

We reminisced about the days when our lives were simpler and had much less responsibility. Adulting is hard. The weight of trying to focus on a career but still spend time with the kids, friends, and each other gets to be too much. We’re all exhausted and come home and want to do nothing but go to bed early.

Ten years ago, we thought it would all be possible. Ten years ago, we thought nothing would change. Now, we’re tired and depressed because we couldn’t maintain our lives from the past. So it made sense that we would be nostalgic for the time before we felt like we were failing.

But we’re not failing. As much as we thought we could, we weren’t supposed to keep things the same. We couldn’t just sprinkle on new stuff like kids or a more senior job. Our lives evolve and become something else. Today is not yesterday. It’s something new.

Instead of trying to fit my new life into the old one, I’ve tried to figure out what my life should look like now. Instead of focusing on what was important to me then, I’m trying to focus on what is important to me now and build my life around that.

But it’s hard to let go of the past, especially when there are days when the present seems impossible. Every seizure, every outburst, every time my son can’t remember what just happened…I just want to hop into a time machine and go back to before any of this happened.

I think that is what my brain is doing every time it compares today to yesterday. It’s trying to bring me back to the past. But it’s wasting energy. It’s swimming against the current instead of letting the current carry me forward. Worse, the past that it is trying to bring me back to isn’t real…it’s a distorted version made better by years of distance.

It’s not always easy to focus on the present. The present is hard. The present is real. But instead of using my energy to try to make my life what it was, I should be using it to make my life the best that it can be now. Because the present is where my life is. The present is where my family is. The present is where I am needed. The present is where I am supposed to be.

Nostalgia is a necessary thing, I believe, and a way for all of us to find peace in that which we have accomplished, or even failed to accomplish. At the same time, if nostalgia precipitates actions to return to that fabled, rosy-painted time, particularly in one who believes his life to be a failure, then it is an empty thing, doomed to produce nothing but frustration and an even greater sense of failure. ~R.A. Salvatore

Saying Goodbye To The Past

I sat down to write a post reflecting on 2017 but couldn’t decide where to begin. To say that 2017 was a big year is an understatement. Not just globally or politically, but personally, as well.

Even narrowing my focus to our lives, I’m not sure where to start. Our lives look completely different today than they did a year ago. We might as well be two different families, tied together by the common thread of a child and a family living with epilepsy.

We sold our first house back in Colorado and used the proceeds to buy and move into a place here in Philadelphia. Our Colorado house was the one we brought our son home to and it is where we made all our first memories with him. We were able to tour it one last time before we signed the paperwork, which provided some closure. But it was not without the pains of recognition of a life that might have been.

Around the same time, I started a new job. I’m still in the same company, but doing something completely different. In some ways, I’m going back to my roots by taking on a brand new challenge. It feels good to be excited to go to work again, and to feel like what I’m doing is making a difference. For a while, it felt my like half of my life was my job and half was my family, and both were spinning out of control. Things are only now starting to level off, but for the first time in a long time, I can take a breath.

We lost both our primary neurologist and our nanny. Our neurologist was there from the beginning. She knew my son and was our lighthouse during the stormier times. When she decided to continue her studies in epilepsy, we selfishly hoped she could do it at our hospital. But her path took her elsewhere. We miss her, but she left us in good hands.

Our nanny came into our lives when we needed her most. When my son was at his worst medically and behaviorally, she jumped in and rescued us. When she left, we naïvely thought we were in a stable enough place to go it alone. But the seizures and the side effects didn’t care what we thought, and they came back with old friends. The behavior issues we thought we had overcome were back and, before we knew it, they overwhelmed us. We finally asked for help, and we’re hopeful that we were blessed again with our new nanny.

This year, like every year since his diagnosis, we’ve adjusted my son’s medications. We stopped CBD and another medication because they weren’t working for him and started a new one. We’re ending the year with fewer seizures but more side effects and trying to strike a balance. He’s still on the ketogenic diet but at a lower ratio, and I’m hoping by this time next year he will be off it completely.

My son also started second grade, which is a testament to his resilience. But it has also shone a light on his limitations. Academically and socially, school is challenging for him. We’re continuing to adjust his education plan and our expectations, but it will be a long, uphill journey.

There isn’t a moment from last year that wasn’t touched by epilepsy. Every day we face the reality that our son has seizures, and needs medication, and faces challenges. But that doesn’t mean it has to define our year or our lives.

Somewhere in the middle of this, we went on a family vacation to Hawaii. It was an opportunity to get away from everything. The seizures followed us, but the experiences we had made them feel like a minor annoyance instead of the gorilla that we deal with daily. We visited family in Florida and Colorado. I ran a half-marathon, and we did an Inflatable 5K and became Spartans as a family.

In reflecting on last year, I want to say goodbye to it. I want to learn the lessons that it taught me, but I want to focus on the year ahead. It’s important to know where you have been to know where you are going. To repeat the things that brought you joy. To avoid the things that took away from your existence. To see the things you have survived so that you know you can survive them again. But it’s also important to be present in this moment and to look forward to the next.

I have great respect for the past. If you don’t know where you’ve come from, you don’t know where you’re going. I have respect for the past, but I’m a person of the moment. I’m here, and I do my best to be completely centered at the place I’m at, then I go forward to the next place. ~Maya Angelou

I wish you a very happy new year.

epilepsy dad feature saying goodbye to past