Tag: future

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

April 9, 2019
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.

September 25, 2018
Planning For The Short Term

“Life is what happens while you are busy making other plans” ~Allen Saunders

At the end of the school year, we finally received an Individualized Education Plan (IEP) for my son. An IEP defines individualized educational goals for children determined to have a disability and any accommodations that need to be made to help achieve those goals. Before the summer break, we sat with our lawyer across the table from the school district to talk about the specific details of my son’s goals and accommodations for the third grade.

Even though the start of the school year was only two months away, we knew that whatever we put into the plan was likely to change before the first day of third grade. We knew because it always does. We’ve tried different schedules and approaches before we had the IEP. They might work for a few weeks until we change a medication or until his fatigue builds up so much that he can’t function and we need to adjust.

The same goes for other aspects of his life. The constant variance of his seizure burden and his mental and physical stamina means that we can rarely look too far into the future. Sometimes, we plan for a week or a few weeks in advance. We might plan a vacation a few months away because we know that, wherever we are, we can make it work for a short period of time. But we’ve learned that putting things in the calendar is more of a suggestion or a placeholder than it is a commitment.

Most of our plans are short-term plans. We look ahead at the next day or the next week and try to plan our lives. My son’s health is unpredictable. His physical health. His mental state. It constantly changes. The decisions we make any given day, like skipping a nap, can have consequences that change any plans that we’ve had. Extra seizures one morning. An accumulation of exhaustion that we didn’t see building up. We’re adapting more than we’re predicting by adjusting our plan moment to moment based on where he is physically and mentally.

We rarely look beyond that because we have no idea what the future has in store for my son. We still contribute to an education savings account for my son because I don’t want to consider the possibility that he won’t need it. We’ve put off estate and custody discussions because these conversations are impossible and because planning that far out seems futile. Things change day-to-day and month to month so planning for years away seems impossible.

“Life is what happens while you are busy making other plans.” The Allen Saunders quote is often attributed to John Lennon because he popularized it in Beautiful Boy (Darling Boy).

Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we’ll both just have to be patient
‘Cause it’s a long way to go
A hard row to hoe
Yes, it’s a long way to go
But in the meantime
Before you cross the street
Take my hand
Life is what happens to you while you’re busy making other plans

I know the future is going to come whether we want it to or not and whether we know what it has in store for us or not. Maybe I’m trying to give him the best life I can in the present. Maybe we’re just trying to focus on living our lives and taking each unpredictable day as it comes. Maybe I focus on the short-term because I’m too afraid to think about the long-term and what that the doctors think might be in store for him.

We have a long way to go, and it’s a hard row to hoe. But in the meantime, before you cross the street, take my hand.

July 31, 2018
A Different Life

There have been times when I have wondered how my family’s life would be different if my son didn’t have epilepsy. There have been times when I have wondered what it would be like even if his seizures were under control, or if he didn’t have the side effects that he does from his medications. But a television show forced me to confront a much tougher question.

I’m a big fan of the show Black Mirror, and I found a similar show on Amazon Prime called Electric Dreams, based on short stories from Phillip K. Dick. In an episode called The Commuter, the protagonist is a father who has a son prone to violent outbursts. As the story develops, the father is offered the chance for a different life, an easier life, in which his son was never born.

The Commuter, Philip K. Dick’s Electric Dreams, Amazon

As I watched the episode, I thought about turning it off. The story hit too close to home, because I’ve also thought about what my son’s future will be like if we can’t get his seizures under control. I’ve wondered what his future will be like if his emotional and behavioral issues weren’t able to be controlled. And I was ashamed that, when things were at their worst, I also wondered where my life would be if my son wasn’t born.

Even writing it down, I feel sick. I’m looking at those words and I’m not sure where to go with them. I want to spin it to be about my son because this wasn’t the life that I dreamed for him. But, while that is part of it, there is also a selfish component. When we were having to hold him to control his angry, dangerous outbursts, my thoughts went to darker places. I thought about having to do that for the rest of my life. I thought about someday having to put him in an institution or visit him in jail. I dreaded the phone call where someone on the other end tells me something that my son has done that we can’t excuse or take back. But those thoughts weren’t about what his life would look like. They were about what my life would look like.

Our life is hard sometimes. It’s also amazing, and we’re very fortunate in so many ways. But it’s also impossibly hard. It’s hard to watch my son struggle every day. It’s hard to feel like everything is always out of our control. It’s hard to keep having conversations about what to try next because everything we’ve already tried didn’t work. It’s hard to hold on to hope for a future that is different than what is in front of us. It’s hard to not let fear take over and seek out alternative paths.

But having the thought isn’t the same as wanting it to be true. If I were given the choice, I would choose this life every time. I would choose my son every time, because being his father is one of the best things about my life. Being his father has made me a better person and a better man. Being his father has opened me up in ways where I can have these impossible thoughts and come out the other side knowing that I am where I am supposed to be. And every day, when I see his face, I also know that I am where I want to be.

May 8, 2018
It Can Always Get Worse

We finally got a second opinion. Not because we didn’t think the doctors at our hospital were doing everything they could. But because that’s what responsible parents do.

I wasn’t expecting a miracle. I wasn’t expecting someone to tell us we missed something that would cure my son’s epilepsy. We were looking for another perspective or treatment that we missed. We hoped that someone out there had another case like ours and could provide some insight. We wanted a little more hope. We wanted a little more of something to hold on to.

The hospital sent the report to my wife. That night, she tried to tell me what it said, but I didn’t let it in. I nodded as she spoke the words but I put my guard up and those words bounced off me and fell to the floor. For the rest of the night, I stepped over them as I distracted myself with other things until it was time to go to bed. But I didn’t sleep.

The next day, I started to feel the effects of the night before. Not only the report but how I reacted. How I tried to ignore it to make it less real. How not facing it doesn’t make it go away. And how I left my wife holding that emotional weight by herself.

When I got home from work, I hugged her and apologized for leaving her stranded. I asked her to send me the report, and I read the pages of detailed notes that the doctor had put together. It was a thorough summary of the last three years of our lives. It included confirmation that our doctors are doing the right things and that there wasn’t anything we missed. Then, towards the end, I saw what I didn’t want to see the night before.

What should we expect in the short and long term? Is there any other information you feel would be helpful for us to know?

I do worry that his clinical picture has raised suspicion for a myoclonic epilepsy that may be progressive, in which case, continued difficulty in treatment and learning decline can be seen.

It wasn’t the first time we heard that. We’re three years in without seizure freedom, and it’s feeling like a more elusive goal every day. Our doctors alluded to the possibility but kept us focused on stabilizing what we can now. The near-term goals were a welcome distraction from the long-term possibilities. But I also don’t think about it getting worse because I can’t think of anything worse than what is happening to him now.

That night I laid next to my son as I put him to bed. I told him that I loved him. That I would always be there. That I was sorry that his life was so hard. I was trying to communicate my feelings to him. But he’s eight and doesn’t understand the words we use to express those very big feelings.

Somedays, neither do I.

But I feel the need to get them out and hope that he will someday be able to understand. I worry that there will be a window between now and if things get worse where he is able to grasp the meaning in my words. I don’t want to miss that window. Even if it only cracks a little, I want to get something through. Because if things do get worse, I need to know that he will have something to hold on to.

January 30, 2018