Author: Dave

Out of Balance

One night before bed, my wife came and sat next to me.

“I know you’re tired,” she said. “But when you get that tired, the way you check out is to be really short with us, and like we are bothering you. We haven’t been spending a lot of time with our son, and that’s how he sees you at night.”

Of course, she was right. Looking back, I can see how I responded with one-word answers or a tone of disinterest. Our nights became about checking out by sitting on the couch watching TV while our son played video games online with his friends in the basement. Dinner time was mostly apart, as well, us watching TV while he ate and watched his iPad.

It was too easy to fall into this routine. The long winter nights, the lingering pandemic, the burnout from keeping everything together leeched our energy and motivation. We checked out long before it was time to check out, and anything that required exerting effort or interest was met with resentment and disdain.

After my wife called me out, I felt ashamed and guilty. I used the excuse of letting him play with his friends to justify my behavior. “He’s doing what he wants to be doing, so it’s ok to check out.” But it was just that…an excuse.

I’m glad that he has friends now from school and has more independence to hang out with them virtually. It’s what he wants to do and what he should be doing, especially after many years of isolation.

It also comes after so many years where we were always “on,” too. We were the caregivers of a child with epilepsy, with all the care and worry that required. We were his emotional regulators when he couldn’t do it himself. We were his teachers and his entertainment when he was too sick to attend school. That was in addition to trying to manage our own lives, jobs, and relationships.

But moving from one extreme to another threw everything out of balance. That’s not to say that the amount of time needs to be equally portioned. My son is getting older, and we’re not his only source of entertainment or care anymore. He should be spending more time with friends and more time with himself. But that doesn’t mean those two things should be the only things in his life or that they are excuses not to be a parent.

Or a husband. Sitting on the couch next to my wife isn’t spending time together. We’re relaxing but not interacting. We just happen to be occupying the same space and doing the same thing.

As in most situations, awareness is the first step to change. I’m grateful to my wife for pointing out where I was and how I was responding to our son. Since then, I’ve been more aware of my tone, and we’ve also started having more family dinners, more walks in the neighborhood, and more ping pong tournaments in the basement. My son still plays with his friends, and my wife and I still veg out on the couch watching television. But, now, those aren’t the only things we do.

Trade-offs

I started this post in 2021 when we were still searching for a new school for our son. We found a new school and moved out of the city since then, but I wanted to share it because the sentiment remains true. There are always trade-offs.

We make trade-offs every day. Any time there is a limited resource, like time or money, we have to choose how to spend those resources. I could spend my morning writing, or I could get more sleep. I could buy a new car, or I could go on vacation.

Sometimes, there are factors involved that help us make a choice. If I didn’t get a good night’s sleep last night and I didn’t want to be miserable all day, I might choose to use that block of time to get more sleep. If my car is falling apart and I need it to get to work, I might choose the new car over a vacation.

Trade-offs may defer some choices. I might need to buy that new car now, but I can save up and take the vacation later. But they could also mean giving up one choice completely.

Every situation is different. At different times, different things take priority. Maybe you’ve been cooped up too long and decided to take a vacation rather than buy a new television. Perhaps you like to travel a lot, so you live in a smaller apartment or house.

Wealth and income play a big part in whether or not there is a trade-off, and it changes the scale at which those decisions need to be made. If I had a million dollars in the bank, I could likely get the new car and go on vacation. But if I have nothing in the bank, maybe I can’t choose either.

And then some situations might feel like trade-offs, but they aren’t. We’re exploring schooling options for my son because his previous schools couldn’t accommodate him. Virtual learning is taking a much bigger toll on him than we anticipated, so we are once again looking at in-person schools. But the ones that can accommodate him and his needs are private schools which cost as much as going to a good college every year.

On the one hand, we can use some of the money we would put away for him to go to college now to cover some of the costs. But that means he’ll have much less money down the road should he eventually go to college.

Or it could mean making trade-offs in other areas. One thing we like doing as a family is taking vacations. Last year, we were fortunate enough to go to Maine a few times. When the world was open, we visited friends and family in Colorado.

I realize how fortunate I am to be talking about deciding between a private school and college or vacation. There are issues of equity and equality that are pervasive around the world that affect the choices we have and our ability to choose. I know there are families out there making much more difficult choices, like deciding between medication and rent or groceries. They are deciding between the quality of the education for their children and their quality of life. No one should have to say things like:

“Sorry, buddy, we can’t do this thing you really want to do because we have to pay for your school.”

“We can’t have this nice thing because we have to pay for your medication.”

When you are a family that has a child with special needs, more things are a must. Medication, including some that insurance doesn’t always cover. There is the cost of insurance itself, and therapy, and special equipment or food, not to mention enough time and support to be able to go to work and to doctor appointments.

We end up not only dealing with a medical condition that we weren’t prepared for and all the complexity and fear that comes with that, but also juggling these new tradeoffs and limited resources. It’s overwhelming. It’s neverending. It’s easy to feel trapped.

There is no easy answer. We’re almost eight years into our epilepsy journey and, while we may have normalized aspects of this life, we don’t have it figured out. We can’t. Things keep changing, and we keep making choices based on where we are at that time, and hope we make the right one.

There are no solutions. There are only trade-offs.

Thomas Sowell

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While there is no easy answer, there are a few resources that we’ve found along the way that I wanted to share that may help you feel a little less trapped. If you have any resources that you’d like to share, please do so in the comments below.

Disclaimer: I am not a lawyer or a financial or tax expert. Please consult a professional or the organizations listed if you need advice.

Child Health Insurance Program (CHIP) – Not available in every state, but can act as secondary insurance. Although it also serves no- and low-income families, some programs provide assistance based on the severity of the medical condition, too. The Pennsylvania program has an additional benefit of reduced admission to museums and other cultural events. https://www.medicaid.gov/chip/state-program-information/index.html

ABLE – Tax-advantaged savings program for individuals with disabilities. Similar to a 529, but can be used for more than just education. Depending on the state, contributions may be tax deductible. https://www.ablenow.com/

National Organization for Rare Disorders (NORD) – We had a hard time getting a new medication covered for our son, and NORD had an assistance program that helped us out. https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/#section-1

Epilepsy Foundation – A lot of resources. Check our your local affiliate who can provide resources and support groups for your area. https://www.epilepsy.com/

Pandemic Life Isn’t New

In March, we’ll have been in a pandemic for two years. In those two years, the way we live our lives has changed. We live in fear of the disease, of death, of the unknown, and each other. We are more isolated. We haven’t seen loved ones in person. We’re losing our connections to our friends and each other. We don’t go out like we used to, and when we do, we’re masked and hyper-aware of the people who aren’t masked. Going out adds to our daily stress rather than relieves it. It’s safer and easier to stay at home.

It reminds me of when my son was first diagnosed with epilepsy. The world shut down so quickly once people started getting sick and dying from COVID. The same thing happened when we went from one seizure to two seizures and then watched the doctors try to save my son during our months in the neurology ward of the hospital.

We lived in fear of his condition, of death, of the unknown. We were confined to the hospital and then at home. We were isolated in a new city far from friends and family. The people we had met had to deal with our unreliable commitments and last-minute cancellations when the seizures and side effects of the medication disrupted our days. We lost our connections to those who couldn’t or wouldn’t understand what we were going through. It was safer and easier to stay at home.

Rather than focusing on the unmasked danger, our attention was on my son’s unrelenting seizures. We were on constant guard because they were everywhere. Instead of relieving stress and watching him participate in activities like other kids his age, it only added to our stress. I remember standing in as the third base coach for one of my son’s baseball games and watching him stiffen and freeze in place or drop as he had a seizure. I remember anticipating the meltdowns he would have when he was on Keppra and how it hung like a cloud over everything we did. I remember the storm and the anger and the fear and the chaos when the meltdown finally came. I still wake up multiple times at night when my son has a seizure or to look at the video monitor to check in. We started living with constant fear and anxiety long before the world heard of COVID.

In many ways, it feels like the world finally caught up to where we were. People are canceling plans after experiencing symptoms or a positive COVID test the same way we did when my son had a bad “seizure day.” Or when we were just too exhausted to follow through with a commitment. People are making efforts to stay connected to the people who are important to them and creating more space for each other when life gets complicated. That’s the same thing that happened to us as we went through our epilepsy journey, and we found “our people.” Those relationships are being tested again, but I hope we will find those people on the other side of this, too.

If we somehow manage not to destroy the world and the pandemic eventually ends, my son will still have epilepsy. We will continue to need that space and understanding because, while the world may go back to some form of normal, it will still be different from ours. But maybe this shared experience during the pandemic will create stronger bonds because people got a glimpse of what it is like to have something outside of their control have such a major influence on their lives. Maybe on the other side of this people will have more patience, empathy, and understanding.

If you look at how we are treating each other, it’s not looking that way right now. But maybe there is still hope.