Tag: epilepsy

Thank You. That’s True.

I think, as parents, we all have ideas of doing better than our parents did.

We want to pass along what we think our good qualities are to our children and not project our bad qualities on them.

I have a hard time accepting compliments. I don’t let them in. I minimize their effect on me by deflecting. I smile, but I filter them. I minimize them by deflecting credit. Or by telling myself that the person is wrong. I know the other person is wrong. They don’t know all the details. If they did, they wouldn’t have complimented me. I punish myself with the words. Pride is a sin.

I shrink when someone compliments me. My son grows. When we praise him, I see him get bigger. I see him smile. He likes for me to tell other people the story of him doing something well, a good choice he made on the baseball field, or something cool he did playing Fortnite.

I’ve been trying to follow my son’s lead and let compliments in. My therapist suggested, rather than trying to convince the complimenter why they are wrong (even if I only do it in my head), I instead respond with “Thank you. That’s true.”

At first, I practiced with my wife, and the words were coated with so much sarcasm that they were unrecognizable. The words were fighting so many years of programming that I needed to cover them with something to get them through. It was like dipping broccoli in cheese to get a child to eat healthy food.

Compliments are my broccoli. Sarcasm is my cheese.

thank you. that's true. epilepsy dad

While it’s a fine way to start, the hope is that eventually, the child doesn’t mind or may even like the taste of broccoli. I’m at the stage where I don’t need as much cheese, but it’s not no cheese. The positive messaging is taking over the negative programming that has controlled my reactions for most of my life, and it’s showing up in my relationship with my family and myself.

My therapist noticed the change and complimented my progress. So has my wife.

Maybe I’ll try to take the compliment.

Thank you. That’s true.

Why I Don’t Drink Alcohol

A while ago, I wrote about getting therapy and how it allowed me to understand and change my patterns and behaviors so that I could have a healthier life and be more present with myself and my family. That awareness sparked another change that I made in my life a few years ago.

I stopped drinking alcohol.

For many people, alcohol is a “slippery slope” topic. I loved a glass of wine with dinner. The aroma, the taste, and how it is paired with a meal unlocked a different aspect of food. But as our life got harder, I found that I was turning to that glass of wine more as a way to dull the pain and fear and to escape. It fed into my tendencies to go inside myself or avoid dealing with issues. It also made it more difficult to continue and sustain the progress that I was making with my mental health. Many people can do both, but it was clear that I couldn’t. So I stopped.

It wasn’t easy at first. It meant I wasn’t trying to escape and forcing myself to be more present in our situation. However, the work that I was doing with my therapist and with my family made me stronger and more capable of doing that. Even though it was hard, the more present I was, the more progress I saw in rebuilding those relationships.

Eventually, the desire to escape with a drink went away, but there were still temptations outside the house that I needed to contend with, so I didn’t want to fall back into my old pattern. The culture of my industry is filled with happy hours and entertainment. When everyone else ordered an alcoholic beverage, and I ordered a club soda, there were questioning looks. But eventually, those looks disappeared, and it stopped being a thing. Mostly, it’s only weird if you make it weird. I didn’t have to go into the details with anyone on why. It just became a fact that I didn’t drink, and I avoided situations where I knew the drinking would make me uncomfortable.

That was more than four years ago. Of course, no one change fixes everything. My son still has seizures. Our life is still stressful. But the point of getting help and not drinking isn’t to force me to only live in the stress and to be fully present all the time. It’s to be capable of being more deeply present when I need to be, to break the habit of running away when things get too big, and to replace the unhealthy behaviors with healthier ways to wind down and disconnect from the stress, both with my family and friends and also by myself.

I am sometimes asked if this choice is permanent or if I’ll have a drink someday. I can honestly say that I don’t know. I am human, and life is unpredictable. But I know that, if and when I do, it will be on my terms.

Avoiding Reality

A while ago, I went with my parents to an appointment with an estate planning attorney. We’ve been pushing them to get a new will and legal documents since they moved to Pennsylvania, but it never seemed to be a priority.

Over the last year, though, both of my parents have continued to struggle with health issues and it has only gotten worse. While their nest egg wasn’t substantial, they had specific wishes for what to do with their estate and it wasn’t enough to just tell me what they were.

As I sat in the lawyer’s office and listened to his questions, I thought about our plan. Or rather, our lack of a plan. The extent of our planning is adding beneficiaries to our accounts, which is a) not a plan and b) not enough. If either my wife or I pass away, the other can manage to keep things going. However, the elephant in the room is what happens when both of us are gone and, more importantly, what happens if that happens when my son is young or if he’s not able to be on his own.

A few years ago, I started to write a post by jotting down what was in my head:

  • I know he is going to get older.
  • I don’t want him to.
  • I want him to stay this age.
  • I want him to be able to stay with us.
  • I want to be able to take care of him.
  • I don’t want him to have to face the world.
  • I don’t want him to have to take care of himself.
  • I don’t want him to have that burden.
  • I don’t want him to fail at it and to have a hard life.
  • I have to set him up to do it himself.
  • I have to put in a safety net.
  • But I’m not going to be here forever.
  • I’d fail him if I pretended he wouldn’t get older, or didn’t do anything because I didn’t think he would get older or because I don’t want him to get older.

There is a lot to unpack there, but the thoughts and questions I had years ago are still relevant today. Each year, I’ve thought “this is is shaping up to be the year we get things under control.” However, each year ended with the same questions remaining unanswered.

Who will take care of him if he is still a minor? At one point, we had a plan there, but it’s been too long and so many years that the family who would have taken him is no longer viable.

How will he make a living? What if he isn’t able to work or generate an income? What if the only money he will have is what we can leave him? I make a good living, but there are a lot of expenses that come with any medical condition, both normal living and trying to have a good life, medical expenses, educational expenses, and other things that chip away at the nest egg.

Facing these concerns and answering these questions is the only way we can realistically try to secure the future we want for our son. But being realistic means accepting and facing reality, which is not a trait I am always known for, especially when it comes to my son’s future. There is always a reason to put it off. There is always “one more thing” we want to do to get everything in order before we talk to someone. The result is another year without a plan, which is such a disservice to him.

It’s time to do different.