epilepsy dad

Category: parenting

  • And

    And

    “And? And is just one word. How is that helpful?”

    Monnerat, K. (2022). And. kettlepot press.

    I had to look up how to do a proper book citation for the quote above. You may notice that the author’s last name looks familiar. Hint: it’s also my last name. That’s because the author is my wife, Kerri.

    A few years ago, she published And, a book about feelings, friendship, grace, and permission to feel multiple, conflicting feelings all at once. The book won a BookFest Award in 2023 and received positive reviews and comments about the impact of the story and the powerful three-letter word.

    As with many impactful books, And is drawn from the years of experience my wife had teaching children and her journey as the mother of a child with special needs. It’s also a word and idea we live by in our home that helps us navigate and have a common language for the complex and sometimes conflicting feelings we experience every day.

    A very common example in our house is when my son is doing something, whether a school performance or a baseball game, and he is feeling nervous and excited. This situation comes up so often that my son, who likes to make up words, created the portmanteau “nervou-cited,” and we use that as shorthand for talking about his feelings in those situations.

    We have had many conversations where someone will interject, “That’s an and.” We can be talking about a situation at work or the state of the world. The conversation can be about the dogs or our relationship with another person or family member. The reminder that we don’t need to force these experiences to have one emotion by dismissing the others is a truer representation of how we should be navigating the world and reduces the urge to focus only on the negative emotion or to try to force ourselves only to let ourselves feel the positive emotion.

    The reality is that being a father is stressful and joyous. Being a special needs dad is scary and rewarding. A project at work is challenging and impactful. An upcoming presentation brings nervousness and excitement… nervou-citement.

    By giving ourselves permission to feel multiple emotions at once, we can better navigate the complexities of life in a more honest, more effective way by dealing with everything we are feeling, not just the one emotion we think we should feel or the one that feels bigger.

    In recognition that 1 in 26 people will develop epilepsy in their lifetime, get 26% off your order with the code EPILEPSYDADBLOG when you order directly from kettlepot press.

  • Thank You. That’s True.

    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

    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

    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.

  • Reacting vs Responding

    Reacting vs Responding

    Growing up in Florida, I played a lot of tennis. Even though I lived near one of the best tennis schools in the country, I never took any lessons. My friends and I would bring our rackets and a can of balls to an open court and play for hours.

    I wasn’t the best player, but I was able to present a good challenge. My untrained backhand had a severe backspin, making it difficult for my opponents to reach. My serve was chaotic but fast, so it was hard to return in the rare instances when it went in. But the main reason why I was a tough opponent was that I was fast and could get to balls anywhere on the court.

    I started playing more tennis when we moved to the suburbs a few years ago. At first, I took a few lessons and clinics, then leaned in and played a few hours a week. I’ve slowly progressed in my technique, but I still have speed. I can still react. But reacting is exhausting.

    Reacting is instinctive. It’s fast. It’s unconscious. Reacting is about survival, but that can get me into trouble. I might keep the match going, only to put myself in a worse position than before. Reacting begets reacting, which, in tennis, means a lot of running around.

    Responding is intentional. It’s slower, but that intention can create more space. Responding keeps the match going and aims to put me in a better position for the next shot. That looking ahead and control is more efficient and effective.

    When our epilepsy journey first began, all we did was react.

    Seizure. React. Status. React. Medications. React. Side effects. React. Ataxia. React. New seizures. React. New medications. React. New side effects. React.

    There was no time to think, no time to plan, no time to be intentional. There was no space. Every time we reacted, we’d hit the ball back over the net only to have our opponent easily smash it back across the court and force us to rush to reach it. Our opponent was trying to win the match, and every desperate reaction we had was to keep our son alive.

    This went on for years until his condition stabilized, and we could finally catch our breath. Initially, the feeling of not having to react was foreign and unsettling. We had been reacting for so long that I had forgotten there was another way, and I had no reference for what that other way looked like when it came to epilepsy and our son.

    After a while, though, we began adjusting to this new way. The ability to introduce intention into our decision-making has given us the space to catch our breath and make choices that move us forward. Rather than sending him to a school that couldn’t accommodate him, we could take the time and find a school that was right for him. Rather than being afraid to schedule activities, we began living our lives.

    That’s not to say that we don’t still react. Epilepsy is a crafty opponent that can catch us off guard and force us to scramble. But reacting is not the only thing we do, which makes a big difference.