epilepsy dad

Tag: family

  • Family Matters

    Family Matters

    When my son first started having seizures, we had just moved to Philadelphia. We were in a new city with no family and no support system in place. We navigated the fear of losing our son by ourselves.

    My parents were elderly living in Florida. There wasn’t much they could do. My wife’s mother was running a business in Colorado. We told our parents that there was nothing they could do partially because we didn’t know what anyone could do, and partly to free them from the burden of responsibility.

    Along the way, we were supported by our children’s hospital, and the doctors, nurses, therapists, and other caregivers. We hired nannies to help with caring for our son at home. But these were either health care professionals or people we had to seek out and pay for. That made our support system transactional and expensive, and left us still feeling isolated and alone.

    A few years ago, my parents moved to Pennsylvania. It was nice to have them closer, and we were able to occasionally leave our son with them for a night so that we could go on late date nights or spend a night away. My father doesn’t drive anymore, but my mother could also pick up our son from school if we got stuck. And while we desperately needed help when my son’s health was at its worst, it was still nice to have the help now.

    Around the time when my parents moved, we also reconnected with my family in Connecticut. During the pandemic when we made our excursions to Maine, we would stop to visit them. My cousin started coming down occasionally, too, to spend time my with parents. When my parents moved into the assisted living facility, our cousin would stay with us and it was awesome.

    This spring, my mother had a stroke. I learned about it when I grabbed my phone lying in bed next to my son after he had the biggest seizure he has had in years. It was a rescue medication type of seizure, followed by messages from the nursing facility and my father about my mother.

    My wife and I switched into caretaker mode and made a plan. She would stay with my son and I would attend to my mother and check in on my father. I quickly got dressed and headed to the hospital.

    When I got to the hospital, my mother was in poor condition, but she was stable in the intensive care unit. Once I got the report from the nurse, I texted the family. That was mid-morning, and by early afternoon, my cousin and an uncle had made plans to come to Pennsylvania.

    For as familiar as navigating a hospital in response to a crisis was, it was a different experience knowing that help and support was coming. That feeling of having someone show up for you is one that I’m only used to with my wife, who constantly has my back. Having family here meant that we could also focus on my son without worrying about my mother, and also mix in time with my father and time to rest, which we are not typically able to do when these crises occur.

    What could have put an overwhelming amount of stress on my wife and I turned out to be manageable thanks to the support of our family.

    I’m happy to report that my mother continued to recover and went home the following weekend, and my son took a few days off but was able to go back to school and even play baseball that weekend.

  • Transfer Learning

    Transfer Learning

    The sound of a seizure woke us. Normally, they only last a few seconds in the morning, but this was louder, longer, and more intense. We rushed into our son’s bedroom and saw his body rigid, his head turned, and saw the rhythmic pulses of the seizure gripping him. We held him and cleared the drool from his mouth. I grabbed the magnet for his VNS, handed it to my wife, and ran to get the rescue meds. Swiping the magnet did nothing, nor did the first dose of rescue medication. I wasn’t sure if it was because we did it wrong since this was the first time we used the nasal delivery, but we grabbed a second dose and gave it to him. A few minutes later, his body started to relax.

    I grabbed my phone so we could lay in bed with him and saw that I had a number of calls overnight. I listened to the voicemails, and they were from the assisted living facility my parents live in. My mother had a fall and was rushed to the hospital.

    I called my father, who didn’t have many more details. His memory is fading, but he knew that she had fallen and the staff had called for an ambulance.

    I called the hospital to get the details. Eventually, a nurse returned my call and said that my mother had a stroke and was recovering in the ICU.

    I checked my watch. It was only 8 AM.

    Good morning to you, too.

    My wife took care of our son so that I could go to my mother. When I got to the hospital, my body went on autopilot. This wasn’t the first time I had to rush to the hospital after receiving a call. It was a regular occurrence in the early years of my son’s epilepsy. My wife would call and let me know they were on their way to the emergency room, and I would stop what I was doing and head to the hospital to meet them.

    Walk in the door. Hand the check-in desk my driver’s license and get my visitor pass. Get the room number and directions. Hallways. Elevators. More hallways. Nurse’s station. Room.

    There is a technique in artificial intelligence called “transfer learning,” where an algorithm trained to do one task is repurposed for another related task. My hospital process trained for the children’s hospital worked perfectly. The only difference this time was that the patients I passed were adults, but the routine transferred perfectly to this new environment.

    When I saw my mother, it was very similar to the postictal state my son would be in after an intense seizure. The disconnect between the brain and the body as everything came back online caused a loss of understanding, a loss of language, and involuntary motor movements. The same patience we used with our son helped me understand that when my mother said, “I am cold,” it meant, “I want to be cold,” because she was covered in blankets.

    Throughout the day, she continued to improve, and by that evening, she was able to communicate more easily. When I returned the next morning, she was out of bed and sitting in a chair, and her language skills were much improved. Like my son, after he had a seizure, she didn’t remember many details or that I was there the entire day.

    I have a lot of practice sitting at a bedside in a hospital. I have a lot of experience watching a loved one in a scary situation. While I am grateful that the experience helps me stay present and responsible, I would much rather have experience doing almost anything else.

  • We All Have Needs

    We All Have Needs

    We need joy as we need air.
    We need love as we need water.
    We need each other as we need the earth we share.

    Maya Angelou

    In psychology, Maslow’s Hierarchy of Needs depicts a five-tiered model of human needs: physiological, safety, love/belonging, esteem, and self-actualization. It’s often depicted as a pyramid with the idea that lower-level needs must be satisfied before higher-order needs can be fulfilled.

    Source: https://en.wikipedia.org/wiki/Maslow%27s_hierarchy_of_needs

    Growing up, my physiological needs were largely met. I had food, drink, and shelter. I was clothed with the finest sneakers from the grocery store and mismatched Underoos from Goodwill.

    The next level, safety, is about order, predictability, and control. There wasn’t much of this in my childhood. I grew up in a different time, surrounded by a system that still believed in corporal punishment and people who were angry, frustrated, and mean. The lack of control, the fear of being punished, and the unpredictability of my environment made it impossible to feel safe.

    If I was sad or scared and expressed my needs through crying, I never knew if I would be comforted, ignored, or told, “I’ll give you something to cry about.” The people around me couldn’t handle their feelings; mine were often too much, inconvenient, or wrong.

    My safety level was never fully satisfied, so there was little hope for anything above that. My desire for love and belongingness conflicted with my need for safety, especially within my family. This is especially common with children and why people cling to abusive parents or partners. I had friends but never friendships, and giving and receiving love was confusing and dangerous.

    Esteem is about the desire to be accepted and valued by others. It’s hard to feel worthy when you don’t feel like you belong, and it’s impossible to achieve self-actualization, the top level of needs, when you don’t believe you have any potential to become anything of significance.

    Over the years, I tried many ways to make my needs important to have them met. I would put other’s needs above my own and do my best to satisfy them in hopes that they would do the same in return, but the people I surrounded myself with were only interested in having their needs met. If I did find someone willing to consider my needs, my programming reminded me that it was dangerous and that they wouldn’t be met anyway, so it would be better not to express them to avoid disappointment. I had a therapist who once told me that in a healthy relationship, there is room on the shelf for both persons’ needs, but I operated as if there was only room for one, and the needs on the shelf weren’t mine.

    I’ve seen more and more how I interact with the world determines how my son interacts with the world. Whether it’s his desire to show his mother he loves her by heading straight to the flower section when we go to the grocery store or his unfortunate habit of not knowing when to stop a joke, I see what I do in him. I also know how the things that I don’t do but should do are absent from his behaviors.

    I think about the example I am setting for my son. Even if he didn’t have special needs, I would want him to feel comfortable putting his needs out there and being surrounded by people who are willing and capable of meeting them. He deserves to know what a healthy relationship is and feel like an equal partner in these relationships rather than unworthy or afraid like I did. The reality is that he does have special needs, and he will be more dependent on others and will most likely be less able to navigate the world alone.

    Change is hard, but there are so many ways in which our journey has already made me a better husband, better father, and better role model for my son. He already has the biggest heart and is sensitive to the needs of the people around him. I want to ensure he knows his needs are just as important and that he is worthy of having them met, too.

  • 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.