Tag: family

Milestones

The Latin is “milia passuum,” meaning a thousand paces. The Romans also erected stone markers at mile intervals to notify the passerby of distances covered or the number of miles to go to reach their destination.

The Lower Merion Historical Society

We sat in our chairs among other parents, siblings, grandparents, and friends. The gymnasium was filled with nervous energy as we waited for the ceremony to begin.

It was a day that we weren’t sure would ever happen. For 10 years, my son struggled with unrelenting seizures, medication side effects, and behavioral issues. After he was stabilized, although never seizure-free, he faced social and intellectual challenges in learning environments tailored for students who were not like him. At the same time, my wife and I fought school districts that seemed motivated to make him disappear. That was until we found his current school.

For the past 3 years, he was in a place where he belonged. He was in a place that saw him for who he was and celebrated it. He was surrounded by peers on similar journeys and was able to bond, make friendships, and learn. When we received the results of his recent neuropsychology test, it showed progress. He was below his grade level, but there was progress. After his testing a few years ago, the doctors predicted only regression. We started looking at functional schools, assuming the academics would be too challenging. That was until we found his current school.

As I took it in, Pomp and Circumstance began playing, and the room collectively turned to face the door. Our son, dressed in his blue suit and tie that matched the school colors, led the procession of 8th-grade graduates to the stage.

I looked at the faces of the families around me in the gym. I listened as they spoke about their experiences with the school and how proud they were of their children for reaching this milestone. My heart swelled as I watched the video the school made, combining pictures and videos of the students being interviewed about what they learned and what they would take away from their experience at the school.

When it was time to hand out diplomas, I walked to the back of the room and hid behind my camera. I’ve gotten to know many of the graduates and their families, and I knew it would be emotional for everyone.

There is a tradition at the school where the teachers put together an acrostic poem using each student’s name. As each student stood on the stage, teachers took parts to read. Every line of every poem showed how well they knew each student with a great mix of pride, humor, and recognition.

My son was the last to the stage. He stood tall as he climbed the steps, but I could tell he was nervous. The anticipation of this day and this moment had been building for weeks. As he stood to the side, the teachers read his poem, which, appropriately, included a Marvel reference. He looked so happy when he received his graduation certificate, and he and his teachers exchanged big, warm hugs.

And then it was done. Students, faculty, and families came together and filled the gym with love, and pride, and gratitude. I found my son in the crowd and he fell into my arms as I gave him a long hug. My wife came over and we all embraced and shared the moment as a family.

There are milestones and there are MILESTONES, and this was definitely the latter. It is a moment set in stone to let us know how far we have come along our journey, even if we don’t know how far we have to go.

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

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.