Starting From The Beginning

One of the truths about anyone new coming into our lives today is that they will never know how bad things were. Eventually, anyone that hangs around long enough will hear my son’s story. We will tell them how dark the times were and how sick my son got and how grateful we are to be where we are. But looking at my son today, it’s hard for most people to believe that things were that bad.

That disconnect feels isolating. It’s a reminder that there aren’t many people in our lives from that time. We were largely confined to the hospital after moving to a new city. The only people we knew were the medical staff, but they were transitory. We rarely saw any with regularity. Instead, we repeated my son’s history to every new face we saw. But they moved on and we stayed trapped in our world scared, desperate, and alone in the dark. Every day, every week, every month.

Sometimes, when you tell a story over and over again, it can dull the pain. The repetition has a numbing effect that makes it easier to deal with. But when you’re in the middle of it, that doesn’t work. Instead, it keeps the pain and the fear fresh and present. After months of unrelenting confrontation with our new reality, I wanted it to stop. I wanted one person, just one person, who I felt knew us, knew my son and could understand.

After a long string of random faces, my wish was finally answered. One neurologist started coming back through on rotation. Instead of repeating our son’s entire history each time, we could give her updates. She provided consistency and stability through our endlessly repeating days. I began to feel like I was talking to someone who understood what we were up against. Someone who knew how bad things were. She cared about us. Without those connections, it’s hard to imagine anyone fighting as hard as we were to not go back to that place. But she did. And for the last three years, we’ve had her at our side every step of the way.

Until now.

The woman who in many ways saved my son is leaving. I’m trying to be stoic. I’m trying to be grateful for everything she did for us. I’m trying to be happy for her as she pursues more of a focus on epilepsy because of her experience with my son. I’m trying to think about the many more children she is going to be able to help. But I mostly feel afraid. Afraid to take these next steps without her. Afraid that no one is going to get us or my son like she did. Afraid that no one is going to fight as hard as she did because of how connected she was to our story. When there aren’t many people that can relate to what you are going through, the loss of one is significant.

We’re at one of the best children’s hospitals in the country. Our new neurologist is one of the best in that hospital. But she didn’t see my son at his worst and I’m struggling with whether that matters. Whether she’ll fight as hard as she would if she had seen him back when this all started. Whether she will be personally invested in his outcome. Because I need that. I need his caregivers to have that connection to him. I need them to know and call him by his nickname. I need them to know how important he is. I need them to know who he is. He’s not just a patient, he’s my son.

The thought of having to start over is stirring memories from when this all began. I’m afraid of having to start retelling my son’s story and reliving those dark and fearful days. But I’m also going to miss that light that lifted us from the darkness. I’m going to miss having her at our side.

We tell our son to be brave. To be grateful. To try to find the positive. And I am trying, but right now I just feel scared, and alone, and sad.

Moving To Australia

Before my son was born, my wife and I talked about moving to Australia. It wasn’t because we were having a terrible, horrible, no good, very bad day. It was because we had been there on our honeymoon and we loved the experience. The idea of packing up and living on the other side of the world seemed like an amazing adventure.

In a way, it’s the same reason we moved to Philadelphia. While it wasn’t on the other side of the world, it might as well have been. Moving from the suburbs to the city. From the Colorado laid-back mentality to the always-moving city. The people and culture are as different as if we had moved to another planet.

At the time, the logistics of moving were easier. I already had a job, so we only needed to pack and find a place to live. Everything else we could figure out as we got more familiar with our surroundings. But we landed in Philadelphia right before my son’s seizures started. After that, the idea of moving became a lot more complicated.

It’s no longer a simple matter of packing up and finding a place to live. “Everywhere” is no longer the list of possible destinations. Our mindset needed to shift from aspirational to practical. The nature and complexity of my son’s condition mandated more specific requirements.

We would have to research the hospitals in the area to get a feel for their ability to support my son. How good is the medical care? Do they have the testing equipment on site, like a video EEG, or would we have to travel to another hospital? How easy is it to get in to see our neurologist?

We also have to do more research on the schools. In the past, we would have asked about class sizes and the quality of the education. Now, we would need to ask more targeted questions. Can they accommodate my son’s special needs? Can he get a one-on-one aide? Is the nurse familiar with seizures and epilepsy? Will the integrate him or isolate him?

Many of the answers to these questions would remove cities from our list of potential new homes. And there are many more questions to ask, each one shortening the list.

In many ways, epilepsy has taken away choices. Where we can live is one area, but there are so many. It also forces restrictions on what job I can take, what activities my son can do, even what he can eat. I assumed that we could build our lives by picking pieces from an unlimited list of options. But instead of the full buffet, we’re limited to the salad bar.

It would be easy to be resentful. It would be easy to see these limitations that epilepsy has imposed on us make and feel like victims. It would be easy to see only loss. Loss of freedom. Loss of choice. Loss of potential. But being where we’ve been, I’m grateful for where we are. I don’t resent what we don’t have or where we can’t go because I know how special what we do have is.

I still like the idea of an adventure. I still think about moving to Australia. Maybe some day, if we can get my son’s epilepsy under control, we’ll be able to move to have that adventure. Until then, we are exactly where we need to be. The dream of living in another part of the world might seem far away. But the reality is that our journey so far has brought us closer together.

Things No Child Should Get Used To

A few weeks ago, we went to the children’s hospital for an appointment. We walked through the large, automatic doors and up to reception where my son said hello to Mary (they’re on a first-name basis), who commented that she liked his red hair. Without needing to ask, she pulled our family up from memory on the computer and printed our visitor badges.

Check-in completed, my son led us up the main staircase to the second floor. At the top of the stairs, he turned left and headed down the long hallway towards neurology. He knows his way around the hospital and which building to go to for neurology, or speech, or another test. As I followed him down the hall, it made me sad to realize how well my son knows his way around that place. A child should know his way around a toy store, not a hospital.

As we turned the corner, we passed phlebotomy. There were nervous parents and children in the waiting room, and seeing them sitting there made me think of the times we were in those chairs. The first few times, we were nervous, too, but after too many visits, we got used to it. Now, my son likes to talk to the phlebotomist as she prepares the needles. He politely says “No, thanks” after she invites him to look away, and he watches as the needle pierces his skin. “I never cry”, he says, which is almost true in the hundreds of times he has been pricked and pierced. “You should come here more often to show our other patients how to do it,” we’ve heard more than once. “Ok, ” my son replied, “I’m really good at it.” As I remembered him saying that, I felt sad. That’s not something a child should be good at.

He knows the routine of the physical exam, not because he has had years of exams under his belt, but because he has had so many in the short time he’s had epilepsy. These doctor visits, the trips to one of his therapists, the emergency room visits, they’re part of his routine, those things he’s done so many times now that he just does them because, well, that’s what he does. All these things are now just part of our lives, are part of his life, like eating, and breathing, and going to the park. He wakes up and takes a handful of pills, and another handful at night, without question, because that is what he has to do. He doesn’t get to eat the food that his friends do, and he can’t just have a snack, it has to be weighed and measured because that’s how it is and he’s used to it. He doesn’t look at a restaurant menu because he knows he can’t order from it, and he’s used to that, too.

He’s getting used to having seizures. He’s crying less after he has one in the middle of the night and more regularly just putting himself back to sleep. If he forgets to put on a pull-up and needs to change, I’ll often catch him on the floor halfway through the process by the time I get to his room. He’s getting more aware of his seizures, too. He had one on the basketball court the other day. When I asked him if he was okay and if he knew what happened, he replied, “I had a seizure, but I’m ok.” It rolled off his tongue so casually it was as if he was describing a shot that he missed or if he had tripped on a rock and fell.

On one hand, I’m grateful that he has accepted these restrictions and these changes in his life so easily. I am not sure that I have the strength to constantly explain to him why he has to do these things when I am still struggling with my own questions. Why is this happening to him? Was it something that came from me? Is this our lives forever?

On the other hand, if I think about the things that he has gotten used to, it breaks my heart. This condition has taken away too many things from the one person who I desperately wanted to open the world for, and I’m having a hard time resolving that discrepancy.

I try to think about the positives in this situation, but most of the time I just see a little boy who has gotten used to too many things that he shouldn’t have had to.