It’s Hard To Come Home

After three weeks of traveling, we headed back to Philadelphia. My son laid with his blankets against the window and we watched Colorado disappear in to the distance. The cars and the people were the first to fade, including the friends and family that we left two years ago when we moved east. The roads and the buildings were next to go as we climbed higher. Finally, the mountains were gone beyond the horizon as we straddled the line between the life that we had and the one we are trying to build in our new home.

epilepsy dad going home

It was good to be in Colorado. It was good for my son to be there, surrounded by people who love him. Surrounded by some of the only friends he has. Even though we’ve lived in Philadelphia for two years, for most of that time, he was sick and wasn’t able to make many strong bonds. Colorado, for him, still represents his universe, where everything is except for us. Philadelphia has only a smattering of significance, with a few friends but where most of his connections have come through the hospital or his condition.

It was good for me to be in Colorado, too. It was good to see my family happy. It was good for me to be able to talk face-to-face with friends that knows us from before and after the move and from before and after the seizures came. I move around a lot, and I don’t tend to keep people in my life that span the transition. It’s hard for me to maintain the connection, even though technology has in many ways made it easier. So those connections usually fade, just like the landscape passing by the airplane window.

But leaving Colorado was different. Those connections that we made there were stronger than I have ever had before. The life that we had there carries more weight than the life here that we have still yet to build. In many ways, Colorado still feels like home, but I force myself to respond with “Philadelphia” when I’m asked where home is, as if I’m trying to train my brain to actually believe it.

That makes it hard to come back. To leave a place where my son wore a constant smile. Where the faces of the people who looked at my son were those that love him and accept him and that weren’t only doctors or nurses or therapists. Where we were graced by a few seizure-free days. Where, when we lived there, anything was still possible.

I looked out the window from 35,000 feet. The landscape was a wash of browns and blues and greens. There wasn’t anything to identify where we were, and I felt the pull from both the east and the west. Between the future and the past. Between possibility and acceptance. These two places that were my homes…that are my homes…that mean completely different things.

As the plane hung in the air between those two places, I thought how hard it was to come home.

Especially when you don’t really know where home is.

 

Home

We were discharged tonight.

My poor little man didn’t even make it to the taxi before he fell asleep, slumped against a pillow in the wheel chair while waiting in the lobby. We carried him in to the house and laid him on the couch while we brought in the bags of toys and clothes that accumulated in this latest hospital stay.

Photo Feb 23, 19 26 33

I think the idea of coming home was such a relief for him that his body was finally able to relax and he was rewarded with a well-deserved slumber. In the last two weeks, he’s been poked, prodded, and tested, as well as having seizures, switching medicines, and dealing with a toxic reaction to one of them. For three days he lost control of his body and we had to help him sit up in bed and carry him to the bathroom, which must have been impossible for him to process when, days before, he was taking slapshots in the basement and running circles around his old man. That, and I can’t imagine what being stuck in a hospital room for more than two weeks does to a 5-year old. Tack of side effects to brain altering medicines. It’s an impossible recipe to grasp.

But tonight, we are home. He’s asleep in our bed while we watch him on a webcam, hoping he’ll sleep but waiting to see if he’ll wake up, if  we’ll need to battle him to go back to bed, or if he’ll have another seizure.

Our son is anything but ordinary. Unfortunately, that characteristic carries over to his epilepsy, as well, and his treatment has been tough to get a handle on. Shortly after each of our previous hospital discharges, we found ourselves confronted with a new seizure and a new complication that brought us back to the emergency room.

We are hoping that this time will be different. We’re hoping that we found the right medicines. We’re hoping we made the right choice to come home and try day hospital rehab instead of in-patient. We’re hoping that being home will help him return to his baseline. We’re hoping that everything lines up, that we made the right choices, and that, soon enough, our son will be back in the basement, taking slapshots, and running circles around his old man.