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.


The Waiting Is The Worst Part

I spend a lot of time waiting for explosions.

These explosions come from different places and take many forms in my life. Lately, they’ve come in the form of seizures and an angry reaction to a new medicine.

Each explosion creates a new crater on the landscape in my mind as I hunker down in the bunker waiting for them to subside. The snow outside tonight makes me think of the soldiers in World War II, freezing in foxholes in the dark night of the Ardennes Forest while the Germans shelled them, destroying trees, bodies, and spirits alike. The physical damage is easy to rationalize, and to justify, and to accept. The damage to the spirit is harder to quantify, and it brings with it the wonder when the explosions will come again.

epilepsy explosion shellshock

The waiting is always the worst part. Waking up to every sound at night wondering if it’s another seizure, especially when there were none the previous night. Wondering if the next episode of my child not listening will escalate in to biting, and spitting, and the horrible things that no child should ever have in their heart. Only, you know with what’s happening, that is not really your child. Except, it is. And there is nothing you can do about it except try to calm things down, and hope that it will be the last time. The last outburst. The last bad reaction.

And that’s when the waiting starts…all over again.


The Illusion Of Time

It’s 4 in the morning and I’m sitting on the couch across from the hospital bed where my son is sleeping. Sleeping, finally, after having a cluster of seizures. The first one happened while I was lying in bed next to him. A quiet grunt announced the oncoming episode; a sound that would otherwise have gone unnoticed except for my newly acquired hyperaware sleep where I listen for any sound out of the ordinary.

The first seizure lasted under a minute, followed by another, longer one. They repeated for the next two hours, various lengths with varying breaks for sleep in between. As each seizure started, I would focus on the digital screen showing an analog-style clock affixed to the wall trying to quickly find the thin seconds hand on its journey around the face of the display. As the seizure ended, I’d groggily make a mental note of the duration to pass along to the nurse. Just beyond, a team of doctors looked at the data.

epilepsy dad doctor hospital diagnosis

Robotic, calm, precise…all the things I wasn’t when he had his first seizure.

If you’ve never seen a seizure, especially happening to your child, the first few always stretch time. For me, there was a phase of not knowing what was happening. I thought he was playing a game until he wouldn’t respond for what felt like an eternity. Then the frantic 911 call, the waiting for the ambulance, the not knowing the different phases of a seizure and when it began and when, or if, it would end. When the paramedics and later the doctor asked us how long the seizure lasted, we didn’t know. We had no reference. Our initial estimate was 10 minutes, but time in those circumstances, time is stretched and bent and irrelevant to a panicking parent. We didn’t know we were supposed to know how long they lasted, and so we made an impossible guess.

Einstein said the “Time is an illusion”, that the passage of time is a psychological human condition, not a property of the universe. I don’t know about the universe. But as a parent, I know that sometimes time moves way too fast and, at other times like in the middle of a seizure or when you are waiting for an answer as to why this is happening at all, it moves too goddamn slow.