Dave, Author at Epilepsy Dad

A New Normal

The idea of normal for me six months ago feels very different from it does today.

Six months ago, none of this was happening. We were an ordinary family with an exceptional boy growing up in a normal way without seizures, without medicine, and without a diagnosis.

Then the seizures came, and our normal changed. Normal was daily medication. Normal was carrying a rescue medicine with us where we went. Normal was explaining to caregivers and teachers what to do in case of a seizure when we barely knew ourselves.

That was our normal for awhile. But then the seizures changed, and the medicine he was on also needed to change. Only, that medicine didn’t work, so our normal became more seizures, and hospital stays, and testing, and a search for answers.

This last hospital stay, a bad reaction to one of the medicines caused something called ataxia, which means our son basically lost control of his body. Thankfully, when they stopped the medicine and he is slowly gaining back control of his body and his mind, but we’re left to wonder how fully he will recover

Six months ago our normal was talking about how our son would be a hockey player when he grew up. Now we’re just hoping we can regain what was lost, and hopefully figure out a cause, or a treatment, or preferably both.

We’re still in a place where we don’t know what our new normal is going to be. But whatever the future holds, there is one thing that will always be part of our normal, and that is making our son feel exception.

Because he 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.

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.

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.