Tag: parenting

It Doesn’t Get Easier

It was pitch black in the cabin as I laid in the bed next to my son. I was asleep but found myself instantly awake, alert and staring up towards the ceiling the ceiling. There was no movement and no sound, but I knew what was coming. The reason that I was awake was that my son started to have a seizure. That initial moment when my son’s body tightened was enough to pull me from my sleep. What came next was the rhythmic tensing of his muscles and the accompanying moaning as the air was expelled from his lungs and crossed his vocal chords.

I turned to him the same way I always do and told him he was going to be ok. I rubbed his back and head until the seizure passed. Then I rearranged his body that had shifted during the seizure so that his head rested on the pillow so that he could return to sleep.

Some nights, these seizures seem so routine that I can easily fall back to sleep, too. I switch on my autopilot and replay the same actions to comfort him and reposition him in bed. Once he is sleeping, my autopilot guides me safely back to my own dreams.

The night in the cabin was not one of those nights. Instead, I laid in bed next to my son and felt a rush of sadness wash over me. In the four years that he has been having them, I have seen hundreds of seizures. Including subclinicals, he’s had thousands. Seizures and epilepsy are intertwined with every decision we make. We’ve been living with them so long that I thought it would get easier to see them. But it hasn’t. Each seizure brings me back to that first one. Those feelings of helplessness. They’re still there.

During the day, it’s not seizures. It’s his struggling to find words. It’s his inability to remember what he did the day before. It’s him guessing at the right thing to say or do because his brain won’t make that connection for him. It’s him constantly saying sorry because his brain lets him down.

It’s hard to not watch my son struggle and feel sad. As he stumbles over words to find the one he wants, it tears me up inside. I want to help him. I want to make it easier. I want to say the word for him so that he doesn’t struggle. But I know that he needs to find it himself. He needs to practice. So I smile and wait for him to find that word and try not to let my face betray the emotions I feel inside.

Things are supposed to get easier the more you do them. Things are supposed to get easier the more you are exposed to them. We’re four years in but, while we have grown and are better capable of handling the mechanical motions of dealing with seizures, it still breaks my heart.

Every day we are faced with the reality of what epilepsy is taking from my son. Every day, we see seizures and the physical, cognitive, and emotional toll that epilepsy is taking on him. And every day ends knowing that we’re going to go through it again the next day.

It doesn’t get easier. Not really.

Planning For The Short Term

“Life is what happens while you are busy making other plans” ~Allen Saunders

At the end of the school year, we finally received an Individualized Education Plan (IEP) for my son. An IEP defines individualized educational goals for children determined to have a disability and any accommodations that need to be made to help achieve those goals. Before the summer break, we sat with our lawyer across the table from the school district to talk about the specific details of my son’s goals and accommodations for the third grade.

Even though the start of the school year was only two months away, we knew that whatever we put into the plan was likely to change before the first day of third grade. We knew because it always does. We’ve tried different schedules and approaches before we had the IEP. They might work for a few weeks until we change a medication or until his fatigue builds up so much that he can’t function and we need to adjust.

The same goes for other aspects of his life. The constant variance of his seizure burden and his mental and physical stamina means that we can rarely look too far into the future. Sometimes, we plan for a week or a few weeks in advance. We might plan a vacation a few months away because we know that, wherever we are, we can make it work for a short period of time. But we’ve learned that putting things in the calendar is more of a suggestion or a placeholder than it is a commitment.

Most of our plans are short-term plans. We look ahead at the next day or the next week and try to plan our lives. My son’s health is unpredictable. His physical health. His mental state. It constantly changes. The decisions we make any given day, like skipping a nap, can have consequences that change any plans that we’ve had. Extra seizures one morning. An accumulation of exhaustion that we didn’t see building up. We’re adapting more than we’re predicting by adjusting our plan moment to moment based on where he is physically and mentally.

We rarely look beyond that because we have no idea what the future has in store for my son. We still contribute to an education savings account for my son because I don’t want to consider the possibility that he won’t need it. We’ve put off estate and custody discussions because these conversations are impossible and because planning that far out seems futile. Things change day-to-day and month to month so planning for years away seems impossible.

“Life is what happens while you are busy making other plans.” The Allen Saunders quote is often attributed to John Lennon because he popularized it in Beautiful Boy (Darling Boy).

Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we’ll both just have to be patient
‘Cause it’s a long way to go
A hard row to hoe
Yes, it’s a long way to go
But in the meantime
Before you cross the street
Take my hand
Life is what happens to you while you’re busy making other plans

I know the future is going to come whether we want it to or not and whether we know what it has in store for us or not. Maybe I’m trying to give him the best life I can in the present. Maybe we’re just trying to focus on living our lives and taking each unpredictable day as it comes. Maybe I focus on the short-term because I’m too afraid to think about the long-term and what that the doctors think might be in store for him.

We have a long way to go, and it’s a hard row to hoe. But in the meantime, before you cross the street, take my hand.

Happy Anniversary, Epilepsy

Four years ago this week, my son had his first seizure.

Four years.

Almost half his life.

He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

So, Happy Anniversary, Epilepsy.

I didn’t get you anything.

Because I hate you.