Tag: parenting

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.

Poopsicle, Popsicle, Dreamsicle

Since my son was little, we have had a tradition of ending our nights by talking about our days. It started as “poopsicle, popsicle, dreamsicle” but it has evolved over the years to include a few additional reflections:

Poopsicle – Something bad that happened today

Popsicle – Something good that happened today

Dreamsicle – Something you want to happen

Grateful For – Something you are grateful for

God Bless – Someone you are thinking about that could use your thoughts or prayers

Mistake – A mistake you made today (because mistakes are opportunities to learn)

Proud Of – Something you did today that you are proud of yourself for

Each night, we would take turns going through the list. But for the past few months, I haven’t been participating. My wife has been reading with our son before bed and the reflections became part of their routine. Instead of joining them, I busied myself by cleaning the kitchen or working on the computer.

I don’t remember exactly when I stopped. It could have been near the end of my last job when I was so unhappy and stressed and just wanted to get out. It could have been after I started my new job because I was so exhausted trying to prove myself to my new team. It could have been any number of times when life got hard and complicated and fast.

Ironically, it was probably when I needed to reflect the most that I stopped doing it. I didn’t just stop reflecting with my family, I stopped reflecting at all. I didn’t notice the day, I survived it. I spent all my energy moving things forward without appreciating where I’ve been or what I’ve done. Instead of acknowledging the really hard things and being proud of myself for having done them, I moved on to the next thing on my endless list of things to do.

This Father’s Day, my wife surprised me with a special Japanese tea ceremony. It was a beautiful ceremony in which a teacher described each step as it was demonstrated by his students. He described the ritual of serving the tea, but also introduced a mindfulness aspect from the perspective of the guest. During the ceremony, the guest would inspect the different things in front of her. She would lift the bowl and examine every side of it. Because this moment may never happen again. She may never see the bowl again. She may never see the host again. So she was appreciating this moment and these objects and being mindful and present in the moment.

Three minutes into the ceremony, I caught myself wondering how long we had been there and how long we had to go. But after awhile, I settled in on the experience. I settled into the space. I noticed the way the host and assistant walked in and out of the room. I noticed how they folded the silk cloths they used to wipe down the bowl. I noticed the way the guest turned the bowl to examine it. I noticed my son watching the ceremony.

Drink your tea slowly and reverently, as if it is the axis on which the world earth revolves – slowly, evenly, without rushing toward the future. ~Thich Nhat Hahn

It was as if the world slowed down enough for me to see what was happening. Instead of moving on to the next thing, I was seeing the things that were in front of me. I wasn’t thinking about my to-do list. I wasn’t thinking about work. I was there. I was present. I hadn’t felt that way in a long time. It felt good. I missed feeling that way.

I have gotten into the habit of doing instead of experiencing. It’s easy to measure a day by how much gets done because there is no end to the list of things to do. But that keeps my eyes focused on the horizon instead of the ground beneath my feet, or noticing the footprints I left behind me, or being aware of who is at my side.

My son has a serious medical condition that can change our lives or take away his without warning. We are not guaranteed any moments beyond the one we are in. I want to be better and being present in it with my family. I want to share these moments with the people around me. And I want to reflect on them and acknowledge what they mean to me. Because I want life to be about more than checking things off an endless list of things to do.

That night, I laid next to my wife and son as we put him to bed. “What’s your poopsicle?”, I asked him. Then, we took turns reflecting on our day.