Early Mornings And Coffee Spoons

It’s still dark outside, but I’m at my usual station, too early in the morning, writing. My son had a short seizure that woke me up. My wheels started turning and I couldn’t turn them off. The upside of him sleeping in our bed is that I don’t have to lose sleep wondering if the monitor is working. The downside is that his seizures are right in front of me, and its impossible to go back to sleep once they are over.

At some point, he isn’t going to be able to sleep with us. He’ll be too old and too big to fit in our bed. If there were ever a reason to wish him to remain seven forever, that might be near the top of my list. Coming in a close second is the fear that his condition is going to get worse as he gets older. Our doctor is concerned about what happens at puberty. It’s another stage of brain development where seizures can change or be more severe. I thought it was impossible for things to get worse. Apparently, they can.

Today, he’s only had epilepsy for a fraction of his existence, but by then, he’ll have had epilepsy for most of his life. We’ll long have lost count of seizures, and meds, and have long forgotten about the time before this began. It will be all we know and all he can remember.

This is what happens to my unrested brain so early in the morning. It gets pulled into the stream and dragged wherever the current takes it, and there is no safe shore for my thoughts to land. The present is filled with seizures, medicine, side effects, and, presently, a lack of sleep. The future has too much uncertainty, doubt, and fear. The past is too painful. Remembering a time without epilepsy is getting harder and, if I try, it makes me sad. What we saw for our lives back then was not this life.

My coffee sitting on the window sill does little to pull my unrested brain back to happier thoughts. But as I stare out onto the dark street, I can at least resist the urge to measure our lives with coffee spoons, in careful doses or as an observer. There is so much left to our journey, so much active living to do and so much of it is unknown that dwelling in any one place is fruitless toil.

Instead of focusing on a when, I try to focus on my what. My what is my family that is together and, in many ways, stronger than ever. Most days are hard, but there is always something to be grateful for. We have a nightly routine where we call out something that we’re grateful for from our day. Even if we skip the rest of our routine, that one gets done. Because those things for which I am grateful are worth measuring, and I want to focus on adding as many of them as I can to this life.

On that note, I’m going to sneak back into bed and lay next to my family. I’m going to do everything that I can to settle my mind and be present in that feeling of being together.

And, maybe, I’ll actually sleep.

Planning For An Uncertain Future

I slid my finger up the length of the envelope, tearing it open along the spine. Pushing the sides apart with my thumb and finger, I reached in and pulled out the folded piece of paper. I lifted the top section above the crease to reveal a bold, red logo and the words “To the parents of…” introducing the rest of the text.

The form letter listed one of my son’s prescriptions at the top and used phrases like “convenience and cost-saving” and “long-term prescriptions”. After I finished reading the letter, my eyes retraced their path and scanned the paper, searching for the words that my mind refused to process the first time around: “long-term”.

“Long-term.” I raised my head as I lowered the letter down to my side. “Long-term.”  The words echoed in my head. “Long-term.” My mind ran through inflated synonyms. Never-ending. Without end. Constant. Permanent. Forever. My son would be on these medicines for the rest of his life. The letter became impossibly heavy and pulled itself from my fingers. It landed on the floor without a sound.

When my son was two, long before his first seizure, we set up an educational savings account. It’s one of those investment accounts that provides interest-free growth and tax breaks along the way, but the money must be used for college. We’ve been funding the account ever since, even after my son started struggling with memory recall and attention. He still does and, if things get worse or if his condition changes, he may not go to college. I struggle to acknowledge that possibility. I should look at other options that hope for the best but aren’t penalized if things don’t work out, but I feel like I have given into his condition. That his epilepsy would have somehow won and stolen my son’s future.

Looming larger over me is the idea of what would happen to my son if my wife and I passed away or were unable to take care of him. Our parents are at an age where caring for a child isn’t an option. Before he had epilepsy, we had asked friends in Colorado to care for him. But now, I look at how complicated and hard life can be dealing with epilepsy. I imagine the commitment to care for him as a huge burden that I can’t bring myself to ask anyone to bear. I need to write a letter to our friends and ask if they would be willing to care for a beautiful, amazing child that has epilepsy but I can’t. I can’t risk the feeling of rejection, of rejecting my son, if they say “no”. And I can’t face a world where that’s all I hear and where my I feel like I will be leaving my son alone.

Until I do, we’re sitting in this terrible space where nothing is decided and where everything is at risk. Instead of being brave, of doing what needs to be done, I have been frozen. Being responsible feels like an impossible task when it involves admitting to the cruel condition that my son may live with forever. I’m frustrated not only by my inaction but because I know the worst outcome would be for someone else to make the decision for me. It makes me feel like a terrible parent. It makes me feel like I am letting my son down.

It’s hard to figure out how much hope to have, how much reality to let in, or how much to commit to the possibility that there is an equal chance that things get worse as things getting better. It’s not that I thought my son would be cured. It’s not that I didn’t think that he would be on these medicines for the rest of his life. But I also didn’t actively think that he wouldn’t be cured or that he would have to stay on his medicines for anything longer than today. I didn’t open my mind to either possibility. Instead, I kept my head down and tried to live in the present without looking too far into an uncertain future. Reading the letter reminded me that my son’s epilepsy and his medications will exist beyond today, whether I wanted to face the idea or not.

The reality is that these types of things will continue to weigh me down and keep me feeling stuck until I take action to remedy them. The best thing I can do is to acknowledge that the future is uncertain and to take control of the choices in front of me.

Maybe facing the situation will help. Maybe writing about it will spur me to action. Maybe the new year will renew my strength that last year depleted.

I picked the letter off the floor and put it on the desk in the pile of things that I need to do. It’s time to be brave. I pulled out the chair and sat down in front of the computer and started drafting a letter of my own.

“Dear friends,” it began.

The Internet Is Not A Doctor

My son’s epilepsy diagnosis came with words that I didn’t know. Status epilepticusRefractory. Subclinical. I had a lot of questions about these words and what they meant for my son, so I turned to the same place I always turn when I have complicated medical questions.

The Internet.

Sure, our doctor would also have been a good source since, usually, she is the one using the foreign words. But being in the doctor’s office after a long exam and a long day is overwhelming, and being a web-savvy-engineer-type, the Internet is my happy place. Besides, nothing bad every happens on the Internet.

Turns out, that’s not true.

I’m one of those people who search for symptoms on WebMD, the place where a stuffy noise quickly escalates from common cold to incurable cancer.

epilepsy dad webmd research

Searching for the words surrounding my son’s diagnosis quickly leads, after a few clicks, to truly terrible conditions, none of which could my son possible have. But the seed of despair gets planted and, after a few more clicks, somehow his epilepsy also gave me an incurable disease. I don’t (as far as I know) have a disease, but I do have cyberchondria (one of my new, favorite words).

Hello, Internet, my old friend. I’ve come to search WebMD again.
~ Simon and Garfunkel (98% sure)

Once I was able to tear myself away from WebMD, I pulled up Google. I had more questions that weren’t related to solving the riddle about why my son had epilepsy but, instead, were about what his life would be like with epilepsy. Since he was a baby, he wanted to be a hockey player. I searched for “hockey players with epilepsy”.

google hockey epilepsy

The results that came back were not promising. Wait, I thought, can he even play hockey with epilepsy? Another Google search.

google hockey epilepsy

More unsatisfying answers just led to more questions. Soon I found myself sucked down another rabbit hole, this one less about clarifying a diagnosis and more about what type of possible future my son would have, even before we knew enough to even guess at what his future would be like. Looking at my browser history, it revealed a pattern of creating limitations in my head about what my son could ever hope to accomplish. Worse, I was arming myself with information that I could use to project those same limitations on to him, which is the opposite of what my search was meant to achieve.

The Internet is an amazing tool. It has the power to connect people, to share information, and maybe one day to help find a cure for epilepsy. It can inform patients and parents afflicted with a condition and provide a common vocabulary for the exchange of ideas. But it can just as easily overwhelm and do more harm than good, particularly with a new diagnosis and especially when the cause of the condition is still unknown.

My excursion to the dark side of the Internet left me with these two thoughts that I try to remember when I find myself lost on the information superhighway.

The Internet is not a doctor.

In the future, everything is possible.