The Sleepover

A few weeks ago, my wife and I spent our first night away together since my son was born. Individually, we’ve been away. I’ve gone on work trips, and my wife has gone to visit family. But we’ve never both been gone for the night and let someone else watch our son.

In some ways, it wasn’t practical. We don’t have family that lives near us, so leaving him at grandma’s house wasn’t an option. But there is also the reality that our son has seizures almost every night. Spending the night isn’t just about giving him a place to sleep. It’s an active task that involves monitoring him and responding to seizures.

Our son is never alone. Even sleeping in his bed, we have a camera pointing at him that I watch all night long. When he is in his room playing, we keep a cautious ear listening to what is going on. He receives individual attention at school, and his nanny is substituting for us when we aren’t there.

That level of involvement is not something that transfers well to someone unaccustomed to that level of care. It’s not something that lends itself to people lining up to take on the responsibility. It’s our every day, but it’s not theirs. I can imagine the conversation with the parents would go something like this:

As you know, our son has epilepsy. And it’s very likely that he’s going to have a seizure really early in the morning. Probably more than one. The seizures are likely going to wake and frighten your child. And you’ll need to help my son reorient to the world as he comes out of it and make sure he doesn’t fall out of the bed or try to walk around and fall down your stairs.

[silence]

If the seizure lasts too long, his rescue medicine is in his overnight bag. The good news is that we haven’t had to use it in a while. The bad news is the delivery mechanism.

[silence]

Also, you’ll need to make sure he doesn’t eat or drink anything we don’t send with him. He’s on a medical diet and if he eats anything else he could start having seizures.

[silence]

Oh, and don’t let him stay up too late. The more tired he is, the more likely his is to have seizures.

[silence]

His medicine is also in his bag. Make sure he takes all of his pills because if he misses any…you guessed it, more seizures.

[silence]

Other than that and, I guess, his depression and behavioral side effects of his medicine, I think you’re all set. Ok, goodnight!

[overwhelming silence]

I couldn’t burden someone with that responsibility because nothing could prepare them in one night for what has taken us years to adapt to. But I would also spend the night worrying and wondering. It wouldn’t have been a good night for anyone involved.

I really struggle with the idea that no one else can or will want to take care of our son. But at the same time, I find reasons why no one else should. They don’t know my son. We can’t prepare them for what it is like. What if something happened?

In the end, our nanny provided the perfect opportunity. She has been working with our son for over a year. She’s seen his seizures during his nap, and she’s helped him manage his behavior and emotions. We trust her to keep him safe. When she agreed to an overnight stay, it felt right.

Even though it was only one night, it opened my eyes to a new possibility. I’m not going to say that I still didn’t worry or wonder. But coming from a place where I didn’t think it would be possible at all, that first night was huge. It may not have addressed all my fears about the future, but it was a good first step.

 

The Art Of Disappearing

I’ve perfected my ability to disappear. Only, it’s not a magic trick. It’s the way I have trained myself over the years to deal with difficult situations.

I developed this ability at a young age. For most of my childhood, I navigated the world alone. I figured things out by myself. Sometimes, I figured out really hard things and I was rewarded with praise that reinforced my growing belief that this was the way to operate in the world.

I wasn’t quite a loner. I had friends, but I found comfort in being alone. Friends were for making mischief and playing sports. But when it came to solving problems, I worked alone, whether the problem was a difficult project or the increasingly complex emotions that come with growing up. I solved those, too, internally, in my way, and away from everyone else.

Again, I was rewarded with harder projects and better opportunities. At the time, I saw my detachment from other people as an asset because it made it easier to shut them out when I faced a problem. But as the matters of the heart got bigger and more complicated, I started to put those matters on a shelf and not deal with them at all. I would find distractions or try to solve other people’s problems so that I didn’t need to face my own. Even then I was rewarded by better opportunities and more people coming to me for help, feeding my ego if not my soul.

But in the last few years, it became clear that what got me here was not what was going to get me there. Where I wanted to be. Who I wanted to be.

I had this moment of clarity after taking a leadership class that included a behavioral assessment. When the results showed that I was a thinker, I beamed with pride. It described me perfectly, solving hard problems, concentrating on my thoughts. But then the instructor talked about how thinkers are perceived by the people around them and I felt a wave of reality crash into me.

The thing about disappearing is that it leaves the people around me alone. It leaves them wondering where I am. It leaves them wondering if they are important to me. It leaves them disconnected in times when being together…being connected…is what is most important.

Clips from my memories started playing in my head. My wife and my friends told me in their own way that they felt alone or wondered whether they were important to me. Bosses wondered if I cared about the project or the job. And my response to these big questions was to disappear so that I could think and process. I thought about how I would feel if someone did that to me and it made me sad. I thought my wife as we watched our son get poked and prodded and seize and as we listened to doctors tell us more bad news. I thought about how when she turned to me for comfort or connection how I wouldn’t be there because I would be off trying to deal with it by myself. I felt sick.

What got you here won’t get you there. ~Marshall Goldsmith

It’s not easy to face the realization that such a core part of who I was had such a negative impact on the people around me. It’s even harder to change more than forty years of programming. But there is no question in my mind that it needs to be done.

Even with the small progress that I have made, I can see changes in my relationships. I may not be able to stop myself from disappearing, but I feel it happening so I tell the people around me so that they know I am still there. I’m more aware when I am in that place and it’s less comfortable than it was, so I don’t stay there as long. I’m getting braver and facing challenges instead of avoiding them. Most importantly, I’m starting not to do it alone. Because no one can. And no one should.

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.