Category: parenting

Giving Back And Getting Back

Recently at work, I had an opportunity along with a handful of colleagues to speak to a group of high school students with special needs. The goal was to share our experiences working at a large company, to talk about our background and how we got to where we were, and to highlight practical skills we thought helped make us successful.

When I introduced myself, I mentioned that my son also has special needs. I could see that look of connection on the students’ faces. When I shared that he has epilepsy, one of the students in front interrupted me. “I have epilepsy, too,” he said. “What kind does he have?”

“Generalized seizures, ” I replied. “Refractory…we’ve tried a bunch of different medications but he still has seizures.” The young man paused, then mentioned his current medication. I gently interjected and suggested that we talk more after the other speakers. He smiled and nodded, and I continued.

The kids were great. They were attentive. They were curious and asked questions. And they were gracious. After each speaker, the students clapped enthusiastically.

After all the speakers had gone, the floor was opened for questions. Two of the students asked technical questions about platforms and architecture. Others asked questions about our company and our products. They asked what kind of jobs our company had. And then one student asked if our company would hire someone like him…someone with a disability.

The student who asked it was one that I had chatted with before the event. He asked about how much math I needed to do for my job because he wasn’t that good at math. I am surrounded by people with PhDs in math, I thought, but I told him that it depends on the type of job and that our company has a lot of different types of jobs. Now he was asking if our company would consider including someone like him. Someone like the other kids in the room. Someone like my son.

I didn’t know how to answer his question so I rattled off a list of facts about my company. “Well, our head of accessibility is blind,” I stated. “And I know other people in the company who have other conditions that don’t prevent them from working here.” I mentioned our employee resource groups, including our “Abilities Network” that builds a community around special needs, except I used the word “disabilities”.

That was when the student with epilepsy spoke up. “They’re not disabilities, ” he said. “People like us, and people like your son, we can do anything we want to do.”

I stopped talking and I listened. I listened to this teenager as he spoke directly to me about a hopeful future for my son. It was as if he saw right into my fear about the future and wanted to let me know that it was going to be okay. It took me so off guard that I had to struggle to keep my composure.

When he was done, I thanked him. Because I know that everything he had said was a gift for me. A gift to take home to my son. A gift to carry forward in my life. A gift to share with the people around me.

I walked into that room to give a piece of myself to those students. I wanted to tell them about my story and my son’s story to connect with them and to inspire them. I didn’t expect to get anything in return, but I got back as much as I gave.

Maybe more.

Some Other Beginning’s End

It’s already February.

It feels like we skipped January, which I wouldn’t have minded.

January sets the tone for the year. We treat it as a fresh start. We make resolutions to change things about ourselves that we want to improve. And then we endeavor to build up enough momentum to carry those changes through the year and through our lives.

If we’re still exercising in February, or eating better, or not drinking, then there is a better chance that we’ll be doing the same in March and in December. But, inevitably, by the second month of the year, the gym is starting to thin out. There is a pint or two of ice cream in the freezer and a box of wine on the counter.

I was hoping for a better January. My son had VNS surgery in December. While I knew it would take months or a year to see if it would work, January felt so much worse. We often counted the time between seizures in hours, not days. We were reminded every five minutes when the VNS went off and tickled my son’s throat and changed his voice that we were still at war with a relentless enemy that takes and takes from him, leaving him tired and insecure and behind.

January didn’t even give us that first, hopeful week. It strapped us to the couch, shoved a ladle full of ice cream into our mouth and poured the box of wine down our throat on the first day. “Just so you don’t get any ideas that this year is going to be different or better, ” January said, smoking a cigarette with its foot on my chest.

Seneca said, “every new beginning comes from some other beginning’s end.” I’m trying to find a new beginning in all of this. But to do that, I need to find an end, but there never seems to be one. We turn the page of the month, but it’s the same calendar with the same theme that has been hanging on the wall for the last five years.

The days of the month are color-coded to capture those when my son had a seizure. January is covered with the little yellow squares of activity. February isn’t starting out any better. It’s hard to look at the calendar and imagine that it is ever going to end or that we’re going to get that new beginning we’ve been hoping for.

But Seneca also said, “Begin at once to live, and count each separate day as a separate life.” Maybe I’m thinking too “big picture”. I’m trying to apply “before” and “after” to months and years instead of to each day. Each day when my son has a seizure ends and a new day begins without one. Each day has the potential to be the day that he doesn’t have a seizure. Each day has the potential to be the one when things begin to get better.

If it turns out to not be that day, I’ll try to remember that that day will end, too. And when it does, a new one will begin. I’ll try, but it won’t be easy. Because even though I’m trying to be grateful for each day and to see its potential, I’m still longing for the day when things finally get better for my son. Because even if it’s not possible, that’s the new beginning I still really want. But for that to happen, these relentless seizures and side effects need to end.

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.