in the same boat

A brown-haired boy in the back of the room raised his hand and said to me, “It must be hard.”

I asked him if he meant hard for me or for Calvin. He answered, “Both.”

“Yes, it is hard,” I replied, trying not to lose my composure.

I mentioned my sleep deprivation and the difficulties we face because Calvin can’t speak. I explained that it was hard seeing my son suffer so many ills and have seizures and have to deal with so many drug side effects. Then I thanked the boy for his thoughtful sentiments.

The group of students was the third to attend my presentation at the junior high school down the road from our home. I’d been invited back a second year to talk about Calvin and epilepsy and disability on their annual Civil Rights day. This last of three classes had just come from a presentation about the Holocaust given by an eighty-three year old survivor.

For forty minutes each, I projected photos of Calvin on good days and on bad ones, on the day he was born, nestled in his plexiglass isolette and hooked up to C-PAP tubes (continuous positive airway pressure). I flashed shots of my son swinging and smiling and signing for “hug” amidst too many photos of various drugs.

They asked me things like:

What is Calvin’s favorite food? How does he communicate? Is he coming to school here next year? How do you know when he is going to have a seizure? Does Calvin have friends? What does he like to do? Is Calvin your only child? How did you choose his name?

Surprisingly, none of them asked me questions akin to the ones gradeschoolers have, such as:

Do seizures hurt? Can you die from a seizure? Can you have seizures before you are born? Will Calvin ever outgrow his seizures? Will Calvin ever be able to stop taking medicine? What happens if a seizure doesn't stop?

At the end of my presentation, two students, a sixth-grade boy and girl, told me quietly that they have epilepsy. The boy, in appreciation of my talk, gave me a fist bump and a thumbs up.

At one point, someone asked if people make fun of Calvin. I told them that I didn’t think Calvin was teased at school, but that at the grocery store I often see strangers gawk at Calvin and, in the past, I've had to endure scornful comments about my clamorous boy.

At various times during my presentations I spoke of the difference between tolerating people who are seen as different—like my boy—and embracing them. I went on to emphasize how we are all born as equals, how we all come into this world loving, and that only later do we learn to hate and disparage. I encouraged the students to be kind to others who are different from themselves, who might have different hair, different colored skin, an unusual accent, come from another country, live in a different kind of house, wear different clothes, practice different religions or have a disability like Calvin. Regrettably, I failed to include LGBT people and people with different gender identities. Then, I read a favorite quote by Martin Luther King, Jr.:

We may have all come on different ships, but we're in the same boat now.
Read more at: http://www.brainyquote.com/quotes/quotes/m/martinluth132359.html
We may have all come on different ships, but we're in the same boat now.

I went on to talk about advocacy. I urged them to not be afraid to challenge authority, but to understand, for instance, that they or their parents might know as much or more about themselves as their doctors do. I urged them to stand up for themselves and for others, to confront bullies on underdogs’ behalves.

It was at that point when one of the teachers recalled the earlier presentation by the Holocaust survivor. She explained to the kids that if it had not been for all of the wonderful people who had come to his aid before, during and after his torment in the concentration camps, that he might not have survived to tell his story.

I took her comment further, explaining that if enough people had rejected the rumors and lies about their good Jewish neighbors and citizens, had they not feared or had contempt for them, if enough folks had, instead, stood up for them early on, then perhaps there would have been no Holocaust.

Delving deeper, I appealed to the children, telling them that I hoped they would never judge someone simply because they were different. I hoped they would step out of their comfort zone and get to know and embrace people who are different from themselves and that, as a result, they might realize they share more in common than at first glance, and that they’d learn new things and grow and live a much richer life as a result.

Lastly, I told them that if someone complains of being bullied or mistreated, they should listen and believe. I said I hoped that if they heard someone—anyone—talking trash about someone because of their race or religion or disability, for instance, that they should speak up to call out the wrong, and go to that person's aid.

After three hours at the junior high school, I left thinking about the importance of our civil rights and the debates I’d had recently about the Black Lives Matter crusade. I became disheartened recalling the cascade of intolerant and misinformed comments about the BLM movement, which I believe is absolutely righteous and most vital to the health of our nation and our citizenry; if only more white people would get past their self interests, embrace their Black American brothers' and sisters' cause, and jump on board.

I began thinking of the Republican presidential nominee again, and his penchant for for hateful, divisive, fearmongering, accusatory, inflammatory rhetoric. I wondered if Trump has any close Muslim, Mexican or African American friends. I have a hard time believing so.

And then I smiled at the thought of the students and their malleable brains, and the compassion on their faces when I spoke of Calvin and the hardship he endures. I hoped I'd made a difference in how they see unfamiliar others who love and share their remarkable world, and who travel on the very same seas.



  1. Beautifully written, Christy. Thank you for this important work you're doing.