The Boy Full of Joy

World Down Syndrome Day is celebrated on March 21 every year. This is symbolic: Down syndrome is the name we give when a person has a triplication of their 21st chromosome—hence the date, 3/21.

I knew none of this a year ago. Because one year ago, we had no diagnosis. We just had a sleepy kid with low muscle tone, who was born bravely and in a hurry.

He had three older brothers who adored him from the minute he was born, just down the stairs from their room. We gave him a name—Griffin—and with no diagnosis, no other “name” was needed.

Learning that there was a World Down Syndrome Day was fun and gooey at first, and then it felt like a moment of drowning.

I am finally beginning to let myself think about how hard Griffin’s life will be. He will spend more time in doctors’ offices than the rest of our family combined, and he may have already. He will face discrimination and be overlooked—by companies, schools, governments, and maybe even by some in the Church.

I don’t even know what language I’m comfortable using, but he does have “special needs,” and plenty of people who don’t know his light and inner grace firsthand will think treating him fairly is just too much work.

And, most darkly, there is the question of his lifespan. The thought—a cold, real, possibility—that I will outlive Griffin is demolishing. Knowing that despite medical advances that happen during his life, Robyn and I may have to bury our son—that our big three may have to bury their little brother someday—is enough to break a man where he stands.

Writing and reflecting is perhaps the only way I know how to put myself back together, so that’s what I have done.

I have not been able to stop thinking about two very difficult questions:

What makes a good life? Who deserves one?

What makes these questions difficult is not the answers, but the sacrifices the answers require.

A good life is pretty simple. It does not take being a multimillionaire.

It’s a place to call home. To be free and have agency in what happens to us. To love and be loved. To be able to learn and create. To care for one another and be cared for. To feel relatively sure you have a meal coming, and medicine when you need it. To be able to sit under a tree and pray. To have friends.

We all intuitively know this. We already know what makes a good life.

Before Griffin’s diagnosis, I believed that everyone deserved at least this. And that belief implies sacrifice. For everyone to have this, it know it takes paying taxes. It takes volunteering and looking after your neighbor or the other kids on the block, for no reward. It takes giving away your knowledge for free. It takes participating in civic life. It takes apologizing for mistakes and learning to be kind even when you’re having a bad day.

These, and more, are really hard sacrifices. And I have believed in making them and have tried to do so, however fallibly.

But now, for Griffing, I depend on everyone else to believe this too. Because he does have “special needs,” and I can’t fulfill them all—even if I were the wealthiest man in the world. It is a feeling of nakedness I would never have anticipated, but I have no choice but to place myself and Griffin in the care of others. I need others for him to have a good life.

Now, I can’t just believe that everyone deserves a good life. I can’t just be a small beacon that nudges the culture towards these sacrifices, without much consequences if nobody else cares.

Now, I have consequences. For Griffin to have a good life, others have to believe he does, too.

Now, my son’s life depends on others also believing in this vision of what a good life is, and that everyone deserves it—even if their needs are more “special” than someone else’s.

What I now depend on—other people’s generous and righteous beliefs—is what I probably have the least control over in the world.

When I was young, my dreams were so vivid and noble.

I wanted people to get along. I wanted to throw parties where other kids at my high school didn’t have to drink. I wanted to help people make their nonprofits effective. I wanted people who were excluded and misunderstood to be included. I wanted to write plays and stage them for free in public parks. I wanted to invent something that fixed something nobody else saw. To make it so that work didn’t have to suck, and to make government agencies super effective and virtuous. I wanted to comfort friends when they were sad and stand firmly beside them to witness their joy.

These were my dreams. deep down, they still are.

But as I’ve aged, the weight of responsibility has left me groaning. Bills. Taxes. Feeling like selling books is the only thing that justifies the time I spend writing. Hustling. The cost of organic eggs. Raising good kids and being good at my job. You know, grown up stuff.

All these things burn up all the oxygen the dreams I had as a boy need to keep breathing. These dreams have been living in thin air for so long, I wonder how long they’ll last. And now, on World Down Syndrome Day, the weight of responsibility felt at its peak.

But that boy—full of joy and optimism, untethered by responsibilities, perfectly content drinking cheap beer—is who I still am. Under all the armor and rain jackets, I’m still that guy who has faith that his dreams and sacrifices will be met with an outstretched hand by compassionate and generous strangers.

I don’t need to become him again. When I take all the heavy rocks out of my backpack, I am him. I am still that boy full of joy.

That guy is who my sons are mirroring when people say, “they’re just like you.” That guy is who they need. That guy is who my neighbors need.

That essence of that guy is what Griffin got in not one, but maybe three or four full measures. Even when he is ill, joy pours out of him by the bucketful. He may have needs that only about 1 in 700 people have, but his gift is also that rare, at least.

That gift of joy—whether it comes from his extra chromosome or not—is the spark for me to be that boy full of joy again, who dreams of that a good life and believes that everyone deserves it. Griffin’s joy sustains my faith that other people believe it too.