Griffin, a Diagnosis, and the Gift of New Eyes

When I tell people about our youngest son’s Down syndrome diagnosis, many people say, “I’m sorry.”

They don’t know what else to say.

But there’s no need to be sorry. He’s alive and well, we love him, and we’re glad he’s here.

And yet, I still understand and appreciate it when someone says, “I’m sorry.” Because even if they have never had a child with Down syndrome—or any other kind of condition that leads to developmental delays—they have some intuition that it’s going to be hard.

We all do, because we have lived in this world.

We all intuitively know that the world is not built for people like Griffin. We know it’s hard to always see doctors, and that some people will treat him badly. His life—and ours—won’t follow the “normal,” well-trodden path and that will, at times, be very hard.

The past eight months have already given me a preview of this tension: between who Griffin is and how the world is built.

Griffin is normal—just somewhere else on the wide bell curve of what life looks like. He was conceived and born as any other child. We made no alterations to him—he’s here as God made him.

Yes, he has a diagnosis. But that doesn’t mean he’s broken. He isn’t defective—he’s simply different. Just like kids with cystic fibrosis, dyslexia, deafness, or any other “diagnosis”—these kids were simply born this way. That is normal, even if different.

And this goes beyond medical diagnoses. Some kids are taller or shorter. Some are gay or straight. Some are different levels of athletic, artistic, or scholarly. All kids are different, on a boundless amount of dimensions.

All of these kids—and all of us as adults—fall into the category of “we were born this way” in one dimension or another. Made by God this way, by no choice of our own.

So there are people just born a certain way, and yet, we also intrinsically know that those same people will have to go through inevitable hardship because of how they were born interacts with the world we live in.

But it’s not all struggle. Robyn often reminds me that some things may actually come easier for Griffin—like kindness, joy, and forgiveness. He has this lightness of being I can’t explain, but I see vividly.

Still, some of the hardship just doesn’t seem right—for Griffin or for anyone else who was “born this way.” Especially the hardship rooted in having their needs overlooked or unconsidered.

Those needs show up everywhere—from schools and playgrounds to healthcare, websites, public parks, airports, road signs, and even neighborhood newsletters. These choices shape whose lives get to flourish.

Because on a planet with over 7 billion people and in a country of over 300 million, there will inevitably be so many differences and spectrums.

Every day, in small and big ways, we make consequential choices about who’s in and who’s left out.

Whose needs are considered and whose aren’t? Do we only build for people like us, or do we stretch to include those we don’t yet understand?

Of course, our lives and our world have trade-offs. There isn’t unlimited time or money. But there are a lot of smart people who care, who have time and a willingness to innovate to break trade-offs. And in many cases, there’s money we’re already spending that could be spent differently. We just have to see with different eyes.

Playgrounds are a good example of this, and something I see with new eyes now. There are ways to make playgrounds so that many different types of kids can play together. You just have to make different and creative choices about materials, structures, and things like seats on swings.

I see so much more clearly now—even if in a very small way—the ways in which people born “normally,” but differently in a particular kind of way, are overlooked because they are easy to ignore, or are less “squeaky” than I am.

And it doesn’t sit right with me. But I do get it. The more people we include, the more complex our decisions are. We have to be smarter and more creative to make a website that everybody can use well enough, compared to just what the majority can use.

But that still doesn’t sit right. I am not God, after all. Why do I get to decide who’s worthy, important, or loud enough to be included? I may not be able to break every trade-off and create some sort of prosperous utopia that works brilliantly and cheaply for everyone. But it doesn’t seem right to me to not even try—before overlooking, whether deliberately or simply because I’ve allowed myself to remain ignorant—the needs of someone in need. Which, aren’t we all, in some way or another?

Griffin’s Down syndrome diagnosis has given me the eyes to see this profound choice—who’s in, who’s out—more clearly. And more importantly, it gave me the eyes to see that I was more ignorant of my own ignorance than I thought I was.

But in addition to a realization about justice, Griffin has also helped me realize something about joy.

I can’t explain it, but Griffin has joy. And his joy honestly feels different. I don’t know why—whether it has to do with Down syndrome, or if I’m blinded by the fact that he’s our last child, or what. But his joy is different in a very special way.

Which is to say, the world would lose something extraordinary if he had never been born—or if his gifts were overlooked and never nurtured.

And not just Griffin. Every child—born “different” or not—has something extraordinary within them. Every adult too. When we overlook entire groups of people, we rob the world of that brilliance.

So, in addition to not being able to accept the injustice of deciding who’s in and who’s out, who am I to rob the world of these extraordinary things? The comfort of my own ignorance is certainly not more valuable than that.

Being Griffin’s father has already humbled me. Seeing the world through his eyes has taught me that I have a long way to grow in two important ways.

First, I ought to stretch whose needs I consider as widely as possible.

Second, I should assume I don’t understand other people’s needs and gifts as well as I think I do.

So instead of “I’m sorry,” after someone shares a tough reality, maybe it’s better to say:

“I honestly don’t understand what you’re going through. How are you all doing?”

Maybe that will open my heart even wider to understand, love, and include them.