Tag Archives: Down syndrome

Hope For My Daughter, Hope For Myself

When my wife found out she was pregnant with our second child—wow, over nine-and-a-half years ago now—we had the usual expectations, we experienced the usual joys, and we asked the usual questions.

One of those questions was: As a second child, will we still have the same level of delight, celebration, and accomplishment when she achieves all of her “firsts”, just like we did with her big brother? You know: that first word, those first steps, the first day of school, the first time left with kids groups at church, so on and so on?

After we found out she had Down syndrome, many of those questions, and that one in particular, went out the window.

Of course we celebrated every first, because every first was such a struggle—sometimes for her, more often for us—and such a triumph that we couldn’t help but rejoice.

One of the things she exhibits that I am still in awe and wonder of, even to this day, is her ability to approach most all of these situations, including school, and play, and new kids, and new places, with such a sense of enjoyment and unencumbered innocence.

No, it’s not that “these kids are always ssssoooooo happy”, (anyone with a child with a disability is laughing at that stereotype right now), but there is a genuine purity there, untethered by fear, or doubt, or labels, or prejudice.

I hope she never loses that.

If I have a worry for her, as she grows older, especially with the coming move from elementary to middle school, it’s that I hope she never loses that sense of wonder and innocence.

The odds are against her.

Against us.

But here’s the main reason why I hope she never loses that:

To me, what she shows us—shows her peers, shows the world—is what I see as a little glimpse of what heaven will one day be like.

I think the wonder, the awe, the sheer sense of joy in play, in discovery, in interaction, regardless of what it is she’s doing or who she’s doing it with, is exactly what I hope to feel one day in heaven, without all the burdens of this world. Without the bias, without the judgment, without the worry, without the stress, without the hatred and pain and intolerance and suffering and class warfare and jealousy and pettiness and sorrow.

Without all that, what’s left?

Pretty much all that remains is what I see in my daughter’s eyes as she runs off to Kid’s Quest every Sunday, as she spots a tire swing on a playground, as she sees another girl about her age in the Missoula KOA pool on a mid-summer’s afternoon, as she grasps a bowl of frozen blueberries in her tiny hands and runs off to watch Frozen for the 4,786th time.

Again, I hope she never loses that.

And I hope, one day, I find it.

Oh, I know one day I will, but I really hope to find it before that time. Before I cross over some ethereal plane of existence.

I hope it doesn’t come to that before I realize the simple pleasure of a perfectly made salsa; the stunning scenery of a road trip; the otherworldly colors of a sunset—ANY sunset; the soft skin of my wife’s cheek; the look of conspiracy on my son’s face as I say “yes” to something that sounds really cool and just a bit dangerous.

And the awesome power and stunning beauty of lightning!

How about you? What’s your joy?

What is it that, when you think about it, or are in the midst of doing it, that little voice inside your head says, “Man, I wish it could be like this all the time”?

And my next question would be…what keeps it from being so?