A Generous Story?

Who? How much? When? We sat, side by side, a little numb to the information. The prognosis fuzzy, unanswerable. Stretched between needing support and protecting the one that came from us. The landscape of our dreams transfiguring before our eyes. How do we share that with others? Everyone had so much hope, so much confidence, that the tests would be “normal.”

We wondered, together, who, if anyone, do we tell? So many know that we were anticipating these results. This very space that you’ve opened, I started it to share our journey. In sharing I’ve wanted to help. But what if by sharing, I can’t protect the one whose very life and being I’ve been asked to steward? Vulnerability is so raw.

The diagnosis is rare – one in a hundred thousand rare. Good information scant. And anyone with Google and the right search word could dissect every aspect of his syndrome. And him. This baby will tumble into a boy and that boy will lengthen into a teenager and then that young adult will transfigure into a man. Shouldn’t he decide who to tell. How much to offer. When to time it?

We look at the name given to his syndrome, nothing more than a few letters and numbers strung together, only meant to help experts identify his genetic structure. No meaningful name to write. And so many ways for this unique make-up to express itself in him. An unfinished story that God is unfolding.

And we want to share this story, but in a way that honors Reed for the person he is and the one he will become. So we leave the name unwritten right now. Leave the picture a little unpainted as we wait to understand who he is. We are humbled by how many of you are patient with us as we figure out how to be generous with our story and how to respect a little boy made in God’s image.

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