Four Years Later, Coming Clean

What do you do when you’re stuck between two goods, like say protecting your first born or advocating for him, and to do one means you do the other less well? I’m standing at this crossroads but know I can’t stay much longer.

August marks the fourth anniversary of Reed’s diagnosis. With that first news, Ben and I sat on our basement futon, and decided to let Reed’s story really be his own, to give him full ownership and authorship of the story he chooses to tell. And as such, we decided to not publicly disclose his precise diagnosis. Four years ago I wrote these words to explain why naming his disorder was something I couldn’t do: The details are too new, the news still too raw, to share more specifics. And a few weeks later I solidified my stance:

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.

Those are words written as a bandage over a mama’s bruised heart, one that wanted to maintain control over people’s reactions and responses to something so out of the ordinary. Polite words that really meant don’t you dare misjudge my boy. Camouflaged words that let me maintain an illusory sense of control. My kid, my choice. Don’t question me, ok?

All these months later, I’ve become practiced at answering “So, what is his diagnosis?” I’d blow through that question with a simple “it’s just a string of letters and numbers” and then explain he has hypotonia and apraxia. This seemed to satisfy most people who asked and it became a comfortable and familiar answer.

But. My kid needs more than my defensive protection and my comfortable, familiar answers. He needs advocates, and we’ve found important allies in The Focus Foundation, a non-profit, research group whose mission is “dedicated to helping children and families affected by X & Y variations,” a category that Reed’s diagnosis falls under. To be precise, Reed has three more chromosomes than the typical person, and boys with his diagnosis are nicknamed 49ers. The scientific label for his disorder is 49xxxxy.

I realize that most people have not been holding their breath waiting for this less than grand announcement, and as my Uncle Joel would remind me, no one thinks about any of us nearly as much as we think they might. But, I actually hope that you’ll think of our family and kiddos like Reed more now because I have found that advocacy and the important research done through the Focus Foundation are vital for Reed. But if I’m intent on warding off possible but imaginary ill-willed people, I can never be the help to my own family and others like us if I’m unwilling to share our family’s story.

I still believe, in part, the words I wrote four years ago. This is Reed’s story. But I’ve come to understand that we can honor him by being the voice to his story right now. Really his story is just as much our family’s story, and that story is only as powerful as my willingness to use it for greater good.

If you’ve ever wondered how you can help our family, I’d direct you to this, a page that tells you how you can support The Focus Foundation. The easiest way to contribute is by

1. Clicking this link: https://smile.amazon.com/
2. Searching for and selecting “The Focus Foundation Inc” as your charity of choice
3. Then when you shop through https://smile.amazon.com, Amazon donates 0.5% of the price of your eligible purchases to The Focus Foundation.

This kind of financial support enables the foundation to provide, among other things, scholarships for families (of which we’ve been beneficiaries) to attend the yearly 49ers conference, an amazing opportunity to meet with other families affected by this disability, learn about current research for this disorder and its related challenges, and meet with specialists who study this group of affected boys.

To live in a place and in a time where this level of research and help is possible is astounding. It really is daily grace to me. I’m excited to be coming clean with the whole world so that children like Reed, supported by The Focus Foundation, will succeed beyond our wildest imaginings.

Advertisement