The Mantra That Gets Me Through Difficult Days With My Son’s Rare Diagnosis

Most people don’t know what to say when they discover you have a child with a rare diagnosis, and the fact is I don’t talk to most people about it (as odd as it is as this is open for anyone to read).

But in the wake of A’s diagnosis with cri du chat syndrome, I really, adamantly didn’t talk to anyone outside of my wife those first few months. Too much confusion in me. Too much rage. Too much of a chance for the short fuse in me to be lit. And I didn’t want that, and I was sure that they wouldn’t want it either.

I caught a few of the clichéd sayings, but tried to ignore. I would do almost anything I could not to lash out; I buried my feelings in myself.

Then there was my Uncle Mike. He invited me to dinner. I gave Uncle Mike the exception. We sat at a corner booth in an Applebee’s of all places to discuss the struggles of life. Mike gave me a few pieces of advice then. One, he said, was when people give you the empty platitudes, just to smile and nod and walk away. Secondly, he said, some people say, “One day at a time.” That’s good, but he said on a bad day, he would go:

“Fifteen minutes at a time.”

It is a mantra and practice I have adopted on difficult days. Just try to get through the next 15 minutes, then the next 15 minutes. Maybe eventually the next hour. You think about the future, and you can be beyond overwhelmed. You think about the present, and you can feel the same way. Just 15 minutes at a time. You will make it. Then, maybe, when you’re ready, one day at a time. But start small.

A version of this post originally appeared on Special Needs Dad Chronicles.

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