Sometimes I get so wrapped up in parenting TB for the future I forget to enjoy where he is right now, and today I read an opinion piece from the New York Times that reminded me just how much the future pales compared to enjoying the here and now.

Emily Rapp’s son, Ronan, has Tay-Sachs disease and probably will not live past three. Her parenting has little to do with his future and everything to do with the now, but she speaks a truth that many do not want to hear (emphasis mine).

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

When I focus on TB, I keep my goals simple– that he love God and love others. Those are the things that will last forever, whether forever ends today or in one-hundred years. Ronan’s story reminds me to focus on these areas, and grant an extra dose of grace to those parenting differently within that context. Oh, how life (and society) would be different if we all realized and lived with the thought in mind of just how short our time on Earth is.

There are a lot of times when my primary goals for TB fall by the wayside. There are times those goals for myself fall away too. I strive to be a present, but at times, I am distracted. But what if I knew that I only had 3 years with TB or with my own life, what would I focus on? And perhaps more importantly, what would I leave behind?

The list is long.

I encourage you to read Emily Rapp’s piece in its entirety (with a box of tissue nearby). It will stir your heart and, I believe, remind you of what really matters in life, especially with our children.


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