I get versions of this question from time to time: Someone I know just received a hard diagnosis for their kid. What should I say to them? What would YOU say to them?
I remember the oppressive pain of those early days vividly, viscerally even. When bright hopes of a particular future are snuffed out, it’s like being instantaneously cold and alone. It’s dark. And the golden moments of your coming life haven't yet started to stack up in the corners of that cavernous darkness.
There's no right answer, of course, for what to say when speaking into that kind of struggle. Just speaking is the main thing, so long as you mean what you say and don't lob platitudes.
But I've been thinking more about what I would say if I could only offer one thing to that terrified, despairing me of almost ten years ago, to any parent facing the previously unthinkable. And I think it’s simply: Look at us.
Not because we’re perfect at this. Not because we don’t have struggles anymore. But because we’re here, we’re real. And any future of your own you think you’re looking at isn’t really there. You haven’t made your future yet and what you’re seeing right now is mostly sketched with shadows and fear.
But look at us, with almost ten years under our belt. There is a lot of smiling around here. Lots of hugging and laughing. We do art projects. We watch movies. We pick pumpkins.
I don’t mean to downplay the difficulties. Hard things come. But we face them, solve what can be solved, and weather it all together. We keep on moving, and most of the time it’s not a trudge.
The picture above is from a morning after a long, hard night with Collin. I remember how peaceful that day turned out. How much we enjoyed just being together, cuddling and reading books and listening to music. And I had the thought: I wish I could have seen this day in the beginning. My early days as a mother were so strangled by fear for the future that it felt impossible to enjoy the present. But look at us. Happy on the heels of tough times. I think seeing that would have helped me to feel more okay. It may have freed me to focus on the day I was in.