Hey Lou Writes

The Grey Matters


You Throw, I’ll Roll (why losing my vision isn’t all about loss)

I’ve had some ups and down since January, when I learned I had the inherited eye condition Retinitis Pigmentosa. You can read all about that experience here.

I have to admit that in my worst moments, what comes to mind is

what I’m losing.

On some level I’m losing:

• My ability to see, at some unknown time in the future.

• Eventually, my ability to drive.

• And ultimately, a large part of what one might think of as “independence.”

Along the way there are smaller losses, some of which I’ve already experienced. I haven’t had great night vision since around the age of ten. My eyes simply don’t adjust in the darkness (a problem with the RODS, not necessarily the CONES in my eyes). Through the years, that part has grown worse. I’ve been out on hikes as the sun began to set and I’ve felt a panic, needing to get back to the car (and a husband who could stand to stay out until well after the sun actually disappears.) 

Just this week I had one of those “I’ll remember this forever” moments, filled with the kind of emotion that can only emerge once you’re safely snug in bed with your husband. I didn’t even know I had to cry until I was in his arms.

Have you ever had tears sneak up on you like that? Just a few tears, not the torrent of waterworks that ALSO happen from time to time. Well, that’s what happened to me. And here is why.

It started with a great evening. It also ended with a great evening. One of those nights when everyone and everything smells like summer and the back door is slammed over and over with kids running back and forth to go outside. I cooked dinner and could see the kids playing basketball out the kitchen window. Then everyone ran in, ate dinner quickly, and got back out there. Warmth and sunshine is a commodity in these first weeks of spring. Dishes can wait.

But what happened was nothing more than a simple game of catch with one of my stepkids. We threw a green ball back and forth across the area behind the house. We laughed each time I had a terrible throw (too many to count, honestly) and said, “Nice one!” every time someone caught the ball. As evening crept up, I hadn’t noticed that the light was dimming outside.

It was EARLY evening. Not the part of evening where I feel the need to retreat. Not yet.

With each throw my way, I realized I could no longer see the green ball coming my way. I started ducking rather than catching. After a few throws like this, I said, “Wow, I cannot see that ball.”

And this, my friends, is when kids show you love and miracles and compassion. Simple, every-day moments like these is right where the magic happens.

Without batting an eye, my stepdaughter said, “Why don’t you throw it to me, and I’ll roll it back across the concrete to you.”

It was such a simple solution and one that allowed us to keep playing for a while. My step daughter probably won’t remember it, but I will never forget it.


In reality, this diagnosis has actually been a whole lot more about gaining than losing. 

I’m not actually losing much.

I’m gaining a perspective I would have NEVER had otherwise.

I’ve gained straightforward-problem-solving-insight of a ten year old and compassion from three kids- all under the age of 13.

I’ve been proven wrong about all that I thought I needed.

I’ve learned about love, and will think every day about when my husband told me “the blind years will be the best years”, and then continued on to talk about the kind of love most people don’t get to experience, but we will.

Each and every day I am gaining what my blind grandmother calls Meaningful Vision. I can still see, and I can still see what God is doing in my life. My vision is changing and it truly is becoming more meaningful.

Even the ten years or so I have left of “full vision” (if I’m lucky)…. that’s the ten years I have left with stepkids under the age of 18. As you can imagine, I viewed the end of that as a certain kind of freedom – much like parents view “empty nests”, but in a different sort of way that has almost nothing to do with the kids themselves, but everything that comes along with a messy and complicated two-household dynamic. Instead of wishing ANY part of the next ten years away, I now know I have to cherish every second. I’ve been seeing faces differently. I’ve been looking my family members in the eye and telling them I love them and that they are beautiful.

I’m seeing that having the ball rolled back to me actually makes the game just as fun, and a person can always improve on their grounder retrieval.

And not all cries are made equal… sometimes a few tears of realization, while in the arms of your spouse, is enough to process a moment you’ll never forget.

What have you seen lately that you might not have seen without a hardship? It’s worth paying attention to, trust me. <3



Lou (who loves kissing with her eyes CLOSED anyway)