We ventured back down to D.C. on our last day at the NIH. We were taking it easy, as Ben was having some discomfort and headache from his lumbar puncture the day before. We took the Metro down to the Smithsonian and poked around the Museum of American History. (Note to self: next time, eat lunch from the streetcart outside the museum. Two chicken and fries, one slice of pizza, one salad, and four drinks = $55 in the museum. Yikes!!)
We did stop for ice cream from the cart afterward. 
Greensboro lunch counter. I was working the news desk at the Fayetteville Observer-Times in 1993 when the Greensboro Woolworth’s store closed and the Smithsonian acquired this counter. I was really interested in the story then. But it’s always been just a story to me – the whole civil rights movement – having been born after the most intense years of the movement. I’ve tried to educate my kids about the history of desegregation in our country, but they always seem to look at me with blank stares. They have nothing in their life experience to hang the information on. Honestly, neither do I. But seeing the counter and participating in a kind of reenactment there at the museum stirred something deep inside me. I hope it did the same for my kids.
Top hat worn by Lincoln to Ford’s Theater the night of his assassination. Whoah.
George Washington’s field telescope and writing case that he used during the Revolutionary War. Seriously!
Ulysses S. Grant’s carriage. Oh my word. This is so much better than a history book!
Smithsonian Castle and gardens
Back at the NIH. Not a great pic, but it was the only chance I had to get one of Ben in front of the nicer NIH building for our Wall. We flew home late that night. Ben suffered from a headache for a few days, but it finally went away yesterday. We’re waiting to hear from the NIH team regarding the results of his tests.
We learned a bit more about Stargardt on this trip. There are currently about 25,000 in the U.S. who have it. Scientists believe that light accelerates the vision loss, so it is very important that Ben wears sunglasses any time he is outside or in bright light. So far, he’s complying with that without complaint.
We learned that scientists believe that vitamin A makes Stargardt worse, as opposed to other eye conditions that benefit from high doses of vitamin A (think carrots). So we’re to make sure Ben doesn’t exceed his daily value of vitamin A. That isn’t usually a concern, as this household is not big on carrots … or veggies in general. But I did make pumpkin bars this week and realized I need to think more about what I’m giving him.
He didn’t seem to do well on the color portion of his eye tests. We knew he’d had some difficulty with colors since the onset of Stargardt, but he seemed to struggle more this time than he did on his last test. We’ll check on that when we get our copies of the doctor’s notes.
We were able to see, on the printout of his field of vision test, where his blind spots are. That helped us understand why he is able to see better by turning his head a certain way … his peripheral vision is much better than his central vision, so he adapts by moving his head until the object is visible to him.
Adapting. That’s what we’re doing. I always thought he would take his cues from us, and that we needed to be upbeat and positive. I still want to be upbeat and positive, but I think maybe I’ll start taking some cues from him. He just keeps going, that boy of mine. He doesn’t use his low vision as an excuse. Whatever he wants to do, he tries to do it. I think my job – for now – is to let him, and to find ways to make things easier, if possible.
