When you visit our website you may provide us with two types of information: personal information you knowingly choose to disclose that is collected on an individual basis and website use information collected on an aggregate basis as you and others browse our website. Your comments will not be made public without your permission. Do you have a question or comment? We'd love to hear from you. I stayed on her shoulder, gently reminding her that she may never be back and she should be sure to take it all in. She spent hours glued to the window of the car or the rail of a pier. Bella saw the aquarium, the wildlife, the vistas. Over the weekend we drove down the Pacific Coast Highway to Monterey. San Francisco one week, Los Angeles the next. You never know when you'll see them again.Ī couple of weeks ago I had to travel for business. ![]() I'm just a dad terrified his daughter might lose her sight. It's something she's learned from having me nudge her to watch life closely, to pay attention to things she might never see again. She'd seen me trying to coax another circuit around the lawn out of our lawnmower (it didn't make it) and seen her two year old nephew bright pink with popsicle drippings. She meant she'd seen the leaves change in the fall and the snow piled three feet high and the hummingbird that likes to visit our daylilies. And the Usher Syndrome Family Conference was in Seattle last year, so we took it as a vacation and went to Vancouver, too (long before my Bruins won the Stanley Cup there and set off riots). We had also driven to Philadelphia to see Dr. Now it was true that we had gone to Iowa via Chicago to visit Drs. When she was asked her thoughts about having Usher syndrome, she answered, to my amazement, that she liked having Usher syndrome 'because I have gotten to see a lot of things.' At 12, she was the youngest of the panelists. She'd never see it and it had to be seen to be understood.Īt the Usher Syndrome Family Conference in July, Bella sat on a panel and answered questions for the audience about what it was like to have Usher syndrome. I hadn't been there in fourteen years and Bella probably never would be. It's a long way from the east coast where we live. ![]() That's why I thought of Monterey when we first got Bella's diagnosis. Kids unconsciously slide toward the middle of the seat, away from the windows and the door that might accidentally flip open. Knuckles turn white on the steering wheel. The road crumbles in hairpins and drops and climbs up, up, up, until the ocean mist melts in to the clouds. Thousand foot drops to the steel gray Pacific below, a rickety fence all that stands between fender and oblivion. Take the Pacific Coast highway from the south. ![]() Inside it's an ode to what is outside with otters and thin legged birds and blue fine tuna and sardines and sardines and sardines. The aquarium sits unassuming at the end of cannery row. Brown signs praise Steinbeck and eulogize the way things were black cars with bald tires, tired men with cigarettes in their mouths, piles of fish still silver even in black and white photos. The canneries are gone replaced by colorful shops all tossed on top of one another, the usual tourist fare chocolates and ice cream, "I'm with Stupid" t-shirts, Bubba Gump Shrimp restaurant and gift shop. The sky is gray in August, the mist cold and fresh. The mats of kelp sit heavy on the swells just off the pier and are home to families of comical otters waving and rolling, scratching and napping. Sea lions argue and wrestle like siblings on the breakwaters or bark unpleasantries at the fishermen that chase them from boat decks with hoses. Harbor seals sleep on the beaches, the dark pupils of their eyes visible when they blink out of the sea and flop, flop, flop ashore. The wildlife is so close there and Bella loves animals. The first place I thought of was Monterey. "I like having Usher syndrome because I have gotten to see a lot of things." - Bella Dunning
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