Magical

Here’s an old blog from a couple of years ago.

Sophia Me

My daughter and me on the Oregon Coast, 2011

My son has been driving himself and my daughter to school. He parks in the spot that was reserved for my daughter’s use starting freshman year, the handicapped spot designated “No Parking” by the school so it wouldn’t be filled with other legally (or illegally) parked cars. That didn’t stop the former principal from parking there, but that has already been discussed.

Since we didn’t get a parking sticker or any kind of prior approval, I asked this morning whether my son was getting any push back from the school about parking in the no-parking spot.

“No,” he said, “though one of the deans did mention that he saw me driving. But he was fine with it. Once they know that she’s with me, I can pretty much do anything I want. She’s MAGICAL.”

We laughed, then he said “Yeah, I murdered that guy, but my sister’s with me, and she’s in a wheelchair, so…”

Of course, he was joking. He didn’t murder that guy. But the fact remains that because of my daughter having OI, we *have* gotten some privileges other people don’t get. Yes, dealing with OI can be a serious downer sometimes, and my daughter has experienced more pain in her lifetime than any one person should. She’ll always have to use a wheelchair, she’ll always spend a certain amount of time in hospitals, and strangers will always, always look at her funny. But I think it’s time we took a good-natured look at the fun things we’ve gotten to do because my daughter has a physical disability. Just this once. I promise I’ll go back to b*tching and moaning next week.

The most obvious benefit is those juicy parking spots. Yep, they’re usually pretty awesome; wider than most spots so she can transfer to the wheelchair, and closer to the door. Most of the time. And then there’s priority seating at the movie theater. The best example of this is when we went to the midnight showing of a Harry Potter movie, and the crowd was backed up onto the street. My daughter didn’t have to wait in line  like everyone else, and neither did her entourage … I mean, family. We all got to skip the lines and find seats before the hoards arrived.

We get to board planes before everyone else, and even (according to one flight attendant) get to change seats closer to the door if we’re too far back. This was a godsend, because carrying a fragile child down a narrow aisle past seat backs that threaten to snag her foot and break a tib/fib makes my skin crawl.

When she was very small, we never had to wait in the doctor’s waiting room. Because of the heightened danger from respiratory infections, the doctors always recommended that when we arrived at the doctor’s office, the staff have us wait in a room immediately to avoid catching germs from other sick kids. We still had to wait our turn, but we didn’t have to sit in the waiting room.

Because she is so much smaller than her age, she paid the “child” rate when available much longer than other kids. And she can eat a kids’ meal and be satisfied, which means she is cheap to feed! (Ed. note: now at the age of 23, she still orders off the kids’ menu, and revels in the occasional Happy Meal.)

Oh, the array of wonderful things we’ve gotten to do through Shriners…she’s gone to a Bulls game (though she has absolutely no interest in basketball) and sat in the fancy box and had fancy food. Our first visit to Shriners was just after Christmas, when they were taking down the display that the Mars Candy Company had put up for Christmas. It was a 4X6′ diorama of a winter scene, completed exclusively in candy. The snow was white M&Ms, the skating pond blue fruit-roll-ups, the trees made of wrapped candies stacked evergreen-style in a cone shape. When they dismantled the scene, the kids who were in the hospital got to split the booty (only the wrapped stuff), so she came home with an enormous bag of candy straight from the Mars factory. We were on TV once, when the local news interviewed parents whose kids happened to be at Shriners that day. That may have been the same day we got to meet the beauty queens (listen up, fellas), about 20 of them who were touring the hospital that day. My daughter got to wear a real, honest-to-God tiara and have her picture taken alongside dozens and dozens of perfect, shining teeth. There were beauty kings there as well, but they didn’t have cool tiaras.

At major athletic events, like Big 10 football games, we sit in the wheelchair section with her, which affords a close-up view of the field, albeit from the endzone.

Because of her we got to visit DC as a family, the last big vacation before my oldest went off to college. We were there for an OI conference, but we took an extra week and visited as many of the sights as we could–again, not really standing in line much because of the magical wheelchair. We even got to tour the Pentagon, and my daughter and I had to ride on the elevator for part of the tour while the others took stairs. They gave us a personal attendant on the top-secret elevators; a full parade-dress Marine.

Nobody else on the tour got their own Marine. Just us.

Also through Shriners, she was nominated for a Make-a-Wish, which was one of the most amazing experiences of her–and my–life. She chose to go on a massive shopping spree in New York City, and Make-a-Wish put us up in the Hyatt Grand Central, directly above Grand Central Station. Four of us (her, me, another adult and one of my daughter’s close friends) got to go shopping with a personal shopper at Macy’s and then to see Wicked on Broadway. That was three years ago, and she’s *still* wearing the clothes she got in New York, and we talk about that trip all the time. It was truly a magical weekend.

But perhaps the coup de grace of events in which we participated simply because she has a disability was the three-week road trip to the west coast two summers ago. We signed her up for OI week at Camp Attitude, and decided to drive instead of fly. We took the week before camp to drive through grasslands, mountains, and forests, and the week after camp we drove down the coast of California, through the desert of Nevada, the salt flats in Utah, and back into the mountains. It is because of that trip that I fell in love with mountains and have decided to move there when I’ve kicked the kids out for good … I mean, when they both graduate from high school and release me from suburban servitude.

We visited the West coast for camp again last summer, this time flying, and got to spend one night on the Oregon coast. We stayed in a hotel right on the beach, and from our balcony, we watched the sunset over the waves. It was an exceptionally beautiful 24 hours that I will never forget.

And just recently, my husband got to fly to Montana with her to visit University of Montana as a potential university for her. He had never seen the Rockies before, and this gave him the opportunity to experience them.

That’s just the list of things we’ve gotten to do. This doesn’t even mention the people we’ve gotten to meet, friends we’ve made simply because she has this disability. Her teachers, aides, school administrators, fire fighters, doctors, nurses, kind and loving friends who aren’t overwhelmed by the thought of the wheelchair.

Having a child with a disability has done all that soul-enriching stuff everyone talks about, and I don’t mean to discount that. But just this once, it’s nice to look at all the incredible experiences we’ve had simply because doors have opened wide enough for my disabled child–and her lucky family–to wheel through. It really has been magical!

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