Monday, April 26, 2010

Taking a break from stress and worry

Queen Teen and I had reached our max on unhappiness, so we headed to Disneyland. I bought a Disney vacation package from AAA (great deal!). The two of us packed our bags, said goodbye to homework, therapy, doctors and housework and then flew to LA to lose ourselves in the Magic Kingdom.

What is it about Disneyland that makes people drop everything and spend far more money than they should just to wander around the park in the hope of meeting a Princess or getting on a ride in less than 30 minutes? I have never been what you'd call a Disney person; I could care less about Mickey Mouse and I'd scoff at people who collected pins. But now, I can't wait for our annual trip to D-Land. Annual trip? Yep. Queen Teen demands it. We hunt autographs and trade pins with the most hard-core Disney fans, but we skip the rides. Just wandering the lanes, looking at the shops and statues, flowers and settings, is enough for us, and when we run across a character like Minnie Mouse we're thrilled.

This was the year for Minnie. Queen Teen has developed a passion for all things Minnie, in fact, I think it's almost equal to her love for Cinderella. We spotted Minnie three times and posed with her twice, and in every shop Queen Teen hunted for the Minnie Mouse dolls. The other highlight for Queen Teen was meeting Princess Jasmine, one of the Disney princesses she hadn't met before. And of course, she met Cinderella. I reserved a table at Ariel's Grotto where the Princesses come to your table while you eat, and it was a good thing I did, because that was the only place Cinderella appeared. If we went to D-Land and missed Cinderella, Queen Teen would be crushed. And we met Princess Tianna in New Orlean's Square, who sang songs from the Frog Princess accompanied by a New Orleans Jazz style band.

Overall, it was a good trip, except for the food poisoning. Our first night at the California Grand, I ate a salad and woke up sick as a dog. The sickness lasted the entire trip, making it even harder to care for Queen Teen on my own so far from home. I sipped tea and ate crackers while pushing her wheelchair several miles a day. Even without being sick, it was difficult taking care of her alone. She's so much bigger and heavier, as well as more wobbly. Between her size and worsening ataxia I realized taking her do Disneyland, or anywhere far away, by myself has become almost impossible. Sure, I can do it, but at a cost to my energy and sanity. Next time, Rick is coming.

While we explored the park, Queen Teen sang songs at the top of her lungs, making the people we passed smile. "This little light of mine... I'm gonna let it shine..." Seeing her that happy after so many weeks of snarling misery was worth every dime, every exertion, even worth food poisoning.

On our last day, Queen Teen announced, "I'm so lucky! I get to come to Disneyland. Not everybody gets to go, but I do. And I get to go next year too!"

Yes you do, darlin.

Tuesday, April 13, 2010

When life and school crash together in a painful sort of way

We got some bad news at Stanford last week about Queen Teen's prognosis. Her hearing has deteriorated to the point where even her hearing aids aren't much help, and the audiograms over the past two years show a steady decline overall. After her audiology appointment we saw the orthopedist to take a look at her knees and he ruled against bracing. I wish I could say it was because her knees are fine and she doesn't need braces, but the reality is that bracing won't help so why put her through the trauma? Her ataxia has worsened, and odds are she won't be walking in two years anyway, so there's no point in forcing her to wear braces. She left the appointment happy that the doctor agreed she didn't need to wear braces ("I told you!"). She didn't hear the whole conversation. I swallowed my tears, put on a smile, drove us the three hours home, then went out on the back deck with a big bottle of wine and drank more than half in one sitting. Sometimes you just have to get drunk.

There was no time to grieve. I had school and papers and midterms and a book to publish, meetings with service providers and Queen Teen's teacher. By Friday I was still sad, but ready for class, and while I drove to San Francisco I thought about Queen Teen's need for alternative communication and probably a power chair. I needed to lift weights and learn ASL even faster than I'd anticipated. It would be okay. We'd get through it somehow, just the way we always do: with love, faith in each other, and a lot of gallows humor.

The weekend's classes were focused on working with people with multiple disabilities; people who use canes and walkers and wheelchairs. My teacher began discussing the process that families go through when a child's disability requires a power chair. It's hard to watch your child go from walking to needing a chair. Parents grieve, and children grieve for the freedom they lost. There's also a lot of anger...

Are you frickin kidding me? This week, of all weeks, is the week we discuss children with degenerative conditions and how they need to be able to use a chair? I wanted to spring up and run from the room, but I didn't want to create a spectacle. Instead I focused on breathing, trying not to cry, trying not to show how unbelievably impossible this situation was. Was this some kind of cosmic joke? Was the universe or God or whoever you want to believe in out to get me? The reason my whole world was unraveling was the class topic? Then I felt the edge of hysteria, like I would start laughing so loudly I would scare everyone, right before falling on the floor and disappearing. It was just too surreal and painfully ridiculous.

I didn't fall apart. I got through the rest of the day and made it back to the security of my home in one piece. But I'm dreading next week's class. Why? Because the topic is Deaf-Blindness.

Yeah, I kind of already know that one too.

Friday, April 2, 2010

The chaotic roar of 19th Avenue

(image from San Francisco Sentinel)

After my triumph crossing 22nd street, I immediately had to prepare myself for the next street crossing challenge: 19th Avenue.  19th Avenue in San Francisco is a major, six lane artery that runs North-South along the West side of town, through Golden Gate park and along the Sunset District. It is the path of Hwy 1 as it cuts through The City, so there are a lot of cars on that road. Thousands of vehicles, all day and all night. And somehow, I had to get my blindfolded self across that crazy road.

But first, the class learned to walk beside 19th Avenue. We met at Rivera and 19th and took turns crossing Rivera, trying to sort out the cacophony of trucks and cars and buses that fly by at 40 mph. My class partner went first, so I practiced teaching. I was amazed once again by how easily he could line himself up for a straight line of travel listening to the parallel traffic. Then it was my turn to be the student. I put on my blindfold and stood at the corner of Taraval and 19th, concentrating hard to locate the sound cue I need to cross safely. As usual, the sound swirled and echoed all around me. I heard the Muni train clatter past, but it sounded like it was on top of me. A motorcycle roared by and I jumped. I flagged my class partner and said I couldn't do it, so he guided me across. On the other side of the street I traveled down the sidewalk along 19th Ave, but still felt dizzy with the sound. Half a block later, after jumping every time a loud car went by, I pulled off my blindfold and switched to the low vision simulator.

Even with a little vision, the noise was awful. My partner encouraged me to try crossing the last street with my blindfold, and I agreed. I knew I had to get across Rivera somehow, or I'd never make it across 19th. I took a deep breath, listened hard, trusted that my partner would keep me safe, and crossed Rivera. By the time I made it across the street, my heart was pounding and I wanted to cry, but I breathed deeply and forced myself to stay calm.

One thing my partner and I were able to verify is that I am indeed hearing the echoes of traffic. Because the traffic noise sounded like it was on my right (where the road was) and left (where the buildings were), it felt like I was walking smack down the middle of 19th Avenue (probably shouldn't use the word "smack" in that sentence).  Logically, I knew I wasn't, so I didn't panic, but the sensory overload was exhausting. I had to concentrate with all my might just to walk a straight line.

How was I going to cross 19th Avenue if I couldn't even walk along it?