Thursday, September 25, 2008

Our Make A Wish Adventure

Anyone who has ever walked the streets of New York City can attest to this. New York City, at least Manhattan's South Central Park District (5th Ave, Columbus Circle, Ave of the Americas, Broadway...) where my daughter and I stayed during her Make A Wish Adventure IS an example of Chaos Theory in action. The streets are throbbing with constant movement, noise, and activity, flowing with concentrated propulsion. Somehow, this sea of people manages to function, even move from place to place without crashing into one another. It may look like pandemonium, but there actually is a logical pattern. There's a current, and when you're walking the streets you need to plunge in and ride it. If you hesitate, you'll get hit by a cab.

My daughter and I spent two days and three nights in Manhattan to see Laurie Berkner in concert at the Lincoln Center for the Performing Arts. The concert was amazing! Laurie Berkner gave a show even a grown up would enjoy. And the toddlers were screaming like she was Paul McCartney. "Laurie! Laurie! I love you, Laurie!" They were bashing in the aisles, moshing to the groove of "Laurie's got a pig on her head" and singing along at the top of their little baby lungs. My daughter laughed and grinned through the whole concert. I have truly never seen her so happy, not even when she got Barbie's Dream House for Christmas three years ago.

After the concert we went back stage to meet Laurie and the band. She is wonderful! She got really close to Queen Teen as if intuitively knowing Queen Teen needed that connection to understand what Laurie was saying. And then Queen Teen surprised me. She was wearing a bracelet that she had insisted on bringing to the concert. I thought it was a fashion thing, but it turned out she wanted to give it to Laurie. Her whole body shook as she took it off her wrist and thrust it at Laurie. "This is for you." Laurie took it gently and put it on. "Thank you. It matches my dress. I love it." Then she hugged Queen Teen. Queen Teen hugged her back, her entire being glowing with joy. I wiped tears from my eyes and tried not to completely lose it.

Laurie spent several minutes with us before she had to join the reception in the main room, but she invited us to the party. We stayed a few minutes, eating chocolate covered strawberries, but it was packed with people and Queen Teen was exhausted, so we hopped back in the limo (yes, we got to ride in a limo to the concert. We rode in five limos during the trip to be exact).

The next day was our free day when we travelled the streets of Manhattan. Surprisingly, the stream of people stepped aside to let us pass when they saw us coming. The whole current adapted to our presence, and once when we got stuck on the edge of curb a man in a business suit stopped and helped us, then quickly jumped back into the flow and was gone. Queen Teen has a problem with loud noises, and the streets of Manhattan are nothing but one giant noise, but she hung in there, really hungry to explore. We hopped from store to store for breaks from the chaos, and I made sure to navigate back to our hotel so she could get her bearings again. I was really proud of her.

We flew home on Tuesday and met our limo driver, Duke, who drove us all the way back home. As I sat in the back of the limo with Queen Teen asleep beside me, watching the tiny LCD lights in the ceiling of the car as we sped through the blackness of the night, I felt perfectly calm and safe. I knew Duke would get us home safely. I fell asleep.

Queen Teen went back to school today, weary, but excited and still grinning after her trip. She can't believe she actually MET Laurie Berkner.

Today, I'm playing catch up. A thousand emails and phone calls to make. Stacks of bills and dirty laundry. I don't mind. My daughter is happy, and I'm still tingling from Manhattan and the joy on my child's face.

Tuesday, September 16, 2008

"Make A Wish" and Laurie Berkner

This Saturday, Queen Teen and I are flying to New York City to see Queen Teen's favorite singer, Laurie Berkner, in concert at Lincoln Center for the Arts, all thanks to the Make A Wish Foundation. Queen Teen was referred to the program four months ago by one of the social workers we work with. At the time Queen Teen had no idea what she wanted, but the two volunteers who came to interview her discovered that she LOVES Laurie Berkner. When they asked her if she'd like to meet Laurie Berkner, Queen Teen giggled and smiled so big her pony-tales practically pointed straight up. That settled it! We would meet Laurie Berkner.

The team warned us that celebrity wishes can take a year or longer to arrange, but Laurie Berkner is not your average celebrity. She has been more than accommodating and seems really eager to help make Queen Teen's dream come true TODAY. We've been invited back stage to meet Laurie after the concert and she asked what Queen Teen's favorite song is so that they can sing it together.

While Queen Teen was recovering from surgery last year, I contacted Laurie Berkner and requested a note from her to help cheer Queen Teen while she lounged around in two big casts. Laurie sent a postcard and a hand written note within the week.

Queen Teen says that listening to Laurie cheers her up. Even though Queen Teen is a teenager now, she still loves listening to the silly, children's songs of Laurie. I think partially it's because Queen Teen is losing her hearing, but since she knows every one of Laurie's songs by heart, she can still enjoy the music no matter how muffled it may become.

Make A Wish is sending a car to our home and driving us to the airport, paying for all the travel and accommodations, helping us navigate Manhattan, and providing meals and "incidentals." They want us to have fun without stress or worry about how much something costs. For that, I am deeply grateful. And I am grateful to the hundreds of volunteers and people who donate to the program who help make these dreams come true for kids who really have a rough road to travel.

When we found out her wish was granted, Queen Teen asked, "Why are they sending me to New York to meet Laurie?" She watched me very carefully and I knew I had to say something that would help her understand what the program is about without making her think people were feeling sorry for her. I was really stumped for a bit. I mean, what do I say? Um gee... because you have a degenerative disorder and who knows what the future will bring?

After a moment, I said, "They're giving you this chance to meet Laurie because the people know how hard things can be for you sometimes and they want you to have something that will make you super happy. You've been through a lot and have worked really hard and this is a present so you can just do something fun and not have to worry about anything."

She nodded while she thought about what I said. "Okay." Then she smiled and we started planning for the trip. I think I said the right thing because now all she talks about is WHAT we're going to do and not WHY we're doing it.

"Make A Wish" isn't about pity, it's about joy; a way to try and balance out some of the anger and frustration, pain and discomfort, of coping with a chronic illness. It's about giving a family time together doing something fun and care free.

To tell the truth, I'm really excited to meet Laurie Berkner too! It's Laurie Berkner!!!! She's awesome! Really! Check out her website and play some of her songs. Not just silly preschool stuff, grown ups can enjoy them too.

"I've got a song in my tummy and it wants to come out, I've got a song in my tummy..."

So okay, maybe that one's silly, but what's wrong with a little silly?

"I've got a song in my tummy and it wants to come out. And when it does, I'm gonna sing and shout... La La, La La, La La..."

Thursday, September 11, 2008

How it Feels to be a Traveler

Monday was my first day of class in the Orientation and Mobility Program at San Francisco State University and my first opportunity to try walking the hall as a "traveler;" wearing a blind fold while being led by a "guide."

Before I was a traveler, I was a guide, something very natural to me. My class partner put on her own blindfold and then gripped my arm as I led her up and down the hallway. I think I may have talked too much, though.

"Here we go... we're passing a garbage can on our right... here comes a large group of people, oh good they're stepping aside to let us pass... we're now passing a chair propping open a door... another group is coming, this time we'll move aside for them... okay they're gone, lets move on... we're turning left to walk up another hallway..."

The banter felt so natural because this is what I do with Queen Teen as we travel together. Even if she's in her wheelchair, I talk about the trees and point out the squirrels and ask if she sees the flowers, and take a look at this leaf... filling in the gaps in her vision. Since she isn't completely blind, she'll often point things out to me as well. My classmate said she felt very comfortable walking with me, but I'll hear back from our instructor if I was talking too much.

Then it was my turn to be blindfolded. At first I felt dizzy and had to force myself to breath through it and fight panic. After about a minute the dizziness went away, except every time we turned I would get momentarily dizzy again. With the blind fold on, I didn't talk. My guide was also quiet, only giving me verbal cues when we were making a turn or avoiding and obstacle. I tried to hear what was going on around me but the echos in the hallway from the voices of other students were so loud I couldn't navigate by sound. I was truly blind, visually and auditorally, and had to completely trust my partner to keep me safe.

I have classes every Monday night, and since I get out so late I'm staying with friends, which means I get one full night of sleep a week. An extra bonus! Queen Teen helped Rick by doing an excellent job getting ready for school without me. Rather than whining that I was gone and punishing both Rick and I for my absence, she got her own school things organized and cheerfully greeted me when I met the bus on Tuesday. This is a big change from even this summer, when any time I left for any reason I was given the "grumpy-teen-I-hate-the-world-how-dare-you-leave-me" treatment. Queen Teen is definitely growing up.

Thursday, September 4, 2008

At 8:30 all the Moms come out to Walk

I love to walk. When I lived in San Francisco I didn't own a car and rarely took the bus. Instead, I walked several miles a day, loving the feel of the pavement under my feet and the flow of the city all around me. Today, I go out walking in the mornings as soon as I drop Queen Teen at school. I plug in my IPod and leave the sad dog at home (I take her later, but she can't keep up with me when I power walk), letting my arms swing as my body gets into the zone. The stress dissolves from my shoulders and my heart rate keeps time. I love it!

Yesterday while walking, I passed two women my own age who were walking together and chatting. I nodded, zipping past as the music of Pearl Jam pushed me faster. A block later, I passed another small group of women, also my own age, and then in the next block four more women. Around the corner I had to slow down for a group of women who looked like they were on a break from work because they wore dresses with tennie's while they strolled. When I finally passed them up I looked around and realized the neighborhood was FULL of walking women, mostly my age and mostly in shorts or lose pants and t-shirts.

I suspected they were all like me, moms who'd just dropped their kids at school and were now pacing the neighborhood. It was 8:30 am. The first bell of every school had rung and every child in town was in class. We moms were free!

Then I realized that not only was I walking with every mom in town, I was COMPETING with them. I couldn't just comfortably walk; for some bizarre reason I had to out pace every group of women I came to.

I laughed at myself, cranked up the tunes, and tried to relax again. Come on, Terena, this isn't a race. Just listen to the music and get your flow back.

If you go out walking at 8:30 am, look for the moms. We'll all be out there in our baggy t-shirts and tennies, walking before the day gets away from us.

Tuesday, September 2, 2008

Root and Sprout

Last week, I posted about the odd mix of guilt and joy I feel every time the first day of school arrives. While pondering that fact, I stumbled upon Root and Sprout, an on-line parenting magazine and saw that their deadline for the September issue was the end of the week. So I decided to go for it. I frantically wrote a 500 word essay, sent it in the following day, and it was accepted! Called "It's Back to School Time. Why am I so Happy?" it is about the glee and guilt we parents feel when we toss our children out of the car on their butts in the school parking lot lovingly send our little darlings to school. Look for it in the Grow Through Laughter section of the zine.

You'll also find articles about marriage (Dating Your Spouse: How to Reclaim Your Marriage, by Teresa Hirst), volunteering at your child's school (No Time to Volunteer? by John Boynton) and being a special needs student (Dear Mom and Dad: What It’s Like to Be A Child with Special Needs, by Kirk Martin).