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.

"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..."

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.

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.

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).

A Gift from My Teen

Yesterday was my writing group and with my hubby out of town I wasn't sure I could go. Then I decided to take Queen Teen with me, loading up coloring books and crayons and telling her "it will be fun."

She scowled at me but got her shoes on and then said, "Maybe it will be fun."

Maybe is as good as a yes in Queen Teen talk.

We met the other's at the restaurant where Queen Teen smiled and responded to questions about school, then colored in her new Mermaid book until the food came. I talked to my friends and discussed writing and books for two hours while helping Queen Teen find a color, turn a page, hold her lemonade, and eat her meal. Rather than declaring she was bored after twenty minutes as I expected, Queen Teen remained cheerful and friendly. "This is fun," she said while twirling the little paper umbrellas that came with her lemonade.

Simply by sitting beside me in a restaurant with my writing-friends and coloring, she gave me a present: time to be creative. Her actions showed me she understands how much writing means to me. Often when I pick her up from school my lap top will be in the car and she'll see it and say, "You must have been working." Working equals writing.

It's funny... sometimes Queen Teen can be obstinate and moody, making me want to kick the wall in frustration. Just as often though, she can be compassionate and kind. We have fun together, laughing at jokes we make up or discussing why our dog Bourre snores. Her sense of humor is quick, and so is her temper.

There was a time not so long ago when she would've fought me about leaving the house for dinner at a restaurant because she didn't like having her routine disturbed. Now she's eager to try new things and see new places. Her world is opening up, little by little, and she's starting to understand she actually isn't the center of it.

Thank you Queen Teen for letting me be your Mommy AND a writer.

Day Number Four of Jr. High

Today is Thursday, day number four of Jr. High, and so far, so... interesting.

First, WHY does school start at 7:30 am! Come on! Hasn't anyone read the study that showed Teenagers are sleep deprived and any classes before 10:00 am are a complete waste of time? Plus, I am NOT a morning person, so dragging myself out of bed before 6:00 am and slapping a pleasant smile on my face while getting my daughter ready for school is against my religion!

Second, Queen Teen loves her new teacher, Gayle, but isn't too pleased that she's supposed to go from class to class for different subjects with different teachers. To her, it is a stupid idea and a waste of her time. She wants her equipment (Intellikeys, CCTV, and computer) in ONE room, all set up at HER station, the way she WANTS, without all this moving around. I have to say I kind of agree with her, especially since I believe the way Jr High is run in the USA is diametrically opposed to the way children should be educated (don't get me started!). However, this is the way Jr High IS and we want Queen Teen to learn how to live in the world and cope with change. Therefore, she is required to spend three periods in other classrooms with the remaining four in the Resource room with her beloved Gayle. In time I believe Queen Teen will get the hang of it. If not, we'll adjust as needed.

Third, Queen Teen has decided there's no way in hell she's wearing her hearing aids, she don't care how much they're supposed to help her or what kind of bribes we offer, forget it, we ain't getting those things in her ears EVER AGAIN. This could be a problem.

Fourth, lucky for her, the hearing aids broke and are now on their way back to the audiologist for repair.

Fifth, at the last minute her school found a full-time aid for her, thank goodness! I really didn't want to have to start that battle.

Sixth, Queen Teen has to use her wheelchair more than she would like because the ground of her new school is so bumpy and uneven it isn't safe for her to use her walker much. This makes her very angry.

Seventh, she has a huge smile on her face when I pick her up from school and she tells me she loves it. Whew!

First Day of Jr. High

This morning I drove my daughter to Jr. High for her very first day, and although there was a part of me that felt sad and nervous, I also had to restrain myself from peeling out of the parking lot while laughing hysterically, shouting "See ya!" Yahoo, another summer licked! And yes I know how precious the time I spend with Queen Teen is and how every summer down is just one more bit of childhood gone, but by the end of August she and I are both so tired of each other we can hardly hide it anymore. Not one more game of Uno, please! Time for other people to entertain the Queen.

For the first time in her life, this transition didn't seem to frighten her. I was expecting tears and sleepless nights, but instead she talked about school like it was the greatest place on Earth and she couldn't wait to go. We picked out her clothes the night before and she washed her walker, wheels to handles, chatting happily about what school will be like. She had a good sleep, got up on time, ate a good breakfast, got dressed and cheerfully got into the van for me to drive her to school.

Once there she walked to class using her walker and I followed with her wheelchair. She knew exactly where to go, thanks to Laura. Laura met us at the classroom and we all went in together to greet her new teacher, whom Queen Teen had met before. Queen Teen had a grin on her face the whole time, so I gave her a quick hug and left, feeling a tiny tug on my heart as I walked away. I looked around at the other students as they sleepily sauntered to their first class, seeing how grown up and tall they are. My daughter looks so tiny in comparison, but she's just as grown up and ready for school as they.

The next few weeks will be bumpy, I'm sure. Queen Teen has to learn how to navigate quickly from one class to the next in different buildings across uneven ground on the campus. Half of her classes are in the Resource room where she will work on Science, Math, Sign Language and other skills, with Language Arts, PE, and Social Studies in other classrooms. It's a good balance of inclusion and support, I think, and we can adjust her schedule as need be.

As for me, I have the next two weeks to get organized and catch up on Medusa's Muse work before I start Graduate School. This is going to a very busy Fall!

When Hearing-Aids hurt

In preparation for school beginning next week, I cleaned up my daughter's hearing-aids, checked to make sure the batteries were strong, then brought them to where my daughter was sitting with her dad eating a Popsicle.

"Time to wear your hearing-aids." I said. "You need to get used to them again for school."

She'd had most of the summer off from wearing her hearing-aids because she'd outgrown her ear-molds and then it took time to get new ones made and a follow up appointment to have the hearing-aids adjusted. We'd switched to Stanford Audiology for her hearing needs, which has an excellent pediatric program. The audiologist is very skilled at working with children and picking up on their subtle clues to determine what the child can and cannot hear. Queen Teen warmed up to her immediately on the first visit. We picked up Queen Teen's new aids on the third visit. The doctor adjusted the volume after discovering Queen Teen could tolerate a higher threshold of sound than anyone thought. The moment the doctor put the new aids into Queen Teen's ears, before even turning them on, Queen Teen burst into tears.

"I don't understand what I even have to wear them! It doesn't make any sense."

The tears kept falling while the doctor worked to set the aids properly, visibly shaken by Queen Teen's tears. I kept wiping Queen Teen's nose and eyes while holding her close and encouraged the doctor to just keep going. I know my daughter; she won't stop crying until the hearing aids are out.

Back home, I put the aids away, thinking I would give her a bit of a break to get used to the idea again. But every time we talked about it, she'd just start crying again.

And then my husband had surgery, and the dog got mauled, and then Queen Teen had dental surgery, all within one week of each other, so the hearing aids were ignored as I dealt with the immediate crisis my family was in.

One week before school, I put the hearing aids into Queen Teen's ears, telling her she would wear them for an hour to "get used to them again." She wrapped her arms around herself and burst into tears. I decided to ignore the tears, believing if I was tough she'd stop being hysterical and put up with the aids for one hour. Thirty minutes later, she was still weeping. I tried consoling her, talking to her, joking with her. I tried putting in a movie to distract her, but that only seemed to make things worse.

"They don't sound right," she said between sobs. The she started crying so hard she couldn't breath.

I took out her hearing-aids. She kept crying. She said the aids didn't help her and she didn't understand why she had to wear them. Nothing I said, not reasoning, begging, pleading, or logic helped her understand WHY she had to wear her hearing aids. I explained she wasn't the only child in the world who wore hearing aids but she said she didn't believe me.

When she calmed down after I left the room, I overheard her talking to herself. "I don't know why. I just don't know why. They don't help me. So why do I have to wear them."

This was more than being stubborn about wearing her hearing-aids. She cried like her heart was broken, like she was the ONLY person in the ENTIRE WORLD who had ataxia and couldn't see very well and had to wear hearing aids. She kept repeating over and over that she didn't understand and I realized it wasn't just about the hearing-aids, it was about everything. Thirteen is hard enough without trying to cope with multiple disabilities.

After talking with her elementary school teacher, I decided to let school work on the hearing aids issue. Since she wears them at school, perhaps it will make more sense to her to wear them then. Home is her retreat, her respit from braille and sign language and PT. Plus, children always cry harder when their mom's are in the room, as if they're saying, "See, Mom. My heart broke. Can you fix it?"

No, my darling girl, I can't. But maybe your teacher can.

"She's 13"

Yesterday I took Queen Teen to Mervyn's for a little back-to-school shopping. At first she was cheerful and silly, giggling at the stuffed puppies and feeling proud of herself every time she navigated around an obstacle in the aisles. And then, without warning or provocation, her face set in a determined frown and her eyes focused downward. Nothing I did or said made any difference.

"Look at this cute shirt! It's even red, your favorite. Do you like it?"

"I don't know," Queen Teen responded without looking at the shirt.

I held it under her nose. "It feels soft. Would you like to wear it to school?"

"I don't know."

"Maybe I should just buy you uniforms again. You looked cute in your school uniform."

"I don't know."

"Really? You don't know. Then I SHOULD buy a uniform because then you won't have to decide what to wear at all. Yep, I think a blue uniform would be good."

She scowled at me. Well, at least she made eye contact for a moment.

We managed to buy a pair of pants and two shirts, then went to the register to pay. Queen Teen barely cracked a smile when one of her friends from elementary school stopped to say hi. They're both going to the same Jr High this year and she was shopping for school clothes with her mom too.

"Did you have fun this summer?" Queen Teen's friend asked.

Queen Teen looked at her for a moment then stared at her feet again. She shrugged.

I said, "She's just getting over a cold, so she may be feeling tired."

"I had a cold too. No fun," her friend replied. Then she dashed off to catch up with her mom. My daughter didn't notice she was gone.

Great! She has maybe two real friends and she ignores them when they say hello. Wonderful! She'll be sitting by herself every lunch for sure!

The woman at the register asked me, "Is she feeling okay?"

I shrugged. "Who knows. She's 13."

"Ah.... I see." The woman gave me a knowing smiled and nodded. "I know all about 13."

Every time I tell someone that I get the same response; that completely understanding, 13 is rough you poor thing hang in there it will get better in a few years I'm so glad it's not me, smile. Even people who don't have children give me that look because we ALL know what 13 is like: morose, temperamental, and bitter. Saying "she's 13" is like saying "she has a head ache," or "she has a tummy ache." Of course, we all say, nodding with a sympathetic smile. She'll get over it in maybe... three or five years. Poor dear.

When I told my hubby what happened he asked, "What set her off?"

"She's just 13."

He sighed. "How long does that go on?"