Still Recovering from our Make A Wish Trip

"The Tightrope Walker" by Jean-Louis Forain

It's been two weeks since our Make A Wish adventure and Queen Teen is still smiling from the joy and excitement of meeting Laurie Berkner. She and I put the photos in the album Make A Wish gave her and we talked about the trip. She giggled as she looked at the pictures of Laurie, especially the one I took during the concert when Laurie had a "pig on her head."

I wasn't prepared for the emotional hurricane the trip created two days after our return, though. The exhaustion from traveling and caring for Queen Teen alone in a hotel for four days hit me hard, followed immediately by the blues so deep I couldn't stop crying. Make A Wish is a marvelous gift, but I suddenly realized I didn't want it.

For over ten years I've understood that Queen Teen's yet-to-be-named condition is degenerative, but I've avoided the idea that it could kill her. We focus on the here and now. The future is unknown because her condition is unknown. Some people say not knowing the outcome is harder, but for me, I like not knowing because that leaves the future open. Anything is possible, including Queen Teen's degeneration plateauing with no further damage to her cerebellum. Her neurologist explained that could happen and he's admitted that he really doesn't know what the degeneration will mean in the long run. Fine, then lets just deal with today and live with joy and determination. I refuse to mourn my child while she's standing right next to me.

Qualifying for Make A Wish shattered my healthy denial, especially when I saw the look on people's faces when I told them Queen Teen's wish was being granted. Everyone looked at me with a frozen, startled smile as I explained her Make A Wish dream. They wanted to be happy for us, but at the same time I could see the questions in their eyes. Is Queen Teen dying? I had no idea! Why didn't you tell me?

Now I'm having to tell myself the same thing I wanted to tell them. No, Queen Teen isn't dying, but she is at risk. We don't know what will happen. So please, can we just focus on the FUN part of this trip?

I wonder how many other parents have the same reaction I did about Make A Wish? The gift is incredible and life-affirming, while at the same time frightening. Perhaps Make A Wish should include that in the info packets they give to the families before the trip. Now don't be surprised if you feel overwhelming grief at the same time you are excited for your child.

I'm feeling more centered and calmer now, but it took several days and a call to my therapist. I see him whenever I feel like I've lost my balance on this tightrope called raising a special needs child. Sometimes we all need someone to steady us so we can move forward, one cautious step at a time.

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..."