A Brave Boy Named Bill

Me and Bill in January

Me and Bill in January

 

Last week, I mentioned a student who would miss our recital because he would be having surgery to remove a suspicious mass. The final diagnosis came today … that student, Bill, does have cancer but the doctors are sure they caught it early, say he only needs two rounds of chemo and are confident of a complete cure.

Hearing this news takes a little of the sting away … at least it will just be two treatments, at least he will recover completely. Thank you to all of you who reached out to me after the last post, expressing your support of our organization, our students, our volunteers and the families who have suffered tremendous losses this year.

I’ve been working on two other posts for this week – a recap of our gloriously amazing recital on Saturday afternoon and another on our “Next Step” in an attempt to improve special education in our community – and was feeling pressured to finish them because the week is getting away from me.

And then, Bill’s dad told me a story today that I asked his permission to share with you, so the other posts will have to wait because this story made everyone at Merrimack Hall smile and “ugly cry” at the same time.

Bill has been in Project UP for three years and is an exuberant, enthusiastic and fantastic dancer. He can shred a mean air guitar riff, is a great partner when you want to do the shag and has deftly portrayed characters as different as Huck Finn and Danny Zuko in productions and dance competitions. He is always smiling, has never met a stranger and a hug from Bill … well, a hug from Bill can make even the worst day suddenly become the best day ever.

Last fall, I asked the Project UP parents for their permission to do something that might be considered a little too “in your face.” Hayley and Melissa wanted the kids to do a dance to that great 80’s anthem by Twisted Sister, “We’re Not Gonna Take It.”

 

Project UP performing "We're Not Gonna Take It" at NRG Dance Project in Atlanta this fall

Project UP performing “We’re Not Gonna Take It” at NRG Dance Project in Atlanta this fall

 

In a brainstorming meeting, one of us – we can’t remember exactly who it was – came up with the idea of putting the kids in t-shirts with slogans about whatever their diagnosis is. We put it to a vote and the parents unanimously agreed with our idea. We found some of the slogans through a google search and parents suggested others … imagine 42 people, ranging in age from 13 to 35, sporting ‘80’s themed hair styles, headbands and leg warmers and proudly wearing fringed t-shirts that said:

You’d be happy too, if you had an extra chromosome.

I have an extra chromosome and I’m not afraid to use it.

Am I rocking this extra chromosome, or what?

The rainbow is also a spectrum.

I have autism and I am awesome.

Don’t dis my ability!

or my personal favorite…

Normal is a dryer setting.

The dance ends with a fierce air guitar solo by the guys, with the gals jamming behind them and on the final clash of the drums, all the dancers end in a pose with their right arms extended high in the air and their fingers in the universal symbol for “Rock on, dudes!”

Each time they performed this dance, audiences responded with a standing ovation, shouts of support and usually, a lot of tears. It’s become sort of our theme song now … yes, the folks in Project UP have disabilities but it doesn’t bother them … they’re not gonna take it anymore!

They’re not gonna take being discriminated against or left out or marginalized or bullied or made fun of or … you get the picture! The dance seemed to leave the dancers feeling more empowered each time they did it.

 

Bill and Haleigh after the NYCDA Competition performance in Nashville

Bill and Haleigh after the NYCDA Competition performance in Nashville

 

So, back to Bill and his surgery last Friday. His dad said that Bill became anxious during the pre-op procedures. The nurses that were prepping him for the surgery asked Bill if he had any favorite songs that they could all sing together to help him relax.

Bill’s parents explained the “We’re Not Gonna Take It” dance and as Bill laid on the gurney, everyone started singing it. Bill marked the dance moves as best he could … he’s a great dancer but it must have been hard to get his groove on when he was attached to monitors and IV’s and laying on his back … but he worked it out!

Once in the operating room, away from his loving parents, Bill got scared again … really scared. So, one nurse started singing, “We’re Not Gonna Take It” again. And then all the other nurses started singing too. And then the anesthesiologist joined in…and then the doctors joined in … and then other technicians in the room joined in until the entire operating room was singing.

 

 

Bill performing at the holiday show

Bill performing at the holiday show

 

And Bill relaxed. And as the anesthesia began to take effect, Bill raised his arm high in the air, fingers extended into the “Rock on, dude” position and he fell peacefully asleep.

Imagine that … an operating room full of focused and competent medical professionals who have specific protocols and stringent procedures to follow … singing Twisted Sister to a young man with Down syndrome. What compassion they showed for Bill by singing his favorite song to him.

And imagine Bill, scared and confused and alone but comforted by those doctors, nurses and technicians as they sang. Imagine how powerful Bill must have felt when he reached down deep into himself and called on his faith and his courage and his inner strength.

Imagine how he expressed his strength … by raising his arm in the air and saying, not with words but just with a gesture, “Bring it on … I can do this … I’m not afraid … rock on, dudes.”

Last week, I felt defeated by loss. Saturday’s recital left me newly inspired because of the accomplishments of our students. And today, I feel proud to know a young man named Bill, who conquered his fears … and who is going to kick cancer’s butt … because he is brave and strong and faithful.

Bill is a rock star and cancer … well, Bill’s not gonna take it!

 

My Heart is Heavy

Me with our first group of students, including Darby, in 2008.

Me with our first group of students, including Darby, in 2008.

As we come to the end of the 6th program year of the Johnny Stallings Arts Program, I have been reflecting on all that we’ve accomplished in the past 12 months. We have experienced some incredible highs:

  • Project UP was selected to perform at the National Dance Day Gala in Los Angeles.
  • They were victorious at regional dance competitions in Alabama, Georgia and Tennessee.
  • We have doubled the number of people we are serving.
  • We completed the renovation of part of our building to house our new day habilitation program for adults.
  • We have re-vamped and improved our monthly social events for adults with special needs.

Personally, there have also been some tremendous high points this year:

  • I launched this new blog and website and have attracted over 25,000 readers in less than 90 days.
  • I completed 22 hours towards an Executive MBA in Social Enterprise from Columbia University and received a Certificate in Business Excellence.
  • I graduated from Leadership Huntsville Class 26.
  • I was honored by the Women’s Economic Development Council for my contributions to the community.
  • My son celebrated one year of sobriety.
  • My daughter moved back home after two years in South Carolina.
  • And Alan and I celebrated 28 years of marriage.

And yet, I feel so low today because no matter how high the achievements have been, the losses this year have been staggering. We lost our beloved Darby Jones on October 28, after her courageous battle with leukemia. One of our students underwent a kidney transplant at the Mayo Clinic and is still recovering from the surgery. Another student is slowly recovering from a series of strokes and grueling rounds of chemo in her battle with leukemia. We lost an adult in the day program to colon cancer, a beautiful man who we immediately fell in love with and lost way too soon. A three-year-old girl has spent the last few months in outpatient treatment for various health problems and another young child is in a body cast, recovering from hip surgery. Just this morning, we learned that a member of Project UP, who should be receiving his trophy and being recognized as a high school senior at our recital on Saturday, will instead be recovering from surgery that is scheduled for Friday to determine if he has cancer or not.

And last Thursday morning, we lost a precious 9-year-old girl, an unexpected and heartbreaking blow to our program. When I started this program, it didn’t occur to me that the volunteers I recruited might have to face loss and pain nor did I realize that along with watching our students achieve great personal milestones, I might also have to watch them die.

Project UP with Melissa, Claire and Hayley in Los Angeles this summer.

Project UP with Melissa, Claire and Hayley in Los Angeles this summer.

Melissa, our Program and Operations Director, is expecting her first child any day now … Merrimack Hall’s first staff baby. While we were at the visitation on Sunday evening, Melissa reminded me that she began her pregnancy at Darby’s funeral and is ending it with the loss of another student … and that was before we learned the news of our other student possibly having cancer.

What a contrast … a new life beginning while others have ended.

I’m reminded of something I heard in my Sunday School class a few years ago. Dr. Donn Wheeler, an esteemed obstetrician, was leading our class in a discussion about the virgin birth. Dr. Wheeler said something like this: I’ve delivered thousands of babies over the course of my career. I can tell you the mechanics of how an egg and a sperm come together to form life and I can explain every step from conception to delivery. I know the science and the medicine like the back of my hand.

And yet, at each birth I attend, I’m reminded of the miracle of life and even though I can tell you the ins and outs of how that life came to be, it’s no less a miracle every time.

As I’ve become involved with people who have special needs, I’ve thought of Dr. Wheeler’s words many times … about the intricate marvel that is human life and about how easily things can go off course.

I’ve thought about how lucky I am that my pregnancies were uneventful, that my children were not injured during birth, that all of their chromosomes lined up in their proper order, that every molecule in every cell came together in just the right way … at just the right moment … to produce a healthy baby.

I’ve thought of how tenuous life is, how easily things can go awry, how fine the line is between complete health and something going terribly wrong.

On Thursday, Melissa and I had to tell the volunteers and parents that one of their classmates had passed away and the reaction from the teenagers who volunteer in the class was painful to see. I feel responsible for their pain because I’m the one who started this program, encouraged teenagers to get involved with us and put them in the position of laying their tender hearts on the line. I know in my head that being involved with JSAP is enriching the teens’ lives and that they are better people because they’ve allowed our students into their hearts but my heart is heavy when I see them grieving, questioning “why” and hurting so deeply.

On days like this, I fight the urge to say, “I can’t do this anymore.”

I said to Alan this morning:

“I wish I could do this without getting so personally involved”

He answered:

“You can’t because that’s why the program works … because everyone is a family now.”

I know he’s right and I remain committed to the work we are doing but sometimes, it just sucks, plain and simple.

Our students at the 2010 Dream Big! spring recital.

Our students at the 2010 Dream Big! spring recital.

Winston Churchill said, “In each person’s life, there comes a moment when they are figuratively tapped on the shoulder and offered the chance to do a very special thing, unique to them and fitted to their talents. What a tragedy if that moment should find them unprepared or unqualified for that which could have been their finest hour.”

I got that tap on the shoulder in November 2008, when I was first inspired to start a dance class for children with special needs. That tap on the shoulder led me to do something I never could have imagined, it’s introduced me to people I never would have met and it started a chain reaction that created an entire community of lives that never would have intersected if it hadn’t been for that one little dance class.

Until this year, I thought my tap on the shoulder was only going to be a source of happiness but the truth is that happiness and sorrow have to come as a pair…without one, you would never appreciate the other.

I wouldn’t trade knowing Darby or Anthony or Genavieve for anything in the world and I would bring them back if I could, but I can’t. If I could, I would give my own health to prevent other students from suffering, but I can’t. If I could, I would guarantee every teenager who decides to volunteer with us that nothing bad will ever happen to any child they meet and love through our program, but I can’t.

All I can do is remind myself every day that I got tapped on the shoulder for a reason and that tap on the shoulder created a family, so at least all of our hearts share the same pain. Winston Churchill never said that answering that tap on the shoulder would be easy or that it wouldn’t involve getting hurt but he did say that if we answer our tap, it will be worth it.