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!

 

8 thoughts on “A Brave Boy Named Bill

  1. Reblogged this on the last and least and commented:
    Check out this awesome story of Bill, a young man who has impacted my life in a huge way in the short time I’ve been at Willowbrook. So cool.

  2. Beautifully written. Go Bill!! Our prayers are with him and his wonderful family. Thank you, from the bottom of my heart to the nurses and doctors who sang with him until he went to sleep. I can only imagine what that OR looked and sounded like during Bill’s time in need of your love, understanding and compassion and it brings tears to my eyes just thinking about it. God is so Good!!

  3. This is so moving,I am so proud of all of you that do this wonderful,loving service. They are so loving and are fun to work with.I worked for years with children and adults at first Baptist and got so attached to all of them. It was so delightful to me.

  4. Debra, this story was repeated this past Sunday at Willowbrook by Pastor Mark McClelland (who’s wife is also fighting cancer) as part of his message to inspire us to have a positive outlook for the future. He talked about Project UP and the positive influence it has and the positive outlook that Project UP members have towards life. As a bonus, his favorite saying was “Normal….is a dryer setting”…..I guess it’s becoming a thing now 🙂

    david

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