No, I’m Not Trying To Be Like Angelina Jolie

Latest information on my preventative mastectomy journey: I’ve now had three consultations at UAB and plans are moving forward. I won’t know anything further until I have a plastic surgery consult about reconstruction later this month. I expect that appointment to result in final preparations and for a surgical date to be set sometime in February or March. I will write about my journey again at that time.

I’m not sure what I thought would happen when I wrote about being positive for the BRCA gene mutation on The Huffington Post but I didn’t expect that over 500,000 people would read my words. I didn’t expect such an outpouring of support and encouragement from people all over the world. And I sure didn’t expect criticism from total strangers or dogmatic pronouncements about my “uninformed” decision.

The first negative comment was a surprise. “You must be trying to be like Angelina Jolie.” Really? Is this a joke?

Angelina Jolie pic

I assure you, I’m not having a preventative mastectomy because I’m trying to be like Angelina!

 

But comments in that same vein continued, along with messages saying “Please read the attached article,” one after another slamming the so-called  “Angelina Effect,” the name given to the increase in the number of women undergoing genetic testing after Mrs. Jolie’s New York Times op-ed, My Medical Choice.

I’ve been sent articles that say Mrs. Jolie’s decision to share her medical choice with the world was somehow connected to an under the table deal with the company who, at the time, owned the patent on the BRCA mutation test (the Supreme Court has since ruled against Myriad Pharmaceuticals and their attempt to patent gene mutations). In messages to me, people called her “stupid,” “foolish,” and “daft” and someone referenced the “questionable lifestyle choices that led to her BRCA mutation.” I’m no expert, but my understanding is there are hereditary mutations and acquired ones, with BRCA 1 and 2 being hereditary…if you have those gene mutations, you inherited them from one of your parents and they’ve been with you since your conception.

One person said in an email, “If Angelina ever actually gets cancer, it will be because she and Billy Bob drank each other’s blood and she used to shoot up heroin, not because she has some gene problem.” Really? Are these real people?

Obviously, I don’t know Angelina Jolie but I do know Billy Bob Thornton and he is one of the most down-to-earth, good ol’ Southern gentlemen I’ve ever met. He’s been a guest in our home and we’ve been to his.

Billy, Teddy Andreadis, Alan and friends around the piano at our house

Billy, Teddy Andreadis, Alan and friends around the piano at our house in 2010.

 

I am confident that he and “Angie” never drank each other’s blood but even if they did, show me the evidence that drinking blood causes cancer, please.

Besides the Angelina Jolie haters, I’ve heard from holistic medicine advocates, those who don’t trust the “medical establishment,” people who believe that all cancer is caused by lifestyle choices and can be prevented or cured by eating a certain herb or root or, I don’t know…clicking your heels together three times while throwing salt over your left shoulder?

People have told me that if I choose preventative mastectomy, I will be mutilating myself for no purpose, that I will be playing directly into the hands of some huge conspiracy between pharmaceutical companies and surgeons, that I will be cutting my life short by the surgery rather than extending it. One person actually wrote me this question: “Without breasts or ovaries, how would you be any different from a man?” Really?

None of these people offered up any credentials but I doubt they are doctors, researchers, genetic scientists or other experts. I’ve personally met with all of the above and while all of them have presented me with options, information about the importance of diet and lifestyle, statistics and concrete evidence, none of them have told me that by eating nothing but turmeric or curry or if I eliminate all dairy products from my diet, I will never get cancer and will live to be 110.

I’m confused about who these people are. The people I’ve heard from who have actually been affected by breast or ovarian cancer, either themselves or through a loved one, and those who are BRCA positive have offered a universal message…do your homework and then make the decision that is best for YOU. They have said things like, “here are resources you should know about” or “here’s what happened to me” or “this is what my wife decided to do” followed by “I hope this information helps you” and “you are not alone” and “thank you for sharing your struggle, as I’m feeling the same emotions.”

Dogmatism is defined by Webster’s as “the tendency to lay down principles as incontrovertibly true, without consideration of evidence or the opinions of others.” People who are dogmatic think just because they believe something, it’s so. The people who have questioned and criticized my choice are absolutely convinced that theirs is the right opinion. But we all know what they say about opinions.

Obviously, I opened myself up to receiving this negative input by writing publicly about my choice and the conflicting emotions I feel about it. I accept that and frankly, have had more than a few cathartic laughing spells as I’ve read the pontifications, proclamations and dire predictions from the people who are so convinced they are right. And maybe they are. I don’t know because I take a pragmatic view.

I chose to share my medical dilemma because I wanted to know if other women in the same position had ever felt the same way. I wanted to know what other women with the BRCA mutation chose to do. I wanted to know what options were available in other communities. I wrote about my feelings because even though I think I’m tough, I’m not as tough as I thought I was. I’ve lived for 28 years with Crohn’s disease and have endured my share of health issues but the thought of electively removing my breasts and the pragmatic reality that I have an enormous risk of developing breast cancer regardless of anything I may change about my lifestyle to prevent that from happening…well, frankly that knowledge brought me to my knees.

I am encouraged, inspired and humbled by the words of support from friends and strangers, by the sharing of personal medical decisions from women around the world, by invitations to join uplifting social media groups where vital information is shared by previvors and people already battling cancer. I might not have sought a third and fourth opinion if I hadn’t written that post and I definitely wouldn’t have been invited to have a two-hour meeting with one of the world’s leading genetic researchers (a post on what I learned in that visit is coming soon).  If the price for all of this insight and advice is a few haters, then I’m happy to pay that price.

As for me trying to “be like Angelina Jolie,” in my humble opinion she seems to be a pretty solid person who uses her resources to address issues that matter to her. That’s what I’m aspiring to do through my organization and The Johnny Stallings Arts Program so maybe I am trying to be like Angelina Jolie.

Next post will be about these folks, not about me!

Next post will be about these folks, not about me!

Which is exactly why the next post you read from me won’t be about my boobs or my medical decisions but will be about something much more important and way more interesting…it will be about the people with special needs who have changed my life.

Jonathan and Vivian are much more interesting than mastectomies!

Jonathan and Vivian are much more interesting than mastectomies!

 

My Mastectomy Decision

This post is the second in what will be a series, documenting my experiences with the BRCA gene mutations and pending medical decisions. Thank you for following me on this journey, and please continue to send me your stories via email or in the comments below. 

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Dear Readers:

Two weeks ago, I wrote a post about my conflicting emotions about whether I should undergo a preventative mastectomy and The Huffington Post published it — you can read that post here. Hundreds of people from all over the world have read it, hundreds have sent me comments and emails and I’ve been introduced to a new “sisterhood” of women. Turns out, there’s a word for people like me who are BRCA positive: We are “previvors.” I like the sound of that word: surviving something by preventing it from happening. Your support has been overwhelming and I will be forever grateful to the women — and men —who have reached out to offer their advice and have shared their experiences.

One of the comments I received was from a woman who said, “I had a preventative double mastectomy 8 months ago and I still second-guess myself. Yes, I know I had an 85% chance of developing breast cancer but that means I also had a 15% chance of not developing it. I’m glad I had the surgery and like my new breasts but I guess I will always wonder … did I do the right thing? There something about having a choice that makes this more hard.”

I agree with her. But that’s the thing about being given a choice … eventually, you have to choose.

It’s been a busy two weeks. I’ve had consultations with general and plastic surgeons locally and out of town. I’ve had a breast MRI and discussed the results with my gynecologist. I even got to meet with the President of the Hudson-Alpha Institute for Biotechnology, where a team of geneticists are working with Dr. Mary-Claire King and others to further study genetic mutations and cancer. Stay tuned for details on what I’ve learned from them, which I will write about in a separate post!

Bolstered by your comments and encouragement, I sought second and third opinions. I have an existing chronic health condition that requires regular infusions of a drug that suppresses the immune system, an important thing to factor in as I consider any possible surgery. In my hometown, I was told that my only option was to have three surgeries and that nipple-sparing was not an option. That didn’t sound right to me. And then two different doctors said things that I found objectionable, to say the least.

One doctor said that there was no reason to think that losing my breasts will have any impact on my intimate relationship with my husband, to which I replied, “The ‘girls’ have always been very involved in my intimate life with my husband, thank you very much. If we were talking about your penis, would you say a thing like that?”

And a local plastic surgeon — yes, a plastic surgeon (who probably makes piles of money every year performing cosmetic breast surgeries) — said, “Why would you be concerned with saving your nipples? If you are already going to mutilate yourself, why would you run the risk of leaving a nipple that might become necrotic?”

I think I’ll pass on a plastic surgeon who says breast reconstruction is mutilating myself.

Eighty miles south (but 25 years ahead of us) in Birmingham, Alabama is a highly regarded cancer center. I met with the surgical team who performed preventative mastectomies on two of my cousins who are also BRCA positive. Both of my cousins had nipple-sparing breast removal and reconstruction in one surgery and both of them are thrilled with the result. The breast surgeon told me that she wants to save my life by preventing breast cancer but she also wants me to be happy with the outcome. She was well versed in genetic medicine, explained the options in layman’s terms I could understand and did not minimize my fears or concerns. I have decided that she will be my surgeon and am waiting for my first consultation with the plastic surgeon who works in collaboration with her. Pre-op orders are starting to come in, I will travel to Birmingham several times over the next few weeks and we are shooting for a mid-February surgery date. I realize that it is a gift to plan this operation, as opposed to the rush to surgery required when cancer is present.

So, yes, I’m going to lose my breasts and no, I’m still not too happy about it.

I wonder if I would feel differently if I had to lose another body part … would it matter as much to me if it were an arm instead of my breasts? Because it does matter to me, a lot, even though I’ve made the decision and will not change my mind. And no matter how hard I try, I can’t seem to wrap my head around the notion that they will be gone. Women have told me that the entire process — the decision, the surgery, the recovery — takes a physical and emotional toll even greater than they anticipated. Which is exactly what I’m afraid of. Surely by the time of the surgery, I will be ready. I’ve come a long way in just two weeks so in another couple of weeks, maybe I’ll be a “rock star” level previvor. At some point, I imagine I will stop asking questions because there does come a time (for me) when too much information becomes overwhelming.

In just two weeks, I’ve come to terms with understanding that my genes long ago predetermined the fate of my breasts. The BRCA mutation is just one of the many flaws that were with me from the beginning, mapped out on my genome somewhere near the gene that gave me Crohn’s disease, maybe close to the gene that prevents me from being able to understand simple math and next to the one that makes me so impatient and impulsive.

But still, the first thing I think every morning is, “In about 8 weeks, I will be having major surgery to remove and reconstruct my breasts.”

I’m just one woman among thousands who is making this decision, a very personal one that is different for each woman. Writing about this process is helping me cope with it. Connecting with women who have been where I am is helping me understand it. Talking with my husband is helping me accept it.

Knowing I am not alone is making all the difference.

With gratitude,
Debra

 

Repost: 4 Reasons Why I Don’t Want to Lose My Breasts

The following post was originally published on my blog at The Huffington Post.  I am reposting it here for archival purposes.  After testing positive for BRCA1 gene mutation,, I decided to write this post – and have subsequently been inundated with stories and personal accounts of hundreds of women just like me. 

Because of this, I will be chronicling my medical journey — and ultimate decision about whether or not to opt for an elective mastectomy to remove breasts — on this blog.

 Please follow me on my path, and continue to send me your stories via email or in the comments below.

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The surgeon and I talked for a long time.

He looked carefully through the surgical notes from my previous breast surgery and at the films from my most recent mammogram. Then, he crossed his arms over his chest, leaned back in his chair and peered at me over the top of his bifocals.

Firmly, but with compassion, he said: “Your breasts have to come off.”

He saw the tears welling up in my eyes, tears that surprised me because after talking with a genetic counselor and five other doctors, I knew this would be his verdict.

He leaned forward, took my hands in his and said: “When is the best time to remove your breasts? The day before you get breast cancer. We know you will develop breast cancer, but since we don’t know exactly when that will happen, we need to take them off now.”

I found out in July that I carry the BRCA 1 gene mutation. My mother also has the mutation and is a 13-year breast cancer survivor. I pray daily that when my daughter’s results come in, they will be negative. I had my ovaries removed three weeks ago, but I’m having a hard time with the decision to remove my breasts.

And so, like thousands of women today, I’m offered a choice: alternate mammograms and MRI’s every six months or undergo an elective mastectomy, which would reduce my risk of developing breast cancer from its current 85% before I turn 60 (in a mere six years) down to about 5%.

Me, my mother, and my daughter in 2008.

Me, my mother, and my daughter in 2008.

Somehow, I had the impression that an elective mastectomy was different, less invasive than one performed when cancer is present. I convinced myself that the surgery would be more like the cosmetic breast reduction I had four years ago.

Well… I was wrong.

I do plan to talk with other surgeons, but the picture this doctor painted for me included drainage tubes and extenders, multiple procedures over an 8-12 week timeframe, and nipple reconstruction or tattooing. The conversation and pictures he showed me — and what I interpreted as his opinion that reconstruction should be a low-priority concern — was not what I had anticipated.

Given the odds, I will probably have the mastectomy within the next six months. But I don’t want to do it and here’s why:

  1. I’m scared. And I feel so guilty for feeling scared because I know dozens of women — including my mother — who have survived breast cancer thanks to a mastectomy, radiation and/or chemotherapy. I see them now… cancer-free, strong and proud, grateful and resilient… and feel like a jerk that I’m even questioning the gift of having an option they didn’t have. And then I think of the beautiful women I know who lost their war with breast or ovarian cancer, women who would have given anything to have the choice I have and wonder…what the hell is the matter with me?
  2. I’m frustrated that there aren’t better options for reconstruction and I’m angry that we don’t have a cure yet. If big pharma can come up with drugs that give men erections for up to four hours, why can’t they do better for women? Our mothers, daughters and sisters are battling cancer in record numbers, but the scientific community can’t seem to keep up… or maybe issues like erectile dysfunction are higher on the priority list. People around the world are donating money, running in races, wearing pink ribbons, lighting luminaries and advocating for women’s health issues. The scientific and medical community should lead us in this fight and step up their game… or at the least, come up with better options than what we have now.
  3. I’m worried about what my husband will think of me. Which is silly, because we’ve been married for nearly 30 years and I know he wants me around for at least another 30. Whether my husband will still find me attractive should be the last thing on my mind. I should feel empowered to have information that could save my life and yet… I’m hung up by vanity and pride. Alan says he wants me to have the surgery… but he wasn’t with me at the surgeon’s office. What if he feels differently when he’s fully informed?
  4. My breasts are an integral part of my sexuality and my identity as a woman. The thought of losing them is sad because it means that an important chapter of my life is being closed forever. When my breasts first developed, they told me I was becoming a woman. For about 30 years, they reliably signaled each month that it was time for my period. Before I had any other symptoms, my breasts told me that I was pregnant. My breasts nourished my babies. I’m not a beautiful or sexy woman, but my breasts make me feel feminine and attractive. They have done their job well all of my life and I will miss having them… and then here come those guilty feelings again. Every woman who has a mastectomy probably feels this same way… but they also have to cope with life-threatening cancer at the same time.

I tell myself to get a grip because I’m acting like a wuss. I remind myself of what my students who are medically fragile have to endure on a daily basis and realize I’m being selfish.

I think of all the women who didn’t have this heads-up that disaster was looming just around the corner and I know I’m a fool for hesitating for even one second.

I don’t like to gamble and yet, that’s exactly what I’m considering. I’m thinking of rolling the dice and hoping I get lucky… and don’t develop breast cancer. If I’m right, the prize is that I get to keep my breasts and if I’m wrong … well, I lose everything. If I wait until I get breast cancer, there won’t be any choices … only toxic drugs and radiation and desperate attempts to save my life.

How can I be trying to come up with reasons why it would be OK to keep my breasts instead?

So, today, I’m going to let myself cry, because I’m scared and ashamed of myself.

I will cry because even though I thought I knew what women with breast cancer have to endure, I didn’t have a clue.

I will cry because I am in awe of their bravery and resilience.

I will cry because I’m afraid I’m not woman enough to do what they have done.

Today I will cry because I don’t want this gene to be a fault that I unknowingly handed down to my children.

Tomorrow, I will give thanks for this chance to control my own fate. Tomorrow, I will ask my friends who have gone through this for their advice. Tomorrow, I will begin the search for other surgeons who might offer better options. And tomorrow, I will remind myself that I am not defined by my physical appearance or my breasts and that nothing can take away or diminish my womanhood.

If you are considering or have already had an elective mastectomy and are comfortable talking about it, please comment below. Your experiences, your advice and your input could help me and the thousands of women who read this blog.

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.

Missing Darby

Darby in 2010

Darby in 2010

It’s been 95 days since Darby passed away. In some ways, it feels much longer than that and in other ways it seems like yesterday. I still expect to see her every Tuesday, smiling as she sings and dances with her friends. Every Monday in our creative writing class, I wonder what Darby would add to our story, remembering how much she loved to write and tell stories. Her name is still listed on our class rosters, her pictures are everywhere at Merrimack Hall and we have her name emblazoned on the wall in the dance studio…The Darby Jones Dance Studio. She is with us every day and yet she is gone…a 14-year-old girl whose life hadn’t even started…and she’s gone.

When we were preparing for her funeral, her mother, Valerie, wanted us to find a way to display Darby’s “Beads of Courage,” an impressive collection of beaded necklaces that the folks at Children’s Hospital in Birmingham helped her make. Each bead on the multiple necklaces Darby made represent a procedure…a spinal tap, a blood transfusion, a surgery, a chemo treatment. Literally hundreds of beads that stand for the hundreds of intrusive medical interventions she had to endure are strung together in at least 10 individual necklaces, each one long enough to wrap around Darby’s neck several times and still hang to her waist. She was proud of her Beads of Courage and loved explaining what each of the beads stood for, especially the beads with a picture of a face on them that have wiry curls sticking up…these beads were for the times Darby lost her hair during chemo. We covered heavy foam board with blue velvet fabric and used floral pins with pearls on the tops of them to hold the necklaces in place. At Darby’s visitation the night before her funeral, they were displayed beside her coffin on brass easels, uplit with small lights we brought from the theatre. After the visitation, we carefully loaded them into my car so that we could set them up at the funeral service.

As Sanders and I were preparing to leave my house for the funeral, we had to put a few more things into the back of my car and in the process, I broke one of the strands of beads. Beads rolled everywhere…all across the floor of my garage and into every nook and cranny of my car. We frantically chased them down, stuffing them into our pockets as we found them. We waited until we arrived at the church to assess the damage and were horrified to realize that we had lost one of the beads. We searched my car high and low but couldn’t find it anywhere.

While I worked with the florist to set up the sanctuary, Sanders drove to three different craft stores before she finally found the same string used for the necklaces so she could re-string them. Back at the church, I hid Sanders behind the large video screen we brought in and told her to restring that necklace as fast as she could before anyone else could realize I had broken it. I knew I would eventually tell Valerie that I had broken the necklace and lost a bead but I didn’t want her to know on the day of the funeral.

Sanders got the necklace restrung, working off of a photo we had taken at the visitation to get the order correct and no one was the wiser that day. A few days after the funeral, I was loading groceries in the back of my car and found the missing bead…in a place I had looked twenty times before. There it was, a simple red acrylic bead that stood for a blood transfusion. How could I have overlooked it when we tore my car apart trying to find it?

The day I found it, I had been feeling down and sad, replaying the funeral in my head. While the service was beautiful and comforting, it was as heartbreaking as you could imagine…there is something very wrong about a funeral for a child. I kept choking up that morning, remembering the tears that streamed down Anna C.’s face as Darby’s parents walked in the church behind the coffin. And then there it was – a little red bead – and I could feel Darby with me. I carry that bead in the change compartment of my wallet where I see it every day.

Darby and her mother Valerie at her final performance with Project UP, at the hospital.

Darby and her mother Valerie at her final performance with Project UP, at the hospital.

I will never understand why Darby had to leave us so soon. I believe that everything happens for a reason but for the life of me, I can’t imagine what reason there is for ending the life of a child. I’ve caught myself getting mad at God when I see a story in the news about some horrible criminal, thinking, “If God had to take someone on October 28, 2013, why couldn’t He have taken that wretched person instead of Darby,” as if God uses some sort of quota system to determine how many people should die each day. I’m sure it doesn’t work like that but it rankles me to think of all the people on this earth who are here doing evil things while Darby’s chance at a long life is gone.

When I told her about breaking the necklace, Valerie laughed at the image of Sanders and me scrambling all over my garage and car, hiding behind video screens to surreptitiously fixing the broken strand. I told her that I’d found the missing bead and offered it back to her but she wanted me to keep it. I’m grateful for that, I find comfort in knowing that bead is with me all the time. The bead used to represent a procedure that Darby endured but now, it represents her…her courage, her optimism, her beauty. Knowing Darby was one of the greatest blessings of my life and I wasn’t ready to lose her…neither were the hundreds of other people who loved her. I’m trying to live like she did – in the moment, with joy, with complete abandon – but I could have used a few more years of her influence to get it right.