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.

Living the Rich Life

Darby in 2012

Darby in 2012

Back in 2006, Alan and I were living the good life. Troubles with our son, Austin, notwithstanding, we, “Had it made,” so to speak. Alan had achieved a level of financial success that afforded us the luxury of enjoying the finer things…great vacations, a lovely home, nice clothes and cars…and also afforded us the luxury of knowing that we could send our kids to college, take care of ourselves into retirement and in general could live without the pressure that worry over money can create. There was no reason why we couldn’t have spent the last seven years continuing to live that rich life.

But doing that wasn’t enough for Alan.

He wasn’t satisfied with, “Making a bunch of money and spending the rest of my life buying things.” When he said that to me, I told him I was fine with spending the rest of my life buying things…but I didn’t really mean it. Before 2007, when Merrimack opened and especially until 2008, when I started The Johnny Stallings Arts Program, life was good, but it was hollow. There are only so many pairs of Monolo Blaniks a girl needs, only so many times you can jet off to some fabulous destination before you realize that those things, while awfully nice, do not a happy life make.

Instead of enjoying lunches with friends, going on shopping excursions and taking on the occasional volunteer chairmanship, I have worked harder than I’ve ever worked in my life – and Alan has too – for no pay. We’ve gotten lots of glory for our good works, won lots of awards, been patted on the back a lot, but we’ve sacrificed a lot these seven years – we’ve each donated 60 or more hours a week, we’ve donated millions of dollars, we’ve travelled a lot on behalf of Merrimack but haven’t had a proper vacation since 2010.

People have asked us why we’ve chosen to spend our money and our time doing this, leveraging what our financial advisors would tell you is a disproportionate amount of our resources to create and sustain Merrimack Hall. We always answer that we’ve chosen to do this because we can and because it’s what we think we are supposed to do in order to be good stewards of the good fortune that’s come our way.

As I’ve grown to know and love so many people with special needs and their families, I’ve certainly felt gratified for the work we are doing. I’ve known that my life has been enriched ten-fold by The Johnny Stallings Arts Program. But I didn’t realize the true extent of that enrichment until Saturday afternoon, sitting at Epworth Methodist Church at the memorial service for Darby Jones.

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.

Darby’s mother, Valerie, wanted ten of Darby’s closest friends to perform a dance at the service. We agreed on the song “Edelweiss,” as it was one of Darby’s favorites and something she and her beloved grandmother sang together often. All of last week, we had a grief counselor at Merrimack Hall every afternoon, talking with our students and their families as they worked through their sorrow. While the mommas cried buckets of tears last week, none of the students did. At the service, Melissa, Claire, Hayley, Sanders and I sat with the girls in the choir loft, partially hidden from the congregation by a large video screen. When the first chords of the organists prelude began, Anna C. lowered her head, as tears began streaming down her cheeks. Her best friend, Anna G. put her arm around Anna C., hugging her gently and stroking her hair. Anna G. kept repeating, “It’s okay. We still have each other.” As Anna C.’s quiet tears turned to sobs, Anna G. began to cry herself. But even as tears streamed down her own face, Anna G. remained as calm as she could, determined to comfort her friend. Many times during the service, we adults had to play “musical chairs” so that we could position ourselves near those who needed a shoulder to lean on and at one time or another in the service, each of the girls cried…gut wrenching sobs as they accepted the finality of the loss of their friend.

At that moment, I realized that those ten girls – and all the kids and adults in JSAP – have become family to me and that we’ve become family to them. How hard it must have been for those ten mommas to leave their children with us at the service, how much their hearts must have ached to see their children grieving and how much they trusted us to take care of their daughters during such an emotional event. Family is who we trust our most tender emotions with, family is who we turn to when our hearts are broken. The knowledge that those mommas trusted their babies with us, that we were all grieving a shared loss and that, as Anna G. said, “We still have each other,” brought a new revelation to me, a new understanding of the reason why Alan and I are working so hard to sustain Merrimack Hall.

Darby's friends before their performance at her memorial service

Darby’s friends before their performance at her memorial service

The reason is that an extended family has been created. People who would never have met before have been brought together in bonds of friendship and lives are being shared through JSAP.  Because Alan wasn’t satisfied with spending the rest of his life buying things, we have been allowed to be the facilitators of an amazing group of people, numbering in the hundreds now, who share a love of the arts and a love for people with special needs. This group of people is more valuable than anything money could ever buy. Prior to the advent of JSAP in 2008, I had limited contact with people with special needs. Today, I know hundreds of people and their families who have brought meaning and joy to my life. In this month of gratitude, I am overwhelmed with gratitude to Alan for having such a giving heart, to God for placing us in this position in the first place and to all the people I’ve come to know and love over the past seven years.

As we said good bye to Darby on Saturday, I silently expressed my gratitude to her. Darby and Valerie are responsible for about half of all of our participants – so wide was their circle of friends that each time we’ve added a new program, Darby and Valerie were our best recruiters. I’m grateful to Darby for bringing so many new people into my life, for being one of our original students – true pioneers they each are – and for being such a source of inspiration to me as our programs developed. I told Darby that I will never forget her, that she will live on in my heart and in every thing we do at Merrimack Hall. I thanked her for sharing her beautiful life and her many talents with me. Mostly, I thanked Darby for helping me see what these past seven years have meant to my personal life. As we all comforted each other and grieved together, I saw with clarity that my life today is more rich than it ever would have been before.

The life of one little girl brought hundreds of people together in celebration on Saturday, but no one was celebrating more than me…I was celebrating the knowledge that because of Darby and JSAP, Alan and I have more riches than money could every bring. Because of Darby, I understand with greater insight why we must continue to work, raise money and create new programs. As her loss continues to bring our JSAP family closer together, we will work even harder in her memory. We will celebrate her life in everything we do. And I will be forever grateful to her for showing me that I’m the richest woman who ever lived.


Darby’s Passing

Yesterday at 1:30 p.m., heaven gained a new angel.

Darby at her first recital

Darby at her first recital

I’m devastated by the loss of precious Darby Jones, one of the “Original Posse” in The Johnny Stallings Arts Program. I thought I had wrapped my head around the thought of losing her but of course, when it really happened I wasn’t prepared at all. Today, when I pulled into the parking lot of Merrimack Hall, I immediately broke down…knowing that I will never again see Darby dance on our stage hit me like a brick wall. I thought of all the times I’ve seen her pull into the parking lot with her mom, beaming from ear to ear because she was so excited to get to dance class or to perform in a show. I remembered back to our very first class on October 8, 2008. Darby was bald and in the midst of a round of treatment for her third bout with leukemia. Weak and pale, she was determined to get through those first few months of class, no matter how exhausted or sick she was.

Merrimack Hall became one of her favorite places…the place where she lived out her dreams of being a star. We have presented many luminous performers on the stage at Merrimack Hall – people who have won Emmys, Tonys and Oscars. But none of them could hold a candle to seeing Darby perform on stage. I will miss her so much.

Most of my concern today has been for her teammates. There hasn’t been a day that has gone by since Darby relapsed last May that someone from the Project UP gang hasn’t talked about her. Just yesterday, one of the kids said, “Hey, you know what? My friend Darby isn’t going to die or anything. She’s just in the hospital for a long time.” I have agonized over how the kids would deal with the loss of their friend and teammate, knowing that many of our students might not have a frame of reference for the finality of death. I shouldn’t have worried.

The "Original Posse" - Our first ten students in 2009

The “Original Posse” – Our first nine students in 2009

The Project UP kids told me things today like, “Did you know Darby is in heaven now? I bet she’s dancing up there.” Or, “Darby has died but she will always be in our hearts, won’t she?” Or the best one, “Could you be quiet for a minute? I’m trying to talk to Darby right now.” One girl said, “I’m going to miss her a lot but she’ll be here every time we dance,” as she pointed to her own  heart. Once again, I underestimated our students and their capacity to grasp what’s really important in life.

Darby at Camp Merrimack

Darby at Camp Merrimack

And so we will grieve the loss of a beautiful child, a child who taught us so much. The lessons I learned from Darby were to accept everyone just the way they are; to start and end every day with a smile; to enjoy every single thing you do every single day; to say I love you to the ones you love…a million times a day. Darby showed me what courage looks like, not just as she battled cancer but every time she came to dance class. Darby showed me what joy looks like, every time she smiled. When I looked at Darby, it was like getting a little glimpse of what God must look like. I ache for her parents as they face the staggering loss of their only child. I will remind myself that Darby was a gift in my life and that even though five years wasn’t enough, I was blessed to know her for as long as I did. And every time our students take the stage, I know Darby will be with me, right here in my heart.