Tuesday, October 29, 2013

Darby Jones

Yesterday at 1:30 p.m., heaven gained a new angel.
First recital 2009
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.
Our Original Posse 
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.

Left to Right: Kayla, Anna Ryane, Darby, Laura Beth and Carolyn
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 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.
Camp Merrimack 2009

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.

Thursday, August 22, 2013

Response to "My 'Perfect' Family

Well, clearly I struck a nerve with the blog post about my "perfect" family! There are a few comments posted directly on the blog, but my facebook inbox and email have exploded with messages of support. I'm not sure what resonated most but based on the comments, it seems the notion that we all have special needs is what people related to.

While I'm grateful to hear from so many people about the blog post, it's also heartbreaking to realize how many people are affected by drug addiction...it has crept into our society at every level, in every demographic. I have attended many NA (Narcotics Anonymous) meetings with Austin and often find myself thinking,
Austin, summer 2012
"These people don't look like drug addicts," but neither does Austin. What does a drug addict look like? He or she looks just like you or me.

I've had a hard time understanding the classification of addiction as a disease, as I'm sure many other people have. There's an element of choice that goes into using drugs that makes it hard to distinguish what part of addiction is the disease and what part of it is the addict making conscious decisions. All I know about the science of addiction is that there's something in an addict's brain that's different from the rest of us, something that overrides their ability to discriminate right from wrong. Because drug use is illegal (except for alcohol, which is most certainly a drug), it has a stigma attached to it, making it socially unacceptable to talk about.

Whether you believe its a disease or not, being a family member of a person who is a drug addict is  lonely and isolating. I'm a member of a group of women who have adult children struggling with addiction...the woman who started the group named it the "Casserole Club" because she said, "If our children had cancer, people would bring us a casserole. But because they are addicts, people don't even ask about our kids."  Many of the people who reached out to me said that it was brave of Austin and me to make his private struggle public.
Love this t-shirt!
To keep addiction  hidden in the shadows makes the stigma and shame that recovering addicts live with much worse; I may be ashamed for some of the things Austin has done, but I've never been ashamed of Austin.

Something I've found so powerful about attending NA meetings is the overriding tone of tolerance and acceptance that NA advocates. For those of you who don't know, people who go to NA meetings (or AA or any of the other anonymous support groups) are people who are committed to recovering from their addiction, which is very different from someone who is in active addiction, doing anything necessary to feed their drug habit. Once you decide you are ready for recovery and enter an NA meeting, there is no judgement from anyone about how you ended up there...the group is just glad you're on the path to a new life. I went to an NA meeting in Atlanta once - a midnight meeting for people who are gay, lesbian or transgender and even though I'm not gay, or a lesbian, or transgender or an addict, there was no judgement from anyone in the room - they accepted me into their group as if I was one of them.

The only other place I've ever seen such wide open acceptance is in our classes for people with special needs. People with disabilities don't judge anyone, they welcome everyone with open arms. They never judge what you look like, what you wear, where you live, how you talk, what you talk about, how you behave, what you do for a living...they never judge anything at all.

I bet you're like me...I don't want others to judge me; I want others to be patient with me; I hope other people will accept me the way I am. If I want others to accept and tolerate me, I should extend acceptance and tolerance to others all the time...drug addicts and people with disabilities have taught me that.

I certainly don't mean this to sound like I'm placing drug addicts and people with disabilities in the same category...not in any way! Drug addicts - when they are active in their addiction - are selfish, cowardly, liars who will do anything imaginable to get what they want. Drug addicts in recovery are just like the rest of us...we all have demons we have to battle within ourselves. I'm just saying that I've seen the greatest examples of acceptance and tolerance from people in these two groups. If we were all just a bit more tolerant and accepting of others, wouldn't it be a nicer world?

I'd like to think that volunteering in our program is one of the things that helped Austin get his life back on track. By spending time with people who struggle with challenges they have no control over, Austin was able to realize that he did have control over what he was struggling with and thankfully, he has chosen to work at overcoming his addiction. He has said that one of the things he's most ashamed of is that he willingly chose to do things that disabled his life when he loves so many people who face challenges every day that could limit their lives. He watches our students overcome those challenges and takes inspiration from them to stay clean and healthy.

I'm not sure what the message of this blog is. Maybe it's "Thank you for reading "My 'Perfect Family," or maybe it's "Let's all try to be more tolerant and accepting of others" or maybe it's "If you know someone with an addict in their family, reach out and let them know you care."
Kayla, Anna Ryane, Darby, Laura Beth and Carolyn
I guess the real point is that the most tolerant, accepting and inspirational people I've ever met are people with disabilities. They have a courage I couldn't begin to emulate, a willingness to accept everyone just the way God made us. Drop by Merrimack Hall any time you're in need of some acceptance, tolerance or inspiration...classes resume September 3!