Sunday, February 23, 2014

Love That Max: Special Needs Blog : Special Needs Blogger Weekend Link-up: it's post-tastic

Love That Max: Special Needs Blog : Special Needs Blogger Weekend Link-up: it's post-tastic

My first time to try the link up and I didn't get it right! My blog - - is about what I've learned from people with special needs after working with over 400 children and adults in the program of arts education that I created in 2008. Thanks for allowing this forum, especially for new bloggers like me! I love all of your posts - Max is amazing!

Tuesday, November 5, 2013

Living the Rich Life

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'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.

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.