Friday, September 21, 2012

CHATS WITH THE CHAIRMAN - Special Parents


This year, I have the privilege of being a member of Leadership Huntsville - Class 26. We’ve had our Opening Retreat and two program days so far. The first program day was Economic Base Day and included a visit to the factory floor of Toyota Motor Manufacturing of Alabama (a Title Sponsor for Project UP!), a panel discussion with several entrepreneurs about starting a business in Huntsville, a visit to the Intermodal Facility at the Huntsville International Airport, a report from The Huntsville/Madison County Chamber of Commerce and a visit to the unbelievably impressive Hudson Alpha Institute.

Yesterday was our second program day, Federal Day, and was spent on The Redstone Arsenal. We saw some truly amazing things there - some of them so classified that I’d have to shoot you if I told you about them! I was embarrassed to learn how little I knew about what happens on the arsenal; while I’ve always recognized its importance to our community, I had no idea of the scope and magnitude of the work that goes on there, of the brilliant minds who have solved some of the most complex problems the human race has ever faced, or of the dedication to the soldier that drives every action taken by every one of the 36,000 people who work there. I learned anything a soldier in the United States Army touches, wears, eats, drives, flies, launches, or shoots is designed, engineered, tested, procured, modified and maintained right here in Huntsville. While at NASA’s Marshall Space Flight Center, we were told that NASA will be going to Mars in 2013, as casually as if we were being told they were going to Hazel Green - and we believed them when they said that. My father-in-law retired from NASA after a distinguished career as an aeronautical engineer on the Space Shuttle program, and even though I always knew he was very smart, I realized yesterday that I had never really understoond how incredibly smart he was.

At the Hudson Alpha Institute, we learned about the stunning breakthroughs in genetic research that were started by its founder, Jim Hudson, and are being taken to heights maybe even Jim never imagined. Jim is a friend of mine, a modest guy who loves rock and roll music; who is so humble about his accomplishments and discoveries that you’d never guess that he’s up there with Einstein as far as his peers in the scientific community are concerned. The scientists who work at the non-profit institute that Jim founded are working on projects that will completely revolutionize everything from how cancer is treated to how blood is tested for infectious diseases, and a million other things in between.

Last night, I was thinking about how so many of the most brilliant scientists and engineers in the world live in our community and how many of them I know personally. And suddenly, I thought about the parents in our arts education programs for people with special needs and how many of their email addresses end with “@nasa.gov,” or with “@hundsonalpha.org,” or with “@us.army.mil,” or Boeing or Lockheed Martin or hundreds of other “hi-tech names.com.” And my admiration for the parents of our students went up a notch, even higher than it already was.     Meet some of our parents in this short video!

One of our parents hugging her daughter during the
Dance Your Dreams! performance at Panoply 2012
Now, we all know that our children come to us the way they are supposed to, that God doesn’t make any mistakes. None of us want our children to inherit any of our flaws or shortcomings, but of course they do. We all want our children to inherit from us our strengths, our good points and develop those even further than we’ve been able to. I used to be a dancer and was thrilled when my daughter became one too. Alan was a drummer and takes great pride in our son’s musical abilities. What must it feel like to be one of those brilliant scientists or engineers and have a child whose IQ will never top 50? What sort of struggle must they go through to accept that child didn’t inherit one of their greatest strengths and passions? What must it be like to be able to solve engineering problems so that we can take men and women to Mars but not be able to help your child learn to write their name?

And then I thought about those parents who may not be scientists or engineers but who certainly have dreams for their children, like we all do. I have heard from so many of them, who speak freely about their challenges, parents who have told me of the grief they felt when being told their child had a diagnosis that would severely affect their ability to fully function in the world. I’ve often wondered how I would have reacted to that news and while I would like to think that I would have been able to handle such a diagnosis, I know that I would never have been able to do what the parents I know have done. They are made of more resilient stuff than most of us are.

The parents I have come to know handle what’s been dealt to them with a grace and dignity that we should all try to emulate. I see them coming to Merrimack Hall each week toting the things parents are used to toting, like briefcases, purses, lunch boxes, backpacks, sports bags, with siblings in tow as they drop their child off for class. But these parents also navigate wheelchairs, walkers, canes; maintain insulin pumps and cochlear implants; carry with them anti-seizure medicines or other medical equipment that their children are dependent on for survival. And each time I see them, these parents are smiling, excited to be at Merrimack Hall, thrilled to hear what their child accomplished in class that day. Not once in four years have I ever met a parent who was bitter, or felt sorry for themselves, or seemed downtrodden. Mothers and fathers both drop off and pick up kids, and I’ve yet to meet one who acted like their child had anything more serious than an allergy to something.

How in the world do they do it? How do these parents balance and juggle the demands of a career and family, of raising children, when one of their children has a disability, without ever seeming to lose their cool or their patience? How do they go through the battles the fight each day and still have a smile on their face? Because they do have to go to battle every day - with school systems, with organizations that deny access to their children, with people who segregate and leave their children out. I don’t know how they do it but they do - day in and day out, the parents I’ve had the honor to know strap on their armor and go to battle for their children. At the same time, they relish and adore their children and consistently tell us that they wouldn’t change anything about their children even if they could.

Coach Gene Stallings, the national championship-winning coach for the University of Alabama, had a son who lived to the age of 43 with Down syndrome. We had the honor of spending time with Coach Stallings and are proud to have our programs named in his son’s honor - The Johnny Stallings Arts Programs. Coach Stallings told me that for the first few years of his life, Coach Stallings prayed that God would change Johnny. And one day, just like that, Coach Stallings realized that God hadn’t changed Johnny - God had changed Coach Stallings.

Coach Stallings also said that if God had ever said to him, “I’ll give you one chance to make a choice - you can have a totally healthy son or you can have Johnny” Coach Stallings would have chosen to have Johnny, hands down, no question. Despite the challenges, despite the struggles, despite the health problems Johnny had all of his life; Coach Stallings would have never wanted any other son than Johnny.

Maybe that’s what having a child with special needs does to a parent - it changes them in a profound way that allows them to put life and its challenges into perspective. Maybe that’s how they are able to not sweat the small stuff, to never seem down or discouraged. All I know is that God must give special children to very special parents, parents who are more than equal to the task. I am in awe of each and every one of them.
Yes, we have some brilliant minds in our community. And we also have some brilliant parents here as well; parents who should be an example to rest of us of what it means to be a parent - to love and accept our children for the individuals they are, to celebrate their differences, to embrace their challenges. How humbling it is to be in their presence and I admire them - oh, how I admire them. They are the most special parents I’ve ever known.

3 comments:

Linda said...

Debra, it is because of people like you and Allan, who give of themselves to create programs in the community like the Johnny Stallings Art Program at Merrimack Hall that allow us to be able to focus on that joy we get when we can see our kids excited to come to class every week just like their siblings or friends can do or go up on stage and shine with such pride in showing the world what they can do. A million thanks wouldn't be enough to say how appreciated this program is for the kids who attend here.

Cindi Branham, Huntsville, AL said...

If your heart can be filled with tears and awe at the same time, that's how mine feels each time I watch the "Dance your Dreams performers.

And each time I think of them, or see my friend Lisa or her daughter Anna...I'm there again.

The profound strength and selflessness with which this program is approached is amazing. Debra and her staff and family are so inspiring to the rest of us for the work they do with these children, helping them to dance their dreams...simple dreams that each of us can do every day.

Tina Morrison Bedwell said...

The two previous comments are so very true!! I mirror their thoughts, feelings, and gratitude...
I would like to add a comment that Gene Stallings made when he spoke at Merrimack Hall a couple of summers ago. He stated, "The two saddest days of my life were the day my son was born, and the day he died." That expresses so well the fears we had for our children upon receiving "a diagnosis" that will make life more challenging for them, but further expresses the joys they have brought to our lives despite "a diagnosis".