There are some days that will be forever etched in my memory; days which I can call up from beginning to end that will always bring a huge smile to my face. My wedding day was one of these. So were my children’s birthdays. Lowcountry Down Syndrome Society’s 5th Annual Buddy Walk will undoubtedly be another.
First of all, it was the perfect day weather-wise. 75 degrees and sunny! Already I’m pinching myself thinking how blessed we are. I’m also always so impressed and humbled by the huge volunteer army that comes together for our Buddy Walk. They are there before dawn, putting up tents, tables, banners and posters, blowing up balloons, working side by side without complaint. They come, not only from our organization, but from area colleges, high schools, churches and businesses. A few volunteers take several hours, placing large poster sized pictures of each of our children along the walk route. This year, we had 75 of these beautiful photos in our collection, including for the first time, pictures of area adults with Down syndrome and other intellectual disabilities who are part of a new program we launched this year called NIGHT OF CHAMPIONS.
NIGHT OF CHAMPIONS was a standing room only awards ceremony and dinner that Lowcountry Down Syndrome Society sponsored back in June. It came about because of the tremendous success of our Buddy Walk. Make no mistake – if there was no Buddy Walk, there would be no NIGHT OF CHAMPIONS. Because of the incredible generosity of our community, we’ve been able to create this new awareness campaign designed to pave a brighter future for our children. According to the National Down Syndrome Congress, only twenty percent of adults with Down syndrome are working in the community. As an organization, we want to improve these statistics. So back in June, LDSS honored six area adults with Down syndrome and other intellectual disabilities who ARE working in the community – and their employers. We also honored one talented teen equestrian and his riding stable.
At precisely 9:45 Saturday morning, this distinguished group gathered again on the steps of the beautiful new band shell in Forsyth Park. They were our special guests, along with our master of ceremonies, local restaurateur and author Jamie Deen (yes y’all – Paula’s son :-)!) In fact, one of our NIGHT OF CHAMPIONS recipients, Bill Lester, mentioned to Jamie that his mom shops at the Publix store where he works, but that she often comes into the store “in a mask. “ Jamie said – “That’s no mask – that’s just my mama without her TV hair and makeup.” ( Boy, as a former news anchor, I can certainly relate to that! – I, too, often went to the grocery store “disguised” in a baseball hat, sweats and no makeup. :-))
I will never forget the look on our Champions’ faces, as they waited to be called on stage. Especially Stacy Pierce, from Zaxby’s in Pooler, Georgia. Her smile was huge and she was literally beaming. Honestly, it was like she was lit from within. I couldn’t stop looking at her and smiling myself. Then there was Jamie Deen’s son, Jack, a preschooler, who joined his Daddy at the microphone. Jamie’s wife Brooke told me, “Jack wants to be just like his Daddy.” Brooke and Jamie should be proud of their son and proud of themselves for including him in the Buddy Walk and exposing him to the notion that “we are all different – that’s what makes us the same!” All of us at Lowcountry Down Syndrome Society hope the Deen’s had fun and that they want to come back year after year. Jamie (and Jack) did a fantastic job. So did our Champions, including high school student and star horseback rider Michael Holton and Bill Lester, who both addressed the crowd.
Bill came armed with a pair of huge scissors that his sister, Laura Simpson, lent him, to cut the ribbon to begin the walk. (Laura is director of Special Events for the Savannah Convention and Visitors Bureau – CONNECT SAVANNAH – and a NIGHT OF CHAMPIONS cochair.) When she offered us official ribbon cutting scissors for BUDDY WALK this year, I was expecting a big, fake cardboard pair. When I saw they were real, I offered to carry them for Bill while he walked up the stairs to the stage to make his remarks, but he was having none of that. (Nothing against Bill – it’s just the natural mom of young kids reflex in me – “ooh – be careful with those scissors – don’t trip – that’s very dangerous, honey – watch out – be careful!”) But Bill was a man on a mission. He was there to make his remarks. He was there to cut the ribbon. He was wielding his BIG OL’ SCISSORS – He was in charge! And he did an excellent job. Thanks CHAMPIONS and your families for all you do for Lowcountry Down Syndrome Society. We have been so honored to have met each and every one of you and we are so grateful that you were willing to come to the BUDDY WALK and give back to LDSS.
After the ribbon cutting, the walk began – and what a walk it was! There were more than 3,500 of us!!! Can I say that again? – more than THREE THOUSAND FIVE HUNDRED people – walking side by side, shoulder to shoulder, to celebrate the lives of our loved ones with Down syndrome. I’m so proud of our “sleepy little southern town.” I remember reading about Lowcountry Down Syndrome Society’s FIRST Buddy Walk after a newspaper google search five years ago, from my desk at work in Wisconsin. It was during the time I was doing research for our move to Savannah. I remember being so impressed. Year ONE – they not only got newspaper coverage – they got more than 1,000 walkers! Now, four years later – to see it continue to grow like it has – and to be a part of it myself – is truly humbling.
Also humbling – the J-WALKERS!!! GO J-WALKERS, GO!!! I cannot say enough about our team and the love and support you all show for Jonathan and our entire family. There were 117 of you!!! Can I say that again – ONE HUNDRED SEVENTEEN J-WALKERS!!! For both our first timers and our veterans, thank you, thank you, and thank you! There were our close friends and neighbors, church friends, Phil’s work colleagues, Jonathan’s and Charlotte’s school chums and school staff members. There were also a few people we don’t well at all who just wanted to be on Jonathan’s team after hearing about the event –how amazing is that?
There was also Jessica Kiss, the morning news anchor from WJCL-TV who joined not only Jonathan’s team this year, but Lainey’s Leapers, the team of BUDDY WALK chair John Bogardus and his wife, Candy, who founded the Lowcountry Down Syndrome Society. Jessica has been a great friend of Lowcountry Down Syndrome Society for a few years now. She is four months pregnant and glowing. Several weeks ago when John and Candy came into her studio to do a BUDDY WALK interview, she shared with her television audience that if she were to find out she was carrying a child with Down syndrome, that would be fine with her. That public proclamation is in itself great Down syndrome awareness and Jessica, I’m personally grateful to you for that.
Then –speaking of grateful, there were the J-WALKERS who traveled from OUT OF TOWN to support our walk! Nevin Strite is the chairman of the Augusta, Georgia BUDDY WALK. He and his wife, his three boys and mother-in-law joined us. Nevin is a huge DEEDAH fan who is doing amazing things in Augusta to get the film in the hands of the medical community. Nevin, we are so humbled by your creativity, your passion and your help in getting DEEDAH out there. And we were so honored that you and your beautiful family came to walk with us.
And speaking of honored – we cannot even begin to express how honored we were that the chair of Atlanta’s BUDDY WALK, Jennifer Thanepohn, and her family came to stay with us – and to walk with us. Jennifer and Bobby are also huge DEEDAH supporters. Jennifer and I met at the Downsed conference in Atlanta back in September and instantly hit it off. So did our children and husbands. The Atlanta Buddy Walk was six days before our walk, so Jennifer and her crew were ready for a little well deserved R& R and downtime in the hostess city. (Instead, they walked into the lion’s den of insanity that was my house on Friday evening – see my previous post. :-)) But they rolled with it and made our Buddy Walk even more special. Jennifer and Bobby, your support and encouragement for everything that’s happening here in Savannah is high praise indeed. We are in awe of your energy and all you have done for Down syndrome awareness in Atlanta. We have fallen in love with your family and feel like we have known all of you for years, instead of months.
Also, a big thanks to Jonathan’s first grade teacher Becky Kirkonnell, who showed up despite out of town guests and her son’s homecoming game. And Jonathan’s paraprofessional, Rae Ann Upton, who came after her son’s game was over – and brought him along. Jonathan’s principal, Dr. Ethel Bowles, was also there – cheering on Jonathan, as well as Joshua Tobias and Whitley Divine, who also fielded teams, and who are kindergartners at Jonathan’s school. Thanks, too , to Dee Harriott, Julie Outz, Seale Navare and Anna Pierce, all staff members at May Howard school who are ALWAYS ready to cheer Jonathan on (and keep him in line ) – in the classroom and beyond. We appreciate all you do for Jonathan and are so proud to call you J-WALKERS!
We’re also proud that two friends and church members, Laura Link and Marty Susie, baked two amazing cakes for the BUDDY WALK bake sale. Your cakes raked in a total of $70! Thanks for lending your special talents in the kitchen to the cause. Jamie Deen also showed up with a big ‘ol, big ‘ol pecan pie!
We also couldn’t be prouder of the student athletes from Savannah College of Art and Design. Every year they show up early to help us set up. The girl’s lacrosse team did an amazing job “tricking out” our pirate ship this year. I was in charge of outfitting the ship and thanks to these great girls, all I had to do was open a few boxes, give a few minimal instructions and they took it from there. Thanks, too, Master Jaime Martorell of Ultimate Martial Arts (Jonathan’s karate teacher and fellow Lowcountry Down Syndrome Society parent) for hauling your pirate ship out to Forsyth Park this year. Thanks, too, for dressing up like a pirate! -AAARRRGGGHHHHHH!
One more word about the SCAD athletes – One of the greatest things about the Savannah walk is that they clap and cheer for our children as they pass them on the walk route. You guys can’t even know how special and encouraging your chants are to Jonathan and all the other children. THREE CHEERS TO YOU!!!
Three cheers as well to all our volunteers who always make the Fall Festival portion of the Walk so amazing. From church groups, to local high school students, to SCAD professors and art students, your generosity meant that we were able to man 20 kids activity booths this year – face painting, pumpkin painting, craft tables, the pirate booth, princess for a day and kiddie tattoo parlor just to name a few. I defy anyone to tell me there was something more fun going on for kids that day in Savannah :-).
Then there’s Laura Schurman, who until this year, ran the pirate booth along with her husband and family. This year, they wanted a “break.” But with the Schurman’s, that doesn’t mean skipping the event. No, it means taking a break from pirating, and creating something new. Something exciting, big and new. Laura, your BOO-TIQUE (all five tents of it) was AMAZING and so are you!!! Laura and her high school volunteers spent hours turning kids into spooky and scary sprites. Jonathan couldn’t stop looking himself in the mirror after his monster mohawk makeover :-).
Thanks, too, Brett Michaels, the owner of Tradewinds Ice Cream and Coffee (not the Poison front man ). Brett and his crew came out to the walk for the first time this year, providing walkers and volunteers with free coffee and ice cream all day long! Jonathan and I are also grateful to Brett almost every Monday. Jonathan does his homework there most Mondays, while we wait for Charlotte to get out of dance nearby.
Another first for the Savannah Buddy Walk – a Coast Guard flyover! Our friend and neighbor, Jim Emrich, piloted the chopper that flew over Forsyth as a Coast Guard tribute to the Buddy Walk. Jim’s new boss, Tim Tobias, is the new Coast Guard Commandant here in Savannah and is the proud father of kindergartner Joshua, who happens to have Down syndrome. Thanks to Tim and Jim and your crew members for honoring our event in this special and memorable way.
Also a Buddy Walk first – it was the first Buddy Walk for several of our Lowcountry Down Syndrome Society families, including Jewel Taylor and her children Jai-Lyn, Eric and eleven month old Jasmine. Jasmine, who has Down syndrome, was eight months old when Jewel first attended one of our meetings. It was the first time anyone had really congratulated her on the birth of her daughter. Jewel is also a huge DEEDAH and Jonathan fan. It has been such a thrill for me to see the impact Jonathan has had on Jewel and her hopes and dreams for Jasmine. Now her hopes and dreams for her youngest child are very much in line with what they are for her eldest children, as they should be. BTW – BUDDY WALK day was Jewel’s birthday! Happy Birthday, our dear new friend!
Finally, I personally can’t say enough about the Lowcountry Down Syndrome Society Board and executive committee. John and Candy Bogardus, Wendy Fears, Kristin Nyce, Joe Marchese, Ben Spitalnik, Brian Hussey and Kevin Sheehan, I am so honored to know you and your families. Thanks, too, to ALL our member families who also work so hard to make the BUDDY WALK a success. We have all been brought together by the precious gift of these children that God has put in our lives. May we continue to have the strength, the passion and the courage to do the right things for them and to help make the world a better place.
After this year’s BUDDY WALK, the day that I will continue to look back on and smile about for years to come, I can honestly say, “We’re on the right track!”