By Jeff Noble

Editor

Carmella Lawson and her 40-year-old son Jimmy spent last Saturday morning inside the Breathitt County Shrine Club building at Haddix. Earlier in the day, they made the trip from their home in the Lower Chloe section of Pikeville, and were getting ready for pizza and cake at a Christmas party in the Shrine hall. Jimmy’s eyes are wide-open as he scans the room. “I like to watch TV, and I love Myrtle Beach. But more than anything else for Christmas, I’d like to go to Gatlinburg and ride the Tram.” Jimmy looked at his mother, who then smiled and spoke. “He doesn’t ask for stuff, but he wants on that Tram. I’m afraid of the Tram, but he loves it. He can take his wheelchair and get on it.” Carmella then spoke about her life with Jimmy, who has Spina Bifida. “I’ve raised Jimmy by myself. It’s been hard. He had a stroke and had rehabilitation at Cardinal Hill in Lexington, but he’s worth every bit of it.”

The Lawsons weren’t the only ones there last Saturday. Five other families - up from three last year - came to Breathitt County for the second annual Holiday Party that was sponsored by the Spina Bifida Association of Kentucky. “It’s the first time we’ve been here in the Jackson area,” said Carmella as a helper walked past her and her son, carrying loads of piping hot pizzas. “And it’s the first time we’ll have a chance to talk with other families who have loved ones with Spina Bifida. Pikeville doesn’t have anything like this, and it’s the first time Jimmy has been at one of these. I like this very much.” Then Patty Dissell of Louisville asked Jimmy a short question. “Would you like cheese, pepperoni or sausage pizza, Jimmy?” Jimmy’s eyes got big and he quickly said, “Cheese!”

Joshua Walker was keeping an eye on the pizza too. “I’m watching that sausage pizza over on the table,” said the 17-year-old Junior at Betsy Layne High School. Joshua lives in the nearby community of Tram, just up Route 23, and is a member of the JROTC at school. Sitting in his wheelchair with his mother, Melissa and other family members, Joshua’s very active and very talkative. “I’ve been excited about coming over here today. I play basketball, love to be on the computer and Playstation 2.” He also has big plans for the future. “I want to go to college. Either at UK, Duke, UCLA, Vanderbilt or Alice Lloyd. But right now, what do I want for Christmas? I want to go to a UK ball game. Football, basketball, it makes no difference.” Someone tells Joshua the UK-U of L basketball game is coming up, and it’s on TV. He looks at the big-screen set in the room and smiles. So does his mom, Melissa. Today is her birthday.

Unlike the exuberance of Joshua from Tram, six-year-old Destini Hall is extremely shy. She doesn’t like to have her picture taken, and is a little afraid of Santa Claus. Her father does the talking for her at the table they’re sitting at. “She likes to ride a special bike she has, and she likes to sing in church. She also likes to aggravate her older sister,” said Bruce Hall of Chavies in Perry County. Still, she wanted to come to Haddix to see the “Ho-Ho Man”. “She told me she wanted to go rabbit hunting this morning, then come over her to see Santa,” added Bruce. “We were here last year during the first party, and here we can talk to other people who have children with Spina Bifida, and know we are not alone. With the others you can see how really blessed you are, because when you get down on yourself, you see others going through tough times. You see how parents struggle with what you go through. And if lifts your spirit. It’s especially inspiring at Christmastime.” And speaking of Christmas, when asked what Destini wanted, her dad smiled and said, “She wants a little bitty toy computer.”

Destini did walk over to get a soft drink nearby, as did a spunky two-year-old from Powell County. She sat back down with her mother, Kristina Williams of Clay City; her sister, Alliegh; and her brother, Caleb. Eating some Skittles and Life Savers, little Marcella Williams loves animals like puppy dogs and kitty cats. “All that little girl stuff,” said mom Kristina. “She was born with Spina Bifida, and because of it, we’ve had to make a lot of changes. We look at things differently now. I’ve had to give up my job as a nurse and help her full-time. As a result, it makes us more thankful for what we have.” Listening to Marcella say “Go get me, Mom, go get me,” Kristina quietly smiled and continued. “It’s very helpful to be here, because we have a Christmas party with other families. We’ve already learned a lot from others who’ve talked to us today. When you have a child with Spina Bifida, and you meet other families who have a child afflicted with it, you can relate to them.” Then Marcella squiggles loose from her mom’s hold and she runs to get a Pepsi.

Sitting down for a brief moment, Patty Dissell was looking at at Christmas CD, debating to put it in the player. She looked at the big room and grinned. “A lot of this is reaching out to people in Eastern Kentucky who can’t make it to Louisville for our functions,” said Dissell, who is the Executive Director of the Spina Bifida Association of Kentucky. Like last year’s party, she came down to put this year’s on. And to extend a helping hand to those families who have loved ones with the disease. “I see the families getting connected to each other, and this way, they can relate to others what they’re going through. They’re very compassionate. Nobody knows better unless you’re living it yourself. And they do.”

At the next table, Riley and Pam Hacker of Leslie County sit with a family friend, and their 12-year-old son, Josh. Sitting in his wheelchair, the Hyden resident who goes to Stinnett Elementary School talked about what he’s done so far today. “I liked the pizza very much, and I liked meeting new people. I hear Santa Claus will be here, but I don’t know what he’ll bring me. I hope it’s a PlayStation 2 game.” Then Josh spotted the big TV as the UK game was starting in Louisville. He smiled. “I’m a big UK fan!” His mom smiled as well, then talked. “There’s nothing for families who have children with Spina Bifida in Hyden, or for much of Eastern Kentucky, but this is a big help. They need to have more things for us, and they’ve come to meet us here. It’s a big help.”

Just then, Dissell shouted, “I think we have a visitor here!” Another volunteer, Sandy Phipps of Jackson said, “And if we sing ‘Jingle Bells’, he might come in!” The children and their parents sang. Destini put her hands over her ears. And the jolly old elf came in, armed with a big bag of goodies and toys. The kids enjoyed it immensely as they either sat on Santa’s lap, or wheeled their way to Mr. Claus. With flashbulbs popping from a Polaroid camera, pictures of the children and Santa were made available to all in the room. They had cake. They watched the UK game. And they opened their toys and games. With Sandy helping out the festivitives with Santa and Patty, her husband, John Phipps, had their son Johnathan in his arms. He was already asleep, leaving his stocking in his nearby scooter. “It’s good to see the kids and their families,” noted John of his son, who will be nine-years-old this Friday. “You can always see the love in them. And the parents are sitting around, enjoying their children with their Christmas presents. That’s what the season is for.” Sandy then comes over to check on Johnathan. “Yeah, Johnathan’s had a big day today,” touches him, and goes back to the stage.

Santa leaves, promising to come back next year. There’s enough pizza to feed an army, so the families are asked if they’ll take some back. Some do. People talk to each other, and some plan on coming back to this same spot next year. There’s a feeling of closeness with this group who came from Pikeville and Powell County and points in between. They shared the blessings of the Christmas holiday today. And they shared each other’s company. They were not alone, said Dissell. “They were asking me ‘How can we help other people in the area?’ After the gifts were passed out and the pizza put out to eat, they got to meet people, exchange stories, get phone numbers and asked how they could help our association. And that’s a lot of growth. These families have Christmas, too.”

Sandy came over and looked at the Santa pictures, saying, “When these people who came all over Eastern Kentucky spread the word, we’ll continue to grow. And for people who have healthy kids, they see that our families who have kids with Spina Bifida are just like them.

Today was our Christmas.”