In July of 2003 our youngest daughter's wish was granted bt the Make A Wish Foundation and we were sent to Orlando for a week. This is excerpts from a journal that I kept while we were there. Please enjoy.Here is the article that Heath wrote:
A NEW MEMORYSick girl has wish grantedBy HEATH WALDROPManaging editor
A small crowd gathered in a parking lot in Crossett on Sunday, anxiously awaiting a special arrival. All of the elements for a party to be thrown in the guest’s honor were in place.Within minutes a white stretch limousine could be seen in the distance.“I see it,” someone said. “She’s here!”The luxurious vehicle pulled up and came to a halt. Hushed onlookers watched as the door opened.Out stepped not a famous entertainer or any well-known celebrity, but instead a six-year-old girl battling a terminal illness—carrying with her a bouquet of red roses and a meek smile.•••Chloe Shaver of Crossett has cystic fibrosis. The red carpet treatment came courtesy of the Make-a-Wish Foundation, which recently selected her for a trip to Walt Disney World in Orlando, Fla., and a big send-off party.While known about by the girl’s parents for a couple of weeks, the all-expenses-paid vacation, along with the party, had to be kept secret from young Chloe.“It has been really hard not to say anything,” mother Deborah Shaver said. South Arkansas Make-a-Wish coordinators Judy Lovett and Beverly Rice were responsible for organizing the event, and for designing excuses to get the girl from her house to party central at McDonald’s without raising suspicions in her six-year-old brain.“She just thinks its Chloe Day. She doesn’t know,” Lovett said, before the trip to Orlando was revealed.Though both Lovett and Rice are from Ashley County, Chloe was the first child from here that they have given a party for. They have been involved with Make-a-Wish for a year and have thrown five parties in all, including Chloe’s.Through recommendations from their doctors, young people who have life-threatening illnesses are selected by Make-a-Wish to have their greatest wishes come true. Lovett said that each wish normally amounts to between $5,000 and $10,000, and that does not include the hoarde of presents donated by local businesses nor the volunteer hours put in by coordinators.Naturally, some wishes simply cannot be made reality, but Lovett said that the foundation goes to great lengths to try.“We go out and interview the child and find out what they want,” Lovett said. The requests are then reviewed by the regional Make-a-Wish office and certain ones are granted. If a child’s greatest wish cannot be fulfilled, an alternative is granted.Chloe had asked for a trip to Walt Disney World—the most popular wish granted, according to the organization. This weekend, she will be going, along with her immediate family members. The Make-a-Wish Foundation will foot the bill for all of them.The trip seemed only icing on the cake for the young girl, and not the cake itself. She was picked up by the limo from her home and was taken to a local salon for a beauty treatment, including hair, make-up and nails.“She is too beautiful,” Mrs. Shaver said, upon seeing her. But she expressed a slight concern.“You didn’t pick up any frogs in your pretty dress, did you?”Chole’s father Shannon Shaver offered an explanation for the inquiry.“When we were building our house, she’d go around collecting frogs,” he said. “She’d have them in her pockets and in her hair.”A quick check revealed no frogs. But there was a prince. Chloe arrived escorted by by the sharply-dressed Clayton Douglas, the young son of Mark and Dana Douglas of Crossett, who is a close friend.(He is not a boyfriend, according to Dana Douglas...although he quietly admitted to his mother that Chloe was “pretty” when he saw her in a lavender gown, feather boa and sunglasses.)Surrounded by friends and family, the girl had lunch at McDonald’s, and there received an unexpected visit from one of her favorite cartoon characters, SpongeBob SquarePants. The costumed actor led the group of children in a game, imitating TV show themes and having them guess what they were.Things just got more exciting from there for the Shaver girl, as presents were produced.“You want to give Chloe her gifts now?” Rice asked.“Yaaaaaay!” is all that the girl said in response.Toys, clothes and other gifts were revealed and stacked in front of young Chloe, with each of them garnering a strong reaction.“Momma, you won’t believe it!” Chloe exclaimed. Deborah Shaver simply nodded and smiled.The girl opened many gifts, including some stuff related to “Heh-wee Pottuh” (six-year-old talk for “Harry Potter”) and Barbie, and an item that has become an American cultural symbol, tiny shorts with the word “SPOILED” stamped across the back.Despite the party, presents and fanfare, Chloe still never guessed that the grand prize was forthcoming. Even a T-shirt with her name on the front and “Make-a-Wish” on the back yielded no clues.Lovett, however, nearly gave away the big secret after Chloe opened a camera.“You can take pictures of Minnie Mouse!” Lovett exclaimed.Rice punched her in the arm to call attention to the faux pas.“...Uh, maybe,” Lovett stammered.She laughed as she realized her mistake.”Well, there’s always got to be one in the crowd,” she said.Finally, the biggest gift of them all was handed over...but not without a little build-up.Rice approached Chloe. “Today is your day,” she said. “Now what is it that you want more than anything else?”The little girl gave a blank stare.Her older sister stepped in. “Remember when those people came and asked you all those questions? Remember what you asked for?” she said.“To go to Disney World, or if I can’t go there, to the beach,” Chloe answered.“So where does that mean you want to go?” Rice asked.A short pause ensued before the girl answered. “The beach?” •••Cystic fibrosis is a genetic lung disease that affects about 30,000 children nationwide. The reason why only children are named in the statistics is because the majority do not live to see adulthood.Deborah Shaver said that most CF victims do not live past the age of 20. She should know: she has become a rather unwilling expert on CF since not only Chloe, but also her oldest daughter Laura, both suffer from the disease.“Cystic fibrosis is a progressive terminal disease. She’ll get worse and worse,” Mrs. Shaver said of Chloe.When Laura, now grade-school-aged, was diagnosed, Deborah Shaver was not so well informed about CF.“I didn’t know anything about it and had never even heard of it,” Shaver said.When Laura’s illness still had not been diagnosed, doctors told the Shavers that it was one of three different possibilities. Mrs. Shaver falsely assumed that CF was the least serious of the three.“When the doctor positively identified it as cystic fibrosis, I said ‘Oh good, it isn’t the bad one,’” Shaver said.She was forced to learn quickly just how serious the problem was, and still is.The illness skipped over their next child (who is, appropriately, named “Hope”). But the second blow came a few years later when Chloe was born. She tested positively for the disease at only 13 weeks old.“On Friday the 13th,” Shannon Shaver said.“Even when I was pregnant with her, I knew she was going to be positive,” Deborah Shaver said. “It’s just a momma thing.”Just by looking at Chloe, you would never be able to tell that her body is trying to fight off a tremendously powerful disease. On Sunday she looked like any other normal six-year-old girl playing dress-up at a party. But she has to be monitored closely. She can’t get too active because she can’t overheat. That could overwork her delicate lungs and trigger the fits of coughing and shortness of breath. That in turn could lead to a myriad of other physical problems, including life-threatening infections.“We can have a great day and then she’ll cough, and [Shannon and I] will both look at each other,” Deborah Shaver said.To help cope with these issues, Chloe takes an oral medication in the form of a large capsule that her mother easily produces from a pants pocket. But this amounts to treating the symptoms rather than the disease itself.The girl will start public school in the fall and that will provide additional complications. Older sister Laura misses about 70 days a year, according to her mother, for hospital visits. Chloe can expect to miss about the same.Hospital visits are a constant. In fact, Chloe is set to go into Arkansas Children’s Hospital in Little Rock for therapy for a couple of weeks as soon as the family returns from the Walt Disney World trip. One form of treatment is to affix her with a vest that rattles loose the heavy mucus lung blockages.Obviously, constant hosptial visits, close monitoring of the children and medical treatment is very expensive. But the Shavers said that they have accepted their station in life.“We can’t sit around and have a big pity party,” Mrs. Shaver said. “She doesn’t. Look at her, she looks great.“Every day is a new memory.”•••Rice and Lovett got involved with Make-a-Wish when Rice became aware of the foundation through her workplace. South Arkansas was in need of coordinators; the closest ones to this area were stationed in Little Rock.The two are responsible for the initial interviews, for drumming up the local donations and for making all of the party arrangements, which can amount to quite a bit of work in the short time between when Make-a-Wish announces a selection and when the party occurs. The volunteer efforts are rewarding, they said, when they see the smiles as wishes are granted. While Rice and Lovett do not make contact with the families of the children after the wishes have been granted, they do not discourage the families from contacting them.“If I get too emotionally involved, it’s too hard,” Lovett said. “Knock on wood, all of the children who we have interviewed for Make-a-Wish Foundation are doing OK.” The coordinators considered Sunday’s venture a big success because Chloe Shaver was so surprised about her party, presents and trip to Walt Disney World. Normally comfortable as the center of attention, she was somewhat shy and reserved at first but warmed up to her surrondings later.“She had no idea that she was going to have a party, so I think she was a little taken by all of this,” Deborah Shaver said.During all of the fun and laughter, though, the Shavers got a reality check. Mrs. Shaver overheard daughter Laura in the bathroom, coughing and hacking in a reminder of the illness from which she suffers. She rushed in to check on her. The quick attack turned out to be routine.“That’s what we deal with,” she said, returning. “It’s just what you have to do.”
6-28-03 Saturday
We started out on our trip this morning, going to Little Rock to spend the night before flying to Orlando tommorrow morning. When we arrived at our hotel we were just sitting around kinda bored, thinking about what we were going to eat. Then we decided to go to the IMAX Theater to see "Helicopters in Action". Man was this place cool...they had vintage airplanes in the lobby and all sorts of other neat things to look at. We finally went into the theater and there it was..the mother of all TV's. Sixty foot tall and seventy feet wide and a 10,000 watt surround sound system. The whole time while I was waiting on the movie to start, all I could think about was what would it be like to hook the 'ol PS2 up to this baby. Anyway the movie started. It was amazing, it showed all types of helicopters at work, logging, rescue, and military. Probably the neatest one was the ones that they use to work on high voltage electrical lines. And then, there it was, the answer to the most important question of the day...Where in a town the sizew of Little Rock would we find anything to eat? On the huge screen in front of us the advertisement for the GOLDEN CORRAL. But now that the secret dining location was revealed to everyone, would we be able to get a table! Se here we go weaving and swerving in and out of the Little Rock traffic like Mario Andretti in his race car. Now let me tell you that this is a task when you are driving a tank ar ass Deborah calls it her truck, (A Chevy TrailBlazer XT), but as anyone that knows Deborah , you cannot argue with her. Well we finally arrived....a huge feast awatied us (along with about 300 other people). So there we set, eating till our hearts were content. We then headed bak to the hotel to prepare for our long journey in the morning....
more to come!
