Making each precious day count
By Phyllis Moore
Published in News on November 1, 2017 5:50 AM
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Carol Simmons of Mount Olive holds a funeral program of her 25-year-old daughter, Carolynn Marie "Rie-Rie" Jackson, who died in June. Simmons said her daughter wanted her to talk about sickle cell disease and encourage others.
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News-Argus/PHYLLIS MOORE
Carol Simmons of Mount Olive, left, in one of the last photos taken with her youngest child, Carolynn Marie "Rie-Rie" Jackson, who died this past June at age 25. Jackson was diagnosed at birth with sickle cell disease.
Carol Simmons knew when daughter Carolynn Marie "Rie-Rie" Jackson was born that every day would be precious.
She recalled the birth of her eighth child, being in the hospital and receiving the news.
"They came out with the bloodwork and told me she had sickle cell disease," Simmons said of the moment that ushered in years of hospitalizations and treatments for the red blood cell disorder.
Since there is currently no cure for the disease and patients don't go into remission, Simmons paid close attention to preventive measures in caring for her young daughter.
"I was always making sure there was no fever and staying on top of the bloodwork," she said. "As long as you could keep the colds and flu down, she didn't have the sickness.
"I think it started, maybe around 5 years old, her stomach bothered her and the blood count was low. Her gall bladder and spleen had to be removed. It helped some of the sickness but for some reason she was always nauseous."
For a time she did well, said Simmons, who lives in Mount Olive.
She loved reading the Bible and had a great faith, Simmons said. She also loved basketball, playing in middle school, and was a big fan of Dwyane Wade, who now plays for the Cleveland Cavaliers.
"His attitude was so sweet. She always said Dwyane Wade was her husband," Simmons said with a laugh. "So she has plenty of Dwyane Wade jerseys around."
Rie-Rie was also a good student, at both Carver Elementary and Mount Olive Middle schools.
"She was smart and when she went back to school (after sicknesses) she was always able to catch up," she said. "Even when she got to high school she would come back and the teachers would use her as an example, because she had kept up with her studies."
By the time she got to Southern Wayne, heart problems and leg pain prevented her from continuing to play basketball.
Those years were fraught with hospitalizations, pain, bacterial infections and blood transfusions. The latter especially took their toll, Simmons said.
"We did not know over the years the iron had built up in her body," she said. "You're looking at what can help your child because you're desperate.
"We did the blood transfusions each week, each month, because at this point the blood transfusion was keeping the vessels open in her head and arms."
At one point, Rie-Rie acquired acute chest syndrome, which is a form of pneumonia.
That was a scary time, Simmons said.
"Sickle cell children have to be very careful. A lot of them death comes from acute chest," she said. "Pneumonia spreads and the medication they give you may not catch it."
While the prognosis was always grim and the life expectancy more uncertain than for most people, Jackson managed to reach several milestones, including high school graduation.
Simmons recalls the approaching occasion in 2010 when her daughter was preparing to receive her diploma.
"The principal told her if she wasn't able to walk across the stage, it would be his first time carrying a student across the stage," she said with a smile.
"And believe it or not, that day she was sick. But she walked across that stage."
Rie-Rie's dream was to be a nurse and help others, perhaps because of all who had done that for her.
The last time she went to the hospital, Simmons had no idea it would be her last time, she said.
"We thought it was like any other time," she said. "We left out of here not knowing because there have been so many trips. We just knew we were coming back this time."
But then came the unexpected news.
"Doctors called me out and said she was dying," she said. "From the transfusions over the years, her liver was corroded. The blood transfusions caused her liver to go out.
"She said she wasn't afraid of death. 'If it comes and when it comes, it will be alright.'"
Simmons was not as cavalier. She wasn't ready to lose her youngest.
They had done everything together -- from eating out to going to movies.
But on June 22, 2017, the 25-year-old passed away at UNC Chapel Hill hospital.
Simmons still finds notes around the house from her child -- telling her to be safe, to be blessed and to have a wonderful day.
"I hurt daily," she says. "Even now with me doing funerals at Haskins Funeral Home (where she works), always when I sit there I have flashbacks of her but at the same time I have a flash of her saying, 'You can do it. I'm alright.'
"But it hurts because you feel like there could have been more, more the doctors could have done."
The grief comes in waves and can be unbearable at times.
She was the caregiver, but she also depended on her daughter, maybe more than Rie-Rie depended on her.
"She was my strength," she said. "People thought I was tired because I was going back and forth twice a week, three times a week, sometimes. But she was my strength.
"She taught me so much."
And part of her legacy is to carry on an important message, about quality of life amid sickle cell disease.
"She was hoping that one day they would find a cure, hoping that no one would have to go through what she went through," Simmons said. "After 25 years, I say I am here to be a voice, that we and the community need to take sickle cell more seriously."
Also a minister, Simmons says part of her role now is to encourage and support others diagnosed with sickle cell and increasing awareness about the disease.