The Mississippi’s Walk for Diabetes-Oxford is this Sunday at 2 p.m. with registration at 1 p.m. The walk takes place at the Lyceum around the University Circle. Read the story below to see how the Diabetes Foundation of Mississippi helped a young child like Kristen Shinault.
While Gail Sheehy famously chronicled the crises that can add up to a lifetime in her groundbreaking book Passages (1976), any parent of a child just diagnosed with diabetes knows that a lifetime’s worth of passages can be condensed into a single year.
Take the Shinaults of Batesville. Their daughter Kristen had just turned three. She loved the color orange. She loved surprises, making up songs, dancing and playing—with her sisters, the family’s chickens, and her puppy. She loved to help her mother cook.
“Her favorite food was bacon,” said her mother, Lauren, who moved to Batesville from Jonesboro, Arkansas, in March 2014, with her husband, Wayne, and three other daughters.
But around the time of Kristen’s birthday in September, Shinault began to notice changes. “She was very cranky and cried about everything,” she said. “She wanted to watch cartoons all the time. She never wanted to play outside or with her toys. She was extremely thirsty and had to use the bathroom all the time. It was so excessive that we were losing sleep at night.”
Passage: Illness.
Before long, Kristen had become a rag doll of a child. “She was so weak that when I picked her up she felt limp,” Shinault said. “She didn’t even have the strength to hug me.”
Soon, she couldn’t even walk, and her mother knew something was very wrong.
“I took Kristen to see her pediatrician and after checking her urine the doctor said he needed to check her blood sugar,” Shinault said.
It was a jaw-dropping 358 mg/dL (about 70 to 120 is considered normal).
Passage: Diagnosis.
“Kristen was diagnosed with type 1 diabetes and I knew absolutely nothing about the disease,” Shinault said.
So they drove together to Le Bonheur Children’s Hospital in Memphis, where she was admitted with ketoacidosis, a life-threatening breakdown of fatty acids in the body brought on by untreated high blood sugar, which can lead to coma and worse.
Passage: Now what?
Over two days at the hospital, Kristen and her family learn how to give her insulin injections to lower her blood sugar, to test her blood sugar with finger sticks, to count carbohydrates, and to otherwise cope with the realities of type 1 diabetes.
“Needless to say, we are still learning,” said Shinault, who will be walking on Sunday, November 8, with her family in Mississippi’s Walk for Diabetes in Oxford.
Passage: A new normal.
“Kristen’s having diabetes has been life-changing, but our family has pulled together and has learned how to care for her,” Shinault said. “We are closer, stronger, braver and more compassionate than ever before, and Kristen still has the hope that she will not have diabetes one day!”
Then, just as the family was settling into a daily diabetes regimen, Kristen’s blood sugar bottomed out late one December night while she was asleep. She awoke with a seizure.
Passage: Crisis.
Shinault gave Kristen an emergency glucose injection, called 911 and again took her to Le Bonheur, where she was admitted for observation.
“After that episode I was terribly stressed and was not sleeping well at all,” Shinault said.
It was during that period that the Diabetes Foundation of Mississippi stepped forward and said they would like to help Kristen get the continuous glucose monitor called Dexcom—which sends, from a tiny sensor under the skin, continuous blood sugar information to a receiver smaller than a cellphone.
“She got it in January 2015, and it has taken my anxiety level down so much because now I can watch Kristen’s blood sugar trends, and if she is going out of her targeted range the Dexcom alarms me and I can take care of it before it becomes a big problem,” Shinault said.
Operating the Dexcom is not cheap. “Kristen has Mississippi Medicaid and they did not cover her sensors,” Shinault said. “Our family and friends pitched in and donated money to help cover Kristen’s sensors.”
Meanwhile, the Diabetes Foundation of Mississippi kept pushing for Mississippi Medicaid to approve coverage for the continuous glucose monitor. In July 2015 that perseverance paid off. “Mississippi Medicaid started covering the CGM and we are so very grateful!” Shinault said.
Passage: The Diabetes Foundation of Mississippi.
“For most families, the first interaction with type 1 diabetes comes at diagnosis,” said Mary Fortune, who is executive vice president of the Diabetes Foundation of Mississippi and has lived with type 1 diabetes for more than 45 years. “The foundation is here to help families transition from diagnosis to living out their new normal.”
“We offer programs that assist with this process—for example, our biannual camp, Camp Kandu, provide parents and children with basic education, support that is found in peers walking through similar circumstances, and exposure to the newest technological advancements.”
“The Diabetes Foundation of Mississippi has been like a great big hug when you really need it the most,” Shinault said. “They reached out to us when Kristen was first diagnosed and sent her a ‘We Care’ backpack full of books, resources, and all sorts of goodies.”
The foundation also connected Shinault with several other families who had small children with diabetes. “They called me often and checked in on us,” Shinault said. “Their Facebook group was an awesome support, especially at 2 a.m. when you have a blood sugar question because there would always be a few other moms up checking blood sugars too.”
At a DFM “superconference” in Jackson, Shinault said, “Kristen was able to meet several children who have diabetes and made one special friend who held her hand and helped her checked her blood sugar, showed her her pump, and often sends videos of encouragement to Kristen when she having a rough day.”
Said Fortune: “For over 40 years, we have been a force for fixing Mississippians’ lives broken by this disease. Pope Francis recently moved the nation as he spoke of the small miracles that take place within families every day. We have been such a family for every man, woman, and child living with diabetes in Mississippi.”
Sometimes miracles beget miracles. “Through our foundation children learn not only to educate themselves on diabetes but also to teach others like themselves about living with the disease,” Fortune said. “They go into hospitals to mentor newly diagnosed kids as they learn to stick their fingers for glucose tests, give themselves insulin, or count carbohydrates. Our young heroes give each other hope.”
As families face what can be a terrifying diagnosis, the DFM teaches them to take it day by day. “When they confront life-threatening crises, we are here to teach them how to respond,” Fortune said. “When they are seeking the right kind of medical care, we are here to teach them about where they can go for lifesaving procedures like kidney-pancreas transplants and surgery to prevent blindness.
“And when they need help learning how to operate insulin pumps and continuous glucose monitors, we are here for that too.”
Passage: “The Pump.”
In July 2015, it was Kristen’s turn to get on the insulin pump, and the complex process of programming it required an adjustment. “It was overwhelming in the beginning because you have to learn something new, but we are so thankful now for the pump,” Shinault said. “It has made managing Kristen’s diabetes a bit easier.”
“We still have to do finger pricks, we still have to carb count everything she eats, we still have to deal with lows and highs, we still have to check blood sugar in the middle of the night, we still have to hold her hand when she gets new pump sites injected, and yes, after a year she still cries even after enduring all the sticks and pricks.
But what a difference a year can make.
Nearly 3,000 finger sticks and insulin shots later the Shinaults say this has been not only one of their more trying years yet, but also most triumphant.
Passage: The choice is yours.
“Kristen’s diagnosis has changed all of us,” Shinault said. “We know that life is a precious gift and you never know what it may throw your way, but you can choose to let the circumstance make you bitter or make you better! We have chosen for it to make us better! We are stronger than we ever knew we could be!”
“This walk is important because it represents hope,” Lauren Shinault said. “Whether you are walking in memory of someone or alongside someone it gives you a breath of fresh air to know you are not alone and you have the DFM and all these wonderful people supporting you along this journey!”
Article by John Webb, freelance writer for Diabetes Foundation Mississippi.
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