The Importance of Finding Support After a Type 1 Diabetes Diagnosis
Trace Breneman was having a great summer. The two-year-old was practically living outdoors and had recently learned how to successfully use the big-boy potty. Life was good.
His mom, Jillian Breneman, remembers a perfectly healthy boy, but signs were starting to appear that something might be wrong. Trace’s dad, Steven Breneman, is a nurse. He was starting to get concerned about Trace’s seemingly endless thirst and frequent urination. Jillian Breneman chalked it up as a ploy to get more potty-training rewards.
One night, Trace woke up vomiting. When the Brenemans got him in to their pediatrician in the morning, his breathing was labored and he “looked like death,” remembers Jillian Breneman. He was in diabetic ketoacidosis, a potentially life-threatening condition.
An ambulance ride followed by a week-long hospital stay ushered the family into life with a Type 1 diabetes diagnosis. The chronic condition occurs when the body’s pancreas produces little or no insulin. Symptoms and onset can come on very quickly. Over time, the condition can lead to complications that affect major organs, including the heart, eyes and kidneys. However, controlling blood sugar levels greatly reduces the risk of complications.
The family had an entirely new reality to face, which included poking Trace’s fingers to check his blood sugar at regular intervals. They also had to monitor and worry about every bite he took as its effects on his small body could potentially be disastrous. After having 24-hour support at the hospital for a week, Jillian Breneman remembers feeling terrified.
One thing that tremendously helped the family overcome their new challenges was a local support group for families facing a Type 1 diagnosis. Living in Tecumseh at the time, Jillian Breneman had received information about the group Lenawee Type 1 Moms of Michigan while Trace was in the hospital and reached out right away.
“Without that support group, I don’t know how I would have gotten through the diagnosis,” she remembers. “It was very reassuring to know that we weren’t in this fight alone and that there were other people going through the same thing we were going through.”
Indeed, according to the Mayo Clinic, there are many benefits of support groups for those dealing with chronic health conditions, including feeling less isolated and gaining a sense of empowerment and control over the condition.
“Support groups have always helped my patients and their families,” said Grace Derocha, a registered dietitian, certified diabetes educator and health coach at Blue Cross Blue Shield of Michigan. “They bounce ideas off of each other from how to count carbohydrates to the best way to test blood sugars to the best snacks to fight a low blood sugar. The camaraderie develops into extended family. They laugh, they cry and they conquer, while making lifestyle changes to keep their children healthy.”
Through the family’s support group, Trace was able to see that other kids get their fingers poked too. For Jillian and Steven Breneman, meeting other parents going through the same experience was liberating. Someone else understood the new language they’d been forced to learn and were open and willing to answer any and all questions they had.
An online Facebook group meant questions could be posted during those 2 a.m. blood sugar checks and many times getting a fast response. Fears could be expressed without worry of appearing foolish. The other parents got it because they’d had those same concerns at first.
Fast forward to today, three years after the initial diagnosis, and the family is thriving in the Grand Rapids area. They moved to the west side of the state when an employment opportunity opened up for Jillian Breneman at the Michigan Great Lakes chapter of the Juvenile Diabetes Research Foundation as a development manager. The family had received a “Bag of Hope” from the organization at the hospital when Trace was first diagnosed. She then got involved with JDRF’s walks and felt pulled to join the organization when the job opening presented itself.
Now five, Trace just recently started kindergarten, which was a tough transition emotionally. While everyone worries about how their child will adjust to a new routine, the family had additional concerns about how school personnel would help him manage his diabetes.
“There are so many factors that control the blood glucose, not just food,” Jillian Breneman said. “With Trace, anxiety and adrenaline make his sugars plummet. Having to quickly train school personnel on how to take care of Trace was frightening. We are very fortunate that the school district he is in has been very interested in learning how to manage his Type 1 diabetes, but not everyone has that experience.”
The Brenemans are now comfortable with their new normal. They allow Trace to eat what he wants, when he wants by making insulin adjustments, so that he and little sister, Ellie, 3, are on equal footing. They’re doing their best to empower Trace to not be afraid of his disease, but to fully live with it. It’s a message that’s sinking in.
“He tells people all the time that he likes his diabetes,” Jillian Breneman said.
That sense of empowerment around the disease stemmed in large part from the support the family received from other families who had been through it. Jillian Breneman is still a member of the initial support group she’d joined and is also now a member of JDRF’s Parent Connections of Grand Rapids. She’s now in the position to mentor others who join the group facing the same fears her family had.
“I absolutely love helping families who are either newly diagnosed or have been fighting the battle for some time,” she said. “It’s nice to connect with people who just get it.”
Want support after a Type 1 diagnosis? Contact your local JDRF chapter for resources near you.
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