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Facing the challenges of living with Type 1 Diabetes: JJ’s story

May 15, 2015

At 7 years old, JJ is a fun-loving, adventurous little boy. He is also living with type 1 diabetes, but he isn’t letting that hold him back from anything.

Whether you see him swimming laps at a swim meet, playing soccer with his friends or riding his bicycle with his two younger brothers, you can feel his enthusiasm for the simple pleasures of childhood. He loves to learn, and he loves spending time with his friends. He loves to play outside, to make up stories and experiment making origami crafts. He’s naturally gifted at teaching and leading others, perhaps because he’s so comfortable in the role of big brother. But not a day goes by, likely not even an hour goes by, that he can forget that he has a serious, life-threatening illness.

A new normal

When JJ was 2 years old, his parents began to notice some changes that concerned them. JJ began wetting through his diapers, which was abnormal for him. He also began eating and drinking a lot more than he normally did. While other parents may have overlooked these signs, Jim and Kristen noticed them immediately. They recognized them as potential symptoms of type 1 diabetes because, Jim too, has the disease.

Concerned, they decided to test JJ’s blood sugar at their home. The results came back too high for the machine to calculate, and Jim and Kristen knew this was a very dangerous situation for their little boy. They called their pediatrician and headed to the hospital where JJ spent the next three days in the Intensive Care Unit.

He was discharged from the hospital a few days before Halloween, and as Kristen describes it, this was the beginning of their “new normal.” They took JJ to a Halloween party, and Kristen remembers the moment that she realized everything had changed:

“There were cookies and candy and punch all around us. It was the first time I had to worry because my 2-year-old wanted to eat a cookie. I remember welling up because I   realized that every time he eats from now on, I have to give him a shot. He’ll have to experience some sort of pain every single time he eats.”

Thankfully despite his tender age, JJ adjusted pretty well as he learned to endure needle sticks multiple times a day. His parents, too, learned to adjust to their new normal as they educated themselves about how to care for their son.

Facing the challenge

As JJ has grown, the challenge for his parents has become learning to strike the delicate balance between providing for his health and safety while also giving him the freedom to be just a normal kid. As Kristen explains:

“It is harder the older they get, because they aren’t always with you. His blood sugar can go from normal to low in a matter of minutes. If we are with him we can handle it, but it makes us fearful when we aren’t with him. At the same time, JJ is very independent. He has a spirit that wants to get out and explore, and we don’t want to hold him back from that. We have to let him be a kid, and sometimes that’s the hardest part.”

Jim and Kristen are thankful that they have access to new technology that helps them find that balance. JJ wears a Dexcom monitor that when connected to his iPod allows Kristen to monitor his blood sugar remotely from her iPhone. Her phone will sound an alarm if JJ’s blood sugar goes too low, even if he is away at school or playing at a friend’s house. Devices like this allow JJ’s parents to help him assert his independence while also keeping him safe.

Another challenge that they face as a family is the public’s misconception about the disease. When people see JJ wearing an insulin pump or his Dexcom monitor, they often ask questions. If the person is a stranger, JJ sometimes feels uncomfortable, but his parents are usually open to the dialogue. They’ve noticed over time that many people don’t understand type 1 diabetes. Kristen says:

“The biggest misconception is that type 1 is the same as type 2. There’s a sort of stigma associated with type 2. There shouldn’t be that stigma, but there is and then people sort of lump type 1 and type 2 together.”

People have said to Kristen that she likely ate too much sugar when she was nursing JJ as a baby. Others have asked whether he might outgrow the disease. Many people don’t understand that type 1 diabetes is an autoimmune disorder, meaning that the body mistakenly attacks itself. In type 1 diabetes, it is the pancreas that is destroyed leaving a person unable to make the hormone insulin, which helps their body process and use the food that they eat. No one knows exactly how or why type 1 diabetes happens. There is likely a genetic tie as it sometimes appears to cluster in families, but there is still a lot that is unknown. What we do know, however, is that there is nothing a person can do to prevent or outgrow type 1 diabetes. While Jim and Kristen see the value of educating people as they ask questions about JJ’s illness, sometimes it is harder for JJ to talk about his personal struggle with strangers.

Looking toward the future

As a family they also have a lot of conversations about diabetes as JJ works through the complexities of childhood while learning to manage his disease. He has his blood sugar tested ten to fifteen times a day (even throughout the night) and receives five to six insulin shots every day. JJ has learned to give himself his injections and one day will learn the intricacies of calculating how many carbohydrates in his meal and how much insulin to dose. There is no holiday for diabetes, no way to take a time-out from this illness; it requires constant attention and vigilance.

As they talk through the practical concerns of daily living with this disease, his parents teach him something else very important: this is a hurdle he has to overcome, but this will not hold him back from anything. Kristen tells him:

“You’re going to have challenges, but every family and every kid has challenges. It doesn’t mean you can’t do everything you want to do.”

His parents remind him that although his challenge might be a little different than other kids, we’re all a little different in our own way. Dealing with this disease has been difficult, but it’s also shaped him into a strong, resilient boy with a huge capacity to love and care for others.

Diabetes has presented JJ with overwhelming obstacles. He’s been forced to fight grown-up battles in a little boy’s body. As he approaches other areas of life with the same bravery and tenacity with which he’s confronted his disease, though, it’s pretty easy to tell that he is destined for something wonderful.

For this little boy, the future is bright and the best is certainly yet to come. It may not be easy, but it will be good.

Learn more about our Endocrinology and Diabetes Center at Arnold Palmer Hospital, here.