Gabriele is a 17-year-old aspiring writer from Jacksonville, FL. She loves the wit of Charles Dickens, the smell of sharpened pencils, and the charm of coffee shops. She lives her life by a Benjamin Franklin quote: “If you would not be forgotten as soon as you are dead, either write the things worth reading or do the things worth writing.”
We wanted to go to the lake. We were in Georgia—hot, humid, hollow. The summer dragged on and we craved the cooling care of water. We prayed for breezes that would sift through our hair. We desired the laughter of small children when they discovered how splashing annoys adults and we paraded our decision to visit the overvalued body of water that very day when we had absolutely nothing to do. Our plan was unfaltering. We wanted to go to the lake.
“After the doctor.” My best friend, Brandi, was supposed to go to the doctor that day. “After the doctor we can go to the lake.”
We grudgingly accepted only because we were ten years old and the law required us to do so. It was a doctor’s visit we would never forget.
Brandi had a blood sugar level of 500, which would have sent her into a coma had we gone to the lake that day. We did not believe the doctor, but it was true all the same: Brandi had type 1 diabetes.
It was a struggle the next few weeks with Brandi in the hospital learning how to cope with her newly diagnosed diabetes. Nobody really knew how to react. We didn’t want to believe that her life would never be the same.
Brandi is eighteen years old now and her and her parents have learned how to make a new “normal” of living their everyday lives with diabetes. Through their journey, they have learned about themselves, diabetes, and their relationships. I had the opportunity to sit down with Brandi and her mother, Denise, to ask them a few questions. I hope their answers are helpful to teenagers and parents who are trying to cope with diabetes.
Describe the main symptoms of diabetes.
Symptoms can vary from person to person, but the ones I’ve heard of most are having to use the bathroom a lot, eating a ton of food and still losing weight, and drinking a lot. I had all three of those.
What advice would you give to parents who have teenagers diagnosed with diabetes?
I would say don’t freak out. Don’t try to take too much control over your kid’s diabetes, because in a few years when they move out, you won’t be there to help them. The teenage years is when the kid really needs to have as much control as possible so they’ll know how to manage in college.
What can parents do to make the transition to being diagnosed with diabetes easier?
I don’t know that there’s a lot that you can do. It’s a HUGE change, and sometimes it’s really hard. I think the only thing you can do is learn all you can so you can answer their questions and just be supportive. Remember that they can do ANYTHING they want, with or without diabetes. For example, Chris Freeman is a type 1 diabetic on the American Olympic ski team, and Will Cross is a type 1 diabetic who climbed Mount Everest. They’ve proven that diabetics does not limit them in what they can do.
What are your biggest pet peeves when it comes to other people and your diabetes?
Definitely when people tell me what I can and can’t do or eat. I’m always hearing “oh are you SURE you can eat that?” I’d like to just say “um. Believe it or not, I do eat food. By myself. Without your help. Stop policing my food, please.” But I think I’d get in trouble…so I’ll settle for the simple reply of “yes, I can eat this.”
Describe the bullying you went through. How can parents help their teens who are being bullied for their diagnosis?
I was bullied for diabetes since my first year of public school in 7th grade. The kids would tell me things like my insulin pump site looked nasty, or when I’d check my blood sugar they’d tell me it’s disgusting and to go somewhere else. I still get some of these comments. For instance, just recently I had to take an insulin shot in chorus and half the class totally freaked out. Even the teacher told me to not do that in class again. It’s really hard, and most kids don’t feel comfortable talking about it with their parents. Again, all you can do is be supportive and let them know that they really aren’t that different. What helped me more than anything was finding diabetics who are older than me so I had someone to look up to. My friend Bethany is a few years older than me and has probably been diabetic as long as I’ve been alive. When I was a little younger, I could look up to her and think “Hey, this isn’t so bad. Look, Bethany can do it. And Bethany looks like everyone else, which means I must not stick out as much as I think I do. If she can do it, so can I.”
Why and how did you train your diabetes alert dog?
I learned about diabetes alert dogs my first year of Camp Kudzu, a program in Georgia for children with type 1 diabetes. I think I was about twelve years old. Years later, I trained my dog, Clank, because I stopped feeling the symptoms of blood sugar highs and lows. I had learned how to train a service dog from a friend of mine that’s a professional diabetes alert dog trainer who had also given me my first dog. It was too expensive to make a trip to where she is to get another dog, so I had to train my own. I had already had Clank since he was a tiny puppy. When I needed him to go to work, he was four years old. I took a rag and rubbed it on me when my blood sugar went low. Then when it went back up to normal, I hid the rag in one hand and showed both hands to Clank. When he found the rag hidden in one hand, I gave him a treat. We did a few more “games” like this until he could alert me when my blood sugar really was changing. Please note that diabetes alert dogs are only for those of us that can’t feel blood sugar highs and lows, or for small children whose parents may not be able to tell when their kid is having a blood sugar problem. Not everyone has the ability and patience to train one of these dogs and not every dog is suitable for the job. If you’re a candidate for a diabetes alert dog, I would recommend working with a professional trainer before attempting to train your own dog.
What would you say to teenagers who are struggling with diabetes?
Hang in there and don’t be afraid to ask for help. There are tons of diabetes networking websites where you can find other diabetics who can answer your questions. Also, don’t be afraid to try something new because you’re afraid of how it’ll affect your blood sugar. I’ve played volleyball with diabetes. I ride horses with my pump. I run half a mile most days in the summer with diabetes. It’ll take time to figure out how everything will affect your blood sugar, but that’s okay. Take your time. It’ll be worth it in the end. Just do what you love to do and don’t let diabetes get in your way. The last thing I’d say to them is sometimes it is helpful to pick one or two friends to help you out. My friend Alyssa has learned how to check my blood sugar, use my pump, give me shots, and just in case I ever go super low and go unconscious, she knows how to use my glucagon kit. When my blood sugar shoots over 300, sometimes I’ll feel it. If Alyssa is there, I can have her check and treat my blood sugar for me. It gives me a small break and that makes life SO much easier. Plus I know that if anything ever happens while she’s around, she’ll be able to take care of it.
Describe what was going through your head when you found out your daughter was diagnosed with diabetes.
Denial first. They just had to be wrong. We even took her to another hospital after she was released and having problems. It was just overwhelming not knowing anything about diabetes. Not knowing how this was going to affect her for the rest of her life. And just the fear of doing something wrong that would cause great harm to her. Absolute panic.
How did you learn about the disease?
It just takes time. You can’t sit down and absorb everything overnight. You can’t read a book and have a good understanding of it. It literally has to be something that you walk out day by day and learn as you go. All diabetics are different and respond to treatment differently. Diabetes is just one of those things everybody thinks they are an authority on. They also treat all diabetes types the same and they’re just not the same at all. We’ve often wished they would have named them two completely different things.
What would you have changed if you could go back and do this process again?
I guess I wish we wouldn’t have felt the need to explain to everybody so they wouldn’t treat her improperly. The goal was to educate people so they don’t “police” her food, so they don’t respond to her out of misunderstanding in a negative way. It makes it hard for her because she doesn’t want to be singled out with a neon sign over her head saying “I’m a diabetic.” It’s a fine line because you don’t want people hurting your child either.
What supplies do you need?
You have to have insulin and a way to administer the insulin. You need needles no matter what. You may choose the option of a pump, pen, or shots. You need glucose tablets to bring the blood sugar up. You need a way to test for ketones whether that’s through urine strips or blood strips. You need a meter to test the blood sugar and test trips for the meter. Alcohol pads are nice to sterilize the skin for the pump site. You have to have to have a glucagon kit. You need a lancet device. You need a medication to keep you from vomiting when you’re sick (anti nausea medication). You can find it all in the pharmacy and an online medical supply service that mails you your supplies.
What advice would you give to parents?
The biggest advice is to try to stay on top of it in the background. Don’t overwhelm them with all the little details. Some teenagers go through it when they just don’t want to be diabetic anymore. They’ll quit giving themselves insulin because they don’t want to deal with it. In that instance, you do need to stay on top of it because that can cause them serious harm. But if they are handling it well the best thing to do is be encouraging and stay in the background because they’re thinking about it more than you could ever imagine.
What is the biggest mistake parents often make?
Baby them and try to do everything for them all the time because they feel sorry for them. Eventually they’re going to have to be on their own and do it themselves. Nagging is another. Nagging only overwhelms them and makes the situation worse. Pick a day of the week to sit down and go over what the numbers are for the week and fax in or if your doctor allows make the corrections. Due to hormones in the body you don’t just set it and forget it. It always has to be tweaked to keep up with what the body is doing. Complications may arise. Brandi became hypoglycemic unaware. She can no longer feel the highs and lows, which makes it more dangerous. We needed a solution to keep her safe. Instead of a CGMS (Continues Glucose Monitoring System) which would be another thing sticking in her she chose a service dog. Make as many of the decisions that you can their choice. They have to live with it. For your sanity, have someone to talk to and vent to. They don’t have to have a degree just a sympathetic ear.
What would you say to parents who have diabetic teenagers moving away from home?
Trust that you have prepared them for the journey and just let them know that you’re always going to be there as a support that they can fall back on but allow them to go ahead and stand on their own feet. Make a plan for how they’re going to get their supplies and everything they’re going to need while they are in college so there’s no danger in them running out. Make sure the staff is informed of their condition also. It’s good for them to have a friend or roommate that can help out in an emergency.
How do you deal with other siblings involved?
Talk to the other children about it. Let them know that the child with diabetes does not always get a positive type of attention and that they hate having the disease. If they’re willing to get involved and learn, let them do it. Let them be a part of the process, even if it’s just by being able to detect when there may be a blood sugar low.
Anything else you’d like to add?
It’s always going to be a struggle. They’re going to be upset with you because they feel that sometimes you embarrass them or you’re invading their space too much and that’s just part of the process. Try to be as loving and understanding as possible but also informed. Should a serious event arise, like if she’s been running in the 3,00s all day, you don’t want something like that to continue.
Photo Credit: Jill A. Brown from Flickr