Courtney’s Story: Life With Diabetes in The Family

Growing Up With Diabetes

It started for me before I had kids. My youngest sister, Marah, was diagnosed with Diabetes when she was 5, which was in 1988. So that’s where Diabetes started with our family. Back then, it was a lot different than the way we do things now. The diet was much more restrictive. You had to eat at particular times and all that kind of stuff. My mom handled the majority of that. Because I was a young teenager, I learned how to help her manage it and knew how to give shots and all that kind of stuff.

My sister passed away when she was 19, which was in June of 2002. She had low blood sugar while she was driving. She went into a seizure and was involved in a head-on collision that killed her and the driver of the other car. She left behind a husband and a 9-month-old little girl.

Parenting Kids With Diabetes

In 2005, my daughter Lydia, who is now 16, was diagnosed. We had been taking her to the doctor for about two years because she constantly had to pee and she was always thirsty. And of course, being raised with a sister with Diabetes, that was always in the back of my mind. And they couldn’t diagnose her. And then in January 2005, she was in severe DKA (Diabetic Ketoacidosis). She had lost 20 pounds, which, for a child of that age, is a massive weight loss. We spent a week in the hospital and learned how to deal with Diabetes.

I can’t say that I was shocked or extremely upset or anything because my mom had been an incredible example of how to manage this disease. So, of course, things were different and much easier with Lydia’s diagnosis than how my mom had to do everything. We were good to go. We didn’t go through any of the horror or depression or anything. We just picked up our lives and kept going on.

Then, in 2006, my youngest [Trevor], who is now 11*, was diagnosed. And that shocked me because I am one of seven kids, and only one of us had Diabetes. So, I guess, I’m just fairly naïve. I had no idea that more than one person could have Diabetes in a family. I was very shocked. This diagnosis was much more difficult. Trevor was only five. The chasing him through the house for blood tests and to give him shots… it was very traumatic for him and for me.

And then in 2007, Priscilla, who is now 15, was diagnosed with Type 1 Diabetes. I kind of went into shock when she was diagnosed because just the responsibility… You know, you already have this responsibility of being a parent. But the fact that their very existence depended on the decisions that I made and my diligence … it was almost overwhelming. So, I kind of went numb for a couple of weeks. I really relied on my mom. And that’s when I really got active in the Diabetes online community. I needed more backup than just doing this on my own and having my mom’s support.

Priscilla also has Celiac Disease, which she was diagnosed with in January of this year, which brings its own set of challenges aside from the Diabetes. I have to say, that’s been harder for me to adjust to than the Diabetes! Just learning about it and the [rules] when it comes to food and everything, that has been a huge challenge for me and for her. Teenagers are fickle as it is, and then you add in Diabetes and then you add in Celiac, that just brings a crazy amount of stuff to it.

living with diabetes

Lydia (16), without ever coming to any of us and saying, “Hey, I’m having a hard time dealing with this,” decided she was going to pretend that she didn’t have Diabetes. In August of last year, she was on vacation with my sister. She just decided she wasn’t going to take blood; she wasn’t going to take insulin. When she came home … I thought she was a little off, but she had been gone and busy and I thought maybe she was just tired. She went to bed and something told me to go check on her and when I did, she was breathing extremely heavily and we could not get her to wake up. I just picked her up and we rushed her to the emergency room and she was in the severest form of DKA that they had ever seen. The doctors told us every hour or two for the first 24 hours that we needed to prepare ourselves that she was not going to make it. Thankfully, there are miracles. About 48 hours later, she opened her eyes up and all she wanted was something to drink. It was an unbelievable experience. It still makes me choke up with tears.

It was all because she was tired of being different. At school, kids saying things … and that made her feel different, and she decided she wasn’t going to be different anymore. I think she learned that lesson. That’s part of the teenage thing. That’s one of the biggest challenges [as a parent]. When you’re dealing with your child when they have a disease like that and them not wanting to be different. They don’t want you saying anything in front of anybody and they don’t want you telling anybody. And you try to explain to them that it’s dangerous not to and the people around them need to be aware, and at the same time [you’re] remembering being that age and remembering not wanting to be different.

I have another child, Christopher, my oldest. He is 18 and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) at age 7. All three of my kids [with Diabetes] are on insulin pumps, and all four of my kids wear medical IDs. And, you know, things aren’t perfect. I don’t know that you ever can say they are with this disease because it’s so full of ups and downs. But they’re all healthy.

A Word From The Wise: For Parents of Newly Diagnosed Kids

Just breathe. Take a minute. Step back and breathe. You’re going to be bombarded with a huge amount of information and education. You just have to remember that you can do this because this is your child. And what you’re learning and how you’re going to put these things into practice, it’s going to become a new normal for you. It’s not going to be crazy and bizarre forever. Just breathe. Know that the strength to do this is inside you. We, as parents, are way stronger than we think we are and if we just take that minute and step back and take a big deep breath, we’ll get through it.

My kids have been diagnosed between five and seven years now and there are still days that seem crazy, and there are still days when I have to tell myself, “Take a step back. Breathe through this. You can do this.” There are days that are just overwhelming. But the strength is there. We just have to tap into it. That’s my advice: Breathe.

*Today, July 11th, is Trevor’s birthday. Happy 12th birthday, Trevor!

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