Q&A with Parents of Type 1 Diagnosed as a Young Adult

Q&A with Parents whose college kid was diagnosed with type 1 diabetes

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When we hear of people becoming parents of type 1 diabetics, we usually hear of parents of young children who were just diagnosed. Personally, I was 12 years old at diagnosis, and my co-blogger’s son was only 3 years of age at the time. But more often lately, older children, some young adults, and some people even well into adulthood are being diagnosed with type 1.

I would love to share with you a conversation I had with parents whose daughter was in college when she was diagnosed. What was that like for them to experience their daughter’s diabetes diagnosis? And what was their important role in her care, as she was young but technically an adult? Let’s find out.

Q&A with Parents of a College Kid Diagnosed with Diabetes

Becoming The Parents of Type 1

Q: When most people talk about having a child diagnosed with diabetes, they’re referring to a young child or pre-teen. But your daughter was in college at the time of her diagnosis. Can you explain what happened?

A: Our daughter Alyssa was diagnosed with diabetes at age 19. She was on her way back to St. Louis from Chicago when she started to feel ill on the train. The next day, she called to say her back hurt and she was vomiting and couldn’t quit. I (Sarah) took her to Urgent Care, and they said she had a kidney infection so they prescribed oral antibiotics. She was unable to keep the antibiotics down so I ended up taking her to the ER. While in the ER, she was diagnosed with a kidney infection & diabetes. Her blood sugar levels were over 450, so she definitely had high blood sugar. She was admitted and stayed in the hospital for 3-4 days while she stabilized and started on both long- and slow-acting insulin.

The Affects of a Diabetes Diagnosis on the Family

Q: With her being 19 and admitted to the hospital, that affects the whole family. How did that work for you all while she was in the hospital?

A: Luckily, she was at school in St. Louis where we live, so I (Sarah) was able to stay with her in the hospital. And John was working and staying with the boys who were still in high school.

Q: You obviously did what you needed to do for your kids, and lots of parents find themselves separated at diagnosis for this very reason. But what was that like for you as parents to be apart during that time?

A: Thankfully, John was able to come up to visit since the hospital was local. It wasn’t really as big of an issue for us as it is for some.

The Reality of Becoming Parents of A Type 1

Q: What was your initial reaction to her diagnosis?

A: I (Sarah) was shocked to say the least. When I initially took her to the ER and the doctor told us she had a kidney infection and found something else wrong, I was actually relieved to hear it was diabetes because I thought he was going to say she had cancer or leukemia. I knew diabetes wasn’t curable, but I also knew it was treatable.

I (John) was mostly surprised. She was very healthy up to that point, and I never thought she would be diagnosed with diabetes.

Parents of Type 1 Diabetic - quote 1

Symptoms of Type 1 Diabetes

Q: Had you seen any risk factors earlier, maybe while she was still in high school and still living with you, that pointed to diabetes?

A: Yes. Looking back, we realize she was showing signs starting when she was 17 years old. Her emotional swings were extreme. She was very irritable in the morning. She was drinking lots of water, and she was getting up at 2 or 3am to eat a full meal. I took her to the doctor several times to try to rule out anything physically wrong, but it was never diagnosed then. 

Q: What had you done to try to help her with those symptom?)

A: I kept frozen meals in our freezer that she could easily microwave at night. Like I mentioned earlier, I had her at the doctors office several times. I thought it had something to do with her thyroid, never guessing it could be diabetes. 

Parents of Type 1 Diabetic - quote 2

Learning to BE THE Parent of a Child with Type 1

Q: While she was in the hospital at diagnosis, how did they initially train her in good diabetes management?

A: She had a diabetes mentor at the hospital and other healthcare providers who were wonderful. She showed our daughter how to prick her finger to test her blood glucose levels on her blood glucose meter, how to give herself shots, how to count carbs, and how to take insulin injections. She was given both short- and long-acting insulin doses at that time. They taught her all the new things that she would start to deal with in everyday life.

She was given a lot of support while in the hospital, and she found a great endocrinologist she really liked. She had a folder full of information when she was discharged from the hospital.

Q: After she was released, did she return to college and live on campus?

A: Yes. She had roommates who were studying to be in the medical field who were very supportive, and that also helped to ease our minds.

Q: How did you feel about her taking care of herself and living outside of your home right away after diagnosis?

A: Alyssa has always been very independent and self-reliant. And that worked in her favor with all of this. She wasn’t far from home and was technically an adult. She knew we were only 20 minutes away if she needed anything at all, so it worked out ok.

Parents of Type 1 Diabetic - quote 3

The Involvement OF Parents with a Type 1 Young Adult

Q: Were you as her parents able to still be connected and involved at some level?

A: John went to the eye doctor with her where they detailed the importance of regular eye visits and potential complications. But she was very responsible. I (Sarah) was involved in some of the doctor appointments. She was always open to letting us be part of her health care.

Q: Were there parts of Alyssa’s personality that helped ease your mind if you started to worry?

A: Alyssa had always been mature. She was also a healthy eater and regularly doing physical activity before diagnosis. So we reminded ourselves of those things.

Q: Can you tell me how getting her a dog was helpful?

A: After she moved back home, we got her a dog. She must have been around 21 or 22 when I brought the dog home. It was a surprise for her. The dog was really helpful to her. She was always by her side when she woke up in the morning and when she came home at the end of the day. If she was having a bad day, the dog was her comfort and was a calming influence and emotional support for her.

Living with Diabetes Today

Q: How long has she lived with T1D now? And how is she caring for it today?

A: She has had diabetes now for 14 years. She has had different treatment options, but is currently wearing both a continuous glucose monitor and insulin pump. Her doctor recently prompted her to start with some diabetes technology for better control so she can start a family when she is ready.

Q: What was the most challenging thing for you each as parents to come to grips with your daughter’s diagnosis?

A: For me (John), it’s that this chronic condition is an every day battle for the rest of her life. Some kids will get an illness and recover, but this autoimmune disease is forever.

For me (Sarah), it’s that she was technically an adult and I couldn’t do much. I worry about her, and I get concerned when she’s alone. You just never want your kid to suffer.

Parents of Type 1 Diabetic - quote 4

The Faith of Parents of Children With Type 1

Q: How has your faith helped you through this?

A: We mostly pray. We pray for her all the time. We know that nothing will happen to her without it going through God first. She made a commitment as a child, has wandered away, but is now coming back. We just pray for her.

Q: What are your prayers for her?

A: We pray that a cure will be found in her lifetime. We pray for the future research to bring that about. We pray that the treatment will become more affordable because the financial burden can be overwhelming. Ultimately, we pray that she can live a long, happy, normal life despite the diabetes.

Advice for New Parents of a Type 1

Q: How would you encourage a parent who has recently had a child diagnosed with diabetes?

A: (Sarah) If they’re older like Alyssa was when she was diagnosed, just know that you can’t do it for them. You can’t fix it. And you didn’t do anything to cause it. The best thing you can do is be there to support them in this new situation.

(John) Just know that all the horror stories of diabetes are when it isn’t managed well. Your child with diabetes can still have a good quality of life! Just help your kid learn to manage it well, and encourage it with a positive attitude.

Parents of a Type 1 Diabetic Diagnosed as a Young Adult, pictured at her graduation

John is the Executive Pastor of Adult Discipleship at First Free Church in Manchester, MO. He enjoys hiking, reading, kayaking, fishing, camping, traveling, and spending time working in the yard. John is also is a certified mediator and often works with churches and marriages in crisis. He is a Pastoral Counselor. He is a father of 3 adult children, and he became a grandpa (Papa John) in October 2023.

Sarah is the Purchasing Manager at CTA, Inc., a Christian web-based company that provides resources for churches, Christian schools, and individuals. She has worked there for 21 years. Sarah enjoys reading, hiking, kayaking, camping, traveling, and spending time with friends and family members. She is also really enjoying being Nana to her new granddaughter.

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Welcome to my Devotions on Diabetes website! Thanks for stopping by. I've lived with diabetes for 30+ years. And I'm here to provide you with a heaping helping of encouragement while you deal with diabetes and navigate this chronic illness with God by your side.

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