Interview With My Sister: When Your Child Has Type 1 Diabetes

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SHARING YOUR STORIES

Since struggling with Lyme, I’ve realized more and more the power of sharing your story. I have talked with so many women who have inspired me in their journeys through hardship. I would like to share some of these with you, and the first person who came to mind was my older sister. She went through something extremely difficult a few years ago and since then, has become more vocal about her faith and her passion to share it with others. I know you’ll be blessed by her story.

MEET JENNIE

Jennie’s been married for 20 years and has three hilarious girls (who still think I’m the cool aunt!). Since we live far apart, I called her up and did the interview over the phone. I’m so excited to share her story with you!

Q: Hey Jennie, thanks for agreeing to do this! You had a child recently diagnosed with Type 1 Diabetes. Before we get into that, tell me a bit about the lead up to this event. What was your typical day like? What did you stress about?

A: Thanks for asking, I’m excited to do the interview! Let’s see, I’d been a stay at home mom for 12 years and my youngest, Brooke, had just started kindergarten. It was a new phase for me. It was actually really hard because she was the youngest to go off to school. I had to find this new identity and all of a sudden I was like, Now what do I do? Nobody needs me! What do I do with myself now?

I struggled with anxiety off and on in my teenage years for no obvious reasons. Then in my late 20’s I had a friend/mentor of mine from church die from cancer. He was only 43 and left behind a wife and 5 kids. It really shook me and my anxiety returned for a time. Worrying about health issues became a trigger for my anxiety issues because of all the uncertainty and what ifs. 

Q: So with that in mind, you ended up having to deal with health issues after all, but turns out they weren’t your own. How did your daughter’s Type 1 Diabetes diagnosis change everything in your life?

A: So it was about two weeks into Brooke’s kindergarten year. I had a hard time with her going but I was kind of at the point where I felt I could get into this routine because now I had a lot of free time!

But a few weeks in, Brooke started exhibiting signs that were weird. She had to go to the bathroom all the time in the middle of the night and was wetting the bed. She was five so it wasn’t totally out of the realm of normalcy, but it wasn’t normal for her. Brooke would get up in the middle of the night to get drinks and was thirsty all the time. She ate her dinner and then finished Kylie’s dinner.

She was always hungry and thirsty and bedwetting. A couple of times she would even pee on the floor because she was so tired. So it was kinda weird. This was going on for a week and I looked her symptoms up online. Type 1 Diabetes popped up. I thought No, it can’t be that, because it’s never that!

I was used to going to the worst case scenario with my anxiety, but Chad would always tease me and keep me grounded. I’d be like, Oh my foot hurts! and he’d say, You probably have foot cancer! You have to get it amputated. I really just thought she was going through a growth spurt and that I was being a paranoid Mom. I remember joking around telling mom and dad, Well, she’s either going through a growth spurt or she has Type 1 Diabetes!

That night she had a bunch of accidents. She peed on the floor in front of our bedroom and I thought, this isn’t right. I remember when she peed on the floor in the bathroom, Chad noticed it was sticky, which it was because it had sugar in it.

This had been going on for about a week, but that night she had a bunch of accidents and was complaining of a sore throat. So the next morning, I took her to the doctor to test for strep throat. But in the back of my mind I wanted to ask them about diabetes just to make sure. I told myself I was just being paranoid.

Before we went in, I looked online and one of the symptoms was weight loss. She went to the doctor a month before, so I knew how much she was supposed to weigh. When I checked, I saw she had lost five pounds that month and my heart sank. I knew that couldn’t be good. I called Chad because he’s my level-headed, calm person who always tells me it’s fine. And his response was, No matter what happens we’ll figure it out together and it’ll be ok”. When he said that, it confirmed my fears because it was rare for him to be worried.

The doctor tested her for strep and checked her urine. When she returned, the doctor said, She has sugar in her urine, and that only means one thing. She has Type 1 Diabetes. They checked her blood sugar and it was 600. A non-diabetic is around 80-120, and Brooke’s was 600. I didn’t know what that meant—I didn’t know anything about diabetes. You don’t know anything about a disease until you have to. All I knew about diabetes is that when people eat sugar, they have to have a shot. I didn’t know what her diagnosis meant, I just knew it wasn’t good.

Q: So I know you called Chad and Mom right away. What did the doctor tell you to do next?

A: The doctor told us to take her to the hospital so we pulled our big girls out of school first. I wanted to tell them in person before we left. We spent two days in the hospital basically learning how to keep Brooke alive. We learned that meant we had to give her shots every single time she ate. I’m thinking that means maybe once or twice a day, but it was more like 5-7 times a day in addition to 8-10 finger pricks a day too! We learned how to check her blood sugar and what to do if it was too low or high. If her levels were off, she could go into a coma and all kinds of other terrible things. I remember constantly worrying, Does this mean my kid’s gonna die?

It was horrible because you’re leaning all these scary things. You’re not sleeping, so you’re at the hospital half awake trying to take in all this information. You’re emotionally drained, and trying to keep calm for your five year old that’s having to go through all of this. It was very emotional.

Brooke was pretty good with the shots—the first one she didn’t really know what was happening and the second one she was like, Ok I don’t like this. They were actually really good to her in the hospital. They took her down to a play area and Rapunzel came to our room—for her it was kind of a fun experience. There was a nurse that came in that also had Type 1 Diabetes. She sat and talked to us for a long time so that helped a lot just to have someone who had been through it. That really calmed my fears. I was also texting my friend who has it and she was telling me questions to ask and about devices to get later on that would really help.

Q: You were thrown into a really hard situation, trying to figure it out as you went. I asked you to do this interview because I’ve seen you grow in your faith through this. Did this experience test your faith and where are you at now in that process?

A: I’m convinced that because of God’s divine sovereignty over my life I had just been asked to join an intense Bible study a couple months before Brooke’s diagnosis. We happened to be studying 1 and 2 Peter and there was lot of discussion about how to be more like Christ we had to suffer more like he did. I actually had written down in my journal, What does that look like? Little did I know I was about to find out.

The day of Brooke’s Type 1 Diabetes diagnosis, I remember thinking about this and feeling almost at peace because it was so evident to me that God prepared me for this exact moment. I knew God would be walking with me through this every step of the way, as he always has been.

However, I was confused and frustrated. I thought he was going to use me! Why would he chose to use Brooke instead? It seemed that he used her to transform me both times through my history of miscarriages before she was born, and her diabetes. I was definitely hesitant to really dig deep in the Bible and mostly started with prayers because I was scared of what else he would reveal or say to me!

Q: How have you seen God produce good in this situation? How have you grown spiritually?

A: I’ve learned that gratitude comes first. These kinds of things put life in perspective. I’ve learned that God cares more about our spiritual healing than our physical healing. My family’s stronger now and more empathetic toward others because of this. My older daughters are so wise in how to deal with the emotions that come with this–they are constantly encouraging me that I can do it! They’ve been amazing and it has truly been a life-changing event for every single one of us.

Q: What transformations have you seen in your life since then? What does your new normal look like?

A: We came home from the hospital with a huge bag of medical supplies, and all of a sudden it’s like I became a nurse. It was really hard once we left the hospital because Brooke thought it was all over and we had to tell her it was just beginning. The first few days we had to hold her down to give her her shots and a couple times I had to leave the room because it was too much for me. I really thought I’d never sleep again because in the middle of the night her levels would be off and I’d have to give her a snack or a shot.

We’re almost five years into this, so we’ve learned a few tricks, like now she uses an Omnipod, which is an insulin pump. We change it every 2-3 days. Dexcom, which is a CGM (continuous glucose monitor), reads her blood sugar every 5 minutes and sends it to her phone via Bluetooth. Then it sends it to my phone so I always know what her blood sugar is even at school and night. We change it every 10 days.

We try to keep things as normal as possible for her, but there are some things that just can’t be. For example, I have to go to birthday parties with her, and sleepovers are only at our house. When she went to summer camp, her sister Breanna, had to monitor her, but they had no cell service so I worried about her numbers at night. One night I worked myself into a panic to the point I worried she could be dead. I prayed to God that her number would come in on the app so I could know what was going on. It came in once, at the perfect level, and never showed up again at night for the rest of the week. He’s constantly reminding us that he’s got this.

Her school has been so supportive–the school nurse is like her grandma! The staff went through training as soon as I notified the school, and the nurse lets Brooke hang out with her whenever she wants. They love each other.

Another time I saw God at work, was that I wanted her in sports, but it had a lot of challenges. Her nurse happened to lead a Pom Pom Squad that Brooke was able to join without me having to be there every time!

Q: What advice would you give to someone going through this for the first time?

A: It’s scary, but it’s not as dire as it sounds. Because of the advancements we’ve made in the medical field, it’s much more manageable than it used to be. It took me awhile to get over my fear that she was going to die, but if you’re addressing the diabetes and treating it, its not as dire as it seems.

I had to stay off of Facebook support groups because it seemed to be more of a place for people in worst case scenarios and it just added to my fears. What really helped me was finding someone who was ahead of me in the journey who could be my sounding board and help me troubleshoot. Two months after Brooke was diagnosed, I was eating at Panera and her alarm (on the app) went off. When I reached for my phone, I realized it was actually a mom next to me who’s daughter’s alarm had gone off. We’ve been connected ever since and she’s helped me so much on this journey.

Q: Are there any resources that you would like to share that have been helpful to you?

A: Besides connecting with other diabetes moms, I have a few books that are helpful. Coco Goes Back to School is one I read to her class every year to talk to them about diabetes. It was good for Brooke and her classmates to understand why she went to the nurse, had devices on, beeped all the time, or could have snacks throughout the day.

BEFORE YOU GO…

Thank you for reading and I hope you were blessed by this interview like I was. No matter what you’re going through, remember, you are not alone. You have a God who sees you, hears you, and loves you.

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Stay hopeful, friend. You’ve got this!

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