Hearts and Houseshoes

Our T1D Diagnosis Story

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In this post I want to talk about my experience with my daughter’s diagnosis. This is a very sensitive subject, this post will be especially. It’s going to be one of the hardest posts I have written yet. I am already nervous thinking about sharing this story. My heart is racing, my hands are shaking. It’s been almost five years, but reliving this time is still a very hard thing to do. I have been trying to write articles about type 1 diabetes to help raise awareness of this disease. If you don’t know much about this disease you can check out my post Understanding Type 1 Diabetes. I just do a small explanation of the different types there are.

Raise Awareness

Now I felt that sharing our story was the best way to help raise awareness. I understand that some people don’t want others to know they are diabetic. That is their choice to make. But, in my family we are open about it. I have made sure to ask for permission to share these stories. Even though they are my stories, they involve a couple of people that I care about dearly. And I would never want to hurt them or talk about their problems if they didn’t approve. 

I also have a post Dealing With Newly Diagnosed T1D. It was written to help anyone who may be struggling with this disease. Knowing you are not alone really helps you learn to cope with the situation. It’s very overwhelming in the beginning. There is so much you have to learn. It’s definitely a life-changing disease. Which brings me to the purpose of this post. If you follow my posts and have read all of them remember to just bear with me here. You may already know some of the little details.

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No Knowledge

Okay, so let me start by saying that I did not know anything about t1d before any of this. And most people don’t.  I actually haven’t met anyone that did know much about it, except for doctors. That’s one reason I felt the need to raise more awareness about this disease. When my niece was diagnosed with t1d, it hit all of us pretty hard. I remember telling my sister “it could be worse”. Words I regret now. But, like I said I didn’t really know the extent of it. I was just trying to reassure her. And yea, while it can be worse, almost anything can be. It’s still pretty bad. T1d is a struggle you have to deal with every single day for the rest of your life.

My niece had been feeling pretty bad for a while. And she had lost a lot of weight. When she found out what was wrong with her, they didn’t do a very good job of explaining it. She was an adult when she found out, and I can’t help but wonder if that’s why they didn’t train her properly. It was awful. She knew she needed to check her blood and inject herself with insulin. But, she didn’t really know how to figure out the amount of insulin she needed. They gave her some paperwork that didn’t explain things very well. So, we started researching this disease to help her understand how to take care of it. Let’s just say we finally figured out the jist of it. That sure didn’t make it easy though. Nothing makes it easy.

Syptom

Then, everyone started noticing that my daughter was losing weight. She wasn’t feeling good. Her stomach hurt, she was drinking like a fish. I mean she could drink a full 44-ounce drink in a matter of minutes. She was urinating frequently, but of course, look how she was drinking. We started to notice that she was showing all of these symptoms that my niece had. I just knew she had the same disease. But, I didn’t want to believe it.

Then one night my niece was over and she talked me into letting her check my daughter’s blood. Well, guess what? Yea, you know it. That meter read HIGH. It won’t read a blood sugar over 600. So, we made her go wash her hands and try it again. Yep, same thing, HIGH! My heart just sank. I started crying and freaking out. They made me calm down, made me realize I had to watch what I was doing around her. I sure didn’t want to freak her out. But, I just knew what was ahead of us, and it’s so hard to not react to it. This was just three weeks after my niece was diagnosed.

Hopspital

So, at this point I knew we had to get her to the hospital. We found babysitters for the other kids, and took her to our local hospital. My niece insisted on going with us. She knew what was ahead and wanted to be there by her side. When we arrived they checked her out and decided to send us to a children’s hospital. I am so grateful. She received the best of care at Riley. I never found out her exact blood sugar, they just told me that it was over 1000. Now mind you that a good number is between 70-150. She was a very sick little girl.

This was the hardest thing I have ever had to do in my entire life. Just seeing your baby laying there in that hospital bed sick and knowing there is nothing you can do to change it is just gut-wrenching. Because that is one of the worst things, knowing that there is absolutely no one to blame and there is no cure.

Training

Now for the next couple of days, I had to go through classes to learn how to care for my child, well actually how to keep my baby alive. You are then told that in the worst time of your life while seeing your sick child lay in that bed that you have to start inducing more pain on them.

You now have to learn how to give them injections. Things aren’t bad enough, now you have to shove a needle into your child’s arm before they can leave the hospital. Not only that but you must do it multiple times a day. This child whom you have fought to protect from any sort of pain their entire life. This baby that you love with every drop of blood that runs through your body. Even being as descriptive as possible there are no words to truly describe the feeling of having to stab your child with a needle. It’s just one of the worst feelings in the world. And it is a day that I will never forget. Even though I have done it a thousand times now, I will always remember how hard that first time was.

They wanted to make sure that there were at least two people who could care for her. Me and my husband both took the classes. The first class was really hard. I had been up all night with no sleep. But, I knew that I had to pay close attention and learn as much as I could. My daughter’s life was at stake.

My heart goes out to anyone that has to go through this. The words “you no longer have a healthy child” will forever ring through my ears. My heart just fell to the floor. Tears just fall. There is no stopping them. In the blink of an eye, your baby’s life has just forever changed. And there is nothing you could have done to protect them from it. Acceptance is one of the hardest things to do.    

Thankful

I am very grateful for those classes. Everyone should learn how to care for diabetes as soon as possible. This disease is so hard to manage. There are so many details you have to learn in order to care for it properly. For instance, one thing I received in my class was a 3-ring binder with 142 pages of instructions. That was just one of the many pieces of information.

And even with all this information you receive, you still come home and do more, at least I did. This was a very bad idea. Of course, I had learned the risks of this disease. You know the bad things that can happen. But, when I started to do my own research, I became terrified. I started finding all of these horror stories. That’s not a good thing to come across when you just found out your loved ones have this disease. You need stories that give you hope and inspiration. Having all this bad stuff in your head is not a good thing. It scares the hell out of you.

That’s another reason I wanted to write my stories. Some of them are emotional, but they are still meant to be uplifting. They are meant to show that yea you may struggle and it’s hard, but you will find a way to cope. You will learn to manage and have a happy, healthy life. Part of learning to cope is having support and getting through the bad times. If I am able to help anyone at all, it’s definitely worth it!

You may also be interested in reading this post Insulin Is Life Support.

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6 thoughts on “Our T1D Diagnosis Story

  1. A very emotional and inspirational. Its such a great thing to raise awareness and let others know they aren’t the only ones or are the only ones who have family going through the same/similar thing. I’m sorry to hear that you and your family are going through this but I know just how strong a tough situation can make people. I hope all the best for your daughter! 🙂

    1. Thank you. It is a very emotional subject. A big reason behind me putting our story out there was because I can remember the feelings I went through in the beginning. It’s an amazing thing to find a ray of hope when you are dealing with such a troubling time. I want to be able to give that to other families in their time of need. And it definitely does make you a stronger person. Thanks again we really appreciate it.

  2. Great post! It’s crazy how minimal the signs can be for this. I’m sorry your babies are going through this, but you are a strong person for putting this on the internet! There are many more people out there who need to read these words <3

    1. Thank you. I appreciate your kindness. It was a very hard thing to do. But that was my purpose to try and help raise awareness because so many know so little about T1D. And I also know how it was for us in the beginning. I would like to try and help others that may be struggling to learn about it or even come to terms with it. If I’m able to help at least one person it’s all worth it!

  3. Great post and very emotional. I couldn’t imagine my babies going through this. I recently had my oldest tested for diabetes, she had to fast before the appointment and I was nervous the entire time. Thankfully the doctor said her A1C was in normal range. I’m sorry you and your family had to experience that and I am glad your baby is good now.

    1. Yea. It’s a horrible disease. I’m so glad to hear your baby is okay. I shudder to hear of anyone going through this. And thank you. It’s a daily struggle that never stops, but we are managing.

Your feedback is always welcomed and appreciated.

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