A few weeks ago I wrote a post about watching Author Moira McCarthy on Tu-Diabetes during a video chat. In this post I talked about how I cried while watching this video chat. It was the first time in a year and a half that I felt at ease about caring for my son with Type 1 Diabetes. I felt at ease and understood by a fellow mom who has been in the trenches before.
This mom talking to me understood the anxiety that I felt when my son would lie to me about taking his blood glucose or even taking his insulin. She also reassured me that this was normal!
I have been reading this book and if you were to see the book it is already dog eared and written in and pages wrinkled. To me this is the sign of a really awesome book! This means I have gotten a lot out of this book.
Moira has written a book that is easy to read and very entertaining. Moira shares in each chapter stories from her own life and trials with her family as they walked through Type 1 Diabetes with her daughter Lauren. This book offers practical wisdom on how to communicate with your teenager with diabetes and also with your other children that do not have diabetes. She even covers the topics that we tend to shy away from such as driving, drinking and…..Sex.
The advice that Moira gives is given in a way that is light, funny and thoughtful. Throughout the book you will find vignettes that feature thoughts by her daughter Lauren, other experts in the field and other parents and their experiences. Even if you do not have the time to read a whole chapter these additions make it easy to find an answer you have been looking for.
Let me tell you that I feel strongly that this should be the “bible” for parents of teens with diabetes and it should be handed to you in a blue velvet covered box that says take this daily with insulin and blood checks!!!
To learn more about Moira and her book tune in to Conversations In Care to hear her interview.
Moira McCarthy is an acclaimed writer, author and public speaker. She was recently recognized as the JDRF International Volunteer of the Year. Her books include the top-selling Everything Parents Guide to Juvenile Diabetes.
Adventures in Traveling with Type 1 Diabetes
In January I launched a radio program on Blog Talk Radio called Conversations In Care. Once a month I feature stories and information about Type 1 Diabetes. I decided to do this because being new to this disease I know how much we just don’t know or understand. I also wanted to include a way for us as parents, and those with Type 1 Diabetes a place to connect. To know and understand that you are not alone in this adventure.
Yesterday, I had the pleasure of having Michelle Weisenburg, mom (CIO – Chief Insulin Officer) to Jordan who was 9 when he was diagnosed and is currently 15 and about to get his driving permit. We had a wonderful conversation about being a parent, wishing we paid more attention in math class and tips on how to travel well with Type 1 Diabetes.
I had so much fun with her on the show that I want to have her as a regular. There are so many things to talk about that I am sure I can convince her.
Listen in and Enjoy!
This has been a really tough year one that has tested not only my patience but my strength. Brandon has struggled with accepting diabetes and he has spent many months angry. Frankly, I have spent many months angry. Diabetes stole from me this super funny kid that laughed and joked and left me with this kid that slammed doors, and cursed and broke plates.
During this time there were days that Brandon refused to test his blood sugar and take his insulin. His therapist suggested some extreme forms of getting him to be compliant. Things I was not ready to do and struggled with. I wrestled with the ideas she gave me and the kid that I know. A sweet boy that is uber funny. When spoken to gently can be reasoned with. One that I knew was trying in his own way to come to terms with what life just dealt him.
I on the other hand was dealing with increasing anxiety of making sure that my son would not die. That he would not damage his body with the highs. This anxiety took over. This anxiety made me angry when he would not take his insulin because I was scared that he would die, that he would cause damage because of the highs.
It took time and patience, it still takes time and patience. And by the expectations of his therapists he may not be making the progress that they would like him to make, but he is making progress. What makes me believe that he is making progress other than the lowering of numbers? Let me tell you.
About two weeks ago I went into his room to wake him up for school and take his blood sugar. This is a task that I need to be throughly prepared for. I learned quickly not to sit by his legs during this new morning ritual. He rolled over and stuck his hand from underneath his blanket. “Hey bub, what finger do you want me to prick.” Remember he is still under the blanket except for his hand, facing the opposite direction. He slowly pulled back four fingers to revel his middle finger. There it was, his humor. It’s back. Giving Diabetes the middle finger was absolutely priceless to me.
Today I am launching my first episode of T1Day on Conversations In Care on blog talk radio.
Conversations In Care is a radio program dedicated to care celebrations and issues. When I launched the program a month ago I knew that I would dedicate one show a month to Juvenile diabetes.
My guest is Kit from GET Diabetes Education. We will be talk about the basics of Type 1 Diabetes. I am a little nervous because I will be sharing a little about my sons diagnosis with the listeners. I am praying that I do not cry!
If you have a chance to tune in, I would love to have you listen. You can join in the conversation through chat or even by calling in to ask a question!
Call in Number (646) 478-4343
Hope to see you there!
What I am thankful for today. I am thankful for my 5th grade math teacher for staying after school to help me understand math. I am thankful for Debby Davidson for tutoring me endless hours to help me understand math! I hated it and cried over math nightly. I am thankful that they spent so much time helping me to understand math because if I did not understand math I would not be able to calculate insulin dosages for my son!
This was the post I posted on my Facebook page a couple of days ago. Over the past 9 months I have used math more than I think have in a really long time. Dividing and subtracting and calculating the doses of insulin for my son. I read somewhere that Juvenile Diabetes is the disease of burnout. Because the person with the disease and their caregivers never get a break from the disease. I know for me as my sons caregiver, that the math is that part of the disease that wears me out! I struggled with math my entire life and had teachers stay with me after school to make sure that I understood the basics. My parents hired a neighbor who was going to college for education to spend time with me every night to help me get through all my math studies. I do remember how torturous this felt to me at the time. I remember the tears and the frustration.
I remember some of the initial thoughts that I had while in the hospital with my son the first day. We were learning how to calculate how much insulin Brandon would need. I remember our Diabetes Educator pulling out plastic food and telling us how many carbs each piece of food had and how to add up the carbs and how to divide them by the number that was indicated for Brandon on the sliding scale. Then we talked abut the correction dose. This needed to be calculated a different way. WHAT! It was too much for my right brained creative mind to handle! That is when I began to understand why this is a disease of burnout. For me it is the math. I am always excited when it comes time for Brandon’s long acting insulin – no calculations just the dosage the nurse told us to take.
Needless to say today I wish I knew where Mr. Sheets lived so that I could personally thank him for not giving up on me and helping me through 5th grade math. Somehow he knew that I would need math in my life.
Today was awful. Brandon woke up this morning and he didn’t feel well. I have been attempting to work with him on working through a morning in which he does not feel well. Well the morning turned bad quickly. He picked up the garbage can and began throwing up. This tells me his blood glucose is high. Took his blood sugar and he was HI. I had him pee in a cup and we tested for ketones and he had them.
Then the anxiety set in. Brandon is sick, we now have to begin the water and testing his blood glucose every 2 hours. I am also supposed to be at a conference that starts in about 45 minutes for work. What do I do? I have no one here to help me. My ex husband has disappeared and we have no idea where he is. My family lives in another state and I have only lived in Indiana for about a year and really have no friends to help.
The anxiety is so thick I am not sure that I can breathe. I hate the feeling of worrying about my job when my son is sick. I am not sure how to pull it all together some days. How to be 2 people in 2 places.
I feel emptied of strength.
Our first day in the hospital there were so many thoughts going through my head. As I followed the ambulance to the hospital, I made a call to my sister in Ohio to tell her about Brandon. We quickly made the decision not to tell mom for a few days. At the hospital the Endocrinology team advanced upon the room. Doctors and nurses and diabetic educators and dietitians all came in to talk and to learn about his history and to reassure us that it was nothing that we did that caused the diabetes. They asked us about his eating habits, is there a family history of Type 1 Diabetes, autoimmune disorders?
I first thought did he get this from me? His father? Would he have to be on a pump for the rest of his life? I didn’t want him on a pump for the rest of his life. Would he have to eat snacks out in the hall way at school like my next door neighbor did when we were kids. I can’t cook – will I have to start cooking? Will we have to eat vegetables?! I am a single mom how am I going to handle this when he is home by himself? I am a disorganized mess how am I going to add this into the mess we already have?
Then I saw the changes that first day, he had spunk, his cheeks had color, the circles under his eyes began to go away. The food, he ate so much food! I then saw something that humbled me. He was amazing. He handled this with grace and humor. I was not only proud of him but he was and is my hero!
It was amazing to have such a dedicated team to help us through our first days. Our first four days with the disease were spent in the hospital with a support team to guide us and teach us and hold our hands. The place we didn’t want to be became our refuge and leaving the hospital was scary.
This is the day that we learned that my 12 year old son was diagnosed with Type 1 Diabetes. The next 4 days were spent at Children’s Memorial Hospital in Chicago. I am not sure that I remember much of what happened in those four days. I do remember the amazing changes that happened when insulin entered my sons body. He perked up. There was color in his cheeks when there wasn’t any before and the circles under his eyes, poof they were gone.
He was amazing, he listened as the dietitian taught us how to count carbs and how our diabetes educator taught us how to manage the disease and how to calculate his insulin. Within that first day he was giving himself injections and had mastered the math. He was adapting to his new life.
The past 6 months have been challenging and life changing. This is our journey.