I have been wanting to write about this feeling that I have had over the past few weeks. However, part of me is very reluctant to share what I am feeling. In part I am afraid that people will judge me and in part I am ashamed that I feel the way that I do.
So please bare with me as I search for the right words to use to adequately explain the emotions and feelings turning inside.
Lately it has been a struggle to keep my son on track with his diabetes care. Don’t get me wrong we have made many strides in getting to a better place but it has been a struggle. In my efforts to help him to be well I often get frustrated by his unwillingness to take care of himself. I sometimes get down right pissed off that he gets upset with me when I bring the meter to him or prepare his insulin for him.
This is where I beat myself up. I know that this has been an even more difficult transition for him. Anger for getting a diagnosis that has no cure and will be with him for the rest of his life. That even when I am not here for him that he will have to take care of this health on his own. That sucks. I know that he has days when he is tired of this disease and that he wants to hide from it. I also know that I am the only parent he has to help him through this and I am the one person he can show his true emotions to. I also know that he is a 14 year old boy. Still a kid, that has not developed all the skills to take care of himself.
Having that knowledge sometimes does not help, because sometimes it makes me mad, and sometimes it pisses me off when he doesn’t care for himself and sometimes it hurts to see him hurt and sometimes it frustrates me that I am the only one taking on his care.
I would love to say that I am a picture perfect parent when it comes to helping him manage his diabetes and emotions. I am not. I try my best with what I have but it is a struggle as a single parent to make it all work. It is really tough to know how to help him and to know when to push him.
This is a dark time in my life and I know that others have been here before me but I am not sure that we openly talk about the feelings we have as a caregiver. I know that I am hesitating to post this because I am afraid that I will be harshly judged. The feelings that I have can’t be mine alone, but because they are not positive in relation to what I feel I am supposed to feel as a caregiver I do feel alone and not understood.
2:00am seems to be some magical hour. Or it is the standard hour that all broken pancrei (not really sure that is a word – but a fellow DBlogger used it so I am sure that is in the dictionary, if not on Webster’s list to be added to the dictionary next year).
It is the hour in which I wake up to test my sons blood sugar. It is actually 2:00am right now, maybe not in your part of town, but here in North West Indiana it is. Like so many D Moms and Dads. I am not sure what a full 8 hours of sleep looks like any more. I was hopeful that tonight I might get about 3 maybe 4 hours straight. However, I do not think that is going to happen. I tested his blood sugar and he was at 80.
Now technically this is a very Awesome and wonderful number, but for my son this is a number that is as rare as a purple zebra. (He must have been in my dreams, otherwise why would I say Purple Zebra?) It is a number that neither myself or Bubba are comfortable with. I gave him one glucose tab just to bring him up a tad to hopefully nudge his numbers up a bit, turn them around.
Hold n a second….
Yep, it turned it around just enough. To give me a little comfort to go back to sleep for a couple of hours.
Sweet dreams…. Haha that is funny. I hope my dreams are laced with a cure for jump starting the pancreas.
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!!!
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.
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.
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!
I remember being shuffled into the hospital room and the many doctors and nurses coming in and out of the room getting Brandon settled in to his new safe place for the next four days. While this was happening and while I was trying to understand and process how our world was changing, I remember thinking how am I going to do this? I am barely making it. With working all day and sometimes really long hours, how am I going to make sure that he gets what he needs and that he is getting the proper doses and wil he take his insulin while I am gone?
I thought to myself how am I going to make this work? I have to work and I have to take care of my son.
My job and the needs of my son were consistently competing. I always felt guilty, a constant gut wrenching anxiety over took me. I felt guilty because I had to work and during the summer Brandon’s A1C skyrocketed. I felt bad that I had to call off of work or skip a networking event because of my son. The tugging at my heart of making money to put food on the table and getting my son to all of his appointments and being there to monitor and make sure that he received the insulin he needed was making me sick.
As a single parent there is always that struggle to strike the right balance of being at home with your children and keeping your job. I remember when the kids were younger that constant feeling of failure was with me every day. When the kids got older and were able to do things on their own I felt a little more at ease. However, the anxiety returned that day in the hospital when the staff was floating around us. How am I going to do this?
I would like to say that my ex-husband is highly involved with his children and knows what is going on with Brandon’s care. I would like to say that he is my support team as we wonder along this path of diabetes. He did make a valiant attempt in February to say that he would be there when he was sick or needed to go to the doctor. The really sad fact is that he has not been around. He doesn’t even know all the changes Brandon has been through with his insulin or that he did a saline trial with an insulin pump and he determined that he didn’t like it. He hasn’t even talked to his children since July.
When I look back at all that we have been through since February I look at my son and see how he has struggled and how he has triumphed. I see the days when he is sad and frustrated and the days he feels like he is a champ. Through all my anxiety and worry I am the one that holds his hand when he is scared and chokes back tears to show him how to be brave. No matter how hard this journey is or how tired I become I know that I get to experience this with him and watch him grow every day into a super brave and confident young man. This is what helps me to make it work (along with phone calls to my best friend and daily conversations with my higher power.)
Every ex-spouse has a reason that they divorced and often we have negative feelings toward our ex’s. We often curse them under our breath. I have felt and done all of those, but interesting enough the feeling I have for my ex husband is sadness. I am sad that he does not get to see Brandon grow and develop in to the wonderful human being he is becoming.
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.
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.