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.
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.