Old Clocks (Photo credit: servus)
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.
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.
I feel emptied of strength.