Thursday, November 14, 2013

Diabetes Sucks

November is hard. Really hard. It is Diabetes Awareness month. And, today is World Diabetes Day. You know how you tell your children to ignore the bullies because they are mean and not worth your time? That is how I feel about diabetes.
When I got a tattoo for Sarah, there were people that expected a blue ribbon or a blood drop. I wanted to honor her life, not what killed her. I want the world to remember how she lived, not how she died. I prided myself on the fact that she had diabetes. It didn’t have her. A friend posted a blog on my personal Facebook page. It was a letter that an adult Type 1 wrote to herself before she was diagnosed as a very small child. She wrote of the things her parents would have to learn to do for her. The things she would have to miss out on. Also the things she would have to deal with daily that “regular” kids would not. I found myself being flooded back with memories.
You see, I have spent the better part of the last two years focusing on the best moments with Sarah. Her outstanding personality. Her laughter. Her compassion and devil may care attitude. Her brilliance. But, not on the hard times.
They were my hard times, too. You will see many posts and blogs this month about the things that a diabetic patient has to do and go through. But, you see, it isn’t just a person that has diabetes. The entire family does. From the parents that have to learn an entire cannon of information on a scary new disease to the siblings that are not only scared for the sibling. They also see the fear and stress in the rest of the family. The grandparents are overwhelmed and worried. Will they ever get to come spend the night again? And, if they do, will I know what to do?
Thunderstorms and bad weather would always make Sarah’s sugar drop. We could count on it. They were a huge stressor for her. And, when it fell, it would go fast. There was one night in particular that we had been stuck in the vehicle at my original in-laws because the rain was falling so hard that we couldn’t get out. (I just can’t call them my ex-in-laws. They are still a huge part of my life and I am glad to call my original mother-in-law my friend.) I have never seen rain like that. When we finally got home, I remember opening the door for the kids to get out. We were in a quad cab truck so Sarah was a little above eye-level. I told her to get out. I looked at her face and saw the glazed over, non-responsive eyes. 
Here is come. When her sugars fell REALLY low, she would have a seizure. She started shaking and jerking. Ty, her younger brother that was probably eight or nine at the time was in the back seat with her. He had never seen her have one before. He was terrified. We checked her sugar and got some into her. We waited in the truck until she came to enough to get her in the house. Ty just stunned the entire time. But, he had paid attention.
The kids were staying with my parent’s the next day while we were at work. I called my mother to see if Sarah had checked her sugar. She was on the phone with me when she found her on the floor convulsing. I was lucky enough to have an employer who didn’t mind me running out the door and calling them from my cell phone to tell them that my daughter was having a seizure and I would call them back when I knew more. I ran in the house to find my mother and brother just in awe. Ty had come right in with her kit. Checked her sugar and was giving her the sugar. He knew exactly what to do. He may have saved his sister’s life that day. We are still proud of him for that. My brother and I never had anything near like that happen. But, they had to watch their granddaughter like a hawk when she was there.
The homes of both grandparents had stashes of syringes and partial bottles of strips. There was always something to bring her sugar up and ibuprofen for the headache that inevitably came after a low. They had to be ready, too. Her brother had to keep an eye out, also. He was always aware of if her mood was off, or she had a funny look on her face. I caught him making sure where her purse was on more than one occasion.

And, there are so many things that make it hard on a diabetic themselves. If she left her purse somewhere, she had to go back to get it. Especially once she had her pump. That glucometer in her purse was the only one that would talk to her pump. Her sugar tablets were in there, too. She didn’t always get to have the cutest purses. They had to be big enough to hold her purse.

When she got older, and wore skinny jeans, she had to deal with people asking why she had two phones. She would pull her pump out of the pocket and show them what was basically and artificial, external pancreas. When she was younger, she hated the attention brought. When you are eight or nine around other kids and you open your kit, people stare. Especially kids. And, there are times where you can’t be discreet about it. As she got older, she considered it more of a teachable moment and would tell the person who asked what she was doing and why.
Sleep overs were out of the question for a very long time. Then it was only at homes that were within a certain radius from our house. And, I eventually just made a list to give the moms of directions and phone numbers.  Being in a small town, they all knew Sarah. They were always great to have diet sodas and things that she could eat without shooting her sugars through the roof. And, they were never afraid to ask questions.  But, the parents of her friends still worried.

And, then there were the students, teachers and staff at school. I still vividly remember the phone call from the school that she had a seizure. One secretary was on the phone with me and another with her father. The ambulance was already on the way and her dad beat them there. Luckily, they were in the computer lab with huge tube style monitors, so only a few of the students actually saw her fall out of her chair into the floor. One of the students had to go to the classroom to get her purse and kit for her dad. Did I mention you have to take your kit EVERYWHERE? She did after that.

Then there is life as a parent or spouse of a diabetic. There is the constant checking to see if they are still breathing in their sleep. There are so many fights when you have to keep asking, “Did you check your sugar? Did you dose for that? Are you sure?” It gets worse when they are teenagers. Diabetes is a glandular issue. Yeah, you know those glands that affect a child’s body by releasing those horrible hormones that turn your sweet little child into a raging, hormonal demon spawn? Same system.  So, it really screws with diabetic kids that already feel like they stick out like a sore thumb. And, their fingers are callused and hurt. They are tired of having to be accountable for everything that goes in their mouse. They cannot just go get a coke with a friend. They might get lucky enough that the store has a diet drink that they like. But, it never fails they don’t.
So, you see the person with the diagnosis isn’t the only one with the disease. It directly impacts everyone that loves and interacts with them.

And, it sucks.


Craftysta said...

Thank you for sharing your story. I never knew the impact it has on everyone.

DeBie Hive said...

So much truth. Love to you tonight. xo

Marlo Whetsel said...

Thank you so much, ladies. We've got to get the stories out there. But, you already know that. ;)