Hating Diabetes

I am so tired of Diabetes.

I've been indifferent about diabetes most of these past three years. Indifferent because she also has bipolar disorder. Handling diabetes is so much more scientific and precise than trying to handle/treat the mood instabilities.

You see with diabetes, you know you need to check blood sugars and take insulin. Sure, it takes a bit of time to get the right dosages of insulin and right when you do, the insulin need changes. But its still just insulin.

There are so many medications to attempt to put together in the right combination with tolerable side effects that it can take so much time. Jada has been on every class of medication out there for mood stability that there is and her needs are still changing.

Back to indifference. I was indifferent because managing bipolar is just so much damn harder than managing diabetes.

But now. I am down right hating diabetes. I hate snack and meal times. I hate saying check your blood sugar. I hate having to bolus. I hate having to count carbs. I hate having to worry every time she goes to the bathroom too much. Diabetes just seems like such a bother.

Realistically, everything right now feels like a bother to me so I guess Diabetes just snuck itself into that category too.

Single Parenting

Majority of the time, I don't mind being a single parent. There are lots of perks to me.

But there are a few times that I wish I had a partner to rely on.

For instance, Friday night. Erin went to bed with a glow stick. She then decided to bend it until it broke all over her face including going into her right eye. She started screaming something scary. Of course, my first thought was that Jada was having a seizure and she was frightened but out she came running with a yellow face. I immediately put her head back in the tub and started rinsing her eye. I called poison control and followed their instructions. But I was freaked out. All I kept thinking was I wish I had someone here with me. Someone to lean on. Someone to calm me down and tell me that my child would be blind. Yeah, like I said, I was freaking. Someone to stay with Jada in case a trip to the emergency room was needed at that late hour. To sum up the rest of this incident, a trip to the emergency room was needed the next morning as directed by poison control. The doctor said Erin has a burned cornea. The rest of Saturday was painful for her but today was much better. We follow up tomorrow with an eye doctor.

Then there was today. A birthday party that Erin was invited to. What am I supposed to do with Jada? Lock her in the closet? I've heard that's against the law. So I have to tow Jada along to crash a birthday party. I hated doing that since the family pays per child. I offered to pay for her but they insisted that I didn't need to. I still feel guilty about it.

Like I said, majority of the time, I don't mind being a single parent. I enjoy it. Well at least until trips to the emergency room leave me freaking out with two kids in tow.

She's Struggling

For the life of me I can't sleep. Even after taking my anxiety medication, still no shut eye for me. Guess I am just overflowing with worry.

Today, I handed in a letter to Jada's school requesting that she be evaluated for special education. I had the letter written for about a month now but after our last school meeting, I was very optimistic and thought things would go smoother than they have been.

Last grading period, Jada was on honor roll, even in conduct. This grading period is a whole other situation. Right now, she has two As (Conduct and Strings) and the rest are Cs and Ds. I am so distraught about it. I know Jada wants honor roll. She was crushed last year when she didn't receive a trophy at year end so I know that it means something to her. I know she is doing her best. But she is struggling. I hate that she has to struggle.

One issue is that often times, Jada doesn't write down her full assignments for homework or she forgets something that she needed to complete her work. I mean, how can you study for a test without the material to study? Lack of organizational skills is very common among children with ADHD. I have talked to her teacher several times about checking to be sure everything was written and that she had all her materials but it doesn't always happen. So when it happened again yesterday, I emailed her teacher (who is usually very accommodating) about Jada not having her notebook to study. The response was pretty much too bad. I say it that way but she didn't. She is a good teacher and person. And of all the third grade teachers there, I am thankful that Jada is in her class.

Another issue is....well I don't know why the sudden drastic changes in her grades. I asked her teacher for her opinion and she didn't exactly give me one. So I shall have to investigate.

Another mom of a special needs child suggested that maybe it has to due with the student teacher. Valid point. Maybe the student teacher is teaching more this grading period and the change has thrown Jada off. I hope it is something simple like that. I am going to see about that.

Truth is. It could be anything...any small detail from an outside source or something within her.

So why special education? She does have a 504 in place. With an IEP, she will have access to so many more resources and possible accommodations.

She is a bright girl. She is struggling. And I am at a loss on how to fix it.

I hate the realization that she will have struggles forever, whether diabetes or mood related. It just stinks.

Unfair

Who decided that things would be so unfair?

I don't usually sit in a bathe of self pity over unfairness but I am these last few days.

I have a special needs child and as such, I have limitations. I can only work during certain hours of the day because there is no one to care for my child outside of school hours. I take care of my child so I don't go out to meet other people or have any resemblance of a social life. I take responsibilities for my actions and where does that get me? Penniless. Lonely. Responsible.

I can't afford to make ends meet. I can't afford rent much less Christmas. And you say you'll help. Oh but wait. It becomes oh you're sorry. You can't. You work. You can work whatever hours you want because you don't have limits. And and you can go out or do whatever, whenever because again, you don't have limits. You don't take care of your responsibilities. But you can have a relationship. You can go walk the mall and buy brand new shoes while I am digging through clothes bins at church for myself.

So yeah. Who the hell decided things would be so effing unfair? Why am I the one is so much need when I am the one being responsible? Why can't I get ahead or even break even?

Why is it so easy for some people to cheat the system but so hard for me to get assistance for basic needs? Why did I get more when I had more and get less now that I have less?

I just have no idea.

Comments from this week

Some things people have said over this past week have driven me absolutely up the wall.

We all get our share of stupid comments related to diabetes. We all get the questions that we give people the benefit of the doubt for not knowing any better. While volunteering this week at the school book fair, I had lunch with the girls on two separate days. On Friday, I ate with Jada. It happened to be a day where a dad was eating with his daughter and they were kind of across the table from us. His daughter mentioned something about Jada needing to go to the office and his dad asked her why. Her answer was that Jada had to go to the nurse because she has diabetes. Insert stupid commentary from the dad about how his so-and-so had diabetes really bad and blah blah blah. I wanted to jump across the table and smack him. I mean what do you do when you are at a table of third graders and all you want to say to another parent is “Dude, shut the hell up. Would you think about what is coming out of your mouth? Would you want someone saying the worst that could happen to your kid?”

Maybe calling the comments stupid is unfair. The comments are not thought out. They are just thoughts sent out into the world without being filtered or questioned whether or not they should be said.

Erin had a substitute on Thursday. Her idea of reminding the kids to study for their Spelling test was to tell them that in fourth grade they take ILeap testing and if they fail it they have to back to Pre-K. Seriously? I am thankful that Erin will believe me easily when I tell her that something isn’t true but other kids not so much.

Then one of the school nurses (of all people) told Jada that high blood sugar causes the veins in your eyes to pop out. Really? You are going to tell an eight year old a random, possible complication because her bg was in the 250s? Jada asked me about it. I had to explain to her the truth of what could happen after many, many years of unmanaged diabetes. She wasn’t quite sure about my answer so the next day, she asked another of the nurses the same question. She’s good now. And I did call the Nursing Supervisor about it. No Nurse should be telling her anything like that. It’s my job as her parent to fill her in. She’s only eight.

Why isn’t is as simple as we tell our kids what we think they need to know about diabetes when they need to know it? Why do people say things like the above without even thinking about it.

Maybe I should make a card that says “Please stop talking now. Think about what you are saying to a CHILD who has to live with this disease forever or until a cure is found. Would you want me telling your child about the possibilities of horrible car accidents that could happen to them? Didn’t think so. So why tell my child horror stories?” Or something like that to just hand over when someone speaks without thinking. Of course, at lunch that day, I wouldn’t have had them with me.

Think before you speak people!

Lost. Journey. Destination.

There have been a lot of changes in my world lately. But the big focus for me is that I am once again out of work.

I’m twenty-eight years old and I have no clue as to what I want to do with the rest of my life.

My psychiatrist tells me this is a great time for me to follow my dreams and go after what I am passionate about. So I’ve been thinking about that a lot. But I realized, I never grew up with a dream of being something in particular. I was raised to think that you finish high school, graduate from college, then get married. High school, check. College, not so check. Marriage, laugh out loud. Kids, check and check. So in many ways, I feel like a failure for not following the path expected.

I just knew college was expected but I never really thought about what job I ever wanted to have. Never really thought of how I wanted to spend my life. And I still don’t.

I’m not really passionate about anything. Even when the depression isn’t at the point it is now, there’s no passion. So I really just have options.

Option 1: Go back to college. Big question…. For what?

Option 2: Go back to work. Big issue…..flexibility. I am unable to get afterschool care for Jada because no one in the area wants to responsibility of taking care of type 1. Then there’s doctor visit after doctor visit. She has four at the moment. And what about days when school is closed? No one to watch her then either.

I asked myself what it is I want my girls to say about me when they are older. My dearest friend (who’s 50ish)’s mom was a single mother with two kids. She had no help from their father or assistance from the government and she made it. I consider my friend to have turned out quite well. She had/has similar issues to Jada minus diabetes and her brother was a bigger handful than she was. But her mom survived it. They all made it. We talk about it often and she has no clue as to how her mom did it. Her mom worked as a waitress while going to school. I wish I could talk to her mom today. Point being. She knows her mom did what needed to be done to take care of them and speaks very highly of her. So going through this now, what is it that I want Jada and Erin to remember about me one day?

At this point, I am very lost. I have no clue as to where I am headed or even know how to get there. But I guess you can’t know the directions until you know the destination.

Before and After

August 18 marked Jada's third diabetes diagnoses anniversary. In the weeks prior to her diagnoses, we went to the circus with a friend of hers. That night at the circus was filled with about a zillion trips to the bathroom. I think we spent more time watching toilets flush than watching animals do tricks. But that's before I knew. About a week later, we received a picture of Jada and her friend enjoying treats. After her diagnoses, I realized just how sickly Jada looked at the time. That picture was misplaced while getting our house ready to sell. But while sorting through pictures a few days ago for Erin's school project, I found pictures reminding me of just how sickly she looked. And I still had no clue that anything was wrong.

Here is Jada a month and a half before her diagnoses:

Here is Jada days before her diagnoses:

See the difference?

And I am happy to say that this is my precious little one now, three years later:

This was Jada as I left her at Diabetes camp this past summer.

To read about our diagnose chick here.