Tuesday, October 28, 2008


I'm angry at diabetes right now. I'm so angry at this stupid disease that makes my child say,"Mom, I hate diabetes. I just want to be normal like everyone else."

I'm angry at the A1C machine that flashed a 7.8 up on the screen at Riley's appointment yesterday.

I'm angry at my cell phone when it rings and the word "Teacher" appears on the screen. That is never a good thing.

I'm angry that when she called it was to tell me that Riley's sugar was 404.

I'm angry that I never get a night of uninterrupted sleep.

I'm angry that Riley's assistant teacher didn't call me last week when they had a birthday party. Instead of letting him have a cupcake(his sugar was 108). She packed it in his book bag for later. He sat and watched everyone else in class eat their cupcake.

I'm angry that my child has to be singled out for anything.

I'm angry that I don't have diabetes instead of Riley.

I'm angry at trying so hard to get it right only to see numbers of 200 and 300.

Mostly, I'm angry with myself for letting any of this make me angry.

Most days I'm fine. Most days I go with the flow. But, today, I'm angry. I don't want to be angry. But, diabetes has a way of making me feel things I don't want to feel.

Friday, October 17, 2008

What Do You Think?

I need a little help please. Riley has a doctor’s appointment in another week and I’m going to run this by his endo too. In the meantime I want to hear what you guys think.

Since Riley was diagnosed his eating pattern has pretty much been breakfast, snack, lunch, snack, supper, snack. Since school started the morning snack has been eliminated. He eats breakfast around 7:00 then lunch at 11:00. He has snack at around 2:15.

I rearranged basals to accommodate for the new schedule. At first he was low at lunch and high at snack. I did a little more rearranging and had better results for the lunch. Now, he is almost always in range at lunch. But, for snack he is usually in the upper 200s or lower to mid 300s.

I have increased his insulin as much as I’m comfortable doing. I’ve increased his lunch carb coverage a bit. Still, he has these stubborn highs. He’s had a few days where things are pretty good at snack, but most days he’s high.

He has recess in between lunch and snack. You’d think, if anything, he’d go low instead of high after activity. I don’t think he’s going low and rebounding because when he does that the resulting high usually lasts a while and takes several doses of insulin before it comes down. These highs come down just fine with insulin. By supper he’s normally back in range.

His teacher called me on Tuesday to let me know how great his sugars had been: 120 at lunch and 87 at snack. She was thrilled and so was I. Riley was out of school Monday. Holden had him eat on his usual schedule and his sugars were just fine. In addition, he got out ½ a day on Friday. His lunchtime sugar was great as was his snack time sugar.

It seems that when he is not in school his snack time sugar is just fine. So, what is it about school that’s causing the rise in his sugar? It is not what he eats at school. Riley is allowed to eat from the cafeteria 2 days a week. The other days he takes his lunch. The highs occur whether he eats a lunch from home or not. Also, when he eats at school but gets out early (early release is at 11:40) his sugar is fine at 2:15.

Any ideas as to what is going on? His teacher called me on Wednesday. His snack time sugar was 345. He had PE prior to snack and she said they had run around the football field several times so she was afraid that he would go low. Instead he was high. She also said that the day before when he his sugar was good at snack that they had not been outside to play at all.

I’m at a loss as to what to do next. Do I keep increasing his basal from 11-2? Right now it is at 0.400 units per hour. That’s the highest basal he’s ever had. On the weekends when he’s not in school his basal at the same time is 0.275 units per hour.

I’ve told his teacher to start having him check his sugar before and after recess to see if that tells me anything. Do you guys have any other advice?

Monday, October 06, 2008

Three Years Chained

Three years ago today was the worst day of my entire life.

In some ways it seems like it was so long ago. I don’t remember what it feels like to sleep an entire night through. I don’t remember what it is like to let Riley eat without counting carbs. I don’t remember what it’s like not to leave the house without a bag of supplies. I don’t remember watching him run around without worrying that his sugar will drop. It seems like he’s had diabetes for forever.

At least it seems that way most of the time. I just go on with the day to day of living most of the time. Diabetes has intermingled itself into the fabric of out lives. I’ve gotten so used to it being around that most of the time it seems like it’s barely there.

But, as Riley’s anniversary has approach it’s been on my mind more. The winces he makes when I prick his finger are more noticeable. The black marks on his fingertips stand out more. His supply bag seems a little heavier. The insulin in the refrigerator door seems out of place. The tubing sticking out of his waistband is a painful reminder of what he faces every day.

I can’t help but wonder what life would be like if he had never been diagnosed. There is no way to know if diabetes has shaped his personality. And, if it has, has it shaped it for the better or the worse?

Would my family be happier if Riley had never been diagnosed? Or are we happier because we are more thankful for the little things? Would we go more places and do more things? Or are we more determined to do things now than we would have been had he never been diagnosed? Would I be stronger if diabetes had never entered our lives? Would I be weaker?

I’ll never really know the answer to these questions.

What I do know is that I wouldn’t change one thing about my little man. Whether diabetes has shaped his personality or not, I wouldn’t change a thing about him. He’s wonderful and unique. He’s understanding (most of the time) and has a really good heart.

I also know that my family is a happy one. We’ve had our share of ups and downs. And, while my stress level is particularly high right now, I can say I am truly happy. I have two wonderful kids and a husband who loves me unconditionally. Everything else is just icing on the cake.

I feel like we pretty much go and do what we want (or whatever money constraints will allow). I’m not sure if diabetes has made us more active, but it certainly hasn’t slowed us down.

The last question is the kicker. Am I stronger because of diabetes? I know a lot of times I don’t feel strong at all. Sometimes diabetes tries to make me feel weak. Sometimes it succeeds.

Three years ago I cried on a daily basis, not just once, but several times a day. I would lock myself in the bathroom and sob. I would go in to check on Riley before going to bed and while looking at his sweet, sleeping, innocent face I would burst into tears all over again. I can’t even begin to tell you how many nights I cried myself to sleep with my head on Michael’s chest.

It brings tears to my eyes thinking about it. I know he was suffering then too. I was so wrapped up in my own grief that I didn’t really think about what he must be going through. Not only had his son been diagnosed with a chronic disease, his wife had pretty much gone off the deep end.

I know I felt weak then. I remember thinking back then that I had always thought that I was a pretty strong person. Diabetes had shown me how weak I really was. I remember thinking how disappointed I was in myself. I thought I should just be able to snap out of it and move on. I knew I had to be strong for Riley and the rest of my family, but I didn’t know how.

So, I don’t really know how to answer the last question. I don’t know if it even needs an answer. I am who I am. If diabetes had something to do with that, so be it.

Today, I’m just glad we’ve made it to where we are. I am so thankful that three years after the worst day of my life my son is still here. I’m thankful for both of my kids and the rest of my family.

I remember when Riley was first diagnosed I would read posts from other parents talking about how they had “celebrated” their child’s anniversary. I just couldn’t understand how they could commemorate something so terrible. I was convinced than when that day came I would spend my time underneath the bed covers.

The first anniversary was the toughest. But, when it rolled around I realized that I couldn’t sit around and mope. His first anniversary we took him out to a movie. It wasn’t really to celebrate, but more to recognize the day in some way. My heart wasn’t in it, but I was at least going through the motions.

On last year’s anniversary I held Walk of Hope to raise money for a cure. That night we took Riley to a local county fair where he had a blast. I felt that since October 6th was such a significant day that it should be commemorated in some way.

This year we’re going to go do whatever Riley wants to do. This is the first year that I understand why you recognize the anniversary at all.

Tonight I will celebrate. Not because he was diagnosed, but because, three years later he’s happy and healthy. I will celebrate that diabetes hasn’t defeated us. And, I will celebrate that if it has shaped us in any way, it didn’t do such a bad job.

Friday, October 03, 2008

Rico Suave

A couple of days ago I went to pick Riley up at school. No one was home to watch him and Holden had stayed after school for Spirit Club. So, Riley stayed after with Holden and when I got off of work I went and picked him up.

He walked up to me with his book bag in his hand grinning from ear to ear.

"I've got something to show you, Mama."

"Is it something good or is it something bad?"

"It's good, really, really good. No one else in my class has ever gotten this before."

That got me curious. What could it be? He brings home A+ work all the time so I knew it couldn't be that. What could his teacher have given him that no one else in his class had ever gotten?

We only live about 2 minutes from school so I told him I'd look at it when I got home.

We got in the car and he said, "Don't leave yet. I want to show you what I got."

"Can't it wait until we get home?"

"No, I want to show you now."

He unzipped the little pocket on the front of his book bag and pulled out a small slip of paper.

"Oh, this is so good", he said with an evil little grin.

He handed me a slip of paper. On it, in pencil, was a phone number.

"It's E's phone number, Mom. She gave me her phone number!" His eyes were shining.

My six year old got a little girl's digits. E is in Riley's class. She's a cute little girl with long, blond, curly hair. Yeah, he's definitely male.

He's always had a little crush on her and from speaking with E's mom I found out last year that the feeling was mutual, but I never told Riley about it.

But, now, instead of "like" he was using more mature words.

"I'm in love with E and she's in love with me."

I couldn't decide whether to laugh or cry.

"I'm going to call her tonight."

"I don't think so." Call me old fashion but I find it a little inappropriate for six years olds to be calling each other because they are "in love".

I thought that was the end of it.

Every night right before he goes to bed Riley calls my mom and tells her goodnight. He went into his room to call her like he does every night. A little while later I went in to check on him He was just hanging up the phone. I didn't think anything of it.

That is until the phone rang. Michael answered.

"No. I haven't called anyone. "

"Well, maybe my son was playing with the phone, but we didn't call your number. Sorry."

I took the phone from him and checked the caller ID. It was from E's number. My little boy had worked up the nerve to call a girl and when her mom answered he hung up.

Of course, he got in trouble because he had done something that I had specifically told him not to do. We had a conversation about it. And, I let him in on a little secret. I told him that most people have caller ID and that when you call them they know that it's you they called. He told me he didn't know that (obviously).

I put him to bed. When I walked in the living room I couldn't help but smile at Michael. I couldn't believe that Riley had actually worked up the nerve to call her. If he's starting this at six, what am I going to do when he's 13?

When he got home from school yesterday I asked him if he got anymore phone numbers that day.

"No. I gave E's number to B. "

"Why did you do that?"

"Because I don't need all that stress, Mom."

I went in the other room and laughed and laughed. Ah, he's learning at a very early age.

Wednesday, October 01, 2008

I Need a Bigger Bag

When I last wrote Riley had been to the ER because he was having trouble breathing. He got better for a few days and then one Friday as I was pulling into the parking lot at work Holden called and said that Riley was wheezing. I ran in the office, told them I wouldn’t be at work the rest of the day, and drove home. I could hear him wheezing a little, but he wasn’t really having a lot of trouble breathing.

I gave him his rescue inhaler and called the doctor. They wanted to see him. Once there they didn’t hear any wheezing and once again chalked it up to “just one of those things”.

That was almost 2 weeks ago. He hasn’t had any problems breathing since then. Still, I send his inhaler to school every day. I pack it in with his diabetes supplies everywhere we go. I worry that we may one day have to use it again.

I'll just add it to the bag.

I’m starting to get into a groove at my new job. In an earlier post I wrote about a student at my school with diabetes whose mom attended school with her every day. Since then I’ve worked with the mom and the teachers so that the mom was comfortable enough going home. Now, the student comes to my office to receive her insulin. This mom has attended school with her daughter for the last 5 years. I can only imagine how freeing it is for her to be able to go home every day instead of being stuck in a classroom.

Still, I often feel like I’m pulled in too many different directions. I’m so new to being a school nurse that I’m afraid I’m missing something important. Sometimes I’ll have 3 or 4 kids in my office at one time and I’m overwhelmed with how to handle it all.

I'll just add it to the bag.

My dad has started chemo and radiation for his throat cancer. The radiation is giving him a sore throat. The chemo is making him sick. My parents are driving back and forth to radiation every day (2 ½ hours in the car). I can tell it’s starting to wear on them. I worry about them both.

I'll just add it to the bag.

Holden sent in his first college application last night. We’re looking into touring a few college campuses. He’s taking the SAT again on Saturday. I’m excited for him as he starts to test the waters. But, sometimes I’ll steal a glance at him while he’s sitting and watching TV and I want to burst into tears. I can’t believe that next year at this time my baby will be away at college. I can’t even fathom how much I will miss him.

I'll just add it to the bag.

I think I need a bigger bag.