Because I Have To

It was 4:30 in the morning. I heard a voice coming from the other room.

“Daddy?”

I nudged Michael to wake him and told him Riley had just called him. He immediately got up and went to see what he wanted.

Upon entering his room, Michael hears, “Daddy, will you check my sugar?” When Michael told me this, I sat up in bed. This can’t be good.

A few seconds later, I heard the Freestyle Flash beep and Michael called out, “It’s 55.”

Michael went to get some fruit snacks and some peanut butter crackers. Before, I could move I heard Riley’s voice again.

“Mommy, will you come hold me?”

I got up and sat on the foot of his bed and he crawled into my lap. About that time Michael came in with the snacks.

He sat there and slowly chewed the fruit snacks and then 2 peanut butter crackers. I noticed he was shaking. When he was done eating, I held him like a baby and wrapped the blanket around him. He lay there shivering with his eyes closed. I began to rock him back and forth.

I looked up and caught a glimpse of us in his TV. Me sitting there rocking back and forth with my sweet boy in my arms waiting for the sugar to take hold and start to work.

And, the sadness I’ve been keeping at bay for the last couple of months reached up and slapped me in the face.

I just stared at the two of us and wondered how in the world we got to this point and if it would ever end. Really, one of my first thoughts was, “Is there really ever going to be a cure?”

Riley’s sugar went up to an acceptable number and I lay back down in bed. But, it was a while before I was able to sleep again.

And, all day today, the image of us in the TV keeps popping in my head. My emotions have been a mixture of sadness and anger.

I’ve been so busy the last couple of months. Today I realized that it hasn’t been by accident. When I’m busy, when there’s always something going on, I don’t have time to dwell on his diabetes.

Don’t get me wrong; it gets plenty of my attention. But, I don’t dwell on it. I test, correct, and treat lows now without really batting an eye. Then, I move on to whatever task is at hand.

Today I realized what’s really going on. And, it’s one reason I was having trouble writing any posts.

I can be a little stubborn. OK, that’s not entirely true…I think Michael actually compared me to a bull one time (or 20, but who’s counting?). It’s one trait that Riley got from me. God help him.

Over the last couple of months if diabetes started to get to me, I’d push it aside. I didn’t want to think about it. I didn’t want to bring up all those emotions. Like I said, I did what had to be done, but I didn’t think about the emotions that come along with it.

I’m stubborn enough that if a bad thought started to enter my mind, I’d run it off.

I think that’s why I haven’t written a true diabetes post in a while. I didn’t want to dredge up all that emotion. I didn’t want to deal with it.

There was the time, when his sugar was 34 and after I gave him a whole pack of fruit snacks, he kept crying and begging for more. I’ll never forget that look on his face, the look of helplessness he had. He just kept pleading with me to give him some more. But, I knew if I did that what the end result would be. I knew he felt horrible. I knew the fruit snacks would begin to work, but Riley didn’t. He looked scared. He was looking to me for help, and all I could do was try to assure him he’d feel better in a few minutes.

At the time, I pushed it aside. He lay on the bed and I stroked his hair until he felt better. But, I never really felt the situation. I just lived through it.

Or there’s the time a few days ago when I changed his needle and when I gave him his bolus, he began to cry. With tears streaming down his face he said, “My needle burns.” I hugged him until he felt better. But, once again, I didn’t give it much thought.

Or there’s the times when he mentions a cure. Or when his eyes light up when another boy with D walks in the room. Or the times when he’s in the 300s and he’s hungry and upset.

I push my emotions aside because I have to. I tell him he can’t have any more fruit snacks, because I have to. When his needle burns I pat him on the back and tell him everything will be OK in a little while because I have to. I tell him that I hope one day there will be a cure because I have to. I pretend not to notice that he loves to be around other people with D because I have to.

Every once in a while, I have a day like this because I have to.

I had to pull off on the side of the road today. The tears in my eyes were making it hard for me to see where I was going. All the emotions I had kept inside came pouring out.

The unfairness of it all; the heartbreak I have for my child. The anger I have that this disease decided to take up residence in his body and the fact that there’s not a damn thing I can do about it.

But, I know that tomorrow, I'll go back to the way things were. I'll test his sugar, I'll count carbs, and I'll bolus, all without giving it a second thought.

Because I have to. I just have to.

Mean People Suck

I said a few days ago that I haven't felt like posting anything recently. But, some events over the past few days have really bothered me and so I was inspired to post something once again.

First, I want to preface that sometimes I say "you" in this post, but I don't really mean, you the reader. I think most of you are very nice people. Also, if I'm talking about you specifically you'll know, because I'll mention you by name (or the only way I know to identify you)

As most of you know, who read my blog regularly, I love basketball. This time of year A LOT of my time is spent watching basketball. Michael is the assistant coach of both the JV and Varsity basketballs teams at Holden's school. I am the stat keeper for both teams.

We played a team in our conference Friday night. We had played them once before this year and had won. It was an upset for them. They were supposed to kill us.

There is one boy on the Varsity team that is a really great player. J averages about 20-25 points a game. Sometimes when teens (and sadly, adults) are that good at something, they are cocky and usually not very nice to others on the court. J is not that way. He just loves basketball and goes out to play to the best of his ability.

When they announced the starting lineup for our team, the opposing team's crowd booed J. They didn't boo everyone, just him. First, that got to me. But, then it got worse.

They started the game, and every time J touched the basketball the crowd started to boo, loudly. Whenever he threw the ball to someone else the booing stopped. I was so mad I was about to cry.

What is wrong with people? He's just a high school kid. Why do you want to be mean to anyone, especially someone you don't even know?

My personal opinion is that most people are so self-absorbed that they don't really ever think about other people's feelings. They don't really care if it hurts anyone else as long as it makes them feel better.

And, that's another thing, why does it make you feel better? Do you really need to pick on a high school kid to make yourself feel good? If so, there is something really wrong with you.

Eventually, the crowd stopped booing. But, then our own parents started up. They were sitting right behind our player's bench. Most of the time that J touched the ball, one of them would start yelling at him to dish it off and stop trying to do everything himself.

First off, why in the world do you want to harass a player on your own team? Secondly, he's really about the only one on the team who can play decently.

If he was a ball hog I could see why they might do it. Not that it would make it OK, but I could better understand their motivation. But, he's not. He not only scored 26 of the 52 points scored by the team, he also had triple the amount of assists of anyone else on the team. That meant he dished the ball off plenty and others scored because of it. There was one game where he had over 20 points and he had 9 assists.

The only motivation I can think of is jealousy. They were jealous that their kid wasn't scoring most of the points. They need to stop comparing their kids to J. They need to focus on the good attributes that their kids have and quite comparing them to someone else.

What makes people act that way? When are people going to learn that it's not about them and their feelings all the time? If people would stop comparing themselves (or their kids) with others life would be much simpler. I just don't understand why you can't be yourself and let others be themselves. Even if you don't agree with the way other people live their lives, why do you feel the need to condemn them and belittle them? Why do you care? As long as society is not suffering because of the actions of these people, keep your mouth shut.

This brings me to the second part of my post. Like I said, the first incidence happened on Friday. I never really thought to post about it, because I didn't really think any of you would care.

But, I read this post today and my anger flared once again. Not because of the post itself, but because of a comment made to this post.

This is not the first comment this person has left, but it was kind of the straw that broke the camel's back for me.

First, let me address the anonymous issue. If you are so sure that Allison is such a horrible person then why are you so afraid to let anyone know who you are? If you're going to be mean to people, you should at least own your meanness.

Secondly, not to sound cliche, but if you don't have anything nice to say then....don't say anything at all. I don't expect you to like everyone, but if you don't, why can't you just keep it to yourself? Why must you try to hurt people's feelings? It's just mean.

Maybe you're saying I shouldn't get involved. It's really none of my business. But, that's another problem these days. Unless something directly effects them people just don't want to get involved. I know Allison doesn't need my help. I think she's done a fine job responding to Mr. or Mrs. Anon all by herself.

Anonymous, if you're reading this, back off. She's just trying to make her way through this world like everyone else. Try focusing on what you can do to make yourself a better person and quite critiquing everyone else.

Hi

Dear Reader,

I’m still around and still reading all of my usual blogs. I haven’t really had time to sit down and post lately. Nor have I had the desire, to be honest.

Things around here are pretty good. Riley spends most of his time playing Lego Starwars or playing basketball in the living room. His sugars have been doing good. I've found that I don't really think about diabetes much anymore.

Holden is still playing basketball. He’s doing well with that and his grades. He’s in the middle of midterms right now. He’ll be turning 16 in a few weeks.

I just wanted to write a little note to say “hi”. I’ve been thinking about this blog a lot lately. I’m wondering if maybe it’s served its purpose. I don’t know. We’ll see.

Take care.

Love,
Penny

Delurk please

It's delurking week. (Yes, I know the week's almost over) So, if you read this blog regularly and don't comment or you've just stopped by, or you got here by some weird google search like "shaved armpits" (yes, I'm sad to say someone found my blog by searching for that), leave me a comment. Let me know how you got here and if you like what you see. Delurk! I dare you.

And, I finally got over my stubbornness and switched to the new blogger. We'll see how that goes.

Everything's beige

Just wanted to update you to let you know that Riley is much better now. He hasn’t had any ketones since late Saturday afternoon. He hasn’t had any temperature since then either. His appetite has picked up and his sugars are starting to even out a bit. They did well yesterday until about 5 PM and then they ran high for about 5 hours or so. Then, at 1:30 this morning, he clocked in with a 51. Go figure.

Anyway, he’s better now. Thank you all for your thoughts and good wishes.

Why purple is no longer my favorite color

I'm thinking it all began around 12 AM Friday morning. Riley woke up to use the bathroom and started crying. He said his legs hurt. A quick check of his legs revealed no swelling, bruising, or anything out of the ordinary.

Michael put him back to bed, but within minutes, he was crying again that his legs hurt. Now, you have to understand, Riley hardly ever cries. If he does cry, it's usually because he's upset with his brother. He really never cries about pain. My office is in a health department. I hear kids crying all day long when they get their baby shots. Riley has NEVER cried while getting a shot. Even when he was a little baby. Pain just doesn't seem to affect him the way it does others. So, when he wouldn't stop crying that his legs hurt, I knew something was wrong. I just didn't know what.

I told him to come into our room, and he was limping. I let him crawl into bed with us (which I don't normally do) until he fell asleep. After he'd been asleep for a while, Michael picked him up and put him back into his bed. In a few minutes, he was crying again. This time I got up and gave him some Motrin and lay in his bed with him for a while. He slept the rest of the night without incidence. His sugars ran around the usual during the night. Nothing out of the ordinary. But, at 6:30, it was 102 and at 8:15, it was 149. That should have been my first clue.

I don't work on Fridays, so I was home with him that morning. He woke up and started playing his xbox. He said his legs were better, but his lower back was hurting. Hmmm, strange.

I fixed his breakfast and instead of scarfing it down like he usually does, he just sat there and stared at it. Then, he started to shake and asked for a blanket. When I went to wrap him in it, I brushed against his forehead. He was burning up.

I checked his temperature and it was 102.2. I started to feel panic rising up into my throat. My first thought is that he has a UTI, thus the back pain. Also, he'd had a cough that had been coming and going over the past week. Could it be pneumonia? Now, I really started to panic. I got my stethoscope and listened to his lungs. They sounded fine, so I didn't think that was the problem.

He started begging me not to make him go to the Dr. But, within minutes I was on the phone with his pediatrician's office. I made an appointment for an hour and 45 minutes later. We live an hour away from his ped., so it was a mad rush trying to get ready and get there on time.

Riley slept almost the whole way there. We didn't wait long once there. I made sure to stress with the Dr. about how he never cries and how he cried about his legs. Being a nurse, what I was thinking could be wrong was not pleasant and I was trying to force the panic down that was about to bubble out.

First, he said he was going to get Riley to pee in a cup. (which is exactly what I wanted done) Then, he decided to forgo that and do a CBC (complete blood count), which I was even happier with, since a normal result would dispel the fear I had creeping up inside me.

Before he did any of that, he listened to his lungs and looked into his throat. All which checked out just fine. But, then he looked into his left ear and asked Riley, "Does your ear hurt, bud?" To which Riley said no. "Well, you have a pretty bad ear infection there." I sort of let out a sigh of relief. Now, we knew the problem. He said his right ear was pink also.

They did the CBC, just to be sure, and everything came back fine. The achy legs and back probably just came from the increased temp. On the way out the door, the Dr. asked if Riley was allergic to anything. (We go to a very large peds. office with about 10 doctors in it) I replied with, "I don't know. Other that insulin he's never taken anything prescription." I could tell by the look on his face, he didn't even know he had D. "You mean he's almost 5 years old and has never had to take an antibiotic before?" Yep, never. Holden was a whole different story. He kept an ear infection when he was younger. Kind of ironic that my child who depends on medicine to keep him alive is otherwise as healthy as a horse. (Exactly where does that phrase come from? Don't horses get sick?)

I left the office with a prescription for Amoxicillin. By this time, Riley was hungry. We went to McDonalds (his choice, not mine) and while there I took him into the bathroom to check ketones. Even though his sugars hadn't been out of control, I thought I'd check to be on the safe side.

As soon as the urine hit the stick it turned a deep shade of purple. The panic started to rise again. We'd never had ketones like that before. I immediately called Dr. M's cell phone and left a message letting her know what was going on. She called back within about 2 minutes to reassure me and started her speech about what to do.

One of the first things she said was, "Don't trust the pump." She told me to keep his basal the same, but to give all of his boluses by syringe. Since he was spilling ketones it was very important that he get the insulin he needs. The only way to be sure that he was getting his insulin was by syringe. It made sense to me, but I didn't like it. I hadn't given Riley an injection since he started on the pump in March. When I told Riley about it, he didn't like the idea either. But, since then, he's been getting most boluses by syringe.

Even though I know he's getting his insulin, his sugars are still pretty much through the roof. His lowest sugar since all this started was 124, but that didn't last long. His next sugar was 220, then 349. His highest sugar has been 483. The average of all his sugars yesterday was 247. Yuck,not a good number. Thankfully, he doesn't seem to feel too bad. He did sleep more yesterday than usual, but for the most part, he seems to feel OK.

I started following Dr. M's instructions and by 5:30 last night, his ketones were negative. When he went to bed last night they were still negative. But, this morning the stick turned that darn purple color again.

To top it off, he was due for a set change this morning. This complicates things. You see, Riley ALWAYS goes low after a set change. To remedy this I have learned to decrease his basal 60% for 3 hours after his set changes. This helps immensely. He still might run on the low side, but it tends to keep those nasty 40s and 50s out of the picture.

He was 315 at his set change. I decided not to decrease his basal and see what happens. I don't want him to go too low. Dr. M stressed the importance of him having "plenty of sugar" to go into his cells and "plenty of insulin" to get the sugar into the cells.

His temperature is doing a little better. I was alternating Tylenol and Motrin about every 3 hours before to keep his temp at bay. Thus, helping to keep him from getting dehydrated and making his ketones even worse. (I'm thinking that's what brought the ketones back during the night. It's really hard to make a four year old wake up and drink an adequate amount of water in the middle of the night.) But, now we're down to having to take something about every 6 hours.

I'm hoping we're on the road to recovery and I'm hoping not to see that stupid purple color any more.

The trip, a late Christmas present, and a sweet ride

We are back from our trip. We had a great time. As I've mentioned before, Michael and I are the youth leaders at our church. We took the youth (12 total) to Gatlinburg, TN to an Xtreme Youth Conference. It started Thursday night and ended at noon on Saturday. We got to see some great speakers and bands. The bands included: Rachael Lampa, Jeremy Camp, Newsong, Hawk Nelson, and Third Day. The speakers were Tony Nolan, Josh McDowell, Ergun Caner, and Johnny Hunt. My favorite band/singer was Jeremy Camp, but Third Day put on a great show too. My favorite speaker was Josh McDowell. We heard him speak twice at this conference and we had heard him speak at a youth conference before. He is just a phenomenal speaker. Ergun Caner also held my attention and even received a standing ovation after his talk.

Anyway, we had a safe trip there and back. It was about a 10-hour drive each way. Surprisingly, Riley's sugars were pretty good. The long time in the car didn't seem to affect his sugars much. The only time I used the temp. basal was about 6 hours into our trip home. He started to run a little high. But, the temp basal (an increase of 10%) seemed to take care of the problem.

We brought in the New Year at church. It was nice. We got home around 2 AM and we were able to sleep until about 10:30. I couldn't begin to tell you when I last slept that late. Riley's sugars did just fine sleeping in. Have I ever mentioned how much I love the pump?

Speaking of the pump. Remember when we were having some pump issues? Well, the Saturday before Christmas at around lunchtime, Michael tried to give Riley a bolus and his pump alarmed yet again. It was the same alarm as before. Of course, Animas was closed, but I left a message and someone called back within about 5 minutes. As soon as she came on the phone she confirmed that it was the same alarm code as before and then made sure she had the right address.

She shipped out a new pump. It arrived the day after Christmas. When Riley first got his pump, we ordered a blue one. But, when we went to the pump start, they had a silver one to play with. Riley really liked the silver one. The lady on the phone asked if Riley still wanted a blue pump. I went and asked Riley and he said he wanted silver.

He now has a silver pump. Just yesterday, he looked at me and said, "Mama, I like my new silver pump."

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I got this idea from Kerri's blog. You are supposed to take each month and write the first sentence of "a definitive post" for that month.

Here it goes:

January: It's hard to remember when the waves weren't crashing around me.

February: The pump arrived at 9:50 this morning.

March: I knew that adjusting to the pump would be hard, but I had no idea how hard.

April: Six months ago today at this time, Riley was sitting in the floor watching TV and eating a frosted strawberry poptart and drinking a big glass of apple juice.

May: What is is about "firsts" that make me crazy?

June: One of the hard things about having a young child with diabetes is that they often cannot tell when they are low.

July: Holden has had allstar games this week.

August: Michael came home from his first day back at work with some disturbing news.

September: note: I got the word "klempy" from Lyrecha.

October: Walk of Hope is coming up this Saturday.

November: I can't post about what it feels like to live with diabetes.

December: Riley had an endo. appointment today.

Looking back at those posts made me realize how far we have come in the past year. There have been many ups and downs (or highs and lows, if you will), but, man, has it been a great ride.

Here's to a year filled with twist and turns, ups and downs, and a few even spots where you just coast while the wind whips through your hair. A year filled with butterflies in your stomach, moments of pure calm, and moments when you feel like your lunch is going to come back up.

I hope your ride this year is great. And, when you get to the end, with your hair a mess and your stomach queasy , you just smile and say "I want to do that again!"