Sympathy Day

If you've read this blog, you know I don't often give pity, sympathy, or feel sorry for my son because of his disease. It's only days like today that I do. He went in for his A1C on Wednesday. He has a needle phobia and he hyperventilates each time he gets his blood drawn. Wednesday was no different. As you watch your child go through this emotional/physical pain, it hurts the heart. Well, for some reason the blood they took clotted. (I'm not sure what that means, it's never happened before)

So we had to do it again today. The following is the chat between my husband and myself describing what happened.

Mark: nathan - didnt go well btw

9:53 AM me: I'm sure not.

it never does...

he's gotten worse actually

9:54 AM he goes pale

hyperventilates

sometimes he almost passes out I think.

9:55 AM Mark: he wanted his left arm again

even though i said not to

she missed - dug around for awhile till he couldn't take it

then switched to his right arm

missed again

9:56 AM me: geesh!

Mark: dug around and finally got it

told him to lay there and recover

he didn't listen

jumped right up

he wasn't ok and i could tell

didn't put on his coats

just walked out

cut in front of some people on the way out

9:57 AM finally when we got to the truck i forced the issue and he started crying

said he didn't fell okay

9:58 AM me: physically or emotionally or both?

9:59 AM Mark:

didn't say - physically I'm guessing

10:00 AM me: Did he recover?

Mark: he did

10:01 AM drank some water and ate some food

me: It usually doesn't take too long...

Mark: was okay by time we got back to school

bs was 87

so good #

10:02 AM Mark: even i was getting a little nauseous being with him

Mark: felt so bad

me: it hurts me too when I watch him.

sometimes in pain...

sometimes it isn't pain, but emotional.

Mark: yeah

me: on Wed. it didn't really hurt.

but it's his nerves...

today, it hurt.

I really wish they wouldn't miss...

JDRF Walk

Our JDRF Walk is this weekend and I have to confess, I'm not looking that forward to it. I guess these types of events make me sad.

I feel I'm a pretty active person with JDRF, but I'm not sure for how long. First of all, I'm pretty busy. 2nd of all, I'm not sure that I like how JDRF makes me feel.

Yes. I want a cure. I'd do literally anything for a cure for my son. But I hate asking people for money. This is year 2 and I'm not sure I can ask again next year. And I hate how JDRF treats this disease like it's the worse thing in the world that could ever happen to a child.

Is it great? No, but I'm sorry, my pitty goes out to those parents with children that can never leave home. That will never be able to take care of themselves. My sympothy goes out to those children with cancer. Those kids who are truly suffering with pain.

My son isn't in pain. A couple of times a week the needle hurts when we put it in. But mostly, he's just a normal kid that has to wear a machine to keep him alive. It could be so much worse.

Anyway...I'll walk my 3 miles and I'll have fun doing it, but I just don't know if JDRF is for me.

The worst part

Maybe the worst part about my son being diabetic is waiting, watching, anticipating our next child to be diabetic.

This morning my 2nd grade son woke up and had wet the bed. Now this doesn't happen very often. In fact rarely, but it isn't unheard of either.

However, the worry is immediately there because when Nathan was in 2nd grade, that was his first symptom.

So now, when something like this happens, I don't think that he had too much water to drink before bed, I think...is it diabetes?

Parties

The hardest part about having a child who's a little bit older with diabetes is parties.

This summer Nathan went to his very first sleep over birthday party. It was a little tough for me. I want him to be a kid. I want him to be independent and not have to have me attend everything with him, but "What if?"

He just got an invite to go to a party at a swim park. Yikes! That brings on so many worries. First of all it's about 45 minutes away if there is an emergency. Second it's swimming which in itself can cause problems. Prolonged time not on his pump is another issue. Also swimming sometimes makes his entire site come out and he's not able to put a new one it. Add on to that he's not a very good swimmer.

And yet, with all of that, I will probably still send him. I have to don't I?

Start of School

As everyone seems to be preparing for the first day of school in 2 days, you can feel the excitement. Went to the store last night and the isle of school supplies looked like a tornado had passed through them.

Times like these make me sad. While everyone (including us) are preparing backpacks, crayons, markers, notebooks, pocket folders and numerous other school supplies, we have to prepare a basket of medical supplies and fill out a 4 page medical information form. We have to have the doctor fax a letter to the school giving permission for Nathan to get treatment. We have to pack glucagon and hope to God they never have to use it.

Days like today are one of those reality checks. I don't often cry, but today is an exception. Days when you realize, this sucks! When you have to write down all the things you do every day to keep your child alive, it hits home.

It's been tough this last couple of weeks. Nathan's stated a couple of times that he's ready to be done with diabetes. I hope that someday soon his wish can be true.

How God Selects the Mother of a Diabetic Child

While looking up info about the Patron Saint of Diabetics, I stumbled upon a "poem" by Erma Bombeck. It was called "How God Selects the Mother of a Diabetic Child". We often discuss that we know God chose Nathan to be diabetic for some reason. We talk about the fact that we're not sure why yet, but in time we will know the true reason why. I never really thought about God choosing me to be a mother of a diabetic, but it makes as much sense as Nathan being chosen. I didn't like some parts of her poem, so I've modified it. For a look at the unmodified version, you can go to: http://tudiabetes.com/profiles/blog/show?id=583967%3ABlogPost%3A96082

How God Selects the Mother of a Diabetic Child
by Erma Bombeck Modified a great deal by me.

Some women become mothers by accident, most by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint Matthew."

"Forrest, Marjorie, daughter, Patron Saint Cecilia."

"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a child with diabetes." The angel is curious. "Why this one, God? She's so happy."

"Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter?"

"She has the patience?" the Angel agrees.

"Once the shock wears off, she'll handle it. I watched her today. She is strong. You see, the child I am going to give her will require great care. It's not going to be easy."

"But, Lord, could this make her stop believing."

God smiles. "No. This one is perfect. She has a strong faith in me." God nods. "Yes, this is the woman whom I will bless with this child. I will be at her side every minute of every day of her life because she is doing my work."

Tears

Today attended JDRF function to kick off the walk. A lady talked about her child and I was okay until she had all the kids in the room with Type 1 stand up and then I couldn't hold the tears back. As someone so rightly put it, it brings back the emotions that you keep bottled up.

Cat in the Hat

About a month ago I got an e-mail asking if I knew anyone that would be willing to dress up as the Cat in the Hat for a Family Team Kick Off for our Walk to Cure Diabetes. I volunteered. I don't mind doing goofy things like these.

Well...I did such a good job, that I've been asked to do it again for the Team Kick Off luncheon. Of course I said yes. I told the women who desperately asked that I would do pretty much anything if there was anyway that it would help find a cure for my son. ANYTHING!

Dead Battery

Every been called at work because your son needed a new battery? Such is the life of a diabetic family using an insulin pump... Seems kind of strange to have to leave work to go change a battery....Seems like something that could wait until later...but it can't.

Now normally the school nurse would have replaced it, but for some reason they couldn't get the compartment opened. So my husband had to leave work to go and replace it.

Things like this make life seem weird. Just not really normal.

If Luke Skywalker Had Diabetes

The following blog post on dlife is the most hilarious thing I have read in a long time. Diabetes isn't really a funny disease (I'm not sure if there is a funny disease out there) but this post really brought some humor into it!


http://www.dlife.com/diabetes-blog/node/952

Worry

Last night was a worry night. When I checked Nathan's blood sugar at about 12:15 a.m. he was 53. I didn't believe it, so I tested again. This time I got a Low reading. Which meant his blood sugar was too low to read on his meter. I'm a lucky mom. Nathan woke up, drank 2 juices and his blood sugars were back to normal the rest of the night. I'm lucky because I don't have to worry too much.

Happy Anniversary

Happy 1 Year Diabetes Anniversary Nathan!

How should we celebrate? Eat cake? Doesn't seem like a logical way to celebrate.

I won't say it has changed our lives, but I wouldn't say it hasn't changed our lives.

We control the diabetes, we don't let the diabetes control us.

Why did Nathan get it?

You have to ask the question...Why me? Or in this case...Why Nathan. I'm strong in my faith in God and believe there is a reason for everything. I don't think Nathan getting diabetes was a fluke. I think it was planned by God. But, I can find good in anything. I don't think it has been 100% revealed why Nathan got diabetes, but in time, I think we'll know for sure.

Right now I think it might have been to help Nic. Nic is Nathan's friend at school that has been diabetic since he was a toddler. Sometimes I think God gave Nathan diabetes so that Nic would have someone like him. Nic was the only diabetic in the school. Now he has a "friend".

Sometimes I think that Nathan got diabetes for a future career path/choice either for him or for me. Since his diagnosis, we have started to become involved with JDRF (the Juvenile Diabetes Research Foundation). As we have the chance to get more involved, I could foresee myself and/or Nathan doing more with diabetes education/work. Or maybe Nathan will become an endrochronologist. He's smart enough.

I already know we are educating a lot of people about diabetes. We treat our diabetes a little differently than many people. Nathan tests out in the open and in front of people all of the time. Kids especially want to watch and know why. We have the "explanation" down pretty well now. It is a rewarding experience seeing kids want to know why and understanding why. It's amazing the number of people with diabetes that "have come out of the woodwork" since Nathan was diagnosed. We had no idea these people (who we've known for quite awhile) were diabetic. They kept it hidden. I thought that was what we were going to do too, but since most of his friends knew, it was just easier to make sure everyone knew.

A few weeks ago, I was teaching my father how to change Nathan's site so that this summer Nathan can spend some time at their house. The whole family (my sister, brother in law, 2 nieces, brother, my mom and my dad) all gathered around to watch. They were intrigued. They wanted to know how it worked. We were glad to show them. So my advice for anyone who has a child who needs something special in order to live, don't try to hide it. Show it to others. Educate others. As humans we seem to be attracted to car accidents, medical emergencies, rescue vehicles. We always want to know what's going on. I don't think it's much different with Nathan and his diabetes. People want to know. They want to understand. You've heard of "the fear of the unknown". Let's take out the unknown. Lets all share it and make this world a more understanding (less fearful) world to live in.

The Hard Times

This post is dedicated to the hard times we've faced in the past year.

Classroom Parties/Treats: A year ago a classroom party was a celebration...now it is a pain. Trying to figure out how to keep your child a child and have all the great things a child should have, but keeping them healthy. Honestly...the worst holiday was Valentines. I have a great kid. Many times in the last year I've had to tell Nathan to save a treat for later (until a meal time) and he has always been great about it. I am truly blessed!

Stomach Flu: A year ago when my child got the stomach flu, we did what "normal" people do. Plenty of rest, fluids, etc. Now the first thing we do is check his blood sugar, check his urine to see if he is spilling keytones and call his doctor. I would have never thought about calling a doctor for a stomach flu a year ago. Now it is routine. In the last year Nathan has had the stomach flu twice. The first time resulted in a short emergency room stay. The second we celebrated because he didn't have to go to the ER. I would have never thought of taking my kid to the ER for a stomach flu a year ago. The only other thing that sucks about the stomach flu is that I have to test him every hour. Conveniently, Nathan got sick in the middle of the night, so waking up every hour to test his blood sugar creates a sleepless night.

Low Blood Sugars: Have you ever tried to make a very sleep 8 year old wake up in the middle of the night and drink a juice. Sometimes it is a little challenging. Sometimes you have to do it more than once. Have you ever had your child tell you he feels inside out. Or that he's sweaty on the inside. Have you ever had your child tell you his blood sugar is 26 and go into panic mode because he could be point away from going unconscious?

Other than that, I honestly can't think of any more things that are terrible about my child being diabetic. We constantly say, it could be worse! If we have to have something...we'll take diabetes!

Thanks to our Supporters

Tomorrow marks the 1 year anniversary of Nathan having diabetes. Should we celebrate? Celebrating seems the wrong thing to do. How do you celebrate a disease? It definitely will be a date I will remember for the rest of my life...

To celebrate, I'd like to thank those who gave my son things this past year that he would have never had if he wasn't diabetic.

First to Medtronic. Nathan got to throw out the first pitch at a baseball game. Medtronic sponsored the even and bought diabetic families tickets to the game. Thanks Medtronic. Nathan would have never had that opportunity if he hadn't been diagnosed with diabetes.

Thanks to Woods Brothers. They purchased tickets for diabetes families to attended the spring football game. This was the first game for my 3 children. It was an exciting event.

So...even though having diabetes isn't always fun and games...some very generous people have given my child (our family) opportunities we wouldn't have had without the disease.

The First Days of School

We were lucky. Nathan had a friend, Nic, in his class that was also diabetic and had been since he was a toddler. The school already had a system for dealing with diabetic children. This was a blessing and an annoyance both. It was fantastic that I knew I didn't have to worry, but sometimes it seems we were thrown into something that wasn't ours. We had to do things Nic's way. Sometimes I feel like we aren't given choices in our son's health at school and the health tech doesn't value my decisions as much as she does Nic's mom's. It doesn't help that Nic's mom is a registered nurse, but I think mostly it is the perception that she's "been doing this longer" than I have. What I want to say is that my kid isn't Nic. Every diabetic is different. But I don't feel this way often. Most of the time I feel blessed to have our wonderful health tech Sandy.

Sandy is a gift from God! Nathan's first days back at school (Thursday and Friday) I had to go to a conference out of town (an hour away). I was a little nervous being so far out of town so soon, but Sandy e-mailed me 3 or 4 times each day and things went great.

I alway say Sandy treats my child like a mom treats her own children. Nathan has a "plan" that if you are a school nurse, I've noticed they stick to it 100%. Sandy isn't afraid of not following the plan 100%. For example, if his blood sugar is below 100 in the morning when he gets to school, he is supposed to have a snack. Now a nurse won't give him a snack if he is at 101, but Sandy will.

From day 1 the school has taken great care of my child and I've never felt nervous about sending my child to school. I'm lucky.

The Teacher Mess Up

While in the hospital with Nathan, I would run home once a day (my husband/Nathan's dad would stay at the hospital). I would check my e-mail, write my lesson plans (I'm a teacher), shower and change my clothes.

I got home on Monday and had phone calls from parents concerned about Nathan. I was a little blown away. I had called the school to let them know that Nathan would not be at school and that he had been diagnosed with diabetes. Apparently, Nathan's teacher had decided to take that information and share it with Nathan's class. The ironic thing about it was that I had talked with Nathan hours earlier that we were going to keep this information to ourselves and not share it with everyone because health is a personal matter. Now all of his friends new. They even made get well cards.

I e-mailed the teacher telling her "officially" of his diagnosis. I had only talked to the secretary at the school.

Sometime that week the school principal e-mailed me and asked whether I had given permission for the teacher to tell the whole class, and I said absolutely not. Later that week she asked to talk to me and she apologized for how the information was handled. I told her I was a little blown away, but it would be okay.

The next Monday I felt almost as if the teacher was harassing me. She had to speak to me. She wouldn't speak to my husband. She bothered me at work. Finally, I was forced to take her phone call. She apologized and then told me that she thought my e-mail was permission to tell the whole class. That was when I truly was "mad" at her because that was a lie. I went back and looked at my voice mail messages in comparison to my e-mail to her. The voice mails were on Monday. My e-mail to her was on Tuesday. She had told the class before I had e-mailed her. She lied. I don't deal with lying very well. I forgave....I just haven't forgotten.

Yes I know I could have probably taken some legal action on her, or the school system, but were not "sue happy" people. I also had to consider that this school system was also the school system in which I was employed...not the same school, but the same school system.

Hospital Stay

On our way to the emergency room I called my mom and told her the news. She was devastated (she herself is a type 2 diabetic). We spent a couple of hours in the emergency room. The worst part of the emergency room part was the IV. Nathan was so strong. He didn't even shed a tear. He squeezed my hand and said ouch about 20 times, but never a tear rolled down his cheek. The first blood sugar reading we got was 420. I often wonder what his highest blood sugar was. One of my biggest regrets was that I didn't feed him before going to the emergency room. We hadn't eaten lunch that day (big pancake breakfast). When we got to the emergency room it was close to dinner time. Nathan was starving. I wanted to feed him, but of course they wouldn't let him eat anything. By the time he got to eat the next day it had been 24 hours since he had eaten. Have you ever tried to deal with a starving kid?

After the pediatrician on call came in and talked to us, we were admitted to the hospital. Nathan was in the hospital Sunday, Monday and we were released Tuesday morning. Nathan loved the hospital. Most of it. He loved the hospital food. He loved that he got to play Nintendo all day. He got to skip school 3 days in all. It was great. He had great nurses, great doctors.

The only thing that wasn't great was blood draws. Okay...this is a message for all the lab techs out there. If you are NOT good at taking blood from children, please don't. We had a few that were good. We had a few that were terrible. The only tear Nathan shed that whole time was when some lab tech didn't hit the vein and kept digging around trying to find it. It killed me to see him in such pain. Or those techs who missed the first time and had to try again. Kids are going through enough in the hospital. The last thing they need is unneeded pain. Although maybe it was for a reason. Now Nathan's pain threshold is pretty great and everything is all relative. Compared to an IV and missed veins...nothing seems to hurt.

I remember the moment of acceptance for me. It was 5:00 in the morning on Tuesday. I was trying to make a list of foods Nathan could eat for my daycare provider using a carb book the dietitian had given me. I started with cereal. When I found that a serving of "sugared cereal" was less carbs than rice kripies, I knew everything was going to be okay. I had thought my child wouldn't be able to be a child anymore and that is what upset me the most. Knowing my kid could still eat his Lucky Charms, made the world of difference.

It wasn't long before I figured out that Nathan could eat anything in the world. We just needed to know how many carbs were in the food he was eating and then just treat him accordingly with the insulin. Really his eating hasn't changed at all. He eats the same "junk" as before diagnosis. Well...mostly the same. We look at carbs on packages a whole lot more and purchase more things lower in carbs. I do restrict him sometimes, but overall, he eats what he wants.

Diagnosis

On April 22nd 2007 my 7 year old son, Nathan was diagnosed with Type 1 diabetes. Otherwise known as juvenile diabetes. Nathan is my oldest child. We have 3 very wonderful children.

Our story starts here. The real life living with diabetes. About 3 weeks or so...maybe more...before his diagnosis, he started wetting the bed. I called on a Monday and made an appointment with his pediatrician. The first available appointment was the following Monday. I went ahead and made an appointment. As the week went on, his symptoms got worse. He was drinking constantly and going to the bathroom every 15 minutes. He also couldn't get enough to eat. He would eat more than I did. Twice as much as I did, and then 15 minutes later be starving again. As I "googled" his symptoms two things would come up. Urinary track infection or diabetes.

That Saturday we attended a wrestling pot luck and then headed to my mom's for a family gathering. On our way to my mom's (1.25 hours away) Nathan had to stop along the side of the road. He was in tears. He couldn't hold it any longer. I mentioned to my mom my suspicion that he was diabetic.

That Sunday we went to church. Attended a pancake feed with lots of maple syrup. Later that afternoon Nathan started feeling dizzy. That was when I decided I couldn't wait any longer. I took him in to an emergent care center that is open on the weekends. They took a urine sample and the doctor wanted to test his blood sugar. I asked the nurse what it was, she told me the doctor would come in and let me know in just a minute. The very nice female doctor came in and told me he was diabetic. I wasn't shocked. I wasn't surprised. I had known and the doctor could tell. She sent us to the emergency room at a local hospital.