Wednesday, May 30, 2007

The meeting

Yesterday, we had a meeting with Riley’s teacher for next year.

I just wanted to meet with her and let her know some things about Riley. Basically, I wanted to meet the woman I was going to let care for my child next year.

The meeting was more for me than her.

Everything went very well. She was very upfront and said that she had never had a child with D in her class. She was also very relieved to find out that Riley had a pump and that she would not have to give any shots.

I was impressed by the fact that since she thought Riley was on injections, she seemed willing to learn to give them.

We talked about highs and lows. We talked about the pump. I didn’t get into any specifics. We are going to meet closer to the start of school next year and go over the specifics.

She asked a lot of good questions. I made sure to let her know that as overwhelming as it may sound that it really wouldn’t take up a lot of her time.

I let her know that Holden would be getting out of class to administer Riley’s insulin in the beginning. She said that once she got comfortable with it, Holden would not need to come at all.

She assured me that she would call me if she ever had any questions and that she would probably call me several times in the beginning. I like that. I would much rather she call me for any little thing than not to call me at all. Plus, what she might consider a little thing might not be so little after all.

I also leaned what time Riley will have snack, lunch, and recess.

Also, on certain days he will go to other activities that include: computers, Spanish, art, music, PE, and library. I quickly started counting up in my head. That meant there was 6 more people I needed to speak with. I told her since they were going to be the adult with Riley I at least wanted them to be aware that he has D and what to do if he has a low while he’s in their class.

She told me that at the beginning of school she would set up a time to get all of the teachers together so that I can speak to them all at once. That makes my job a lot easier.

And, she didn’t have any problem with me hanging out around the classroom the first few days of school to make sure Riley was settling in OK. She said she’d want to do the same thing if it was her child.

And, I stressed a few times that it is very important to me that Riley not be singled out and that he participate in everything just as any other student. "What about birthday parties with cake and ice cream?" I told her that Riley can eat whatever the other kids are eating. My only rules are that he can't have regular soda or regular juice. I explained to her why. I told her I'd have special juice for Riley to use on these occasions. I also stressed that if any of the parents ask, they are not to bring something different for Riley to eat, such as sugar-free candy or sugar-free cake. I didn't explain to her that it usually has about the same amount of carbs as the stuff with sugar.

Going to speak with her helped to calm my nerves. I had stopped stressing over it so much. But, to speak with her and find out that she’s willing to learn and understands why it’s so important to learn has really helped a lot.

And, one of the last things she said before we left was that she knew Riley was our baby, but that she would treat him like her baby too. That’s exactly what I needed to hear.

I know Riley is going to be OK. He has Holden out there. In addition to Holden, there are two kids in Holden's class with D. One is on injections and the other is on a pump. They are both very fond of Riley and Riley feels the same way about them. I'm sure they'd help out if needed. There is also a girl who has been in this particular school since Kindergarten. She is on a pump, an Animas just like Riley's. Her mom has told me that she'd be able to help. Also, the 6th grade teacher has D and is on a pump. And, the mother of one of the kid's in Holden's class is also an elementary teacher. So, in all, there are 5 people at the school who have Type 1 themselves and also the mother of a kid with D. Considering the school only has about 325 students, that's a pretty large number of people with D. It just tells me that Riley is exactly where he needs to be.

I still worry, of course. No one will take care of Riley like I will. Just like a PWD, no one will care for your D like you do. Just imagine, having to give up control of your D from 8 AM- 3PM every day. You have one day to teach someone everything they need to know, how to count carbs, how to bolus, what to do for lows and highs. Then, you have to stand back and watch them do the best they can with the disease that you know intimately. The disease that only you really know how to best deal with. Scary huh? But, that's what I'm going to do with Riley. It's what I have to do.

Now, I'm going to put these thoughts aside for a while and enjoy my summer.

Monday, May 28, 2007

A stolen meme

Taken from Shannon and Jamie...

10 Years ago...

1.) How old were you: 23
2.) Where did you go to school: not in school
3.)Where did you work: a hospital
4.) Where did you live: with my parents
5.) Where did you hang out: the ballpark or friend's houses
6.) Did you wear glasses: no, contacts
7.) Who was your best friend: Heidi
8.) Who was your regular-person crush: Michael
9.) How many tattoos did you have: one
10.) How many piercings did you have: one, ears only
11.) What car did you drive: '97 Toyota Corolla
12.) Had you been to a real party: Yes.
13.) Had your heart broken: Yes
14.) Single/Taken/Married/Divorced/Bitter: in between single and taken (Michael and I had just met)

Five years ago...

1.) How old were you: 28
2.) Where did you go to school: n/a
3.) Where did you work: I was home on maternity leave.
4.) Where did you live: same town as now
5.) Where did you hang out: I didn't hang out anywhere but home
6.) Did you wear glasses: contacts
7.) Who was your best friend: Michael
8.) Who was your regular-person crush: Michael
9.) How many tattoos did you have: 1
10.) How many piercings did you have: one
11.) What car did you drive: '97 Toyota Corolla
12.) Had you been to a real party: Yes
13.) Had your heart broken: Yes
14.) Single/Taken/Married/Divorced/Bitter: Married

Present Day...

1.) How old are you: 33
2.) Where do you go to school: n/a
3.) Where do you work: home health
4.) Where do you live: same ol' place
5.) Where do you hang out: somewhere on the verge of insanity
6.) Do you wear glasses: contacts
7.) Who is your best friend: Michael
8.) Who is your regular-person crush: Michael
9.) How many tattoos do you have: 1
10.) How many piercings do you have: one
11.) What car do you drive: '05 Pontiac Vibe
12.) Had you been to a real party: Yes
13.) Had your heart broken: Yes
14.) Single/Taken/Married/Divorced/Bitter: Married

Tuesday, May 22, 2007

We're back in business

23: Number of hours Riley went without a pump.

8: Number of shots he got in that time period.

1: Approximate hours of sleep I got last night.

100 bazillion gazillion fafillion: How much money the pump is worth to me.


We did well going without the pump for almost a whole day. Riley’s sugars were surprisingly good. I thought he would run high most of the time since he didn’t really have any basal insulin, but he didn’t. He went into the low 300s once and the upper 200s twice, but most of the time, he was right in range.

It was strange. At 12:45 this morning his sugar was in the 300s. He got an injection. I expected that after about 3 hours, he’d need another because that’s about how long his NovoLog usually lasts. But, he didn’t need another injection for 6 hours. His sugars were perfectly fine all through the night. Trust me, I know. He was checked pretty much every hour.

Overkill? Maybe, but I wasn’t sleeping anyway. The thought of him not having any background insulin had me scared. I even had 2 alarms set so I wouldn’t fall asleep and sleep through the alarm. I figured if one didn’t wake me up the other one would.

And, Riley was plenty happy to get back on the pump. He was tired of the shots and so was I.

Monday, May 21, 2007

No strings attached

Yesterday was our typical Sunday. Wake up, go to church, go to Mom's to eat, play a little ball with Riley, head to the beach and watch Riley swim, bath, site change, bed. And, a little basal change in there also because Riley's been running high the last few days.

His overnight sugars were the best they've been in about a week. The nighttime is when he's been running high. But, last night, he actually had to run at a decreased basal for a while. Not bad.

Then, I received a call from my mom at around 10 AM. Riley's pump had alarmed and read "pump not primed, no delivery". This has happened before, so I got mom to rewind and then put the cartridge in. When she did this, instead of the cartridge stopping where it was supposed to it just kept going and pushed all the insulin out. When mom told me this, I got a bad feeling in the pit of my stomach. "Oh, and the screen is all foggy. I can barely see it," she said.

Uh oh. That is not good, not good at all.

Luckily, I was in the office which is only about 10 minutes from my mom's house, so I went to check things out. Sure enough there was condensation under the screen. I checked for cracks but didn't see any. I took the battery out. It was wet and starting to corrode.

I called Animas to let them know. The lady I talked to didn't take long to say they'd send out another pump. It will arrive tomorrow.

I called Riley's endo to see what to do. She said that since he will be without the pump for just a day, she wouldn't put him on Lantus. But, if I wanted to do it that way, I could. I went with what she said. I really didn't want to start back on Lantus. We had some very scary nighttime lows with Lantus before.

So, now, we're testing at least every four hours (not unusual, we usually test more) and bolusing every four hours as needed for highs with a little extra thrown in to cover the basal.

And, man, does it suck. I forgot how hard it is to draw up 1/2 unit of insulin and 1/4, well there's just no way to do that.

Riley's sugar was 150 when I checked, not bad considering he'd just eaten breakfast 2 hours before. He ate a snack and got an injection for that.

All in all, he did OK. He was not happy about it, but he didn't cry. He picked out where he wanted the shot (right arm) and sat in my mom's lap while I gave it.

Now, I've figured up that if he goes 24 hours without the pump, that's at least 6 shots. Ugh. It makes me appreciate the pump that much more.

And, sleep tonight, that's pretty much out of the question.

After I gave Riley his shot, I turned to say something to my mom and noticed the tears in her eyes. I told her, he'd be OK. I reminded her that at least we have a way to treat his diabetes. It wasn't that long ago that if he had gotten it, we would have sat by his bedside watching him waste away. How painful that must have been for those parents, and for the children that had to endure it. I'm just thankful there is such a thing as insulin, so that my child can live.

Riley grinned as I pulled out his site. While he's not happy about the shots, I think he's enjoying being free for a while. And, it's strange to not have to think about if his site is OK or worry about him pulling it out when he goes to the restroom.

For now, I've decided we're going to enjoy living life for the next 24 hours, with no strings attached.

***edit: When I went home at lunch to give Riley his injection, my mom told me that they were out in the yard playing tennis and Riley ran to get the ball and he looked at her and said, "You know, I feel like a normal person again, without any needles or tubes." How sad is that? Who knows? Maybe he won't want to go back to the pump, but I hope he does. It really is the best thing for him. Plus, I think the shots are going to get old very quick.***

Saturday, May 19, 2007

Talk me down

You know, I had many parents tell me in the beginning of this disease that checking sugars and giving insulin would just become second nature. They were right. I wish they weren't.

The last few weeks have been a blur of finger pricks, button pushes, and site changes. I test, I bolus, I change sets almost like a robot. I see a 300, I give insulin. I see a 50 and I give fruit snacks. I see a 120 and I smile. Then, I go on with my life like sticking my child with needles 10-12 times a day is perfectly normal.

When did I become complacent? When did I just accept this stupid disease?

Yes, I guess you need to accept it in some way to stay sane. But, I feel like I've almost invited diabetes in as a part of the family.

I don't know how to explain it. I just feel that by testing and bolusing and not really thinking about it, I've succumbed to the fact that Riley will always have this disease. It's just become a part of our life.

Of course, there are two sides to every coin. Accepting diabetes as a part of Riley's life is healthy, I guess. It's a little easier on the emotions. And, it's, well, realistic, practical.

But, I don't want it to be a part of Riley's life. I feel that by accepting it, I've given up hope of him ever living without it.

I've talked about a cure before. I really don't think about it all that much. I can't. The thought of a Riley that doesn't need needles and insulin seems like heaven to me. But, to think that it may never happen is very painful.

By the same token, I have to hope for a cure. I feel like if I don't, I'm somehow letting Riley down. That by not hoping I've given up.

Have I given up?

Sometimes I try to imagine Riley without diabetes. And, I can't. How sad is that? I can't see Riley just going to the cabinet, getting out a snack and eating it. It seems so foreign to me.

I'm not really sure what this post is all about. I've just been acutely aware lately of how much I have been accepting diabetes and what it does to Riley. It's in the back of my mind that I need to fight, but I just don't have the strength. I'm tired of wishing, hoping, waiting, fighting, only to get up every morning to do it all over again.

It makes me feel like diabetes has won. I feel like I've given up the fight, like I've raised the white flag. Like I'm telling diabetes it's OK that it has taken up residence in my child's body. I used to feel like it was just renting a space. Now, I see a little sign that says "under contract" and it's only a matter of filling out the paperwork before Riley's body will be it's permanent home.

I guess the fact that I'm writing this post and pondering all these things means I haven't given up hope just yet. But, I feel like I'm really close. And, that scares me.

I'm teetering on the brink of giving up.

I need someone to talk me off the ledge.

Thursday, May 17, 2007

Help a little boy with leukemia

Hi everyone. I received this email today and it checks out to be true according to snopes.

A little boy named Shane has leukemia. Instead of wishing for toys or money or a trip to Disney, he wants to receive the most birthday cards ever for his birthday. His birthday is May 30th. Don't ignore this please. What if he were your child?



His address is:

Shane Bernier
PO Box 484
Lancaster, Ontario
K0C 1N0
Canada



You can go to
Shane's site to read more.



Thanks in advance for your help. The OC is a compassionate bunch of people. I know you won't let Shane down.

Monday, May 14, 2007

A Day Late

Yesterday was Mother's Day (happy day to all moms) and it was also my baby boy's 5th birthday. I can't believe he's five already. Time goes so fast.

In honor of Riley's birthday I thought I'd post something else that Holden wrote for school.

May 13 by Holden

The best memory I have is May 13, 2002, the day my little brother Riley was born. Ever since I was able to talk and form sentences I was asking my mom for a little brother. I wanted someone to play with and grow up with and I thought it would be the best thing in the world. I asked for a brother for Christmas and asked for a brother as a birthday present. My mom always said she didn't want another kid and that I should stop asking because I would never be getting a little brother. As I grew up I kind of grew out of wanting a brother and just stopped asking or thinking about it. Then one day after supper my parents took me in the living room and told me I was getting something and that I could ask twenty questions about it and then guess what it was. At this time I really wanted a husky dog and I was asking all these random questions and I didn't have a clue. My parents told me I couldn't see what it was yet but that it was int he room. I was so confused and then my mom said, "I'm going to have a baby." I was so astonished. It was the last thing I expected her to say, it had never even crossed my mind. I fell out in the floor crying for the longest time because I was overwhelmed with joy. My mom came and hugged me and when I gathered myself we went to my grandparent's. That was a great day but not nearly as great as the day about nine months from then.

That day is as clear to me as if it just happened. I was sleeping and my dad woke me up and told me that my mom was going into labor. I got up and helped him get things ready and was very excited. After a while my mom's contractions died down and she no longer thought she was in labor. I went back to bed and eventually got over the false alarm and went back to sleep. Maybe forty-five minutes later he woke me up again and my mom was now sure she was in labor. We went to the car and got on our way to --------. On the way I remember thinking I was really helping my parents by timing my mom's contractions. I didn't even know what that was and I had no idea why I was timing it but I knew that I was helping and that was really important to me. We got there and as soon as we stopped my mom threw up in my dad's car for the first time the whole trip. This made me want to throw up but I was able to hold it back. We went inside and checked in and they took my mom back while I sat in the waiting room. I am pretty sure I eventually fell asleep waiting around for my mom to have her baby. My dad and granddad woke me up to go get some breakfast from the little restaurant they had there at the hospital. This is where I have a very strong memory of what my dad said there. We were eating something that was very good and I said that we can come back to this place for lunch. My dad said that we probably wouldn't be thinking about lunch because something more important would be happening then. Sure enough something more important was happening at 12:18 right when I would have been eating lunch. I was standing outside the room with my grandparents and I could hear my mom laughing. It confused me at first as to why she would be laughing because I thought it was painful but I found out later it was because they had given her so many drugs to stop the pain. I heard a baby crying and became very happy. After a minute my dad stuck his head out the door and said, "It's a little Riley." This sent me into tears and I grabbed onto my grandma. I was so happy because something I had wanted my whole life was finally here and I couldn't hold it in. I went in and saw him and thought it was the greatest thing I had ever seen. This was such a memorable day for me and is the best one that I can remember..

People always said they didn't know why I wanted a brother so badly once I got older because I couldn't even play with him. I have come to find out that was a lie. I play very rough with him now and he plays rough with me. He even plays video games with me that some 12 year olds can't comprehend and he is only four. I have much fun with him. Even though he is sometimes a little whiny annoying kid I still love him to death because he gave me my best memory ever.



















Happy birthday, Riley. You are such a blessing to our family.



------------------------------------------------------------------------------------------------


Now, some birthday pictures. Riley is so special he got two parties.

The first was at a local beach.



It came complete with a Yoda cake.












And, a Darth Vader pinata.





And, lots of presents.





Party number two was smaller and came with a homemade Darth Vader cake.
















And, even more presents.




Mostly there was a lot of this...



And this...



And a little bit of this...






Tears courtesy of big brother, Holden.

But, it was OK. They settled it with a duel.





And, diabetes, I'm sure it was there somewhere. We hardly even noticed.

Thursday, May 10, 2007

Holden's post

Holden said I could share this with all of you. He recently wrote an English project entitled This is my Life.

I may share more later, but for now I'll share this because it's almost Mother's Day.

I hope you enjoy it. I know I did.

Most Influential Person by Holden

The person who has had the biggest positive influence on my life would have to be my mom. I think most of this can be attributed to the fact that it was just me and her for a period of time and we developed a relationship that I can't have with anyone else. She had me when she was only seventeen but loved me before I was even born. She did the best she could with me as a newborn while trying to be a high school student and later a college student. She balanced these two things well, but she also had a lot of help from my grandparents that we lived with for the first six tears of my life. I am also very thankful for them. After that we moved to our own little house in ----- where she met my step-dad, Michael, my now adopted father. We didn't have the easiest life or the most money but my mom still provided for me. When it came time for Christmas or other times she made sure I was very happy and went to great lengths to make sure I was comfortable even if she wasn't. She also gave me the birthday present I had always asked for when she gave birth to my little brother Riley.

I eventually became a teenager and realized that my mom was never right and that I knew everything. Even if I was stubborn or if I am stubborn today she will still love me and even if she fusses or yells at me I know she's just trying to do what is best for me. Every Christmas she always writes me a letter telling me different things that help me and always means a lot to me. She's always been there for me and I know she always will.

My mom has also been a good role model for me. She is a Christian and a moral role model for me to look up to. Ever since I was little I have been going to church because she first started taking me. She also set the example by not going and dropping me off there, but she went herself every Sunday she could. She helped in Bible School and taught and is still teaching in my youth class with my dad. She has been an active member in our church since I can remember and that is something I want to grow up to be. She also sets a Christian example in our house. She tries to give me a world to grow up in that will make me the good person I am supposed to be. Certain things like T.V. channels and internet sites that I shouldn't see are blocked out in my house because she knows they are not right and that I will be a better person by not seeing them. She also tries to keep music from me that is unedited so I won't hear language like that repeatedly and let it become part of my everyday vocabulary. She was a vital part in my Christian life and still is and that is the most important thing she could have ever done for me.

I picked my mom as my most influential person because she has had a positive impact on my life on so many different levels. She loves me like I know no one else in this world does, because we have that relationship I was talking about that is different and special and can only be between us. She supported me when I was young while she was still a kid growing up herself, barely older than me. That took courage and a mindset that I can truly appreciate. At that point adoption could have easily been an option, but I'm glad it wasn't because I wouldn't trade my mom for any other mom in the world.

Don't I have a great kid? I am so blessed to have him (and Riley) in my life. Reading this made me realize that our kids do notice the things we do or don't do for them most of the time.

I can't take all the credit for Holden. He is a great kid. I don't know how much I had to do with that. I think I just got lucky. One thing I do know, I wouldn't trade him for any other kid in the world.

Saturday, May 05, 2007

R.I.P. Lizzy

Today we had to put one of our dogs to sleep. She had gotten sick and was very weak and tired. It was the humane thing to do. She was almost 7 years old. Her name was Elizabeth. But, most of the time I called her Lizzy or Lizzy Beth.

This is a picture of her (and Holden) about 5 or 6 years ago.





Rest in peace Lizzy Beth. You were a good girl.

Friday, May 04, 2007

Pictures

In lew of the depressing posts I've been doing lately I decided I'd post some pictures.


My little Jedi.




My big Jedi.





Easter pictures














Holden's messed up ankle. Gross, huh?



Bobcats game!!






Holden driving away in his new car for the first time. Sigh.


Basketball.



Snowball dance.


I'll never turn to the dark side.

Isn't he sweet?


Asleep again.



Sorry to bore you. I hope everyone has a great weekend!!!

Mother's Day Giveaway

There is a giveaway going on at 5 minutes for mom.

Click here to find out how to enter.

mothers-day-button-180-pixe.jpg

Who doesn't love free stuff?

Thursday, May 03, 2007

Hatred

Hate is such a strong word.

I have never felt as much hatred as I do now. It’s really not in my nature to hate anyone or anything. I might dislike something, but again, hate is a strong word.

But, I hate diabetes with a passion I never knew existed.

When Riley’s sugar went from 342 to 36 in an hour and a half today my hatred just bubbled over. The fact that he still had plenty of insulin on board didn’t help matters any.

I was riding down the road and I could barely see the truck in front of me through the tears that were stinging my eyes. This time the tears where not from the pain of dealing with the disease, but rather, pure, unadulterated anger for what this disease does to my child.

The word unfair crossed my mind a few times.

I know, life is unfair. The fact that two parents lost their 17-year-old son in a wreck is unfair. The fact that people are going hungry is unfair.

Yes, I do know that life is unfair. But, it’s just supposed to be unfair for me, not my son. One of my jobs as a mother it to protect my children from the unfairness in the world for as long as I can.

But, Riley, he learned how unfair life is at the age of three.

I look at how tiny his fingers are when I do a sugar test, and I hate this disease.

I see him trying to hold back the tears when I change his needle. He’s trying to be so brave. He shouldn’t have to. And, I hate this disease.

I see the look of pleading on his face when his sugar is low. He’s looking for me to help. All I can do is sit and hold him and kiss his head until he feels better. And, I hate this disease.

I watch other kids pick up a snack or a piece of candy and pop it into their mouth without a second thought. They didn’t have to ask their mom if it was OK. They didn’t have to prick themselves with a needle first. And, I hate this disease.

Yes, I hate this disease. But, as much hatred as I have for it and as intense as it is, it doesn’t even scratch the surface of how much I love my little boy.


And, because of that, I know that everything is going to be OK.

I will always hate diabetes, but at the end of the day the love that I have for my child wins out.

I watch him pretending to be a Jedi and my heart overflows with love.

I see his chest rise and fall as he's sleeping and I'm so thankful to have him at all. And, my heart overflows with love.

I watch him run to first base and after he gets there he turns to me and waves. And, my heart overflows with love.

Diabetes thinks it has the upper hand, but it's wrong. It can make me hate, it can make me curse, and it can make me cry. But, it cannot take away the love that I have for my child.

Love trumps diabetes every time.