Just a very quick post to give you all a link to where the ADA recommends testing 3-4 times a day. It is stated at several different locations, but this is one of them. (If you don't know what I'm talking about, see my previous post.)
"Three or four times per day is usually recommended for those who take insulin."
Of course, it does go on to say you or your child may need to test more often, blah, blah, blah. But, my position is that they need to set guidelines for those with Type 1 that are realistic. Testing 3-4 times per day is not very realistic to achieve the recommended A1C of 7.0.
Nicole, who is so much more articulate than me, has sent an email to someone at the ADA posing some questions about their guidelines. I really appreciate her doing this. And, I will keep all of you posted on what is going on.
Thursday, November 02, 2006
Wednesday, November 01, 2006
Insurance update
Just a very quick update on the latest from the insurance company. Yesterday I received a call back from the pharmacist at the insurance company. She says the info for limiting the strips came from the ADA. They recommend that Type 1 people test 3-4 times a day. ( They also say people with Type 1 should test "several times a day". Is that vague enough for you?) Also, they use Medicare guidelines (for my 4 year old) which recommend people on insulin use 100 strips per month. She said they allowed more than what was recommended because they realize there are days where you need to test more than others.
So, here's my problems with this. # 1) The American Diabetes Association recommends testing 3-4 times a day. There is something very wrong with this. The minimum should be 8 times a day. (before meals, 2 hours after meals, at bedtime, and in the middle of the night) The ADA needs to be more of an advocate for people with Type 1. If insurance companies are looking to the ADA for guidance then their guidance should be better and not quite so vague. #2) I have a problem with the ADA, FDA, and insurance companies not differentiating between Type 1 and people on insulin. I have plenty of Type 2 patients that are on insulin. There is a huge difference between the two. While some people with Type 2 benefit greatly from insulin, they do not need it to survive. My son needs insulin just to live. He has an organ that does not function. In order to try to be that organ for him, I have to test him more often.
So, does any of this bother anyone else? I am continuing the battle with my insurance company by filing a grievance. But, would anyone care to help me educate the ADA on why they need to take Type 1 a little more seriously?
Please let me know what you all think. I feel that the main organization that is looked to,to educate the public about diabetes is falling down on the job. I think we need to let them know this.
So, here's my problems with this. # 1) The American Diabetes Association recommends testing 3-4 times a day. There is something very wrong with this. The minimum should be 8 times a day. (before meals, 2 hours after meals, at bedtime, and in the middle of the night) The ADA needs to be more of an advocate for people with Type 1. If insurance companies are looking to the ADA for guidance then their guidance should be better and not quite so vague. #2) I have a problem with the ADA, FDA, and insurance companies not differentiating between Type 1 and people on insulin. I have plenty of Type 2 patients that are on insulin. There is a huge difference between the two. While some people with Type 2 benefit greatly from insulin, they do not need it to survive. My son needs insulin just to live. He has an organ that does not function. In order to try to be that organ for him, I have to test him more often.
So, does any of this bother anyone else? I am continuing the battle with my insurance company by filing a grievance. But, would anyone care to help me educate the ADA on why they need to take Type 1 a little more seriously?
Please let me know what you all think. I feel that the main organization that is looked to,to educate the public about diabetes is falling down on the job. I think we need to let them know this.
Friday, October 27, 2006
What really counts
Because of the walk and all that went along with that, I never even mentioned Riley's last endo. appointment. It was about a month ago. All in all, things went pretty well.
He had gained 2 pounds since his last appointment, which was a little bit of a relief. At his last appointment he had lost 1/2 pound, which is not normal for a kid his age. Now, we're back on track. I feel like he may have gained more weight since then because he really has had a great appetite lately.
I will post more about the particulars of the appointment later, but for now, I want to share something I saw while at Dr. M's office.
We were sitting on the couch waiting to be seen and I noticed a little sign hanging on the wall. I had never noticed it before.
It said:
" Not everything that counts can be counted.
Not everything that can be counted counts."
I really like that. It helped to bring into perspective that Riley's life is not just about the numbers. It's about living life. The numbers are important. Like keeping a normal- for- age A1C, but it you start to focus on the numbers you may loose site of the big picture, life
It's a hard thing to do. Instill in your child that the numbers (sugars) are very, very important, but not too much. (See, that whole sentence doesn't even make since.)
A year ago, I would sit on the couch for an hour just staring at Riley's log book. I would agonize over the high sugars and try to figure out what I did wrong.
Now, I realize that sometimes it is something I've done wrong (like miscount the carbs), but most of the times it just is what it is. Unless I've started to notice a pattern at certain times of the day, I hardly ever sit and study his log book anymore.
In the last year I have learned not to make a big deal about the numbers. You treat the lows, you correct the highs, and you adjust basals when a pattern emerges.
Other than that I try not to think about the numbers much. I know that Riley looks to me to learn what's important and what's not. The best way to teach a child is through action.
So, that is why when his sugar is in the 300s, I just correct and test him again in about and hour and half to make sure it's coming down. I try very hard not to comment or appear disgusted. These things happen. As long as they don't happen too often, it's all good.
Riley is a wonderful little boy. He is so smart and so sweet. I had someone comment just yesterday how polite he is.
He loves baseball. It is amazing how much he knows about it. When the world series is on, he's glued to the TV. (Go Tigers!!) When he's not watching baseball. He's pretending to play it in the middle of the living room.
He is so much like his dad, it's not even funny. He loves his big brother fiercely. He would do anything for him.
He's a healthy, happy, wonderful little man. And at the end of the day, that's what really counts.
He had gained 2 pounds since his last appointment, which was a little bit of a relief. At his last appointment he had lost 1/2 pound, which is not normal for a kid his age. Now, we're back on track. I feel like he may have gained more weight since then because he really has had a great appetite lately.
I will post more about the particulars of the appointment later, but for now, I want to share something I saw while at Dr. M's office.
We were sitting on the couch waiting to be seen and I noticed a little sign hanging on the wall. I had never noticed it before.
It said:
" Not everything that counts can be counted.
Not everything that can be counted counts."
I really like that. It helped to bring into perspective that Riley's life is not just about the numbers. It's about living life. The numbers are important. Like keeping a normal- for- age A1C, but it you start to focus on the numbers you may loose site of the big picture, life
It's a hard thing to do. Instill in your child that the numbers (sugars) are very, very important, but not too much. (See, that whole sentence doesn't even make since.)
A year ago, I would sit on the couch for an hour just staring at Riley's log book. I would agonize over the high sugars and try to figure out what I did wrong.
Now, I realize that sometimes it is something I've done wrong (like miscount the carbs), but most of the times it just is what it is. Unless I've started to notice a pattern at certain times of the day, I hardly ever sit and study his log book anymore.
In the last year I have learned not to make a big deal about the numbers. You treat the lows, you correct the highs, and you adjust basals when a pattern emerges.
Other than that I try not to think about the numbers much. I know that Riley looks to me to learn what's important and what's not. The best way to teach a child is through action.
So, that is why when his sugar is in the 300s, I just correct and test him again in about and hour and half to make sure it's coming down. I try very hard not to comment or appear disgusted. These things happen. As long as they don't happen too often, it's all good.
Riley is a wonderful little boy. He is so smart and so sweet. I had someone comment just yesterday how polite he is.
He loves baseball. It is amazing how much he knows about it. When the world series is on, he's glued to the TV. (Go Tigers!!) When he's not watching baseball. He's pretending to play it in the middle of the living room.
He is so much like his dad, it's not even funny. He loves his big brother fiercely. He would do anything for him.
He's a healthy, happy, wonderful little man. And at the end of the day, that's what really counts.
Monday, October 23, 2006
Walk Pictures
Blogger finally decided to be nice to me. Here are the pictures I promised.
My little man, my inspiration, my hero.
Walk of Hope 2006
Thursday, October 19, 2006
Walk of Hope 2006
Walk of Hope was held on October 7th, in commemoration of Riley's one year anniversary with D. A few months after he was diagnosed I thought I would just let that time pass with sadness. While I was sad, especially in the days leading up to his anniversary, I decided to do something positive in honor of Riley.
It was held at a local school. I asked to use their football field, but had access to the gym, just in case. The forecast for that Saturday was rain, rain, rain. But, the rain held off. It had rained a lot the day before and the football field was sloshy, so we moved the walk into the gym.
There were not many people that actually came out and walked. It started out with me, Michael, Holden, Riley, my mom, and Holden's girlfriend. Then, a little later my dad showed up. I had a sign up sheet and we took turns walking around the gym in 15 minute increments.
Around 10:00 my preacher and his family arrived. That's when we did the little presentations that I had done. The first presentation was about 5 minutes long and featured facts about Type 1 diabetes. We have Windows Movie Maker on our computer and that is how I made it. Michael borrowed a projector from his school and we showed the presentation on the wall. The background music was "He's My Son" by Mark Schultz. (you can go here to read the words to this song, but beware, it's a tear-jerker.)
Next, I did my little presentation of "Faces of Hope". I ended up with 13 people participating. I wish I could somehow show it to you. It's saved on my computer. If anyone knows how I could email it to people, let me know. I'm really not very computer literate.
The "Faces of Hope" presentation was about 4 1/2 minutes long. It featured people with Type 1 from all over the US, one from Switzerland, and one from New Zealand. The background music was "Hero" by Mariah Carey. (You can read the words here.) I did Ok all day until we did the presentation. I stood in the back and cried quietly. Not just for Riley, but for all of the people in the presentation and all of you that weren't.
Then, the walking resumed. My preacher and his family left. Right after they left, a boy in Holden's class, who has D, arrived with his mom and little brother. I showed the presentations again so they could see them.
When the walk was over and all the money was counted, it totaled $2,617.00 ( I have since received more money bringing the grand total to $2,667.00) My goal was $1,000, so I am quite pleased with the end result. I didn't expect to get much money just because I was collecting it all on my own. I had a few people say they would help collect money and then they didn't. Two people, Holden's girlfriend and my preacher's wife, did collect money totaling $60.00. Oh, yeah, and Michael got $27 from people that he works with.
I am not telling you this to brag. I am telling you this to let you know that you can do it too. I look at it this way. I may have not raised a whole lot of money, but if all of us would raise a few thousand here and there just think what we could do.
All of the money raised went to The Iacocca Foundation. Follow the link and you can donate to this worthwhile cause too. The money that was raised at Walk of Hope went directly to The Nathan-Faustman Project. For those who may not know, Dr. Denise Faustman has cured Type 1 in mice and is now conducting human clinical trials at Mass General Hospital in Boston, MA.
Because the money went to this foundation, Riley was featured in their latest e-newsletter. I can't post a link to it, because it emailed to those who sign up for it. If you would like to sign up for the newsletter, go here and click on the contact link. Or you can send me your email address and I'll email the October newsletter to you.
I am already looking forward to next year's walk. I kept it small this year, kind of as a test run. But, I plan on it being bigger and better next year. I am even planning on contacting someone who is somewhat of a celebrity. I figure, what the heck. The worst is that he can think I'm a psycho and tell me no. But, he may not. I won't know unless I try.
I'll leave you with a couple of pictures. If you notice, we all match. I had team shirts made. The front left had "Walk of Hope 2006" on it. On the back it said "Walk of Hope 2006, to raise money for a cure for Type 1 diabetes, all proceeds to The Iacocca Foundation www.joinleenow.org. Then it had The Beacons of Hope. Under that it listed all of the people or businesses that donated $100 or more.
(note: blogger is not being very nice this morning and is not letting me post my pictures. I will post the pictures at a later date, when blogger decides it will let me.)
It was held at a local school. I asked to use their football field, but had access to the gym, just in case. The forecast for that Saturday was rain, rain, rain. But, the rain held off. It had rained a lot the day before and the football field was sloshy, so we moved the walk into the gym.
There were not many people that actually came out and walked. It started out with me, Michael, Holden, Riley, my mom, and Holden's girlfriend. Then, a little later my dad showed up. I had a sign up sheet and we took turns walking around the gym in 15 minute increments.
Around 10:00 my preacher and his family arrived. That's when we did the little presentations that I had done. The first presentation was about 5 minutes long and featured facts about Type 1 diabetes. We have Windows Movie Maker on our computer and that is how I made it. Michael borrowed a projector from his school and we showed the presentation on the wall. The background music was "He's My Son" by Mark Schultz. (you can go here to read the words to this song, but beware, it's a tear-jerker.)
Next, I did my little presentation of "Faces of Hope". I ended up with 13 people participating. I wish I could somehow show it to you. It's saved on my computer. If anyone knows how I could email it to people, let me know. I'm really not very computer literate.
The "Faces of Hope" presentation was about 4 1/2 minutes long. It featured people with Type 1 from all over the US, one from Switzerland, and one from New Zealand. The background music was "Hero" by Mariah Carey. (You can read the words here.) I did Ok all day until we did the presentation. I stood in the back and cried quietly. Not just for Riley, but for all of the people in the presentation and all of you that weren't.
Then, the walking resumed. My preacher and his family left. Right after they left, a boy in Holden's class, who has D, arrived with his mom and little brother. I showed the presentations again so they could see them.
When the walk was over and all the money was counted, it totaled $2,617.00 ( I have since received more money bringing the grand total to $2,667.00) My goal was $1,000, so I am quite pleased with the end result. I didn't expect to get much money just because I was collecting it all on my own. I had a few people say they would help collect money and then they didn't. Two people, Holden's girlfriend and my preacher's wife, did collect money totaling $60.00. Oh, yeah, and Michael got $27 from people that he works with.
I am not telling you this to brag. I am telling you this to let you know that you can do it too. I look at it this way. I may have not raised a whole lot of money, but if all of us would raise a few thousand here and there just think what we could do.
All of the money raised went to The Iacocca Foundation. Follow the link and you can donate to this worthwhile cause too. The money that was raised at Walk of Hope went directly to The Nathan-Faustman Project. For those who may not know, Dr. Denise Faustman has cured Type 1 in mice and is now conducting human clinical trials at Mass General Hospital in Boston, MA.
Because the money went to this foundation, Riley was featured in their latest e-newsletter. I can't post a link to it, because it emailed to those who sign up for it. If you would like to sign up for the newsletter, go here and click on the contact link. Or you can send me your email address and I'll email the October newsletter to you.
I am already looking forward to next year's walk. I kept it small this year, kind of as a test run. But, I plan on it being bigger and better next year. I am even planning on contacting someone who is somewhat of a celebrity. I figure, what the heck. The worst is that he can think I'm a psycho and tell me no. But, he may not. I won't know unless I try.
I'll leave you with a couple of pictures. If you notice, we all match. I had team shirts made. The front left had "Walk of Hope 2006" on it. On the back it said "Walk of Hope 2006, to raise money for a cure for Type 1 diabetes, all proceeds to The Iacocca Foundation www.joinleenow.org. Then it had The Beacons of Hope. Under that it listed all of the people or businesses that donated $100 or more.
(note: blogger is not being very nice this morning and is not letting me post my pictures. I will post the pictures at a later date, when blogger decides it will let me.)
Tuesday, October 10, 2006
Insurance battles
An update about the walk will be forthcoming, but first I must rant a bit about Riley's insurance.
My husband is a teacher. We have NC State Teacher's health insurance. When given the opportunity, we switched to a PPO plan. It had what appeared to be better coverage. One of the main reasons for switching was that test strips were covered under a $10 co-pay. Period. The end. No fine print anywhere to be seen.
In the previous plan, I would pay for Riley's strips up front (400 strips= $386.00 per month), then a month or so later the insurance would send me a check for the 80% of the strips that they covered. So, we were paying around $77 a month for strips. When we saw the $10 co-pay, we just couldn't resist. There are other great things about the plan, but the test strips were really our deciding factor. This new plan costs a little bit more per month, but we end up saving money in the end, due to the decreased deductible, etc.
One downfall was that we had to give up our wonderful Freestyle meter. I really like that meter. It's so small and the test strip lights up to make middle of the night testing much easier. Under the new plan, Freestyle is not a preferred strip. So, we got a new prescription from the endo for One Touch Ultra strips. I thought I had jumped through all the hoops I had to. Giving up the Freestyle meter was a small price to pay for the savings we would be receiving. ($804.00 per year).
I walked into my local pharmacy on Thursday and handed them my brand new prescription for a 30 day supply of strips. The endo even wrote on the prescription "Small child on the pump, must test at least 12 times a day" I was feeling good. I was smiling thinking of that mere $10 I had to dish out.
Mr. Nice Pharmacy Man tells me the prescription won't go through. He said it says I need prior authorization. This is the first I've heard of such a thing. So, I call the endo and give her the 800 number I have been given so she can approve the strips. When she calls the number, she is told that my plan does not require prior authorizations for strips. So, the ball is back in my court.
I spent a little while on the phone on Friday trying to get this all straightened out. I didn't spend the whole day, however, because Friday was a special day. I was finishing up with some last minute walk things and it was Riley's one year anniversary. (We did go to the movies and saw Open Season. It was pretty funny. Ashton Kutcher is the deer and I've always thought he's hilarious.) Ok, back to the insurance saga.
By 5:30 Friday, I had gotten no where and the pharmacy closes at 6 PM. I ended up going to the pharmacy and buying 25 test strips just to get me through the weekend. I had a few Freestyles left.
I begun my quest anew on Monday morning. Then, I went to see patients. And started the quest back up on Monday afternoon. In total, I spent 3 hours of my work day on the phone with the insurance company. Everyone I talked to told me that they couldn't authorize more test strips. But, they couldn't tell who could. I was bounced back and forth from the insurance company to the people who handle the pharmacy benefits. Both sides told me they had nothing to do with test strips.
What I did find out is that the new plan would only allow 150 strips per month (or 5 per day). Yes, 5 per day. I used 5 in a little over an hour Saturday because Riley was low and didn't seem to want to come up. I had to keep testing until we got him in range again. 5 strips a day is just totally ridiculous for someone with Type 1 diabetes, especially, a small child. The insurance people did not see my point. They were absolutely no help, whatsoever.
By the end of my work day on Monday, Riley had 5 strips left. While the insurance company thinks that should last me 24 hours, they lasted until 8 AM Tuesday morning. Foreseeing that 5 would not be enough, I go back to the pharmacy. Mr. Nice Pharmacy Man gave me 100 strips on credit until I can get all of this straightened out. (By the way, Mr. Nice Pharmacy Man owns this pharmacy and was very nice to just hand me 100 strips without making me pay. He has always been very helpful and even donated $100 to Walk of Hope).
(Let me interject here, I started this post almost a week ago and am just now getting back to it. So, I'm just going to make a long story short.)
Tuesday I spent another 2 solid hours on the phone. People kept telling me that I could hang up and someone would call me back. I refused to hang up. I just kept telling them that whoever they were going to talk to I wanted to be on the phone at the same time. So, I had several 3 way conversations.
The very first person I called on Tuesday was named Heather. I told Heather all that I had been through and she asked if she could stay on the line with me. She stayed on the other end the entire 2 hours. I thought this was going above and beyond the call of duty. It was nice to have her there because when other people didn't want to listen to me, she would jump in and people would start taking me seriously again. I got her supervisor's name and will be sending an email to Medco today to let them know what a good job she did.
Ok, I said I was going to make this short. I ended up talking to one of the higher ups who gave me her direct phone number. In the end, I found out that the insurance company uses the FDA guidelines which recommend that people test 5 times a day if they are on insulin. Come on. The FDA can't even differentiate between Type 1 and Type 2 diabetes? (I spent a lot of my time on the phone educating people about Type 1 diabetes and why Riley needed to test so much.) So, my plan will allow 150 strips per month under the $10 co-pay. Then, the other 250, I have to pay up front like I did before and then wait to for insurance to send back the 90% they owe me. It is still better that it was and still ends up saving us about $400 a year, but it's not as good as I thought it was going to be.
I just kept thinking while I was on the phone, "How often will Riley battle with people like these over his lifetime, just to get what he needs to survive?"
Another injustice that comes along with this stupid disease.
My husband is a teacher. We have NC State Teacher's health insurance. When given the opportunity, we switched to a PPO plan. It had what appeared to be better coverage. One of the main reasons for switching was that test strips were covered under a $10 co-pay. Period. The end. No fine print anywhere to be seen.
In the previous plan, I would pay for Riley's strips up front (400 strips= $386.00 per month), then a month or so later the insurance would send me a check for the 80% of the strips that they covered. So, we were paying around $77 a month for strips. When we saw the $10 co-pay, we just couldn't resist. There are other great things about the plan, but the test strips were really our deciding factor. This new plan costs a little bit more per month, but we end up saving money in the end, due to the decreased deductible, etc.
One downfall was that we had to give up our wonderful Freestyle meter. I really like that meter. It's so small and the test strip lights up to make middle of the night testing much easier. Under the new plan, Freestyle is not a preferred strip. So, we got a new prescription from the endo for One Touch Ultra strips. I thought I had jumped through all the hoops I had to. Giving up the Freestyle meter was a small price to pay for the savings we would be receiving. ($804.00 per year).
I walked into my local pharmacy on Thursday and handed them my brand new prescription for a 30 day supply of strips. The endo even wrote on the prescription "Small child on the pump, must test at least 12 times a day" I was feeling good. I was smiling thinking of that mere $10 I had to dish out.
Mr. Nice Pharmacy Man tells me the prescription won't go through. He said it says I need prior authorization. This is the first I've heard of such a thing. So, I call the endo and give her the 800 number I have been given so she can approve the strips. When she calls the number, she is told that my plan does not require prior authorizations for strips. So, the ball is back in my court.
I spent a little while on the phone on Friday trying to get this all straightened out. I didn't spend the whole day, however, because Friday was a special day. I was finishing up with some last minute walk things and it was Riley's one year anniversary. (We did go to the movies and saw Open Season. It was pretty funny. Ashton Kutcher is the deer and I've always thought he's hilarious.) Ok, back to the insurance saga.
By 5:30 Friday, I had gotten no where and the pharmacy closes at 6 PM. I ended up going to the pharmacy and buying 25 test strips just to get me through the weekend. I had a few Freestyles left.
I begun my quest anew on Monday morning. Then, I went to see patients. And started the quest back up on Monday afternoon. In total, I spent 3 hours of my work day on the phone with the insurance company. Everyone I talked to told me that they couldn't authorize more test strips. But, they couldn't tell who could. I was bounced back and forth from the insurance company to the people who handle the pharmacy benefits. Both sides told me they had nothing to do with test strips.
What I did find out is that the new plan would only allow 150 strips per month (or 5 per day). Yes, 5 per day. I used 5 in a little over an hour Saturday because Riley was low and didn't seem to want to come up. I had to keep testing until we got him in range again. 5 strips a day is just totally ridiculous for someone with Type 1 diabetes, especially, a small child. The insurance people did not see my point. They were absolutely no help, whatsoever.
By the end of my work day on Monday, Riley had 5 strips left. While the insurance company thinks that should last me 24 hours, they lasted until 8 AM Tuesday morning. Foreseeing that 5 would not be enough, I go back to the pharmacy. Mr. Nice Pharmacy Man gave me 100 strips on credit until I can get all of this straightened out. (By the way, Mr. Nice Pharmacy Man owns this pharmacy and was very nice to just hand me 100 strips without making me pay. He has always been very helpful and even donated $100 to Walk of Hope).
(Let me interject here, I started this post almost a week ago and am just now getting back to it. So, I'm just going to make a long story short.)
Tuesday I spent another 2 solid hours on the phone. People kept telling me that I could hang up and someone would call me back. I refused to hang up. I just kept telling them that whoever they were going to talk to I wanted to be on the phone at the same time. So, I had several 3 way conversations.
The very first person I called on Tuesday was named Heather. I told Heather all that I had been through and she asked if she could stay on the line with me. She stayed on the other end the entire 2 hours. I thought this was going above and beyond the call of duty. It was nice to have her there because when other people didn't want to listen to me, she would jump in and people would start taking me seriously again. I got her supervisor's name and will be sending an email to Medco today to let them know what a good job she did.
Ok, I said I was going to make this short. I ended up talking to one of the higher ups who gave me her direct phone number. In the end, I found out that the insurance company uses the FDA guidelines which recommend that people test 5 times a day if they are on insulin. Come on. The FDA can't even differentiate between Type 1 and Type 2 diabetes? (I spent a lot of my time on the phone educating people about Type 1 diabetes and why Riley needed to test so much.) So, my plan will allow 150 strips per month under the $10 co-pay. Then, the other 250, I have to pay up front like I did before and then wait to for insurance to send back the 90% they owe me. It is still better that it was and still ends up saving us about $400 a year, but it's not as good as I thought it was going to be.
I just kept thinking while I was on the phone, "How often will Riley battle with people like these over his lifetime, just to get what he needs to survive?"
Another injustice that comes along with this stupid disease.
Friday, October 06, 2006
Today
Today is the day. I posted yesterday because I didn't think I'd be able to post today. But, somehow, today, I'm OK. The emotions from yesterday have passed. I would be lying if I said I wasn't a little sad. But, it's not like yesterday. It's more of a nagging- in- the- back- of -my- mind sad. Just enough emotion to remind me that a year ago today was a very bad day. I had actually gotten better by last night. Michael had a softball game and on the way home from that I was laughing and singing along with the radio. He thought I had lost my mind. I told him. "Leave me alone. I've cried all day. I'm tired of crying."
Today, I'm tired of crying. I'm tired of letting diabetes dictate how I feel. I woke up this morning and one of the first things I thought is, "you have a choice to make". I'm a firm believer that most people are as happy as they let themselves be. Baring any chemical imbalances, we all decide how we are going to react to certain situations and how we are going to let situations or people make us feel.
Today, I cannot change the past, but I can look forward to the future. A future, not with complications, but with new technologies and possibly a cure.
Today, I am thankful for all the blessings that I have in my life. I have a roof over my head, food on the table, 2 beautiful boys, and a loving husband.
Today. my son has had diabetes for one full year.
Today, I'm at peace with that.
Today, I'm tired of crying. I'm tired of letting diabetes dictate how I feel. I woke up this morning and one of the first things I thought is, "you have a choice to make". I'm a firm believer that most people are as happy as they let themselves be. Baring any chemical imbalances, we all decide how we are going to react to certain situations and how we are going to let situations or people make us feel.
Today, I cannot change the past, but I can look forward to the future. A future, not with complications, but with new technologies and possibly a cure.
Today, I am thankful for all the blessings that I have in my life. I have a roof over my head, food on the table, 2 beautiful boys, and a loving husband.
Today. my son has had diabetes for one full year.
Today, I'm at peace with that.
Thursday, October 05, 2006
Tomorrow
Tomorrow is Riley's one year anniversary of having diabetes. I knew it would be hard, but I had no idea how hard.
I have plans to have a "fun day" with Riley tomorrow: maybe go to the park, go to a movie, go out for ice cream. You get the idea. I want tomorrow to be special. He doesn't know the significance of tomorrow and I'm not going to tell him. I am just going to make tomorrow all about him. After all, a year ago it was all about him ,but kind of in a bad way.
Because of all that I have planned for tomorrow maybe that is why all my emotions are overflowing today. I worked today. I cried in between every patient. I even cried at one patient's house. But, she's 96 and can't see or hear. She has no idea I did it. I just couldn't help myself.
I really feel like Riley has been diagnosed all over again. All the emotions I felt last October 6th have come flooding back like they never left. All the uncertainty, the fear, the sorrow. Just the utter grief that I have because my baby has a disease and I can't do anything about it.
I'm having trouble just putting one foot in front of the other today. Really. At my 96 year old's house, I just sat in the chair for the longest time. I couldn't move. I was just so overcome with emotions. I feel so drained. Not physically, but emotionally.
It's a wired feeling. I don't want to feel this way, but try as I might that horrible feeling in the pit of my stomach won't go away. I'll just be driving along and an image of Riley in the hospital flashes through my mind or the look on the Dr's face when he walked in to tell me that my son's life had changed forever. I'll never forget that look. It was a look of sympathy. I knew before he ever opened his mouth what he was going to say.
I 'm not going to recount the day here. I really don't want to think it about it right now. If anyone would like to read Riley's diagnosis story, you can go to my very first post.
It's really been a while since I had a breakdown because of this disease. I have my "curse diabetes" moments, but I haven't had a sob-fest in a while. I guess I was overdue.
Today, the box has overturned. All the bad things are scattered about on the floor and I just don't have the energy to pick them up and put them back in. Maybe later, but not right now. For now, I'll just sit in the corner and stare at them, wondering how they ever entered our lives in the first place and wondering if they'll ever really leave.
I have plans to have a "fun day" with Riley tomorrow: maybe go to the park, go to a movie, go out for ice cream. You get the idea. I want tomorrow to be special. He doesn't know the significance of tomorrow and I'm not going to tell him. I am just going to make tomorrow all about him. After all, a year ago it was all about him ,but kind of in a bad way.
Because of all that I have planned for tomorrow maybe that is why all my emotions are overflowing today. I worked today. I cried in between every patient. I even cried at one patient's house. But, she's 96 and can't see or hear. She has no idea I did it. I just couldn't help myself.
I really feel like Riley has been diagnosed all over again. All the emotions I felt last October 6th have come flooding back like they never left. All the uncertainty, the fear, the sorrow. Just the utter grief that I have because my baby has a disease and I can't do anything about it.
I'm having trouble just putting one foot in front of the other today. Really. At my 96 year old's house, I just sat in the chair for the longest time. I couldn't move. I was just so overcome with emotions. I feel so drained. Not physically, but emotionally.
It's a wired feeling. I don't want to feel this way, but try as I might that horrible feeling in the pit of my stomach won't go away. I'll just be driving along and an image of Riley in the hospital flashes through my mind or the look on the Dr's face when he walked in to tell me that my son's life had changed forever. I'll never forget that look. It was a look of sympathy. I knew before he ever opened his mouth what he was going to say.
I 'm not going to recount the day here. I really don't want to think it about it right now. If anyone would like to read Riley's diagnosis story, you can go to my very first post.
It's really been a while since I had a breakdown because of this disease. I have my "curse diabetes" moments, but I haven't had a sob-fest in a while. I guess I was overdue.
Today, the box has overturned. All the bad things are scattered about on the floor and I just don't have the energy to pick them up and put them back in. Maybe later, but not right now. For now, I'll just sit in the corner and stare at them, wondering how they ever entered our lives in the first place and wondering if they'll ever really leave.
Tuesday, October 03, 2006
Sitting on the box
Walk of Hope is coming up this Saturday. In my quest to make this disease “real” to people who don’t know much about it, I will be doing a little education also. Because of this, I have been researching statistical information about Type 1. I know the incidence of it, but I also know how many die each year due to Type 1. It’s not put me in such a great place.
I try very hard to not think about what could happen to Riley because of this disease. I try to focus on the good things. He’s healthy. He’s happy. His A1C is in range for his age. But, when I read about the bad things, it’s very hard not to be scared.
Like I said, I’ve been researching statistics. I also received a packet of info in the mail from JDRF about an upcoming walk. In it were sample letters from parents that they had sent to family and friends soliciting donations. These letters shared what they go through on a daily basis. A couple of them recounted recent seizures their children had suffered due to low blood sugars. When Riley was first diagnosed, I worried about seizures a lot. But, as time went on and he had lows in the 30s without a seizure, I kind of just pushed it to the back of my mind. But, now reading about it has made me think about the fact that it could happen to him.
A month or so ago, Michael came home with the news of a sister of one of the students at his high school. She had died from Type 1 diabetes. She was 7 years old. The tears roll down my face as I write that. I can only imagine what the family went through and is going through. It could have been my baby. It could still happen to my baby.
I try to keep these thoughts at bay. Yes, Riley could die from this disease. After all, there is such a thing as dead in bed syndrome. Yes, Riley could have a seizure from a low. Yes, he could end up with kidney failure and blindness. All of these things are a possibility for him.
I feel like I’ve put all those things in a box and I’m sitting on the top of it. The bad things try to pop out every once in a while. It’s really hard sometimes keeping that lid closed. I feel like it is taking all my strength just to keep one of the bad things from coming out. And, every once in a while, I’m not strong enough to keep that lid closed. Sometimes one bad thing will pop out and I’ll quickly stuff it back in and slam the lid shut. Other times the whole box is overturned and it takes me longer to put all the bad things back in.
Eventually I get them back in and instead of sitting on the box to keep it closed, I lock it. I lock it and I keep the key close by. Because, if I learn of another bad thing, I will have to unlock it and throw it into the box too. But, whenever I do this there is always the risk of letting some of the bad stuff out and I end up sitting on the box again for a while.
Today, I'm sitting on the box. It’s one of the bad days. The bad things are struggling to break free and wreak havoc in my life. I’m trying so hard to keep them in. When I feel like they are about to get out, I push down a little harder.
I know I’ll eventually be OK. I know that eventually I will put the lock back on and tuck the key safely in my pocket, just in case.
And, I know, one day, I’m going to lock that box and throw away that key... forever.
I try very hard to not think about what could happen to Riley because of this disease. I try to focus on the good things. He’s healthy. He’s happy. His A1C is in range for his age. But, when I read about the bad things, it’s very hard not to be scared.
Like I said, I’ve been researching statistics. I also received a packet of info in the mail from JDRF about an upcoming walk. In it were sample letters from parents that they had sent to family and friends soliciting donations. These letters shared what they go through on a daily basis. A couple of them recounted recent seizures their children had suffered due to low blood sugars. When Riley was first diagnosed, I worried about seizures a lot. But, as time went on and he had lows in the 30s without a seizure, I kind of just pushed it to the back of my mind. But, now reading about it has made me think about the fact that it could happen to him.
A month or so ago, Michael came home with the news of a sister of one of the students at his high school. She had died from Type 1 diabetes. She was 7 years old. The tears roll down my face as I write that. I can only imagine what the family went through and is going through. It could have been my baby. It could still happen to my baby.
I try to keep these thoughts at bay. Yes, Riley could die from this disease. After all, there is such a thing as dead in bed syndrome. Yes, Riley could have a seizure from a low. Yes, he could end up with kidney failure and blindness. All of these things are a possibility for him.
I feel like I’ve put all those things in a box and I’m sitting on the top of it. The bad things try to pop out every once in a while. It’s really hard sometimes keeping that lid closed. I feel like it is taking all my strength just to keep one of the bad things from coming out. And, every once in a while, I’m not strong enough to keep that lid closed. Sometimes one bad thing will pop out and I’ll quickly stuff it back in and slam the lid shut. Other times the whole box is overturned and it takes me longer to put all the bad things back in.
Eventually I get them back in and instead of sitting on the box to keep it closed, I lock it. I lock it and I keep the key close by. Because, if I learn of another bad thing, I will have to unlock it and throw it into the box too. But, whenever I do this there is always the risk of letting some of the bad stuff out and I end up sitting on the box again for a while.
Today, I'm sitting on the box. It’s one of the bad days. The bad things are struggling to break free and wreak havoc in my life. I’m trying so hard to keep them in. When I feel like they are about to get out, I push down a little harder.
I know I’ll eventually be OK. I know that eventually I will put the lock back on and tuck the key safely in my pocket, just in case.
And, I know, one day, I’m going to lock that box and throw away that key... forever.
Saturday, September 30, 2006
More pictures
The walk is this coming weekend. I'm working on my Faces of Diabetes (which is going to be renamed The Faces of Hope). I have gotten pictures from 12 PWD. This is the last call. If you would like to be included, please send your picture to pennylane5001@mchsi.com ASAP. And, thank you to all of you who have sent pictures of yourself or your loved ones.
Wednesday, September 27, 2006
A little conversation
A conversation heard in the back seat of my car the other day.
Holden: "Look Riley, you lost an eyelash. Blow on it and make a wish."
Riley: (blowing on the eyelash) "God, take away my diabetes."
Holden: "You know what, little boy? I always wish for the same thing too. "
Riley: "But, why? You don't have diabetes."
(Sad and funny all at the same time.)
Holden: "Look Riley, you lost an eyelash. Blow on it and make a wish."
Riley: (blowing on the eyelash) "God, take away my diabetes."
Holden: "You know what, little boy? I always wish for the same thing too. "
Riley: "But, why? You don't have diabetes."
(Sad and funny all at the same time.)
Friday, September 22, 2006
I feel like memeing
I don't really feel like writing anything profound or important today, so I decided on a meme. But, first things first, so far I have raised $1,150.00 for the walk. I still have several people and one business that is supposed to be donating money. I'm excited. It's already more than I expected to raise.
Now, on with the meme: (which I got from here)
1. Do you still have tonsils?
Yes, and I currently have a sore throat also.
2. Would you bungee jump?
Maybe at gunpoint. There may have been a time (many years ago) that I might have tried it, but the older I get the more of a wuss I become.
3. If You Could Do Anything In The World For A Living What Would It Be?
I've said pharmacist before, but I'm mad at pharmaceutical companies right now, so I guess I'll have to stick to my current job of being a nurse.
4. How many tattoos do you have?
One. A sunflower on the inside of my right ankle.
5. Your favorite fictional animal?
I just love Dori from Finding Nemo. She's funny. (OK, that's a weird question. Do most people have a favorite fictional animal?)
6. One person that never fails to make you laugh?
Holden. The kid is funny.
7. Do you consider yourself well organized?
No, not really. I just depends. When it comes to diabetes, yes I am, because I have to be. At my job, I'm moderately organized. My house is not organized at all.
8. Any Addictions?
Nope. Unless you count Thursday night TV (pretty much the only night I watch TV on a regular basis; I love Survivor, CSI, and ER. Did anyone see ER last night? It made me cry several times.). I may also be addicted to Zuma. Never heard of it? Go here to play it. But, be warned. I am not responsible for your laundry piling up while you try to shoot colored beads out of a frog's mouth.
9. From what news source do you receive the bulk of your news?
I hate to admit it, but I don't really watch the news or read it. If I read the paper it's the local one. I may catch some news here and there when I'm at a patient's house and they are watching it. I've found that I usually hear the most important news from other people when they talk about it. I do occasionally turn on Fox News in the morning, but it's while I'm drying my hair, so I can't really hear what they are saying.
10. Would you rather go to a carnival or circus?
Probably a circus. It just seems cleaner and safer than a carnival. If I had my druthers, I wouldn't go to either.
11. When you were twelve years old, what did you want to be when you grew up?
A stay at home mom. For real. I have it written down. I wanted two kids, a boy and a girl.
12. Best Movie You've Seen This Year?
I haven't seen many. I really liked Crash (on DVD), but I wouldn't say it's the best movie I've seen. As far as kid's movies go (which is what I normaly see), Barnyard was pretty good.
13.Favoritee alcoholic drink
I don't drink alcohol anymore. But, in the past I liked a Tom Collins.
14. What is the first thing you do when you wake up in the morning?
Pray.
15. Siblings?
None. I'm an only.
16. What is the best thing about your job?
Being a home health nurse, you get to connect to your patients on a very personal level. You're in their environment. You learn so much more about them that way. Patients are so much more than their disease or their symptoms. I think sometimes that gets forgotten in the hospital setting or the Dr's office. I have had a few of my patients for 8 years. They are almost like family.
17. Have you ever gone to therapy?
I've only been to physical therapy (for my wrist). I had my last session on Wednesday. Yeah!!!!
18. If you could have one super power what would it be?
OK, that's a hard question. I'm not sure I'd really want one. The first thing I thought of was the power to heal people. I could heal Riley, but then I'd have people hounding me 24/7 to be healed also. So, no super powers for me. Oh well, I guess it would be neat to be able to fly. Yeah, flying would be nice.
19. Do you own any furniture from Ikea?
I don't even know what Ikea is. I must google it later.
20. Have you ever gone camping?
Once when I was about 8 or 9. I don't remember enjoying it very much.
21. Gas prices! First thought?
Absolutely ridiculous. ( but, they're coming down a little, very little)
22. Your favorite cartoon character?
Spongebob or Patrick
23. What was your first car?
A red Buick Skylark. I got it for my 16th birthday.
24. Do you think marriage is an outdated ritual?
No.
25. The Cosby Show or the Simpsons?
Defiantly The Cosby Show. Bill Cosby if a funny man. Homer Simpson, not so much.
26. Do you go to church?
Yes. I don't remember the last Sunday that I wasn't in church. I go almost every Wednesday night too.
27. What famous person would you like to have dinner with?
I don't know. Maybe Keanu Reeves. I've always like him. He's so private. It would be neat to see what he's really like. (Yes, Michael, of course I would bring you along too)
28. What errand/chore do you despise?
Laundry. It is just never-ending. By the time I get the hamper empty, I turn around and it's half full again.
29. First thought when the alarm went off this morning?
"Must get up and take Holden to school. " It was no easy task dragging myself out of bed this morning. I have a horrible cold and a sore throat. I also am having the worst back pain I've ever had. I don't know why I'm having the back pain. I really wanted to stay under the covers, but I did have to get Holden to school, and I had to get up and feed Riley breakfast.
30. Last time you puked from drinking?
Never.
31. What is your heritage?
Not sure. Um, I'm American?
32. Favorite flower?
Sunflower (see #4)
33. Disney or Warner Bros?
Warner Bros, I guess. I used to love Bugs Bunny. I've never been much of a fan of Mickey. I think he's boring and his voice annoys the heck out of me.
34. What is your best childhood memory?
When I was younger my family used to stay in a cottage at Nags Head for one week every summer. It was me, my parents, both of my mom's sisters and their husbands my cousin, Curt, and my mom's parents (Pop and Big Mama... gosh, I miss them sooo much). I have a lot of good memories from those days.
35. Your favorite potato chip?
Pringles. I can't eat just one.
36. What is your favorite candy?
I'm not a big fan of sweets, but if I had to have something, I'd pick a Reese's Cup.
37. Do you burn or tan?
Both. Doesn't everyone?
38. Astrological sign?
Scorpio
39. Do you own a gun?
No. I hate guns. They scare me.
40. What do you think of hot dogs?
I try not to. Especiallyy about what's in them. I eat them very, very rarely, maybe 2 0r 3 a year.
OK, that was fun and a nice change of pace. Feel free to join in if you'd like. Let me know if you decide to participate, so I can read your answers.
Now, on with the meme: (which I got from here)
1. Do you still have tonsils?
Yes, and I currently have a sore throat also.
2. Would you bungee jump?
Maybe at gunpoint. There may have been a time (many years ago) that I might have tried it, but the older I get the more of a wuss I become.
3. If You Could Do Anything In The World For A Living What Would It Be?
I've said pharmacist before, but I'm mad at pharmaceutical companies right now, so I guess I'll have to stick to my current job of being a nurse.
4. How many tattoos do you have?
One. A sunflower on the inside of my right ankle.
5. Your favorite fictional animal?
I just love Dori from Finding Nemo. She's funny. (OK, that's a weird question. Do most people have a favorite fictional animal?)
6. One person that never fails to make you laugh?
Holden. The kid is funny.
7. Do you consider yourself well organized?
No, not really. I just depends. When it comes to diabetes, yes I am, because I have to be. At my job, I'm moderately organized. My house is not organized at all.
8. Any Addictions?
Nope. Unless you count Thursday night TV (pretty much the only night I watch TV on a regular basis; I love Survivor, CSI, and ER. Did anyone see ER last night? It made me cry several times.). I may also be addicted to Zuma. Never heard of it? Go here to play it. But, be warned. I am not responsible for your laundry piling up while you try to shoot colored beads out of a frog's mouth.
9. From what news source do you receive the bulk of your news?
I hate to admit it, but I don't really watch the news or read it. If I read the paper it's the local one. I may catch some news here and there when I'm at a patient's house and they are watching it. I've found that I usually hear the most important news from other people when they talk about it. I do occasionally turn on Fox News in the morning, but it's while I'm drying my hair, so I can't really hear what they are saying.
10. Would you rather go to a carnival or circus?
Probably a circus. It just seems cleaner and safer than a carnival. If I had my druthers, I wouldn't go to either.
11. When you were twelve years old, what did you want to be when you grew up?
A stay at home mom. For real. I have it written down. I wanted two kids, a boy and a girl.
12. Best Movie You've Seen This Year?
I haven't seen many. I really liked Crash (on DVD), but I wouldn't say it's the best movie I've seen. As far as kid's movies go (which is what I normaly see), Barnyard was pretty good.
13.Favoritee alcoholic drink
I don't drink alcohol anymore. But, in the past I liked a Tom Collins.
14. What is the first thing you do when you wake up in the morning?
Pray.
15. Siblings?
None. I'm an only.
16. What is the best thing about your job?
Being a home health nurse, you get to connect to your patients on a very personal level. You're in their environment. You learn so much more about them that way. Patients are so much more than their disease or their symptoms. I think sometimes that gets forgotten in the hospital setting or the Dr's office. I have had a few of my patients for 8 years. They are almost like family.
17. Have you ever gone to therapy?
I've only been to physical therapy (for my wrist). I had my last session on Wednesday. Yeah!!!!
18. If you could have one super power what would it be?
OK, that's a hard question. I'm not sure I'd really want one. The first thing I thought of was the power to heal people. I could heal Riley, but then I'd have people hounding me 24/7 to be healed also. So, no super powers for me. Oh well, I guess it would be neat to be able to fly. Yeah, flying would be nice.
19. Do you own any furniture from Ikea?
I don't even know what Ikea is. I must google it later.
20. Have you ever gone camping?
Once when I was about 8 or 9. I don't remember enjoying it very much.
21. Gas prices! First thought?
Absolutely ridiculous. ( but, they're coming down a little, very little)
22. Your favorite cartoon character?
Spongebob or Patrick
23. What was your first car?
A red Buick Skylark. I got it for my 16th birthday.
24. Do you think marriage is an outdated ritual?
No.
25. The Cosby Show or the Simpsons?
Defiantly The Cosby Show. Bill Cosby if a funny man. Homer Simpson, not so much.
26. Do you go to church?
Yes. I don't remember the last Sunday that I wasn't in church. I go almost every Wednesday night too.
27. What famous person would you like to have dinner with?
I don't know. Maybe Keanu Reeves. I've always like him. He's so private. It would be neat to see what he's really like. (Yes, Michael, of course I would bring you along too)
28. What errand/chore do you despise?
Laundry. It is just never-ending. By the time I get the hamper empty, I turn around and it's half full again.
29. First thought when the alarm went off this morning?
"Must get up and take Holden to school. " It was no easy task dragging myself out of bed this morning. I have a horrible cold and a sore throat. I also am having the worst back pain I've ever had. I don't know why I'm having the back pain. I really wanted to stay under the covers, but I did have to get Holden to school, and I had to get up and feed Riley breakfast.
30. Last time you puked from drinking?
Never.
31. What is your heritage?
Not sure. Um, I'm American?
32. Favorite flower?
Sunflower (see #4)
33. Disney or Warner Bros?
Warner Bros, I guess. I used to love Bugs Bunny. I've never been much of a fan of Mickey. I think he's boring and his voice annoys the heck out of me.
34. What is your best childhood memory?
When I was younger my family used to stay in a cottage at Nags Head for one week every summer. It was me, my parents, both of my mom's sisters and their husbands my cousin, Curt, and my mom's parents (Pop and Big Mama... gosh, I miss them sooo much). I have a lot of good memories from those days.
35. Your favorite potato chip?
Pringles. I can't eat just one.
36. What is your favorite candy?
I'm not a big fan of sweets, but if I had to have something, I'd pick a Reese's Cup.
37. Do you burn or tan?
Both. Doesn't everyone?
38. Astrological sign?
Scorpio
39. Do you own a gun?
No. I hate guns. They scare me.
40. What do you think of hot dogs?
I try not to. Especiallyy about what's in them. I eat them very, very rarely, maybe 2 0r 3 a year.
OK, that was fun and a nice change of pace. Feel free to join in if you'd like. Let me know if you decide to participate, so I can read your answers.
Saturday, September 16, 2006
Being me
In a few weeks Riley will have had diabetes for a year. Recently I realized that I had fooled myself into thinking that I'd just gone on with my life. I hadn't. I had let diabetes take precedence over things. As much as I've tried to lie to myself and say that I fit diabetes into life, it was just the opposite. I fit life into diabetes.
I didn't realize this until last week. Something happened that woke me up to the fact that I had lost parts of myself to this disease. Big parts. Important parts.
I've said before that being a mother comes first in my life. But, when diabetes entered the picture, I wasn't just a regular ole' mom, I became the mother of a diabetic. I went into "Mama Bear mode". I wasn't going to let diabetes take anything away from Riley's life. I was going to make sure that Riley's life was just as full as it was before diabetes, maybe even more so. But, in focusing on Riley's happiness, I forgot about my own.
It's like I forgot that I'm more than the mother of a diabetic. I'm also the mother of a teenager. A teenager that three years from now will be gone off to college. I thought I was there for Holden all this time. I showed up at games. I listened whenever he decided to share parts of his life with me. But, was I really there? Was that really me, or was it just what was left after diabetes got it's part?
I'm also a wife. This is where I feel like I've failed the most over the past year. Michael and I have always been very close. He's my best friend. We are one of those couples that, with the exception of at work, you never see one without the other. We do everything together.
Over the last year, that hadn't changed. We still went just about everywhere together. But, once again, was I really there?
I feel like it's almost an art to learn how to maintain the best possible control over the sugars without letting the sugars become a part of you. It's hard. Really hard. I thought I was doing a good job. I thought I'd just made it part of life. We still did the same things as a family as we used to. But, now I realize, I wasn't really there.
I have tried so hard over the last year to teach Riley that he's so much more than a reading on a glucose monitor. That he can do anything he wants. That while it's important to maintain good control, it's most important that while he's doing that he enjoys life too.
I've been trying to teach him that without living it myself. I know that children learn the most by example. What sort of example am I setting for him? He knows the technical stuff. Just today I asked him what he does when his sugar is low. "Eat fruit snacks", he said with a little grin (he really likes fruit snacks). And, what do you do if you're sugar is too high. Again, he gave the right answer, "Take insulin".
While the technical stuff is important, I don't want Riley to let his life revolve around it. Maybe it's unrealistic to think that diabetes won't alter the paths that Riley chooses. I want him to make his decisions, not based on a disease, but based on what he really wants out of life.
If I want him to do that, then I must learn to do that myself. So, from now on, I'm no longer the mother of a diabetic. I'm the mother of a 15 year old and a 4 year old. I'm the wife of a wonderful man who would literally do anything for me. But, most importantly, I'm me.
I didn't realize this until last week. Something happened that woke me up to the fact that I had lost parts of myself to this disease. Big parts. Important parts.
I've said before that being a mother comes first in my life. But, when diabetes entered the picture, I wasn't just a regular ole' mom, I became the mother of a diabetic. I went into "Mama Bear mode". I wasn't going to let diabetes take anything away from Riley's life. I was going to make sure that Riley's life was just as full as it was before diabetes, maybe even more so. But, in focusing on Riley's happiness, I forgot about my own.
It's like I forgot that I'm more than the mother of a diabetic. I'm also the mother of a teenager. A teenager that three years from now will be gone off to college. I thought I was there for Holden all this time. I showed up at games. I listened whenever he decided to share parts of his life with me. But, was I really there? Was that really me, or was it just what was left after diabetes got it's part?
I'm also a wife. This is where I feel like I've failed the most over the past year. Michael and I have always been very close. He's my best friend. We are one of those couples that, with the exception of at work, you never see one without the other. We do everything together.
Over the last year, that hadn't changed. We still went just about everywhere together. But, once again, was I really there?
I feel like it's almost an art to learn how to maintain the best possible control over the sugars without letting the sugars become a part of you. It's hard. Really hard. I thought I was doing a good job. I thought I'd just made it part of life. We still did the same things as a family as we used to. But, now I realize, I wasn't really there.
I have tried so hard over the last year to teach Riley that he's so much more than a reading on a glucose monitor. That he can do anything he wants. That while it's important to maintain good control, it's most important that while he's doing that he enjoys life too.
I've been trying to teach him that without living it myself. I know that children learn the most by example. What sort of example am I setting for him? He knows the technical stuff. Just today I asked him what he does when his sugar is low. "Eat fruit snacks", he said with a little grin (he really likes fruit snacks). And, what do you do if you're sugar is too high. Again, he gave the right answer, "Take insulin".
While the technical stuff is important, I don't want Riley to let his life revolve around it. Maybe it's unrealistic to think that diabetes won't alter the paths that Riley chooses. I want him to make his decisions, not based on a disease, but based on what he really wants out of life.
If I want him to do that, then I must learn to do that myself. So, from now on, I'm no longer the mother of a diabetic. I'm the mother of a 15 year old and a 4 year old. I'm the wife of a wonderful man who would literally do anything for me. But, most importantly, I'm me.
Friday, September 08, 2006
Feeling klempy
(note: I got the word "klempy" from Lyrecha. It is Yiddish for teary. Being a good ol' southern girl, I had never heard this word before, but I like it and it describes my mood perfectly.)
I have put off writing the post for a few days because I needed to get my emotions in check before writing it. I have been very klempy lately. Ever since Riley's diagnosis I have had times when I would tear up here and there, but usually I get out a good cry and it's over. But, this weepy time has lasted a little longer.
While I was in the car between patients yesterday, I started to analyze why I've been so down lately. Riley's sugars have been good (with the exception of yesterday). Work is going well. My family is healthy and happy. Life is good. So, what is wrong with me?
I think it comes down to a couple of things. First, the walk. I am organizing this walk all by myself. I've emailed, literally, hundreds of people. I've had meetings with people. The last meeting was with a marketing director at the local hospital, who was very helpful. But, the stress of organizing the walk is not what's getting to me. I can handle the stress. I think what's bothering me is having diabetes on my mind 24/7.
You would think I have diabetes on my mind 24/7 anyway. I don't. I used to in the beginning, But, now sometimes I'm almost on auto pilot. As much as I wish it wasn't , diabetes has just become a part of my life. But, to think about the walk, I have to think about a cure. That is what the walk is all about anyway. And, while I am very hopeful of a cure in the near future, I know that there may never be one.
Of course, I've been aware of this from the very beginning. As I've said before, in the beginning I didn't really believe there would ever be a cure anyway. But, to constantly be reminded every day that all of this could be for naught, has kind of worn on me.
The money from the walk is not just going to The Iacocca Foundation. The Iacocca Foundation funds many research projects. But, the money from Walk of Hope is earmarked to go only to the Nathan-Faustman Project. I really believe in Faustman's research. But, by putting my eggs all in one basket, I may just be setting myself up for heartache later if her human trials don't work. But, on the other hand, she needs $11 million for her research. Right now, she has $9 million. But, they've started their human clinical trials now in hopes that the rest of the money will come later. While I know if she starts showing some success more money will poor in, I keep thinking that what if they are in the middle of some very promising research and they run out of money. That would just be horrible.
I am mainly doing this walk because I want to be able to tell Riley I did what I could to help make a cure happen. Like I told my mom the other day, if I just sat back and waited for a cure and that cure never came, I would feel like it was partly my fault because I didn't do what I should. But, by putting the money into one project, if that project fails, I'll feel like what I did was all in vain. Yet, at the same time, I feel compelled to put the money there. I don't usually second guess myself. I don't know what's wrong with me.
While the walk and the thought of a cure (or lack of one), is weighing on me, it is not the sole reason for all of my emotions as of late.
Riley's anniversary is 4 weeks away. I remember early on saying I would not do anything to commemorate that day. I felt like it would be like the anniversary of the death of a loved one. While you remember that loved one on that day and think of how you miss them, it doesn't consume your day. Well, almost a year later, I am commemorating that day in a way. Riley's anniversary is Oct 6th. The walk is Oct 7th. I wanted to do something positive. What is more positive than raising money to find a cure?
It's not the date that is bothering me as much as the fact that Riley has lived with this disease for almost a year. For some reason that really hits me hard. I didn't really know why until a couple of nights ago.
I was lying in bed with my head on Michael's chest. As I was lying there I started thinking about how I remember things as before diabetes and after diabetes. I don't have the best memory when it comes to when things happened. So, when something is mentioned that happened last year, I think "Was that before Riley had D or after?".
But, as I'm lying there it hit me that I only have a few weeks before I won't be able to say, "Last year when Riley didn't have diabetes" For some reason, that's very painful for me. That's when the tears started, softly, at first, just enough to let Michael know by the wetness falling on his chest. But, then it was the sobbing that I did so often in the beginning of this disease.
I think it's almost like when you lose a loved one and your scared you'll forget what they looked like or how their voice sounded. I'm scared I won't remember life before diabetes. I won't remember Riley without his pump. I won't remember going to a birthday party and not carefully eyeballing his piece of cake. I won't remember watching him run around and around without wondering if I should decrease his basal.
But, what hurts the most, is I know Riley will not remember life like that. He was 3 when this stupid disease invaded his body. He will have no memory of the day when he didn't wear a pump or check his sugar. Sometimes I think it might be a good thing he got it so early. I guess you can't miss what you don't remember. But, it hurts that he may never know what it's like to not have diabetes as a part of his life.
So, that's why I've been down for the last few days. But, I really am feeling better now. While I was in the car analyzing why I was feeling like I do, I was listening to a CD that I hadn't listened to in a while. I had turned it down to call my mom to check on how Riley was doing. When I turned it back up a song was on that I usually skip over. It's not one of my favorites. But, the chorus was on and it caught my attention. It reminded me that even though I don't know what the future might bring, I do know that we'lll be OK. It gave me the peace that I needed to go on.
I have put off writing the post for a few days because I needed to get my emotions in check before writing it. I have been very klempy lately. Ever since Riley's diagnosis I have had times when I would tear up here and there, but usually I get out a good cry and it's over. But, this weepy time has lasted a little longer.
While I was in the car between patients yesterday, I started to analyze why I've been so down lately. Riley's sugars have been good (with the exception of yesterday). Work is going well. My family is healthy and happy. Life is good. So, what is wrong with me?
I think it comes down to a couple of things. First, the walk. I am organizing this walk all by myself. I've emailed, literally, hundreds of people. I've had meetings with people. The last meeting was with a marketing director at the local hospital, who was very helpful. But, the stress of organizing the walk is not what's getting to me. I can handle the stress. I think what's bothering me is having diabetes on my mind 24/7.
You would think I have diabetes on my mind 24/7 anyway. I don't. I used to in the beginning, But, now sometimes I'm almost on auto pilot. As much as I wish it wasn't , diabetes has just become a part of my life. But, to think about the walk, I have to think about a cure. That is what the walk is all about anyway. And, while I am very hopeful of a cure in the near future, I know that there may never be one.
Of course, I've been aware of this from the very beginning. As I've said before, in the beginning I didn't really believe there would ever be a cure anyway. But, to constantly be reminded every day that all of this could be for naught, has kind of worn on me.
The money from the walk is not just going to The Iacocca Foundation. The Iacocca Foundation funds many research projects. But, the money from Walk of Hope is earmarked to go only to the Nathan-Faustman Project. I really believe in Faustman's research. But, by putting my eggs all in one basket, I may just be setting myself up for heartache later if her human trials don't work. But, on the other hand, she needs $11 million for her research. Right now, she has $9 million. But, they've started their human clinical trials now in hopes that the rest of the money will come later. While I know if she starts showing some success more money will poor in, I keep thinking that what if they are in the middle of some very promising research and they run out of money. That would just be horrible.
I am mainly doing this walk because I want to be able to tell Riley I did what I could to help make a cure happen. Like I told my mom the other day, if I just sat back and waited for a cure and that cure never came, I would feel like it was partly my fault because I didn't do what I should. But, by putting the money into one project, if that project fails, I'll feel like what I did was all in vain. Yet, at the same time, I feel compelled to put the money there. I don't usually second guess myself. I don't know what's wrong with me.
While the walk and the thought of a cure (or lack of one), is weighing on me, it is not the sole reason for all of my emotions as of late.
Riley's anniversary is 4 weeks away. I remember early on saying I would not do anything to commemorate that day. I felt like it would be like the anniversary of the death of a loved one. While you remember that loved one on that day and think of how you miss them, it doesn't consume your day. Well, almost a year later, I am commemorating that day in a way. Riley's anniversary is Oct 6th. The walk is Oct 7th. I wanted to do something positive. What is more positive than raising money to find a cure?
It's not the date that is bothering me as much as the fact that Riley has lived with this disease for almost a year. For some reason that really hits me hard. I didn't really know why until a couple of nights ago.
I was lying in bed with my head on Michael's chest. As I was lying there I started thinking about how I remember things as before diabetes and after diabetes. I don't have the best memory when it comes to when things happened. So, when something is mentioned that happened last year, I think "Was that before Riley had D or after?".
But, as I'm lying there it hit me that I only have a few weeks before I won't be able to say, "Last year when Riley didn't have diabetes" For some reason, that's very painful for me. That's when the tears started, softly, at first, just enough to let Michael know by the wetness falling on his chest. But, then it was the sobbing that I did so often in the beginning of this disease.
I think it's almost like when you lose a loved one and your scared you'll forget what they looked like or how their voice sounded. I'm scared I won't remember life before diabetes. I won't remember Riley without his pump. I won't remember going to a birthday party and not carefully eyeballing his piece of cake. I won't remember watching him run around and around without wondering if I should decrease his basal.
But, what hurts the most, is I know Riley will not remember life like that. He was 3 when this stupid disease invaded his body. He will have no memory of the day when he didn't wear a pump or check his sugar. Sometimes I think it might be a good thing he got it so early. I guess you can't miss what you don't remember. But, it hurts that he may never know what it's like to not have diabetes as a part of his life.
So, that's why I've been down for the last few days. But, I really am feeling better now. While I was in the car analyzing why I was feeling like I do, I was listening to a CD that I hadn't listened to in a while. I had turned it down to call my mom to check on how Riley was doing. When I turned it back up a song was on that I usually skip over. It's not one of my favorites. But, the chorus was on and it caught my attention. It reminded me that even though I don't know what the future might bring, I do know that we'lll be OK. It gave me the peace that I needed to go on.
Lord (I Don't Know) by Newsboys
You are the author of knowledge
You can redeem what's been done
You hold the present and all that's to come
Until Your everlasting kingdom
Chorus: Lord, I don't know where all this is going
Or how it all works out
Lead me to peace that is past understanding
A peace beyond all doubt
You are the God of tomorrow
Turning the darkness to dawn
Lifting the hopeless with hope to go on
You are the rock of all salvation
Oh, Lord you are the author
Redeeming what's been done
You hold us in the present
And all that is to come
Monday, September 04, 2006
A short update
Just wanted to stop in and say hi and update you on some going-ons.
First, the walk. So, far, I myself, have raised $565.00. I have two businesses that tell me the check is in the mail and I have about 10 people that have promised to give money before the walk. I have 3 other people helping to collect money and I don't know how much they've gotten so far. So, hopefully, there's much more coming.
Secondly, (also having to do with the walk), I have received pictures of 5 pwd. (Thank you Becky (mom to Grayson), Dave (dad to Andy), Scott, Kris (mom to Hayleigh), and Jen. ) I am still looking for more pictures if anyone is interested in sharing.
First, the walk. So, far, I myself, have raised $565.00. I have two businesses that tell me the check is in the mail and I have about 10 people that have promised to give money before the walk. I have 3 other people helping to collect money and I don't know how much they've gotten so far. So, hopefully, there's much more coming.
Secondly, (also having to do with the walk), I have received pictures of 5 pwd. (Thank you Becky (mom to Grayson), Dave (dad to Andy), Scott, Kris (mom to Hayleigh), and Jen. ) I am still looking for more pictures if anyone is interested in sharing.
Thirdly, Riley's sugars have been great lately. I just hate that as much as I'm enjoying it I'm also bracing myself for the next run of bad sugars. They usually show up just when I get comfortable with how things are going.
And last, but not least, I hope everyone enjoys their Labor Day!!
Sunday, August 27, 2006
The Faces of Diabetes
I've been trying to think of things to do at my Lee Iacocca walk. I want to have a booth with diabetes education in it. I truly believe that the public needs to know what Type1 is all about so they will be more willing to give money for research.
One other thing I'd like to do is have a presentation called "The Faces of Diabetes". I have access to a big screen and a projector and have a little knowledge when it comes to making a presentation. What I would like to do is show a little presentation of people who live with this disease on a daily basis. I want people to know how many lives this disease touches.
What do you think? Do you want to be included? If so, email me a picture of you or the pwd. Include as much info. as you're comfortable sharing (first name, age at diagnosis, diagnosis date, state in which you live, etc.) If you don't want to share any info. that will be fine too. (pennylane5001@mchsi.com)
So, you OC'ers, you lurkers, everyone. Help me out. Help me make this disease real to other people.
One other thing I'd like to do is have a presentation called "The Faces of Diabetes". I have access to a big screen and a projector and have a little knowledge when it comes to making a presentation. What I would like to do is show a little presentation of people who live with this disease on a daily basis. I want people to know how many lives this disease touches.
What do you think? Do you want to be included? If so, email me a picture of you or the pwd. Include as much info. as you're comfortable sharing (first name, age at diagnosis, diagnosis date, state in which you live, etc.) If you don't want to share any info. that will be fine too. (pennylane5001@mchsi.com)
So, you OC'ers, you lurkers, everyone. Help me out. Help me make this disease real to other people.
Friday, August 25, 2006
The cure debate
Sandra's post tonight got to me. It didn't just bring on the tears, it also made me evaluate the whole "hope for a cure" thing.
We attended a ballgame tonight at Michael's school. It's 45 minutes away. Before getting in the car to come home we checked his sugar. It was 488. (Wow, I handled it so well at the time, but now just typing the number is making me cry. I just want to inject right here, for the bizillionzth time, I HATE THIS DISEASE!!!!!!!)
Anyway, on the ride home we talked about the upcoming walk. And, I can't think of the walk without thinking of a cure. It seems that most people are very hopeful for a cure in the beginning, but as the years drag on they become less hopeful. I started out with no hope at all. For the first several months I would see someone post about a cure and just think "yeah, right". That's how I coped at the time.
But, I've been doing some research. There are a lot of great, great studies going on. But, my hope is all wrapped up in Dr. Faustman's research. I have read a great deal about what she is trying to do. I have seen a couple of interviews. This woman is for real. The first time I ever saw an interview with her, I just stared at her in awe. All I could think was of how many countless hours she has spent trying to cure my son and others like him. She's devoted her life to it. I cannot even begin to express the gratitude that I feel for her and the many others like her that are searching for a cure for this disease and all the other diseases out there too.
One reason I have to believe there will be a cure is because to believe otherwise would negate everything these people have done. I have so much admiration for these people (researchers). I can't just say, "I admire them, but I think they're wasting their time." Even if what they are doing doesn't find a cure, it still brings us closer to a cure. They can say "OK, tried that. It didn't work. Let's move on to something else."
But, the main reason I have to believe there will be a cure is because my baby believes that one day he will be cured. He, like Sandra's son Joseph, doesn't look into the future and see himself taking insulin. He sees himself "eating all the sugar I want" (direct quote from Riley) How do I look him in the eyes and say "Nope, don't think so." ? I can't. I won't.
While I will never try to squelch his hope, I do try my best to give him realistic expectations. For example, I have told him several times that if there is going to be a cure it is a long ways off. I don't put a time frame on it. Although, the number in my head is 10 years. I don't know why. But, Riley tells me he is going to get the cure when he's 10. That's 6 years from now. I just hope and pray that he knows something that I don't.
I don't feel that I've been very coherent with trying to get my point across here. What I'm trying to say is that everyone has their own coping mechanisms. Some people say there will never be a cure because if there isn't one they will just be disappointed. Some believe there will be a cure because they can't imagine dealing with it for the rest of their lives.
My point is, they are both right. I don't think anyone should try to convince someone of the cure if they don't want to be. And, I certainly don't believe that anyone should try to squash someone else's hope. Because, either way, they are doing what needs to be done to cope with the situation they are in.
But me, I'm on the hope team. I cannot imagine giving up and saying that Riley will never be cured. I just can't. Will I still feel this way 15 years from now if there's still not a cure? I don't know. I hope I won't have to find out.
We attended a ballgame tonight at Michael's school. It's 45 minutes away. Before getting in the car to come home we checked his sugar. It was 488. (Wow, I handled it so well at the time, but now just typing the number is making me cry. I just want to inject right here, for the bizillionzth time, I HATE THIS DISEASE!!!!!!!)
Anyway, on the ride home we talked about the upcoming walk. And, I can't think of the walk without thinking of a cure. It seems that most people are very hopeful for a cure in the beginning, but as the years drag on they become less hopeful. I started out with no hope at all. For the first several months I would see someone post about a cure and just think "yeah, right". That's how I coped at the time.
But, I've been doing some research. There are a lot of great, great studies going on. But, my hope is all wrapped up in Dr. Faustman's research. I have read a great deal about what she is trying to do. I have seen a couple of interviews. This woman is for real. The first time I ever saw an interview with her, I just stared at her in awe. All I could think was of how many countless hours she has spent trying to cure my son and others like him. She's devoted her life to it. I cannot even begin to express the gratitude that I feel for her and the many others like her that are searching for a cure for this disease and all the other diseases out there too.
One reason I have to believe there will be a cure is because to believe otherwise would negate everything these people have done. I have so much admiration for these people (researchers). I can't just say, "I admire them, but I think they're wasting their time." Even if what they are doing doesn't find a cure, it still brings us closer to a cure. They can say "OK, tried that. It didn't work. Let's move on to something else."
But, the main reason I have to believe there will be a cure is because my baby believes that one day he will be cured. He, like Sandra's son Joseph, doesn't look into the future and see himself taking insulin. He sees himself "eating all the sugar I want" (direct quote from Riley) How do I look him in the eyes and say "Nope, don't think so." ? I can't. I won't.
While I will never try to squelch his hope, I do try my best to give him realistic expectations. For example, I have told him several times that if there is going to be a cure it is a long ways off. I don't put a time frame on it. Although, the number in my head is 10 years. I don't know why. But, Riley tells me he is going to get the cure when he's 10. That's 6 years from now. I just hope and pray that he knows something that I don't.
I don't feel that I've been very coherent with trying to get my point across here. What I'm trying to say is that everyone has their own coping mechanisms. Some people say there will never be a cure because if there isn't one they will just be disappointed. Some believe there will be a cure because they can't imagine dealing with it for the rest of their lives.
My point is, they are both right. I don't think anyone should try to convince someone of the cure if they don't want to be. And, I certainly don't believe that anyone should try to squash someone else's hope. Because, either way, they are doing what needs to be done to cope with the situation they are in.
But me, I'm on the hope team. I cannot imagine giving up and saying that Riley will never be cured. I just can't. Will I still feel this way 15 years from now if there's still not a cure? I don't know. I hope I won't have to find out.
Tuesday, August 22, 2006
A little reminder
A while back, Riley was showing some interest in soccer. So, when we saw an article in the paper that showed they had sign-ups for soccer for Riley's age, we signed him up.
To say I wasn't a little anxious would be a lie. I wasn't too worried, but I did think about what the extra activity might do to his sugar. The thought of him falling out on the field did cross my mind.
Riley had his first practice today. I felt pretty good about it. He had just eaten about an hour prior to practice and was 292 when practice began. No real worry of him dropping too low.
Even so, when we pulled up to the field, I reminded Riley if he started to feel like his sugar was low that it was very important to tell someone. He said, " Well, Mom, I bet someone else here has diabetes too." I told him "probably not". All the time thinking we'd be lucky if anyone there even knew what Type 1 diabetes is.
His coach is a woman. About half way through the practice I noticed what was written on her T-shirt: Camp Needles In The Pines At first I wasn't sure why that sounded so familiar. But, when I realized where I had heard it before, my heart started to beat a little faster.
Camp Needles In The Pines is a camp in NC for children with diabetes. All I could think was "Why is she wearing that shirt? Maybe she works at the camp. Maybe her child has D." I quickly scanned the field for any signs of a kid with a pump. I didn't see one. Still, she had to be associated with diabetes in some way.
When practice was over, she came up to ask me if Riley was doing OK. She knew he has D because I had put it on the soccer application. Turns out she's a diabetes educator! That really helped to ease my nerves a bit. At least she knows something about diabetes and will most likely know when to alert me that something may be going on with Riley.
She brought snacks and juice for all the kids. She even had sugar free koolaide just for Riley. She made sure to tell me that it had 2g carbs in it.
I just feel so blessed right now. I don't think it's a coincidence that the soccer league that we signed Riley up for has a diabetes educator as a coach. And, she got to be Riley's coach. She's coaching Riley's age group because she has a son that is Riley's age.
Sometimes I get so wrapped up in the sugars and trying to control them that I forget who is really in charge. I think this just might be God's way of reminding me I'm not alone in all of this. He's watching out for Riley too.
To say I wasn't a little anxious would be a lie. I wasn't too worried, but I did think about what the extra activity might do to his sugar. The thought of him falling out on the field did cross my mind.
Riley had his first practice today. I felt pretty good about it. He had just eaten about an hour prior to practice and was 292 when practice began. No real worry of him dropping too low.
Even so, when we pulled up to the field, I reminded Riley if he started to feel like his sugar was low that it was very important to tell someone. He said, " Well, Mom, I bet someone else here has diabetes too." I told him "probably not". All the time thinking we'd be lucky if anyone there even knew what Type 1 diabetes is.
His coach is a woman. About half way through the practice I noticed what was written on her T-shirt: Camp Needles In The Pines At first I wasn't sure why that sounded so familiar. But, when I realized where I had heard it before, my heart started to beat a little faster.
Camp Needles In The Pines is a camp in NC for children with diabetes. All I could think was "Why is she wearing that shirt? Maybe she works at the camp. Maybe her child has D." I quickly scanned the field for any signs of a kid with a pump. I didn't see one. Still, she had to be associated with diabetes in some way.
When practice was over, she came up to ask me if Riley was doing OK. She knew he has D because I had put it on the soccer application. Turns out she's a diabetes educator! That really helped to ease my nerves a bit. At least she knows something about diabetes and will most likely know when to alert me that something may be going on with Riley.
She brought snacks and juice for all the kids. She even had sugar free koolaide just for Riley. She made sure to tell me that it had 2g carbs in it.
I just feel so blessed right now. I don't think it's a coincidence that the soccer league that we signed Riley up for has a diabetes educator as a coach. And, she got to be Riley's coach. She's coaching Riley's age group because she has a son that is Riley's age.
Sometimes I get so wrapped up in the sugars and trying to control them that I forget who is really in charge. I think this just might be God's way of reminding me I'm not alone in all of this. He's watching out for Riley too.
Saturday, August 19, 2006
A Special Bond
Michael came home from his first day back at school with some disturbing news. All the teachers had to stand up and do the "what I did over the summer" thing. A fellow teacher stood up and announced that her six year old daughter was diagnosed with Type 1 diabetes this summer.
Michael talked with her afterwards. Best I can gather she felt lost and scared and overwhelmed. I felt such empathy towards her.
Hearing of this little girl made me think back to those first few weeks after Riley's diagnoses. At first, I was just numb. I think I was in shock for a while. Actually, I know I was. Everything seemed surreal. I was poking my 3 year old with needles every day. That just couldn't be right. But, it was. And, over the first few weeks I had to somehow grasp that it wasn't going away.
Before diabetes entered our lives I had always thought I was a strong person. I could withstand whatever came my way. I had what I call the "nurse mentality". I was very good at being strong and keeping a level head in bad situations. If I needed to cry when the crisis was over, I could. But, those break downs hardly ever came.
After the shock and numbness wore off, I realized the "crisis" in this particular situation was never going to be over. I broke down several times a day. I'd cry myself to sleep at night. I'd sit on the edge of Riley's bed and watch him sleep as his sheets became damp with my tears.
I'd never cried like that before. This crying came from the depths of my soul. Places I never knew existed. I saw no end in site to my grief .
This super woman had found her kryptonite. Something bad happening to my child had incapacitated me. I felt weak and inadequate. I felt like a failure.
That's why when Michael came home with the news about his co-worker, I got a sinking feeling in the pit of my stomach. I don't know her. I don't even know her name. But, I know how she feels and my heart aches for her and her daughter.
When I went to the mailbox yesterday there was a special envelope. I knew it was coming and as soon as I saw it a huge grin spread over my face. In it was a donation for Walk Of Hope. This donation came from a woman I've never met. I have no idea what she looks like. She lives hundreds of miles away. But, yet, she felt a need to send a donation for our walk.
Why would she do this? Because her son was diagnosed with D when he was 3 1/2. Because she's felt all the same feelings about this disease that I have. Because, she looks into her son's eyes and envisions a day when he won't need insulin anymore.
We parents of children with diabetes have a special bond. I've rejoiced over Daniel's run of good blood sugars. I've cried over Danielle's diagnosis of Celiacs. I've swelled with pride over how Joseph stood up in front of a crowd and shared his experience with diabetes.
As much as I thought I'd lost my strength in the beginning of this journey, I now realize that I only stumbled. We parents of children with diabetes are a hearty crew. We are strong. We don't have a choice but to be. We all stumble occasionally and sometimes we fall. But we pick ourselves up and brush off our knees and trudge ahead for the sake of our children. They are watching us. They need us.
While I wish Riley had never gotten this disease, I am honored to be counted among the Sandras, Vivians, Jamies, Beckys....of the world. We do have a special bond.
But, I still mourn when another parent joins our ranks, because that bond we share is cemented in heartache.
Michael talked with her afterwards. Best I can gather she felt lost and scared and overwhelmed. I felt such empathy towards her.
Hearing of this little girl made me think back to those first few weeks after Riley's diagnoses. At first, I was just numb. I think I was in shock for a while. Actually, I know I was. Everything seemed surreal. I was poking my 3 year old with needles every day. That just couldn't be right. But, it was. And, over the first few weeks I had to somehow grasp that it wasn't going away.
Before diabetes entered our lives I had always thought I was a strong person. I could withstand whatever came my way. I had what I call the "nurse mentality". I was very good at being strong and keeping a level head in bad situations. If I needed to cry when the crisis was over, I could. But, those break downs hardly ever came.
After the shock and numbness wore off, I realized the "crisis" in this particular situation was never going to be over. I broke down several times a day. I'd cry myself to sleep at night. I'd sit on the edge of Riley's bed and watch him sleep as his sheets became damp with my tears.
I'd never cried like that before. This crying came from the depths of my soul. Places I never knew existed. I saw no end in site to my grief .
This super woman had found her kryptonite. Something bad happening to my child had incapacitated me. I felt weak and inadequate. I felt like a failure.
That's why when Michael came home with the news about his co-worker, I got a sinking feeling in the pit of my stomach. I don't know her. I don't even know her name. But, I know how she feels and my heart aches for her and her daughter.
When I went to the mailbox yesterday there was a special envelope. I knew it was coming and as soon as I saw it a huge grin spread over my face. In it was a donation for Walk Of Hope. This donation came from a woman I've never met. I have no idea what she looks like. She lives hundreds of miles away. But, yet, she felt a need to send a donation for our walk.
Why would she do this? Because her son was diagnosed with D when he was 3 1/2. Because she's felt all the same feelings about this disease that I have. Because, she looks into her son's eyes and envisions a day when he won't need insulin anymore.
We parents of children with diabetes have a special bond. I've rejoiced over Daniel's run of good blood sugars. I've cried over Danielle's diagnosis of Celiacs. I've swelled with pride over how Joseph stood up in front of a crowd and shared his experience with diabetes.
As much as I thought I'd lost my strength in the beginning of this journey, I now realize that I only stumbled. We parents of children with diabetes are a hearty crew. We are strong. We don't have a choice but to be. We all stumble occasionally and sometimes we fall. But we pick ourselves up and brush off our knees and trudge ahead for the sake of our children. They are watching us. They need us.
While I wish Riley had never gotten this disease, I am honored to be counted among the Sandras, Vivians, Jamies, Beckys....of the world. We do have a special bond.
But, I still mourn when another parent joins our ranks, because that bond we share is cemented in heartache.
Tuesday, August 15, 2006
Long time, no post
I have been neglecting the blog lately, but it hasn't been all me fault. The filter on my computer has decided to block blogger.com. So, I haven't been able to post. I am currently posting from my work computer (not on company time). I am trying to get this straight with the filter people. I have been reading blogs, but because of the filter am not able to comment on any that are written on blogspot. So, I haven't dropped off the face of the earth. I've just been blocked.
An update on the arm: I got my splint removed on July 26th and have been back at work since then. I am taking physical therapy, because there are still things I cannot do with my hand. ( I am still typing with one hand) But, I see progress every day in what I can do.
The walk: Walk of Hope is scheduled for October 7th. I have raised $325.00 so far ($300 of that came from local businesses). I have only had two people to volunteer to be on the team and help raise money. (out of about 60 people that have been asked) But, I'm trying to stay positive. Every little bit of money helps. Every little bit of money brings us closer to a cure.
Speaking of a cure, I got this from Vivian's blog. I know there are some that think there will never be a cure, but just humor me and go here and check out what Dr. Faustman has to say. Also, check out the podcast on the same page.
I was very impressed with what she had to say. She wasn't trying to give any false hope. She was very realistic that if what she is doing turns out to be a cure, it will still be a ways off. Right now, she is getting human blood samples and trying to identify the bad T cells that are causing the destruction of the beta cells.
On the diabetes front things are the same... up and down. We've had a few 300s and a few 60s and several numbers in between. But, Riley is happy and healthy. And, that's what really matters at the end of the day.
An update on the arm: I got my splint removed on July 26th and have been back at work since then. I am taking physical therapy, because there are still things I cannot do with my hand. ( I am still typing with one hand) But, I see progress every day in what I can do.
The walk: Walk of Hope is scheduled for October 7th. I have raised $325.00 so far ($300 of that came from local businesses). I have only had two people to volunteer to be on the team and help raise money. (out of about 60 people that have been asked) But, I'm trying to stay positive. Every little bit of money helps. Every little bit of money brings us closer to a cure.
Speaking of a cure, I got this from Vivian's blog. I know there are some that think there will never be a cure, but just humor me and go here and check out what Dr. Faustman has to say. Also, check out the podcast on the same page.
I was very impressed with what she had to say. She wasn't trying to give any false hope. She was very realistic that if what she is doing turns out to be a cure, it will still be a ways off. Right now, she is getting human blood samples and trying to identify the bad T cells that are causing the destruction of the beta cells.
On the diabetes front things are the same... up and down. We've had a few 300s and a few 60s and several numbers in between. But, Riley is happy and healthy. And, that's what really matters at the end of the day.
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