Emergency relief. Disasters. They all take place on the news. Hurricanes hit tropical places like Florida, Cuba and other winter getaways. Earthquakes are for California or China. Flooding is for places like India. They all take place on our TVs and never impact us right? Wrong.
Some blame global warming, some say its because we can hear about it on our TVs more often but no matter how you slice it, no matter where you live, you should be prepared for an emergency due to an act of nature. Mother Nature does not care where you live or what you have experienced. If she decides to throw some severe weather at you, you are going to get it and you had better be prepared.
Recently, the area we live in was hit by a hurricane. We were very lucky in that it had been downgraded a lot by the time it reached us. That didn't stop it from destroying roads, cutting off power, phones, and Internet service, isolating many areas, and damaging homes. We were very lucky. Our power stayed on after blinking a few times. Our Internet hung in there after threatening to crash and our house stayed in one piece. We were able to watch debris fly by and gawk at the rivers flowing in what were city streets just a few hours before.
Did I have an emergency kit prepared? Would I have been ready to evacuate our house at a minutes notice? The answer is no. I do keep extra supplies available. We would have had enough test strips, insulin and pump supplies to last us in isolation for a week or two but I would not have been prepared to leave our house. That is something I may have to fix.
Living where I do, and where I have lived previously, I tend to worry more about being stuck in our home and not being able to get out. I have seen power outages, ice storms, and roads blocked by snow or rain washouts. I am great at stockpiling. We usually have water stored. I have a lot of candles around and try to make sure that we have a lighter somewhere--there is something to be said for the days when everyone smoked, there was always a lighter handy!
Its easy to make light of Mother Nature when you have managed to avoid the bulk of her wrath. A friend kindly told me the other day that it was all of the good karma I have accumulated over the years for all of the diabetes work I do that protected us. I don't know if that had anything to do with it but I will take all the good karma I can get and I will rework our diabetes drawer to be more emergency prepared.
Take a look at your region. Are you ready to be evacuated because of flooding or landslides? Could you be hit by an earthquake or socked in by a snow or ice storm? Never take for granted where you live. When a chronic illness is in your house, make sure you are prepared for the worst. If you are unsure what people keep in their diabetes emergency kit, please look at the list we compiled at http://www.diabetesadvocacy.com/emergencysupplies.htm and lets all be safe!
Thursday, September 30, 2010
Wednesday, September 29, 2010
We've all got something
This week I finally got a chance to sit down with my son's teachers, the principal and the lady in charge of special education to talk about diabetes as it pertains to my child. I appreciated the opportunity and once again was a little nervous going in. I reminded myself that I talk to people about this very subject--how to speak with your school about your child's diabetes. Why was I so worried about my prep? Why was I concerned about how I would be received? Because I am human. Because I am a mom. Because I have been educating people for over ten and a half years and still am lucky if I get through to a quarter of them.
I worried, who would show up. Would I hold their attention? Would they be willing to learn? There was a teacher who had a diabetes connection in her family, would she know everything? Would she know anything? Yep, basically I was terribly paranoid.
The school has been wonderful to date. Its another small school and my son seems to have quickly become comfortable there. He is still a quiet child but he is involved in their lunchtime sports and comes home talking about various students in his class and things that they have done. That is definitely a huge weight off of my shoulders. That also made me anxious about going in and making more demands.
It was vital however that they understand how the brain functions (or doesn't function) when high or low. I had to make them understand that he was private and often would not tell people when he was out of whack. I did not want to come across as a demanding parent but these were important concerns. These were things that would impact his academic career.
Things went well. Everyone was very open and willing to learn. One teacher did know about this and that...and she truly did. She even asked if he carried Glucagon. The other teachers asked questions and the principal began to work out a plan on how best to deal with the issues at hand. Teachers were fine with readings being written on exams or writing them when in range if need be. YES! One victory. The next issue was how to make the other children aware of his diabetes. We all agreed that other students are our best protection. They see more, they are with him more, they can help a lot more than most adults in many situations. The next question was how would we handle this? How do we get my son to talk about his disease? According to him, no one in his class knows he has diabetes. This had to change.
The conversation led to another person at the table stating that she wished her daughter would open up more about the learning issues that she faced. As I sat at the table I realized that in that small class, many students were facing some sort of a challenge. It may have been physical as in my son's case or it may be something that challenged how they learn. Everyone has something. Everyone carries some burden. Everyone faces challenges. That became the angle that one teacher decided to take. It was decided that diabetes would be a health topic but discussing your own issue and the battle you face would be a project that all students would do in another class as well.
This should be interesting. My son does not talk about his disease. He probably figures that Mom talks enough for the entire family and then some. At breakfast we discussed how important it was that he talk. He needs to have people around who know that he has diabetes and who can help him in an emergency. In his old school, his friends had grown up with diabetes. In our new area education is just beginning. I hope he opens up a bit at least with a few students. Time will tell I guess.
I worried, who would show up. Would I hold their attention? Would they be willing to learn? There was a teacher who had a diabetes connection in her family, would she know everything? Would she know anything? Yep, basically I was terribly paranoid.
The school has been wonderful to date. Its another small school and my son seems to have quickly become comfortable there. He is still a quiet child but he is involved in their lunchtime sports and comes home talking about various students in his class and things that they have done. That is definitely a huge weight off of my shoulders. That also made me anxious about going in and making more demands.
It was vital however that they understand how the brain functions (or doesn't function) when high or low. I had to make them understand that he was private and often would not tell people when he was out of whack. I did not want to come across as a demanding parent but these were important concerns. These were things that would impact his academic career.
Things went well. Everyone was very open and willing to learn. One teacher did know about this and that...and she truly did. She even asked if he carried Glucagon. The other teachers asked questions and the principal began to work out a plan on how best to deal with the issues at hand. Teachers were fine with readings being written on exams or writing them when in range if need be. YES! One victory. The next issue was how to make the other children aware of his diabetes. We all agreed that other students are our best protection. They see more, they are with him more, they can help a lot more than most adults in many situations. The next question was how would we handle this? How do we get my son to talk about his disease? According to him, no one in his class knows he has diabetes. This had to change.
The conversation led to another person at the table stating that she wished her daughter would open up more about the learning issues that she faced. As I sat at the table I realized that in that small class, many students were facing some sort of a challenge. It may have been physical as in my son's case or it may be something that challenged how they learn. Everyone has something. Everyone carries some burden. Everyone faces challenges. That became the angle that one teacher decided to take. It was decided that diabetes would be a health topic but discussing your own issue and the battle you face would be a project that all students would do in another class as well.
This should be interesting. My son does not talk about his disease. He probably figures that Mom talks enough for the entire family and then some. At breakfast we discussed how important it was that he talk. He needs to have people around who know that he has diabetes and who can help him in an emergency. In his old school, his friends had grown up with diabetes. In our new area education is just beginning. I hope he opens up a bit at least with a few students. Time will tell I guess.
Friday, September 24, 2010
Pushy? Overprotective? or Educating?
Can you be too pushy? Too demanding? I know that you can be but where is that line?
I received an email from my son's principal yesterday with a time and date for us to meet regarding his care in school. I was very pleased that time had been taken for a meeting to discuss with them my experiences and concerns. After 24 hours, I began to consider who would be at this meeting. It was to be small, which was fine but then I realized that the people involved were his home room teacher, the principal and a special education teacher. The home room teacher also teaches him two other classes so that was fine but why a special ed teacher? He has no learning disabilities. He has a physical condition that can impair his thinking but we do not need special learning techniques or anything like that.
I then realized that we were missing a few key teachers from core subjects. I emailed the principal back today and asked about at least one other teacher that I felt should be there. I explained that I understood that they had had an in service with a nurse but there were cognitive issues around testing and homework that needed to be discussed. She emailed me back and said that she would invite all of his teachers to attend. I truly appreciated that she did this and I hope most, if not all, will attend but I began to wonder if I was being too pushy.
One teacher is hypoglycemic and another told my son that she also has a child with Type 1. These two people should be a major help but I still worry. How long have they been dealing with this? Do they truly understand all of the implications? Are they looking at me like an overprotective nutcase? Am I an overprotective nutcase?
I don't think so. I think I am an educated person who sadly has had to learn that this is a disease about more than just taking insulin and testing. I have seen the impact of highs and lows on my child's body as well as his mind. I have seen him high and unable to answer basic questions in class. I have seen him low and unable to write at all.
So many people still think of diabetes as "Grandma's disease". Very few people understand the magnitude of how it affects the mind and the body. Many people do not understand how quickly changes can occur. Most people have never had to see the other side of diabetes. They have not seen the unresponsive loved one who has gone so low that they are slipping unconscious. They have not seen the child who cannot see or grasp how to turn on a light. They have not seen a person so weak from ketones that its all they can do to get to the toilet to vomit.
I guess in this case, its my job to make sure that they understand. Its my job to warn them and prepare them. Its not just about protecting my child but its also about making them aware and ready to handle these things when it happens in their classroom. Hopefully if they think I am overprotective today, they will thank me later when they begin to understand and see for themselves what diabetes can look like up close.
I received an email from my son's principal yesterday with a time and date for us to meet regarding his care in school. I was very pleased that time had been taken for a meeting to discuss with them my experiences and concerns. After 24 hours, I began to consider who would be at this meeting. It was to be small, which was fine but then I realized that the people involved were his home room teacher, the principal and a special education teacher. The home room teacher also teaches him two other classes so that was fine but why a special ed teacher? He has no learning disabilities. He has a physical condition that can impair his thinking but we do not need special learning techniques or anything like that.
I then realized that we were missing a few key teachers from core subjects. I emailed the principal back today and asked about at least one other teacher that I felt should be there. I explained that I understood that they had had an in service with a nurse but there were cognitive issues around testing and homework that needed to be discussed. She emailed me back and said that she would invite all of his teachers to attend. I truly appreciated that she did this and I hope most, if not all, will attend but I began to wonder if I was being too pushy.
One teacher is hypoglycemic and another told my son that she also has a child with Type 1. These two people should be a major help but I still worry. How long have they been dealing with this? Do they truly understand all of the implications? Are they looking at me like an overprotective nutcase? Am I an overprotective nutcase?
I don't think so. I think I am an educated person who sadly has had to learn that this is a disease about more than just taking insulin and testing. I have seen the impact of highs and lows on my child's body as well as his mind. I have seen him high and unable to answer basic questions in class. I have seen him low and unable to write at all.
So many people still think of diabetes as "Grandma's disease". Very few people understand the magnitude of how it affects the mind and the body. Many people do not understand how quickly changes can occur. Most people have never had to see the other side of diabetes. They have not seen the unresponsive loved one who has gone so low that they are slipping unconscious. They have not seen the child who cannot see or grasp how to turn on a light. They have not seen a person so weak from ketones that its all they can do to get to the toilet to vomit.
I guess in this case, its my job to make sure that they understand. Its my job to warn them and prepare them. Its not just about protecting my child but its also about making them aware and ready to handle these things when it happens in their classroom. Hopefully if they think I am overprotective today, they will thank me later when they begin to understand and see for themselves what diabetes can look like up close.
Monday, September 20, 2010
Selfish
Its been ages since we have had any sort of a low. We have been fighting highs and puberty for months. A good day sees numbers that are at least in range but a low? What are those? Funny though, when a low does arrive it always happens at night.
Last night I was sleeping in bed and had no desire to get up. I began to think that one night without testing would not be a bad thing. Maybe this one night I could sleep through and I would get my son to wake up one night to test to give me a break next week. It sounded like a great plan. He had been in range or high most nights. I could take a night off. It would be good for me. I know I was awake but still not having to physically get out of bed? Yeah, that was the ticket. That was what I should do. I was tired. I owed it to me. I should stay in bed and go back to sleep.
After such a long debate, you know that I got out of bed. I was awake. I felt guilty. I felt selfish for wanting to sleep when my child should be tested. I got out of bed. I crossed the hall and tested. I then wanted to cry. He was low. Granted he was not rock bottom, freak me out, this will take days to come up low. He was just a lot lower than I like to see him at night low and needs 20g of carbohydrate low. I fed him his glucose gel because he was semi awake and wanted to try it.
I left his room telling him to sleep and I would be back to test him. I grabbed my book and curled up on the couch hoping not to wake anyone else in the house while I waited. As I walked away I so wanted to cry. I get that feeling often when treating a low at night. Its the desire to cry with relief because of all of the "what ifs" that run through your head. Its the desire to cry for that selfish reason--you are dead tired and just want to be able to sleep without being on guard all of the time. Its the selfish frustration that says, "I have been doing this for over ten years now and I want a break but I can't and he will never have that break until a cure is found. " Its that selfish craving to live a life like others who can sleep and just get up in the morning after complaining that the cat next door kept them up all night rather than their own worrying and nerves about the safety and health of their child kept them up. I know I am not alone. I know that diabetes is not the only disease that leaves parents worrying. All of that adds to making you feel worse.
I crawl back into bed after adding that extra five grams of carbs "just in case" and I want to cry because I have been so selfish. Others have it worse. It could have been worse for me. I only have one child to deal with. I am able to work from home and can sit at my computer screen in my pyjamas for hours before I get my body working if I want. I just end up feeling selfish...and tired. So is life when diabetes lives in your house. Could it please move to its own house with no one in it but itself? I guess not. Time to suck it up and be grateful to see another day with my son.
Last night I was sleeping in bed and had no desire to get up. I began to think that one night without testing would not be a bad thing. Maybe this one night I could sleep through and I would get my son to wake up one night to test to give me a break next week. It sounded like a great plan. He had been in range or high most nights. I could take a night off. It would be good for me. I know I was awake but still not having to physically get out of bed? Yeah, that was the ticket. That was what I should do. I was tired. I owed it to me. I should stay in bed and go back to sleep.
After such a long debate, you know that I got out of bed. I was awake. I felt guilty. I felt selfish for wanting to sleep when my child should be tested. I got out of bed. I crossed the hall and tested. I then wanted to cry. He was low. Granted he was not rock bottom, freak me out, this will take days to come up low. He was just a lot lower than I like to see him at night low and needs 20g of carbohydrate low. I fed him his glucose gel because he was semi awake and wanted to try it.
I left his room telling him to sleep and I would be back to test him. I grabbed my book and curled up on the couch hoping not to wake anyone else in the house while I waited. As I walked away I so wanted to cry. I get that feeling often when treating a low at night. Its the desire to cry with relief because of all of the "what ifs" that run through your head. Its the desire to cry for that selfish reason--you are dead tired and just want to be able to sleep without being on guard all of the time. Its the selfish frustration that says, "I have been doing this for over ten years now and I want a break but I can't and he will never have that break until a cure is found. " Its that selfish craving to live a life like others who can sleep and just get up in the morning after complaining that the cat next door kept them up all night rather than their own worrying and nerves about the safety and health of their child kept them up. I know I am not alone. I know that diabetes is not the only disease that leaves parents worrying. All of that adds to making you feel worse.
I crawl back into bed after adding that extra five grams of carbs "just in case" and I want to cry because I have been so selfish. Others have it worse. It could have been worse for me. I only have one child to deal with. I am able to work from home and can sit at my computer screen in my pyjamas for hours before I get my body working if I want. I just end up feeling selfish...and tired. So is life when diabetes lives in your house. Could it please move to its own house with no one in it but itself? I guess not. Time to suck it up and be grateful to see another day with my son.
Tuesday, September 14, 2010
Diabetes+Puberty=Insanity
We started this diabetes nightmare when my son was two years old. Back then my life was filled with lancing tiny fingers, injecting innocent little limbs, and fighting to get food into his body. He would refuse to eat. He would vomit his food. He would store an entire meal in his cheek. His father took to calling him a chipmunk. We were on an old MDI regimen and it took a year or so before I began to learn how to make it work for me rather than let diabetes rule our lives.
Eventually my son grew. He became more independent and he decided that food was great. Where once I fought with him to eat, now I have to tell him to take a break. My how times have changed!
In the old days, my son was always with me. I even went to school with him for a bit. I tested him. I knew what he ate. I was on top of most things and despite fighting diabetes each day, I knew that when the report card came in, I would see a good A1c and my hard work would be rewarded.
The A1c is a blood test that measures the amount of glucose in the blood over the past 2-3 months. I kept the readings lower and the result was usually good. Parents spoke of feeling like they were being graded when they were given the results of the A1c test. To them it spoke to whether they had passed or failed as a pancreas over the past 3 months. I felt that way as well but I had been a good scholar so I rarely experienced "failure".
My son is no longer a toddler. He is no longer a young boy. He is now a teen. Teenagers go through puberty. Puberty means hormones. Puberty means independence. Puberty means Mom is no longer in every single place that son is. Puberty plus diabetes equals my fast track to insanity.
This summer we moved. This summer my son alternated his time between our new home and his father's house. When the report card came back on what sort of pancreases we had been (or more specifically he had been) over the summer--well it was not good. We had our worst A1c ever. I was devastated but proud that I didn't completely lose it with my child. He heard the results. He knew that they were not what I considered good. He knew that he had to pull up his socks before December.
The "report card" was completely foreign to my fiance. He had no idea what the numbers meant or why I would be upset. He kindly told me that if I felt it was bad, then he would do what he could to help me to help my son so that next time it was a lot better. It felt good to know that I was not alone. He would be that second voice reminding my child of all of the things he seems to forget. Bolusing has improved. Its not often that that is forgotten...since he has been home. He is even getting back into pre-bolusing which I like to see. Testing? Well that is an entirely different ball of wax.
I have suggested texting him. I have suggested sitting in class with him. Of course I am only so serious about some of those ideas but he is worried. He is now managing to at least get in the bare minimal amount of testing while he is in school. I am good. I do not check his meter the second he comes home. We usually go over things after supper or before bed.
I really shouldn't do it before bed though. This diabetes stuff is wearing me out already. We clamped down. We finally saw readings under 10 (180). We were even seeing the occasional 4(72)!! I was over the moon. School days are have changed that. Diabetes seems to love school. Love it as in loves to mess things up terribly! He is double digits for most of the day and yet his basals are set perfectly and if I drop a carb to insulin ratio much lower it will terrify me. I have decided to set a "school" rate. I am going to crank up the insulin while he sits in class and on the bus. It may not be school. We could be looking at another growth spurt...you know because I just had to buy an entire new wardrobe for school so let's grow again so I can do it all over again for Christmas!
Diabetes should give you more of a break than just a day or two. It has taken me months to finally get settled into our new home. It has taken months to unpack half of our stuff. Couldn't diabetes give us a few months before it came back with this puberty laden attitude? Thank heavens for a jet tub and a drink because diabetes may drive me to spending a lot more time in there yet trying to drown my frustrations on way or another.
Eventually my son grew. He became more independent and he decided that food was great. Where once I fought with him to eat, now I have to tell him to take a break. My how times have changed!
In the old days, my son was always with me. I even went to school with him for a bit. I tested him. I knew what he ate. I was on top of most things and despite fighting diabetes each day, I knew that when the report card came in, I would see a good A1c and my hard work would be rewarded.
The A1c is a blood test that measures the amount of glucose in the blood over the past 2-3 months. I kept the readings lower and the result was usually good. Parents spoke of feeling like they were being graded when they were given the results of the A1c test. To them it spoke to whether they had passed or failed as a pancreas over the past 3 months. I felt that way as well but I had been a good scholar so I rarely experienced "failure".
My son is no longer a toddler. He is no longer a young boy. He is now a teen. Teenagers go through puberty. Puberty means hormones. Puberty means independence. Puberty means Mom is no longer in every single place that son is. Puberty plus diabetes equals my fast track to insanity.
This summer we moved. This summer my son alternated his time between our new home and his father's house. When the report card came back on what sort of pancreases we had been (or more specifically he had been) over the summer--well it was not good. We had our worst A1c ever. I was devastated but proud that I didn't completely lose it with my child. He heard the results. He knew that they were not what I considered good. He knew that he had to pull up his socks before December.
The "report card" was completely foreign to my fiance. He had no idea what the numbers meant or why I would be upset. He kindly told me that if I felt it was bad, then he would do what he could to help me to help my son so that next time it was a lot better. It felt good to know that I was not alone. He would be that second voice reminding my child of all of the things he seems to forget. Bolusing has improved. Its not often that that is forgotten...since he has been home. He is even getting back into pre-bolusing which I like to see. Testing? Well that is an entirely different ball of wax.
I have suggested texting him. I have suggested sitting in class with him. Of course I am only so serious about some of those ideas but he is worried. He is now managing to at least get in the bare minimal amount of testing while he is in school. I am good. I do not check his meter the second he comes home. We usually go over things after supper or before bed.
I really shouldn't do it before bed though. This diabetes stuff is wearing me out already. We clamped down. We finally saw readings under 10 (180). We were even seeing the occasional 4(72)!! I was over the moon. School days are have changed that. Diabetes seems to love school. Love it as in loves to mess things up terribly! He is double digits for most of the day and yet his basals are set perfectly and if I drop a carb to insulin ratio much lower it will terrify me. I have decided to set a "school" rate. I am going to crank up the insulin while he sits in class and on the bus. It may not be school. We could be looking at another growth spurt...you know because I just had to buy an entire new wardrobe for school so let's grow again so I can do it all over again for Christmas!
Diabetes should give you more of a break than just a day or two. It has taken me months to finally get settled into our new home. It has taken months to unpack half of our stuff. Couldn't diabetes give us a few months before it came back with this puberty laden attitude? Thank heavens for a jet tub and a drink because diabetes may drive me to spending a lot more time in there yet trying to drown my frustrations on way or another.
Sunday, September 12, 2010
Making a difference
What can I do? I am only one person? One person can never make a difference. You have to "be" someone to make a difference. Unless you are famous or a politician then you can't really make anything happen.
I have heard those words more than once and in some respects it is true. Big names bring bigger notice to certain issues but little people, average people, people like you and me can make a huge difference as well.
I was in the post office the other day and the lady in front of me was asked if she would like to support mental illness. I quickly flashed back to copies of stamps that were sent to me and others by a friend. She has worked very hard to protect the rights of the mentally ill and I knew that it was her hard work that had resulted in both the mental health stamp and the question being posed to the lady in the post office.
Not everyone is about to get a postage stamp for their cause but its amazing how people can make a difference in your life. The gentleman who shared with my son and others how he ignored his diabetes and repeatedly ended up in the hospital made a difference in our lives. My child is now talking about diabetes...his disease. The teacher that went to my son and said "I have a child with diabetes as well. Please come to me if you are low or need any help. I can help you. I know what to do." made a big difference in removing some of my fear and that of my son. He now knows that there is someone closer than a cell phone who can help him. The man in our house who has learned to lean over and say "Hey Liam! Did you test? Have you bolused? Do you need a different basal?" provides me with a sense of support I have never known before. They all have made and continue to make a big difference in our lives.
What about the really big things? You have to be a huge organization or a celebrity, I'm telling you! Yep, heard it before as well. That person who helped get the mental health stamp is not an organization or a celebrity. She is to me and many who have the privilege of knowing her but to John Q public, she is just another person on the street. There are a group of parents with incredible determination in Ontario to see legislative changes regarding diabetes care in their schools. They are not paid employees of a big corporation. (They would actually love to be able to quit their day jobs and work at this around the clock but the pay is terrible.) They are parents that care. They will make an impact. They will see change.
People do make a difference. Its not about who gets their name in the paper. Its about making a difference in people's lives. Don't be intimidated. Don't underestimate the impact that you have. As the saying goes, "To the world you may just be one person, but to one person you are the world." You would be surprised to see how many people may consider you their world.
I have heard those words more than once and in some respects it is true. Big names bring bigger notice to certain issues but little people, average people, people like you and me can make a huge difference as well.
I was in the post office the other day and the lady in front of me was asked if she would like to support mental illness. I quickly flashed back to copies of stamps that were sent to me and others by a friend. She has worked very hard to protect the rights of the mentally ill and I knew that it was her hard work that had resulted in both the mental health stamp and the question being posed to the lady in the post office.
Not everyone is about to get a postage stamp for their cause but its amazing how people can make a difference in your life. The gentleman who shared with my son and others how he ignored his diabetes and repeatedly ended up in the hospital made a difference in our lives. My child is now talking about diabetes...his disease. The teacher that went to my son and said "I have a child with diabetes as well. Please come to me if you are low or need any help. I can help you. I know what to do." made a big difference in removing some of my fear and that of my son. He now knows that there is someone closer than a cell phone who can help him. The man in our house who has learned to lean over and say "Hey Liam! Did you test? Have you bolused? Do you need a different basal?" provides me with a sense of support I have never known before. They all have made and continue to make a big difference in our lives.
What about the really big things? You have to be a huge organization or a celebrity, I'm telling you! Yep, heard it before as well. That person who helped get the mental health stamp is not an organization or a celebrity. She is to me and many who have the privilege of knowing her but to John Q public, she is just another person on the street. There are a group of parents with incredible determination in Ontario to see legislative changes regarding diabetes care in their schools. They are not paid employees of a big corporation. (They would actually love to be able to quit their day jobs and work at this around the clock but the pay is terrible.) They are parents that care. They will make an impact. They will see change.
People do make a difference. Its not about who gets their name in the paper. Its about making a difference in people's lives. Don't be intimidated. Don't underestimate the impact that you have. As the saying goes, "To the world you may just be one person, but to one person you are the world." You would be surprised to see how many people may consider you their world.
Thursday, September 9, 2010
We survived!
School started here on Wednesday. As you may have read, I dawdled and procrastinated before I got this stuff in order and was proud of myself for being set by Monday night. I had found all sorts of errors and omissions that needed to be changed and because my son was older I also had a lot of care issues to alter as well. He no longer needs someone to make sure he ate his snack or to verify his bolus. Now he needs someone to make sure he tests before exams and allows him use of his cell phone if he needs to question me about his care. All done and no ink to print it.
Tuesday we were like the rest of the area and were heading out for last minute school items. There was one big difference though--most people were looking for notebooks and pencils. We were looking for printer ink to send information to school to keep our child safe.
So how much ink did I need? Well I did use a bit. I had red duo-tangs with see through covers. The front was a picture of my son with his name and a bit about "his" diabetes care. This included what he would bring to school and what I wanted the school to do to help him. I then included a letter explaining what diabetes was followed by a two page letter about his insulin pump. When I could, I added pictures so that they knew what they were dealing with. I included two NovoNordisk charts on highs and lows which I suggested they photocopy and leave in various places throughout the school. Finally I included the two CDA documents that I helped out with--Standards of Care, and the Medical Care Plan proposal. I also had his red emergency kit labeled and inside was a set of spare supplies...just in case. No it wasn't overkill, it was educating.
I finally had everything put together and ready to take to school Wednesday morning. My son was sure that it was too soon for summer holidays to end and we should perhaps consider another vacation starting right that moment. I didn't tell him but I was equally as nervous. All night I wondered what I had forgotten and prayed that they would be as accommodating as they seemed.
Wednesday morning arrived too quickly for all of us and we loaded up the truck with the tonne of school supplies required as well as the tonne of paperwork required by Mom. The three of us headed off to our first day in our new school. We timed the run to see how long to anticipate my son being on the bus. When we arrived we looked like many other families and like other families, we headed to the office to register.
The secretary greeted us and I quickly went through a few key points in our booklet...like the warning signs of highs and lows. As she went to photocopy some of our documentation, the principal walked in. She greeted us right away and knew who we were. The secretary kindly showed Liam to his new classroom and the principal and I discussed meeting with staff in the next few weeks to go over details of Liam's care specific to him. I was very impressed. We were invited to stay for a family breakfast that they were having so Larry and I headed off to enjoy a coffee.
As we headed in search of our first cup of "Joe", I ran into a few people that I had met through the years in volunteering at our old school. It gave me a sense of comfort and I began to relax--well just a little. It didn't take long for students to join us for breakfast. Not surprising my son stood off to the side and hung around with us. His teacher came over and told me that she was hypoglycemic so Liam was in good hands. Oh happy day because she also seemed to "get it"!! I left the school feeling better that things would be okay.
We drove home and waited for him. He had a full day and I hoped not to hear any messages from him until he was home. The first message arrived when he was on the bus heading home. School was terrible! Mom panicked but thankfully we were texting so I just began to ask questions. Did you get lost? No, the school isn't big enough for that. Were people mean to you? No, they were pretty friendly. Did you not understand what was going on? No, it was pretty basic and boring. Were you high? No. In other words, he just was in a new school and was still adjusting. Mom could breathe again. I waited to see if he tested. I didn't ask but checked his log later that evening. He did! We are off to a good start! Now I will just keep praying that this will continue and eventually he really will enjoy his new environment.
Monday, September 6, 2010
Preparing myself for Back to School
Yes, its preparing Mom not preparing child. Getting the child ready was simple. It involved one shopping trip and far too much money. The cell phone has been upgraded. School clothes have all been bought. New shoes have been purchased in a larger size. Books we had already but pens, glue and and other items have been bought and stacked to head off to school next week.
Mom on the other hand has been dawdling beyond belief. Despite talking about sending your child with diabetes to school and despite helping other families with their preparations, I hate this part of the school year. I am surrounded by documents that must be printed and edited. We are heading into a new school, my son is now a teen and my hair will all be grey any moment now.
Its all my own anxiety. I have been in contact with the school on more than one occasion. They have been very accommodating and will be meeting with a nurse even before I enter the building to begin to try to understand what is required of them. Personally, I am nervous about a nurse meeting with them on this issue without me being present. For those of us who live with diabetes, we know how individual this disease is and I am hoping that general statements are not taken for absolute fact. I am also not sure how often he/she has been dealing with Type 1 diabetes in recent years.
The principal is still very open to meeting with me on the issue and discussing Liam's specific needs. The secretary has asked for two copies of a letter stating the accommodations required for Liam. I told her that I usually do up a booklet for the teacher who will be with him most of the time and would gladly make her a copy. She was quite happy with that.
Thirteen is such a joyous age and diabetes does not make it better. Children are becoming young adults and they want their independence. I fear how much I can truly give a child with diabetes. I know that he will be an adult and such but no matter what his age, he may still need help with a low. No matter what his age, he still needs someone else to administer Glucagon. No matter what is age, he still can't see properly when he is high. I just hate those facts.
I will ask that my child be allowed to test in class. He is most comfortable there and misses less class time. This is something that was allowed in his other school so I am sure that we can work it out here. They are encouraged to bring a water bottle so that covers that problem. He is old enough to bolus based on the carb counts that I send to school, so again, this will not be an issue. I will bring instructions for Glucagon and hope that they will consider using it. They are close to a hospital but just in case, it cannot hurt. I will also be sending him to school with his cell phone. This may be a bit contentious but I feel its important if used properly. I have already warned him that it is ONLY to be used to call me if he is high/low or questioning what to do about something. It would also be used if he was low and could not ride the school bus or considering the length of time I now anticipate him on the bus, a high may well warrant a ride as well.
Its been two days since I started writing this. I have a pile of papers all around me and nothing is finished. I have a box that I purchased to put his emergency supplies in. He swears the old box is here somewhere but I haven't seen it all summer. I hate back to school. One of his old teachers has spoken to the new principal. Everything is in very good hands...I am still a mom. I have mom anxiety. Going to school should not cause such stress but I guess it does for every parent especially those who are sending a child with a chronic illness or condition into a new classroom setting.
Okay...I will get these documents in order and updated. I will...soon.
Mom on the other hand has been dawdling beyond belief. Despite talking about sending your child with diabetes to school and despite helping other families with their preparations, I hate this part of the school year. I am surrounded by documents that must be printed and edited. We are heading into a new school, my son is now a teen and my hair will all be grey any moment now.
Its all my own anxiety. I have been in contact with the school on more than one occasion. They have been very accommodating and will be meeting with a nurse even before I enter the building to begin to try to understand what is required of them. Personally, I am nervous about a nurse meeting with them on this issue without me being present. For those of us who live with diabetes, we know how individual this disease is and I am hoping that general statements are not taken for absolute fact. I am also not sure how often he/she has been dealing with Type 1 diabetes in recent years.
The principal is still very open to meeting with me on the issue and discussing Liam's specific needs. The secretary has asked for two copies of a letter stating the accommodations required for Liam. I told her that I usually do up a booklet for the teacher who will be with him most of the time and would gladly make her a copy. She was quite happy with that.
Thirteen is such a joyous age and diabetes does not make it better. Children are becoming young adults and they want their independence. I fear how much I can truly give a child with diabetes. I know that he will be an adult and such but no matter what his age, he may still need help with a low. No matter what his age, he still needs someone else to administer Glucagon. No matter what is age, he still can't see properly when he is high. I just hate those facts.
I will ask that my child be allowed to test in class. He is most comfortable there and misses less class time. This is something that was allowed in his other school so I am sure that we can work it out here. They are encouraged to bring a water bottle so that covers that problem. He is old enough to bolus based on the carb counts that I send to school, so again, this will not be an issue. I will bring instructions for Glucagon and hope that they will consider using it. They are close to a hospital but just in case, it cannot hurt. I will also be sending him to school with his cell phone. This may be a bit contentious but I feel its important if used properly. I have already warned him that it is ONLY to be used to call me if he is high/low or questioning what to do about something. It would also be used if he was low and could not ride the school bus or considering the length of time I now anticipate him on the bus, a high may well warrant a ride as well.
Its been two days since I started writing this. I have a pile of papers all around me and nothing is finished. I have a box that I purchased to put his emergency supplies in. He swears the old box is here somewhere but I haven't seen it all summer. I hate back to school. One of his old teachers has spoken to the new principal. Everything is in very good hands...I am still a mom. I have mom anxiety. Going to school should not cause such stress but I guess it does for every parent especially those who are sending a child with a chronic illness or condition into a new classroom setting.
Okay...I will get these documents in order and updated. I will...soon.
Wednesday, September 1, 2010
What we got out of a CWD Conference...who knew?
My family and I recently went on a vacation. I foolishly booked our travel for two full weeks knowing that I had a lot of family to see and wanting to get full value for all of the money we were giving Air Canada. By the end of our two weeks we had enjoyed time with family and friends. I had introduced my boys and my fiancé to the pleasures of west coast British Columbia. We had seen giant trees, they had tried fishing, one child had done his first bungee jump and everyone had tasted blackberries.
The end of the trip was something that I wasn't as sure about. We were going to the first Canadian Friends for Life Conference about diabetes. My oldest son loved FFL Florida. He had a lot of friends and still talks about going back. My youngest son is a hermit who isn't much for socializing and has little time for most people. My fiancé was considering staying on with us if his work schedule allowed. I was excited that he wanted to see what I do and to learn more about a disease that was moving into his house but I worried that he would be bored because I knew I would not be around all of the time.
As the conference date arrived, my three guys enjoyed some sightseeing while I reconnected with old friends and helped to prepare for the arrival of about 500 people who would make up the Friends for Life Conference. I suggested that they come down during the social and perhaps I would get to break away or at least they could see the exhibits.
Sadly, I didn't get to break away. Things were crazy as a number of us worked to try and assist everyone who came to register and ask questions. I caught glimpses of faces that had previously only been names but rarely got a chance to really chat. That didn't change much when my family came down to see me. Thankfully my fiancé did a great job of taking the boys around, finding them some food and chatting with other people at the event. I kissed him when I found out that they ate with Joe Solowiejczyk. He is someone who has had diabetes for 50 years and works for Animas helping people and families to cope with diabetes. While Joe didn't turn my young son into a social butterfly, he remembered him and continued a dialogue with him throughout the conference.
The next day the boys began their sessions and I was asked to introduce some speakers and assist in a room during the afternoon. Thankfully my fiancé had family in the area and he was able to meet with them for the afternoon. Time remained busy as people came by asking questions, wanting to learn, and just stopping to say hello. It was wonderful for me but I was sure it was probably very dull for the poor man who came with me.
Sunday was the last day of the conference. The boys were excited because they were going to spend the day at Stanley Park and the Aquarium. No more lectures and sharing...it was a day of fun! I had two sessions to deal with this time and both involved me presenting. I had been asked to talk with my friend Michelle Rago about Managing Diabetes in Schools and on Saturday night, I was asked if I would join in facilitating the Moms' Group discussion Sunday afternoon. I was really honoured to be asked to join and appreciated the warm welcome I received from the other members of the team. They wanted me to open things and get it all going. This still left Larry with little to do...except shop! He still had gifts to pick up so I suggested a trip to Granville Island and provided a shopping list just in case he thought we didn't have enough souvenirs for our own home.
Our schools session seemed to go well and I was amazed at the turn out. The moms' group was also a success with a few learning points for Heather and I should we get to be involved again. It was great to see so many familiar faces in the group. I was excited to have hugs from women who had emailed me for years and now were meeting me. Finally however it all came to a close. My boys were upstairs waiting in our hotel room and my fiance was there with me to watch the close. I felt pretty lucky.
The next morning we headed on the plane back home. We were exhausted and ready to put our heads down on our own beds. As we settled on the plane, Larry said to me, "Maybe we need to get that $100 meter. Who cares about the cost. It will tell Liam that he needs insulin and remind him to test." I was so very touched. He had listened. He had heard. He wanted to help make our lives better. I explained that I hoped to have that new meter at no cost soon to try out but more importantly, my son's pump already does all of those things and he ignores it. The thought was truly in the right place but unless the meter had electrodes that would shock the kid, we were out of luck. He said that he would just have to start reminding him as well then. The next day at dinner he did just that. He told my son that he had better start remembering to do his own care or he was going to hear all of the reminders twice. He then said,"Did you test? Did you bolus? Did you set your travel basal?" I laughed and said he could save the last one for our next vacation!
I guess despite being bored, and despite the fact that he felt he had already learned most of what was said from me, he took a bit more in and is more than willing to put it to use. It made me feel great to know that I finally had someone on my side.
The conference impact didn't end there however. Our first day home was also a day to go and meet our new diabetes team. As we were waiting to see this person and the next one, my son and I began to talk about a lecture that I had heard. Joe had been talking about a "diabetes meltdown day". I explained what that meant and my son thought that was the greatest idea ever! When we got back in the truck after the appointment, he immediately told Larry that he was going to have a diabetes meltdown day and Larry had to tell him how wonderful he was. Larry suggested he would kick his butt and motivate him instead. My son was okay with that.
When the conference first began, I would ask my boys what they had done in a session. What did they learn? What did they talk about? I got nothing. Slowly over the past 24 hours my youngest son has been pouring out more information on what went on, how others deal with diabetes, and diabetes conversations in general than he has in his lifetime of living with this disease. I haven't pushed it. I have let it go where he wants it to but I have been amazed. I thought nothing sunk in. I thought that they were just there in body because Mom made them. I was wrong and I am so very grateful!
Once again my CWD family...and the family in my house, continue to amaze and impress me!
The end of the trip was something that I wasn't as sure about. We were going to the first Canadian Friends for Life Conference about diabetes. My oldest son loved FFL Florida. He had a lot of friends and still talks about going back. My youngest son is a hermit who isn't much for socializing and has little time for most people. My fiancé was considering staying on with us if his work schedule allowed. I was excited that he wanted to see what I do and to learn more about a disease that was moving into his house but I worried that he would be bored because I knew I would not be around all of the time.
As the conference date arrived, my three guys enjoyed some sightseeing while I reconnected with old friends and helped to prepare for the arrival of about 500 people who would make up the Friends for Life Conference. I suggested that they come down during the social and perhaps I would get to break away or at least they could see the exhibits.
Sadly, I didn't get to break away. Things were crazy as a number of us worked to try and assist everyone who came to register and ask questions. I caught glimpses of faces that had previously only been names but rarely got a chance to really chat. That didn't change much when my family came down to see me. Thankfully my fiancé did a great job of taking the boys around, finding them some food and chatting with other people at the event. I kissed him when I found out that they ate with Joe Solowiejczyk. He is someone who has had diabetes for 50 years and works for Animas helping people and families to cope with diabetes. While Joe didn't turn my young son into a social butterfly, he remembered him and continued a dialogue with him throughout the conference.
The next day the boys began their sessions and I was asked to introduce some speakers and assist in a room during the afternoon. Thankfully my fiancé had family in the area and he was able to meet with them for the afternoon. Time remained busy as people came by asking questions, wanting to learn, and just stopping to say hello. It was wonderful for me but I was sure it was probably very dull for the poor man who came with me.
Sunday was the last day of the conference. The boys were excited because they were going to spend the day at Stanley Park and the Aquarium. No more lectures and sharing...it was a day of fun! I had two sessions to deal with this time and both involved me presenting. I had been asked to talk with my friend Michelle Rago about Managing Diabetes in Schools and on Saturday night, I was asked if I would join in facilitating the Moms' Group discussion Sunday afternoon. I was really honoured to be asked to join and appreciated the warm welcome I received from the other members of the team. They wanted me to open things and get it all going. This still left Larry with little to do...except shop! He still had gifts to pick up so I suggested a trip to Granville Island and provided a shopping list just in case he thought we didn't have enough souvenirs for our own home.
Our schools session seemed to go well and I was amazed at the turn out. The moms' group was also a success with a few learning points for Heather and I should we get to be involved again. It was great to see so many familiar faces in the group. I was excited to have hugs from women who had emailed me for years and now were meeting me. Finally however it all came to a close. My boys were upstairs waiting in our hotel room and my fiance was there with me to watch the close. I felt pretty lucky.
The next morning we headed on the plane back home. We were exhausted and ready to put our heads down on our own beds. As we settled on the plane, Larry said to me, "Maybe we need to get that $100 meter. Who cares about the cost. It will tell Liam that he needs insulin and remind him to test." I was so very touched. He had listened. He had heard. He wanted to help make our lives better. I explained that I hoped to have that new meter at no cost soon to try out but more importantly, my son's pump already does all of those things and he ignores it. The thought was truly in the right place but unless the meter had electrodes that would shock the kid, we were out of luck. He said that he would just have to start reminding him as well then. The next day at dinner he did just that. He told my son that he had better start remembering to do his own care or he was going to hear all of the reminders twice. He then said,"Did you test? Did you bolus? Did you set your travel basal?" I laughed and said he could save the last one for our next vacation!
I guess despite being bored, and despite the fact that he felt he had already learned most of what was said from me, he took a bit more in and is more than willing to put it to use. It made me feel great to know that I finally had someone on my side.
The conference impact didn't end there however. Our first day home was also a day to go and meet our new diabetes team. As we were waiting to see this person and the next one, my son and I began to talk about a lecture that I had heard. Joe had been talking about a "diabetes meltdown day". I explained what that meant and my son thought that was the greatest idea ever! When we got back in the truck after the appointment, he immediately told Larry that he was going to have a diabetes meltdown day and Larry had to tell him how wonderful he was. Larry suggested he would kick his butt and motivate him instead. My son was okay with that.
When the conference first began, I would ask my boys what they had done in a session. What did they learn? What did they talk about? I got nothing. Slowly over the past 24 hours my youngest son has been pouring out more information on what went on, how others deal with diabetes, and diabetes conversations in general than he has in his lifetime of living with this disease. I haven't pushed it. I have let it go where he wants it to but I have been amazed. I thought nothing sunk in. I thought that they were just there in body because Mom made them. I was wrong and I am so very grateful!
Once again my CWD family...and the family in my house, continue to amaze and impress me!
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