Ian's Army
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A Mom's Point of View
In the song, A Little Bit Longer, by the Jonas Brothers, Nick sings a few simple words that sum up life with Type 1 diabetes, "You don't even know". From my perspective I want to write to you about living with and loving a child with Type 1 diabetes. I'm writing so that you may "know" just a little bit more what Nick is talking about...life with Type 1 diabetes.
As I write, I cry. Like so many mothers of a special needs child, my heart is burdened with the desire for normalcy for my child. I wish he could know what life is like to be "normal". Ian looks normal and healthy. He runs. He plays. He eats. He enjoys his friends. He fights with his sister. However, when you take a deeper look, you'll see so many things that are not normal.
Daily, normal here starts with the drawing of blood. Before he can eat, Ian has to poke his finger to check his blood sugar. Before he can eat, he has to calculate the number of units of insulin he needs to cover his blood sugar if it's higher than what it should be. Before he can eat, he has to carefully measure his food and calculate how much insulin is needed to cover the food he eats. This routine happens throughout the day. If Ian wants to eat or drink anything with a carb in it, he has to poke, check, calculate, and inject.
Daily, we have to carry equipment with us - "the bag". In the bag, we have a glucometer, poker, alcohol wipes, insulin, syringes, glucagon injection kit, and juice for low blood sugar emergencies. It's like American Express - we don't leave home without it, at least we try not to leave without it. Several times trips have been altered because we have forgotten the bag or something in the bag. One day I spent an extra hour on the road driving to and from his school because I forgot to check his syringe supply. He has to have all these supplies with him at all times. His life depends on it.
Daily, we have to carefully monitor his activity. Whiles he's running and playing with other kids, while other parents are simply enjoying watching their kids play, I have to wonder if Ian is going low. I have to stop him and ask how he is feeling. I have to stop him and have him check his blood, just in case he doesn't "feel" low. His diabetes may not always be on his mind, but it's always on mine.
Now for the not so daily stuff...parties, cookouts, overnights, even long afternoons at a friend's house can be a challenge. Ian, like all of us, has not mastered self control. Imagine being at an event, surrounded by food, everyone is grazing and piling food on their plates to enjoy and celebrate life. For us, the celebration always has to stop. We have to go through the routine. Also part of the routine, are questions..."I'm still hungry. Can I have two hot dogs WITH buns, and the chips and the cookies and the...Why does Maggie get to have...?". It's hard. As Ian gets older, he asks questions less often. He's growing in his understanding of the complications that come with high blood sugar levels.
Sadly, Ian understands more about life and death than most kids his age. He knows that an untreated low blood sugar can kill him. There was a time period of a week or so where his blood sugar was dropping very low an hour or two after he went to bed. Out of the blue, this started happening. It would take an hour or more to get him back up to normal levels so he could safely go back to sleep. One of those nights, I found myself actually saying, "Ian, you have to eat this Reese Cup!" We ran out of juice and were using candy meant for his Christmas stocking. One of those nights, Ian started to cry before going to bed....I mean really, really cry. When I asked him why he was crying, his answer was simple and heartbreaking. "Mommy, if I go to sleep, I might not wake up and I don't want to die." With the help of the wonderful staff at Riley, we changed the type of long acting insulin we were using and the problem stopped. No more tears before bed now.
Most people have been great, helpful and considerate. Unfortunately, not all adults have been so great. Other adults have attacked him verbally and criticized his sometimes crazy, emotional behavior. Many of these adults live by the phrase -"There is no excuse for sin!" This is easy to say when your body is functioning normally. For Ian and others with this disease, blood sugar levels and the fluctuating of those levels can affect behavior in major ways. During our diabetes education, the teacher told us a story about blood sugar and behavior that really hit home. A paramedic told our teacher that the worst call he had ever experienced was a call to the home of a man with Type 1 diabetes. The man was experiencing a low blood sugar but didn't "feel" it. His wife called 911 because she couldn't reason with him to check his blood. The man was irrational - the brain cannot function normally when there is no sugar to "run" it. The paramedic said the man was extremely violent, angry, and strong. It took three men to take down this otherwise average size man. After popping him with glucagon, the man went back to normal and couldn't remember what had happened. Don't get me wrong...Ian is a normal child and his bad behavior is not always because of blood sugar issues. Remember, I'm writing all of this to help you understand, to "know" a little bit more about him and his life with this disease.
Well, I end this the same way I started...in tears. Someday, I want my son to be able to go through life and not worry constantly about the delicate balance of food intake, sugar levels, insulin doses, and activity. Someday, even if it was just one day, I would love for Ian to be able to simply experience life, to just be normal.
As I write, I cry. Like so many mothers of a special needs child, my heart is burdened with the desire for normalcy for my child. I wish he could know what life is like to be "normal". Ian looks normal and healthy. He runs. He plays. He eats. He enjoys his friends. He fights with his sister. However, when you take a deeper look, you'll see so many things that are not normal.
Daily, normal here starts with the drawing of blood. Before he can eat, Ian has to poke his finger to check his blood sugar. Before he can eat, he has to calculate the number of units of insulin he needs to cover his blood sugar if it's higher than what it should be. Before he can eat, he has to carefully measure his food and calculate how much insulin is needed to cover the food he eats. This routine happens throughout the day. If Ian wants to eat or drink anything with a carb in it, he has to poke, check, calculate, and inject.
Daily, we have to carry equipment with us - "the bag". In the bag, we have a glucometer, poker, alcohol wipes, insulin, syringes, glucagon injection kit, and juice for low blood sugar emergencies. It's like American Express - we don't leave home without it, at least we try not to leave without it. Several times trips have been altered because we have forgotten the bag or something in the bag. One day I spent an extra hour on the road driving to and from his school because I forgot to check his syringe supply. He has to have all these supplies with him at all times. His life depends on it.
Daily, we have to carefully monitor his activity. Whiles he's running and playing with other kids, while other parents are simply enjoying watching their kids play, I have to wonder if Ian is going low. I have to stop him and ask how he is feeling. I have to stop him and have him check his blood, just in case he doesn't "feel" low. His diabetes may not always be on his mind, but it's always on mine.
Now for the not so daily stuff...parties, cookouts, overnights, even long afternoons at a friend's house can be a challenge. Ian, like all of us, has not mastered self control. Imagine being at an event, surrounded by food, everyone is grazing and piling food on their plates to enjoy and celebrate life. For us, the celebration always has to stop. We have to go through the routine. Also part of the routine, are questions..."I'm still hungry. Can I have two hot dogs WITH buns, and the chips and the cookies and the...Why does Maggie get to have...?". It's hard. As Ian gets older, he asks questions less often. He's growing in his understanding of the complications that come with high blood sugar levels.
Sadly, Ian understands more about life and death than most kids his age. He knows that an untreated low blood sugar can kill him. There was a time period of a week or so where his blood sugar was dropping very low an hour or two after he went to bed. Out of the blue, this started happening. It would take an hour or more to get him back up to normal levels so he could safely go back to sleep. One of those nights, I found myself actually saying, "Ian, you have to eat this Reese Cup!" We ran out of juice and were using candy meant for his Christmas stocking. One of those nights, Ian started to cry before going to bed....I mean really, really cry. When I asked him why he was crying, his answer was simple and heartbreaking. "Mommy, if I go to sleep, I might not wake up and I don't want to die." With the help of the wonderful staff at Riley, we changed the type of long acting insulin we were using and the problem stopped. No more tears before bed now.
Most people have been great, helpful and considerate. Unfortunately, not all adults have been so great. Other adults have attacked him verbally and criticized his sometimes crazy, emotional behavior. Many of these adults live by the phrase -"There is no excuse for sin!" This is easy to say when your body is functioning normally. For Ian and others with this disease, blood sugar levels and the fluctuating of those levels can affect behavior in major ways. During our diabetes education, the teacher told us a story about blood sugar and behavior that really hit home. A paramedic told our teacher that the worst call he had ever experienced was a call to the home of a man with Type 1 diabetes. The man was experiencing a low blood sugar but didn't "feel" it. His wife called 911 because she couldn't reason with him to check his blood. The man was irrational - the brain cannot function normally when there is no sugar to "run" it. The paramedic said the man was extremely violent, angry, and strong. It took three men to take down this otherwise average size man. After popping him with glucagon, the man went back to normal and couldn't remember what had happened. Don't get me wrong...Ian is a normal child and his bad behavior is not always because of blood sugar issues. Remember, I'm writing all of this to help you understand, to "know" a little bit more about him and his life with this disease.
Well, I end this the same way I started...in tears. Someday, I want my son to be able to go through life and not worry constantly about the delicate balance of food intake, sugar levels, insulin doses, and activity. Someday, even if it was just one day, I would love for Ian to be able to simply experience life, to just be normal.
