Somedays I miss life before diabetes. I miss making cookies and letting Parker lick the bowl clean after. I miss going to McDonald's or reeds dairy to get ice cream and not worrying if he will eat all his dessert because I gave insulin for it. I miss peaceful nights sleep where I wasn't up checking blood sugars and treating lows in the night. I miss dates where I didn't have to worry about leaving him or being back in time to give more insulin or test blood sugars again. I miss dreaming and planning to go visit my sister and the new reality it will never happen because I can't leave my son. I miss going to play at the park or going for walks without the fear that exercise will make his blood sugars drop to dangerous levels. I miss letting him eat whatever whenever he wants! I miss him feeling like he is just like every other kid when in reality he never again will be. I miss the days when a stomach bug or common cold were just that, and not a guaranteed visit to the hospital. I miss the normal fear of medical costs instead of the lifelong expense of thousands of dollars spent a year just to keep him alive. I miss going into public without the fear of judgment because of his constant mood swings from fluctuating blood sugars. I miss him being invited for play dates without the fear of what he is eating or what his levels are while he is gone. I miss that part of me that died the day of his diagnosis. I miss that life. But that's not the life I was blessed with. But I am blessed! I am blessed to have modern medicine and a supportive family, the most amazing husband,and a happy boy who loves life despite his challenges. I know my Heavenly Father gave me this angel to raise because he knew I could do it!! I rely on that faith every day!! There isn't a day that goes by that I don't pray for a cure!! I know one day it WILL happen!
Friday, September 30, 2016
Sometimes, I miss the old life
Somedays I miss life before diabetes. I miss making cookies and letting Parker lick the bowl clean after. I miss going to McDonald's or reeds dairy to get ice cream and not worrying if he will eat all his dessert because I gave insulin for it. I miss peaceful nights sleep where I wasn't up checking blood sugars and treating lows in the night. I miss dates where I didn't have to worry about leaving him or being back in time to give more insulin or test blood sugars again. I miss dreaming and planning to go visit my sister and the new reality it will never happen because I can't leave my son. I miss going to play at the park or going for walks without the fear that exercise will make his blood sugars drop to dangerous levels. I miss letting him eat whatever whenever he wants! I miss him feeling like he is just like every other kid when in reality he never again will be. I miss the days when a stomach bug or common cold were just that, and not a guaranteed visit to the hospital. I miss the normal fear of medical costs instead of the lifelong expense of thousands of dollars spent a year just to keep him alive. I miss going into public without the fear of judgment because of his constant mood swings from fluctuating blood sugars. I miss him being invited for play dates without the fear of what he is eating or what his levels are while he is gone. I miss that part of me that died the day of his diagnosis. I miss that life. But that's not the life I was blessed with. But I am blessed! I am blessed to have modern medicine and a supportive family, the most amazing husband,and a happy boy who loves life despite his challenges. I know my Heavenly Father gave me this angel to raise because he knew I could do it!! I rely on that faith every day!! There isn't a day that goes by that I don't pray for a cure!! I know one day it WILL happen!
Hard day turned amazing!
Had a hard morning today. I was supposed to draw a fasting blood draw for parkers dr appointment today and I spilled the glucose water the blood went into. This lead to a huge temper tantrum as we had to drive to the dr office for now 2 blood draws. he couldn't eat or have insulin until after. On the way to the doctors with a screaming son in the back, the song, "He's my son" by Mark Shultz came on the radio and I knew it was for me.I started to cry thinking about how much I wish I could take this all away from him. I felt like a total failure as a mother at this point. Once at the doctor, I had to hold him on my lap while they drew his blood. He was not happy and was crying. Of course I started crying too. I hated that he had to go through this. After the appointment, he got a cool prize and breakfast, and all was right in
the world again! I am glad kids are so quick to move on and be happy again. :)
Later that day when we had his regular appointment, the day got way better!!! Our appointment was to decide which drug he would be on for the trial we are on. He could be on the faster acting insulin that he takes 20 minutes after he eats, regular novolog, or a blind study where we don't know what insulin we are on. We ended up getting the fast acting insulin!!!! I totally started crying. No longer do we have to pre dose his insulin before he eats. This is hard because he doesn't always eat all his food, or wants more but can't. Now he can eat just like everyone else. If he is full, he can stop eating, if he wants something else, cool! no problem! Its been a total game changer for us!! His blood sugars have been amazing too!! I can not beleive the stress it has releived for me and him!
Diabetes day camp
Parker had his first diabetes camp in August. It was a lot of fun for both of us. We went to the zoo, met with a bunch of vendors of diabetic supplies, did crafts together and ate lunch. I think it was fun for him to have something that made him feel special.
Diabetes bowling
(about 1 month after diagnosis)
A few weeks back, Parker and our family were invited to a bowling fundraiser to raise money for diabetic research. I missed it because I went with Carter to a Lacrosse game, but the kids had a lot of fun! They all had to test their blood sugar before going in, and pay their bs count in entrance fee. They bought snacks and bowled and had a grand old time! At the end, they had door prizes, Parker won a few prizes but his favorite was a new novolog (his brand of insulin) backpack with a build in cooler pouch. Parker is our little diabetic warrior and we sure do love him!!!
A little diabetic education for you.
Monday, April 4, 2016 ( sorry these first few posts are all out of order :) This was written just a few weeks after diagnosis
I have so many posts to get caught up on, but I feel the need to do an educational post about my son and his type 1 diabetes. If there is 1 thing I have learned in the last few weeks, its that the world doesn't know much about the disease. I have had so many questions since he was diagnosed! Things like, "oh, so did he just eat to much sugar?" Or, "if you change his eating habits, will it go away" I have realized that people get type 1 and type 2 diabetes confused!! Nothing we did or didn't do could have caused or prevented Parker getting Diabetes. People, (including myself at first) don't understand the diet side of it either. They link diabetes with sugar, which I guess makes sense, but its the carbs that we pay attention too. I have an amazing neighbor who my kids all call Grammy, and she always gives the kids a butterscotch candy. After Parker was diagnosed, she gave all the kids their piece of candy, and then gave Parker an apple :) It was so sweet of her to think of him that I didn't have the heart to tell her then that that apple have 3 times the carbs than the piece of candy did! In the diabetic world, we pay attention to the "Total Carbs" on the nutritional labels. This included the carbs and sugar in the food.
The way the body works, is it takes the carbs that we eat and they break down into sugar. The pancreas pumps out insulin to break down the sugars and keep the bodies blood sugar levels in a healthy range. When you become type 1 diabetic, your pancreas quits working and basically dies. It no longer produces insulin. With no insulin in the body to break down the sugars, the bodies blood sugar levels continue to rise, eventually causing organ damage and eventual death if left untreated. .In a type 2 diabetic, the pancreas can still function and produce insulin, it just doesn't because it is sick. Usually with proper diet and exercise it can be reversed or at least managed.
There is no cure for diabetes yet! I have no doubt there will be in Parker's lifetime. Our daily routine with Parker starts with a blood sugar test when he wakes up in the morning. Usually his numbers are great (between 80-180 is normal) He has had a couple low blood sugars, and in that case we give him some sugar to bring it back up to a normal range. A low blood sugar level is dangerous too. It can cause seizures, and diabetic comas. People often go contentious until they either get their blood sugar level up, or eventually could die.We have to count the carbs in every meal and give him insulin for the food before he eats. Between meals, we test again to make sure his levels are staying in a healthy range. If he wants a snack, its the same routine. We test his blood sugar every 2-4 hours. He has another type of insulin we give him before he goes to bed that helps keep his levels steady though the night. We have to take things like exercise into consideration with his blood sugar too. It can drive his blood sugar low or sometimes even high with physical activity. We now carry a little camo bag with all his insulin and testing equipment with us everywhere we go. We have a journal that we log every blood sugar number and every bit of food he eats. We have to keep in mind when traveling, the snacks and drinks he can have and how long we can go without testing again. We have tested and given insulin in a restaurant already and I snickered as I noticed the people around us watching. :)
We are learning how to give Parker all the foods he use to have and how to control blood sugar levels in the meantime. We cut out a lot of the sugary foods though, and he has yet to complain. We still have a cookie or muffin or ice cream once in a while which I think he appreciates all the more now :)
The signs and symptoms of diabetes can be hard to notice too. Our story is very rare!! The majority of children diagnosed are only found out once they become so sick that they are admitted to the hospital.Things like unquenchable thirst, and frequent urination are big symptoms. When they have to to go to the bathroom. there is very little batter control. This eventually causes weight loss. They could have fatigue, blurred vision, or headaches. These are all very common things in little kids so they can be written off as nothing. I hope that if anyone reading this post has any doubts about these symptoms, they will have their child's blood sugar levels tested. This is a very simple finger prick and 1 drop of blood.
I hope as I learn more, I can continue to educate people about this disease! I am so grateful for a very involved husband and father who is always super supportive in Parkers care. I am so blessed that Parker is doing so well!!
The way the body works, is it takes the carbs that we eat and they break down into sugar. The pancreas pumps out insulin to break down the sugars and keep the bodies blood sugar levels in a healthy range. When you become type 1 diabetic, your pancreas quits working and basically dies. It no longer produces insulin. With no insulin in the body to break down the sugars, the bodies blood sugar levels continue to rise, eventually causing organ damage and eventual death if left untreated. .In a type 2 diabetic, the pancreas can still function and produce insulin, it just doesn't because it is sick. Usually with proper diet and exercise it can be reversed or at least managed.
There is no cure for diabetes yet! I have no doubt there will be in Parker's lifetime. Our daily routine with Parker starts with a blood sugar test when he wakes up in the morning. Usually his numbers are great (between 80-180 is normal) He has had a couple low blood sugars, and in that case we give him some sugar to bring it back up to a normal range. A low blood sugar level is dangerous too. It can cause seizures, and diabetic comas. People often go contentious until they either get their blood sugar level up, or eventually could die.We have to count the carbs in every meal and give him insulin for the food before he eats. Between meals, we test again to make sure his levels are staying in a healthy range. If he wants a snack, its the same routine. We test his blood sugar every 2-4 hours. He has another type of insulin we give him before he goes to bed that helps keep his levels steady though the night. We have to take things like exercise into consideration with his blood sugar too. It can drive his blood sugar low or sometimes even high with physical activity. We now carry a little camo bag with all his insulin and testing equipment with us everywhere we go. We have a journal that we log every blood sugar number and every bit of food he eats. We have to keep in mind when traveling, the snacks and drinks he can have and how long we can go without testing again. We have tested and given insulin in a restaurant already and I snickered as I noticed the people around us watching. :)
We are learning how to give Parker all the foods he use to have and how to control blood sugar levels in the meantime. We cut out a lot of the sugary foods though, and he has yet to complain. We still have a cookie or muffin or ice cream once in a while which I think he appreciates all the more now :)
The signs and symptoms of diabetes can be hard to notice too. Our story is very rare!! The majority of children diagnosed are only found out once they become so sick that they are admitted to the hospital.Things like unquenchable thirst, and frequent urination are big symptoms. When they have to to go to the bathroom. there is very little batter control. This eventually causes weight loss. They could have fatigue, blurred vision, or headaches. These are all very common things in little kids so they can be written off as nothing. I hope that if anyone reading this post has any doubts about these symptoms, they will have their child's blood sugar levels tested. This is a very simple finger prick and 1 drop of blood.
I hope as I learn more, I can continue to educate people about this disease! I am so grateful for a very involved husband and father who is always super supportive in Parkers care. I am so blessed that Parker is doing so well!!
testing his blood sugar with dad.
didn't even hurt!
first successful low carb pancakes!
The older 3 kids have all learned to test his blood sugar.
Super excited to have a banana split for Easter dessert! And his sugar levels did awesome after!
He has made the 100 club a couple times now. Its just fun to celebrate when his blood sugar is a even 100!
He loves to show people his "I have type 1 diabetes" bracelet
We have had insane support!! A total stranger from one of the diabetes sites I belong to on Facebook, sent these to Parker. He was so excited
Enjoying a low glycemic protein bar! He love them!!
We have had a few failure moments too! As hard as they have been, they push me to keep trying until I get it figured out! I refuse to allow Parker's world and childhood to change anymore than needed!!
He is such a rockstar and I love him!!
He is such a rockstar and I love him!!
Warning!! super depressing post, with good lessons learned.
Its been a crazy month or so. I have a lot of blogging to get caught up on, but I wanted to write something very important I have learned. It seems Parker's Diabetes has been crazy lately. (as if diabetes is ever normal!) We have had a lot of high blood sugars and a lot of lows! One Sunday when going to church he had a blood sugar well over 400 (shouldn't be over 180) I knew it was going to be a long hour on the bench alone since Grant is in the Bishopric. When he gets high like this he is very hard to handle. He gets angry and sometimes aggressive and there is no reasoning with him. I was right too, about 5 minutes into sacrament meeting Parker wanted a graham cracker. I wouldn't let him have one until his blood sugars came down and he was not happy! He was screaming and kicking and throwing things. I tried the hardest I could to control him until after the sacrament was over. I could feel the stares I was getting from the rest of the congregation. Not looks of disgust or anger, looks of pity, and that almost felt worse. Finally I couldn't hold back tears any longer, I picked him up kicking and screaming with tears streaming down my face and left the chapel and took him to the mothers lounge. On our way there, he started peeing his pants and got it all over my shirt. Luckily we got the majority in the toilet :)(high blood sugars cause you to urinate and there is no bladder control) Once in the bathroom his cries turned from cries of anger to cries of sadness like mine. I knew he didn't want to be that way, he didn't feel good and had no control over his actions when he is that high. We both just sat in the mothers lounge and had a good cry together for a minute. That was a hard day!! We have had a lot of hard days it seems. Parker now has to sleep with me every night because his blood sugars drop so much in the night. We wake up 1-3 times a night to test his sugars and give him food to bring him up when needed. Sometimes its an hour process to get him to eat because he is tired and angry. I don't know how Grant gets up and goes to work in the morning. He will be over 300 one hour and I will get the feeling to check him an hour later and he is a 50! ( should not be below 80) We had two sugar levels in the 40's yesterday which are very scary!! I have gotten to the point where I fear him dropping in his sleep and just not waking up, I am constantly checking him and making sure he is ok. Emotionally I had hit rock bottom! One night a couple weeks ago I was just laying with Parker while he slept and I was crying because I didn't know how I could possibly get up and do it all over again the next day. We are only into this new life 5 months, how am I going to do this for the rest of his life? I could tell Grant was worried about me. We got to talking and he said something to me that changed my whole state of mind. He told me that times like this is when we need the atonement. I had never thought of the atonement in that way. I knew Christ had died for our sins, but had never thought about the fact that he also died for our sorrows, and shortcomings. When we have given it all we can give, we can take our struggles and hand them over to him and he makes up the rest. Now when I have hard days, I pray to my Heavenly Father and I tell him I have given it the best I could, now I need his help to make me enough until it gets better. This realization hasn't made the hard days go away, but it has made them bearable. Even though I hate this trial we have been given, I am so thankful for the lessons I am learning. The lessons of empathy towards others in their trials, the realization that we all fight our own battles, sometimes battles many don't know about. Lessons that I know that I have a savior who is by side who cries when I cry and rejoices with me when we have a good day! I know that my brother and savior died for me! Not just for my sins but so that I can be enough in the moments that I don't think I am. I have learned more than ever what an amazing supportive husband I have been blessed with! There is no way I could do this without him. I have learned that I have a warrior as a son. I don't know of to many 4 year old's who could have their finger pricked every 2 hours and shots 3-6 times a day, have his blood drawn every 3 months and never a tear! He is strong beyond belief and I am so proud of him. I know I have been given this trial because Heavenly Father knows I can handle it. I take life 1 day at a time, and try not to think of tomorrow. I am so thankful for all the good days too, and pray that each day will get a little easier :)
Everyone knows about Diabetes!.. Do they?
Everyone knows about Diabetes!... Do they?
This week I took a lot of heat over my stance on Diabetics treating their disease in public places. I had no idea people could be so opinionated on the silliest of topics. I was told that "Everyone knows about Diabetes!" Implying that I can stop trying to "educate" them on the topic. It broke my heart the world my Diabetic son will grow up in. He has no idea the ignorance he will face. Luckily there is so much more good in the world than not. I hope to raise him with the confidence to brush the negative off and move on. I had many emotional moments throughout this process and afterwords. I did a lot of praying and pondering about what the right thing was to do. I have no doubt the answer I got was revelation from a very loving Heavenly Father who knows me and my thoughts and my feelings very well!! I had the thought to post a picture of Parker and to explain what type 1 diabetes is. As I typed, the words to write entered my mind, no doubt from Heavenly Father. I posted this post not knowing if I would receive support or more opposition, but it didn't matter. Sometimes in life, you have to be willing to stand alone when doing the right thing. Luckily this time, it was all love and support. But here is the greatest part that came from it all!!!!\
I had a woman contact me about my post. Her son had just recently been diagnosed and she was afraid to make it public. She had not told her family and friends out of fear of judgment, and she wasn't prepared as to what to say to them. Her son is 12 years old. He was drinking literally gallons of water a day! He was going to the bathroom all the time! He had lost weight, had blurry vision, his teachers were worried about his "attitude" at school. They had reasons for every symptom! Puberty, mood swings, thirst brings potty breaks, and potty breaks create more thirst which will end with losing some weight... The reasons go on and on. This woman's other son ended up calling 911 one day because her 12 year old was going into what they later found out was a diabetic coma! He was life flighted to a hospital and they were able to save his life.
Because of my sons post about his diabetes, she was given the courage to tell people about her experience. She now wants to educate other families about what happened to her and how they can see the symptoms and avoid going through what she and so many others go through. She was a lucky one too. Every year, so many children die because their diabetes go's undiagnosed!!
Now I don't write this boasting in myself. I know that every word I wrote was my Heavenly Fathers words. He was aware of this woman and her struggles, and he used me as a mouthpiece to speak to her. I realize not everyone is religious, they may see this differently than I, but this is what I believe. If everyone "knows about diabetes', then why every day across the world, stories like mine, or this womans happen over and over and over again! You want to know who "knew about diabetes?" ME!! I lived my entire life with a type 1 father. Who should have known more than me? I knew the symptoms, and I did recognize them too, that is why I asked my dad to come test him. But i waited a week to do so, and even when he came I was 99% confident that it was nothing.
If for no one else, my post was worth it! I am so glad to be able to have helped 1 person to not be ashamed, and to have the confidence and education needed to help someone else.
Here is my post from facebook:
I had a woman contact me about my post. Her son had just recently been diagnosed and she was afraid to make it public. She had not told her family and friends out of fear of judgment, and she wasn't prepared as to what to say to them. Her son is 12 years old. He was drinking literally gallons of water a day! He was going to the bathroom all the time! He had lost weight, had blurry vision, his teachers were worried about his "attitude" at school. They had reasons for every symptom! Puberty, mood swings, thirst brings potty breaks, and potty breaks create more thirst which will end with losing some weight... The reasons go on and on. This woman's other son ended up calling 911 one day because her 12 year old was going into what they later found out was a diabetic coma! He was life flighted to a hospital and they were able to save his life.
Because of my sons post about his diabetes, she was given the courage to tell people about her experience. She now wants to educate other families about what happened to her and how they can see the symptoms and avoid going through what she and so many others go through. She was a lucky one too. Every year, so many children die because their diabetes go's undiagnosed!!
Now I don't write this boasting in myself. I know that every word I wrote was my Heavenly Fathers words. He was aware of this woman and her struggles, and he used me as a mouthpiece to speak to her. I realize not everyone is religious, they may see this differently than I, but this is what I believe. If everyone "knows about diabetes', then why every day across the world, stories like mine, or this womans happen over and over and over again! You want to know who "knew about diabetes?" ME!! I lived my entire life with a type 1 father. Who should have known more than me? I knew the symptoms, and I did recognize them too, that is why I asked my dad to come test him. But i waited a week to do so, and even when he came I was 99% confident that it was nothing.
If for no one else, my post was worth it! I am so glad to be able to have helped 1 person to not be ashamed, and to have the confidence and education needed to help someone else.
Here is my post from facebook:
I want to introduce you to someone very special to me! This is my 4 year old son, Parker. He is my whole world!! In March of this year, Parker was diagnosed with Type 1 Diabetes. (not to be confused with type 2) When you look at him, you don't see diabetes, and neither do I, but it is there! Nothing we did caused this disease, He didn't eat to much sugar, he isn't obese. No lifestyle caused this disease!! Nothing we do will make it go away either. In a healthy persons body, the pancreas produces insulin every time you eat something to regulate your blood sugar. In a type one diabetics body, the pancreas is dead, it no longer functions. Without life saving insulin injections several times a day to bring his sugar levels down, Parker would die. When Parker has to much insulin, his sugar levels drop and he acts confused and foggy because his brain is only functioning around 50%. We have to act fast and give him something with sugar in it to bring it up. When he doesn't have enough insulin, his sugar levels are high and he can be grouchy and aggressive. This is because his body detects a problem and releases hormones to try and fight the problem. He has no control over his moods when he is high. Parker checks his blood sugar with a finger prick blood test every 2 hours every day. He has insulin injections with every meal, snack, and to fix high blood sugars in between. This will be Parker's life for the rest of his life, until they find a cure. I will move heaven and earth to care for and protect my son! I will do my best to make him feel just like every other kid out there. I hope this helps even 1 of you to understand better and to show compassion for those who fight the fight every day for their kids.
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