My Diabetic Hero

 Grandpa Eddie holding Parker for the first time. 

I have been doing really good the last month or more. I feel happy and hopeful and life is great. The last couple of days or so I have felt burnt out! Not for any reason in particular just tired of the routine. Wake up, check blood sugars, get breakfast, give insulin. 2 hours later, check blood sugars, deal with morning spike and grouchiness because of high blood sugars. 2 hours later, check again, make lunch, give insulin again. on and on until bedtime... Even in the night, I am waking up, checking in the dark, treating and praying I can fall back asleep!! It gets old! Its like a bad diet, but to no end!! At least a bad diet helps to loose a few pounds, then you can quit and eat some donuts to celebrate! :) There is no quitting diabetes. No cheat days, not freebies. its a 24/7 365 days of the week job! Sometimes I just want to let him eat what he wants when he wants because that would be soooo much easier than the daily fight I have over what he eats and when. I get tired of counting carbs, measuring food, remembering to check sugar levels, calculating insulin and so on... 
In the middle of my mental tantrum this morning I had an awakening... I have lived this life for 8 1/2 months now. My dad however, has been dealing with this for 40 years!!! How does he do it? I have no idea. My entire life growing up, diabetes wasn't really a big deal. We all knew not to eat his peanut M&M's in his glove box. We knew to get him juice is he was low. We knew he took shots, and later had a pump, but I personally never thought about the toll it took on him personally. 
I look at these pictures above and I wonder what their spirits were saying to each other.Did they know the bond they would share some day?I look at my dad and I cry because he has battled this disease for so long and he never complains. He quietly takes out his pump and takes care of business without drawing any attention to himself. There is no way I could have made it though the last 8 months as well as I have without him there anytime of day to help and give advice. I hate that I know just a little of what he battles, but I am so eternally grateful to have my dad in my life. Nothing would bring me more joy than someday to have a cure and the two of them together can rejoice! I know the last 8 months have been hard on my dad too. I know he feels in some way responsible for Parker having diabetes. I know it has nothing to do with him, its just the luck of the draw. The two of them will forever have a bond. I know there will be times in the future where Parker will struggle with things only grandpa will understand. I know when those times come, that Grandpa will be there then too. I hope my dad knows how much I love him. How grateful I am for all he does for me. The phone calls to see how Parker's numbers have been, the advice on treating high and low blood sugars. The constant counsel to not expect perfection and accept the roller coaster of reality that type 1 diabetes is. He cries with me when I cry and he celebrates when we have a good day. He listens when I need to vent and know only he will understand. Thank you dad for being my diabetic hero! 

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! 

he's my son-mark schultz (with lyrics).wmv

this song really touches my heart...

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!! 

 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!!

Warning!! super depressing post, with good lessons learned.

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 :)