​Marianne Rice​
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​I am a mother of two children with type 1 diabetes. And this is my story. My life.

1/24/2016

15 Comments

 
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​My daughter was diagnosed with type 1 diabetes in July of 2008. She was only seven years old. We knew nothing about the disease and it doesn’t run in my husband’s or my family. Needless to say, we had a lot to learn and it’s been a constant uphill struggle. This past Christmas my husband and I saw signs of the disease in our nine year-old son. Because of the holiday craziness, and then the sudden death of their grandmother on January 2nd, we pushed the signs aside (constant hunger and thirst, getting up to go to the bathroom multiple times at night, weight loss).
 
On January 14, 2016 my husband and I decided to check our son’s blood sugar with his sister’s meter. He tested HIGH (500+) and his ketones were HIGH. We called the doctor and were told to go to the ER. The doctor confirmed the diagnosis and the family wept.

I would have thought the second time around would have been easier. I was wrong. When our daughter was diagnosed it was all so new. We didn’t know about the battles ahead of us, and were overwhelmed with all the new learning: carb counting, insulin dosage, changing dosage, hypoglycemia, hyperglycemia, comas, and ketoacidosis. With our son, we “knew” the drill and what his life, too, would forever be like.
 
I ugly cried like I never ugly cried before. He’s my baby. So little, so cute, so funny, so charming. What will this life-long disease do to him? Will it suck the life out him like it has my daughter? He’s been the glue holding our family together. I can’t lose him to this disease as well. 

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​There are so many struggles parents of diabetics go through that break our heart, and sometimes our spirit.
 
When you have to tell your child he can’t go down the road to hang out at the neighbor’s house because they aren’t trained to administer his shots.
 
When your son’s blood sugar is 95 and goes off to play with his buddies only to come back 10 minutes later because he’s shaking and sweating and weak and find out his blood sugar dropped to 39 for no other reason than he has diabetes and it can’t be controlled by a clock or a plan.
 
When your daughter wants to go to a friend’s house but you don’t trust the parents to follow through with the diabetic care.
 
When you’re out and about and run out of fruit snacks (the fast acting carb of choice by your children) and have to buy a soda and tell your child to chug it, only to receive stares from parents who are probably questioning your parenting skills…and not caring one bit.

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​When your 14 and 12 year-old daughters have been babysitting their 9 year-old brother after school for a few years but they are not comfortable giving shots or figuring out his constantly changing insulin-carb ratios so you have to leave work early to pick your son up from school.
 
When your daughter hears a joke about diabetes at school from kids who don’t know better and she wants to punch them in the face or go ape $#1+ on them and you have to tell her to behave respectfully, and educate those around her (when you feel like punching people in the face as well).
 
When your family goes to a family friendly movie and the characters make a joke about diabetes and everyone in the theater laughs and your children feel insulted.
 
When people offer special recipes or beverage mixes that will control blood sugar. When in reality these things have NO impact on a type 1 diabetic.

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​When you can’t go out with your husband because your children are too old to hire a babysitter—plus you’d have to train the babysitter in diabetic care—and they’re not ready for the responsibility of taking care of their diabetic brother. 
 
When one child enters carbs into her pump and the other has to do shots for every morsel eaten because he’s not approved for the pump yet.
 
When people ask if your child can have a cupcake. YES!! And she has to have as much insulin for a cupcake as she does that giant apple you’re offering her instead.
 
When you’re at a party and everyone is ready to eat but your child checks his blood sugar and its 350 and he needs to wait 30 minutes before eating but everyone else has started. And you feel bad and tell your child to eat anyway, knowing it’s not good for him.
 
When your daughter throws a fit and says she wants to be just like everyone else and eat a handful of pretzels without pausing to test her finger and give herself insulin. 

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​When your teenage daughter wants to fit in with the other kids at the high school and drink an energy drink from Aroma Joe’s knowing the sugar spike will majorly mess up her school day.
 
When your son puts on his hat and gloves and snow pants and snow boots and winter coat to go outside to play only to come back in five minutes later because he feels low and has to sit on the couch and watch his friends play while he waits for his blood sugar to come back to normal range.
 
When you have to wake up all the children and go to the ER that’s an hour away instead of the hospital that’s 20 minutes away, because they have the best diabetes care—twice in one week. For two different kids. Both diabetes related.
 
When my child throws up and I don’t know if she’s sick with the flu or if it’s from complications from diabetes and have to call the doctor and rush to the emergency room.
 

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​When you look at your daughter’s left hand and sigh at all the scars on her fingertips and tell her to use her right hand to test, but she refuses.
 
When my needle-phobic 9 year old son no longer screams when he has blood drawn and IVs inserted because it’s old hat now.
 
When you can’t rush out the door to go anywhere because you have to check both children’s diabetes bags—who are on different meters, insulin and needles—to make sure they have back up insulin, needles, test strips, fast acting carbs and the dreaded glucagon shot. Even if we’re only going on a quick five-minute trip to the grocery store.
 

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​When people keep telling me how strong I am when all I want to do is curl up in a ball and cry and sleep…and none of this is even happening to ME.
 
When people kindly say they hope my children feel better. They feel fine. It’s not a sickness, but a disease that no pill, no exercise and no diet can make go away. It’s a life sentence that they must learn to live with.
 
When people say say God wouldn’t put this on our plate if He didn’t think we could handle it and I think God has made his first mistake.
 
When you have seven different alarm times preset on your phone and get up multiple times in the night to test your child’s blood sugar, or go check on him or her to see if they are still alive and haven’t gone into a diabetic coma while they are sleeping. 

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I hate that our family’s normal is so not normal.
 
I hate that my children’s normal is nothing like their friends’ normal.
 
I hate that my newly diagnosed son’s numbers are so wacky that every week he is pricking his finger at least 84 times and has had 49+ injections.
 
I hate that even though my daughter has had diabetes for 7 ½ years and is on the pump, she is embarrassed to have a device stuck to her body 24/7.
I hate not being able to kiss a boo-boo and make things all better.
I hate this disease.
​
But I am thankful.
 
Thankful for my diabetes support groups. For the amazing team of teachers and nurses at my children’s schools. For our friends who are a constant sounding board. For my children’s friends who love them and care about them unconditionally. For a loving husband who tends to the kids and lets me hide in our room and cry when I need to.
 
I am thankful for my children’s health. They don’t often get sick with colds or flus or stomach bugs. Their immune systems are healthy and strong; they’re active in sports and can do anything their heart’s desires. My son may not be able to go into active combat in the military, but there are other options for him. He’s only nine and already researching “cool army jobs for diabetics”.
 
I am thankful my children are alive and that I can love them and cuddle with them and smile and laugh with them every single day.
 
For more information about diabetes, visit the ADA and JDRF websites:
http://www.diabetes.org/diabetes-basics/type-1/?referrer=https://www.google.com/
 
https://www2.jdrf.org/site/SPageServer/?pagename=walk_homepage
 


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15 Comments
Lindsey link
3/16/2016 06:48:41 am

Hi wow no words can ever tell you anything about how your family feel.
My son is 11 now diagnosed 3 years ago cant imagine 2 children you poor things. Do you think one day the public will take note of what Type 1 Diabetes actually is because enough is enough.
Its like Diabetes oooo that's that thing were kids cant eat sugar cos they ate 2 much but its OK cos they should not eat it anyway bad for teeth. AHHHHHH.
Imagine saying to one one of these Joe blogs go on try it for one day they just hear needle and say oh no i could not i don't like needles. Yet in reality the poor children are saying hmm yeah OK give the tests please just help me not go low because that's the real killer for them.
A member of staff at school actually told me well he should be ok because my husband has it and he manages fine when i asked if he gave himself injections she said oh no we don't let it get that bad.AHHHHH.
Any way rant of the day over i have to go into school with children's services to ask why my son got told off for the second time in one week for checking his bloods without 2 members of staff watching even though two teachers in room but they were busy doing there PPA. And why they never even offered the choccy bar the whole school got except him.

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Ed
6/18/2017 10:14:52 pm

I was 6 years old in 1957 Diabetic Type 1 it has been a difficult uphill path newer testing procedures have helped.

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Marianne Rice
3/17/2016 12:20:23 pm

It's so hard, no matter how young or old they are. My 14 year old daughter gets quite upset when she hears people joking about diabetes and obesity or sugar.
Hugs to you!

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Jamie Mitchell
4/12/2016 11:04:50 am

Hi, Beautiful Angels in these/our Children's paths:

I love that you are able to share your struggles in today's technology. Diagnosed in 1974, I understand what you are going through as my 15-yr old was diagnosed in 2005 Stay close to God as the rigor, pain, hurt, depression, anger, remorse, conviction that you are facing is NOT from Him. You were His Chosen for a reason. My mom, as awesome as she was at helping me achieve success against this devil, died in 2004 because of the stress and ownership of this disease overcame her and took her life. Although Peggy helped me to write this letter; today, Peggy was key to my success and helped me to graduate and participate and excel in high school sports, to be a college athlete and graduate and to work for a diabetes pharmaceutical company, selling guess what-insulin-REALLY? and do quite well as a Circle of Excellence winner and be ALL that I have been in life,
Peggy did not know God as I know Him. The stress of it ALL overwhelmed her and Satan motivated her ultimate decision-not from God.
I know that my Father has been holding my hand for 42+ years. He held me and my former wife in His arms as well held our innocent son when he was diagnosed at age 4. He held my mom in His arms as she carried me in her womb and to my unexpected news in 1974.
Not to be over-spiritual, BUT He knows what He is doing. He wants ALL of us to come together and share His love with one another and share His good news. I feel your pain, anguish, but, I cry with you with His understanding and my discernment. He has a plan when He says so in Jeremiah 29:11. He also gives us strength when He says to be strong in Philippians 4:13. Type 1 diabetes is NOT a death sentence, but His perfect plan of a life to prepare ALL of us to be with Him for eternity! If I have not been compassionate and empathetic and this comes across as anything more than encouraging, then I am sorry. But, with all my struggles that you mentioned, above, and new challenges with 42+ years of Type 1 diabetes COMPLICATIONS, are not of God. I bravely accept these daily struggles as a pre-curser to what Jesus went through on the Cross-not hardly, right?? So, ladies and gentlemen, you ARE and WERE His Chosen for a reason. He loves us and will NEVER leave us nor forsake us because this is Who He is. Tell the lying, satan devil, Type 1 Diabetes, to "blank" off or whatever your chosen words are, and put on your headgear, breast plate and armor and beat this "layup", not 360 dunk of a disease because He has given us the tools and He has shown us, ALL, with His Son, on the Crucifix!!! He has also given us His fruits of His Spirit and all His love in 1 Corinthians 13:4-7.
Finally, I am ALWAYS available to love, listen, share and comfort those who are just fed up with this so-called "death sentence" since I am living proof, not perfect by any means, but given mercy and grace to defeat this " wanna be" punk of a disease.
With my grandmother defeating cancer, twice, in the 60's and living into her 80's, my thriving aunt, who is in her late 70's, with cervical cancer, but, still alive and my sister, currently taking r adiation after horrible chemo treatment for breast cancer, God is alive in All of us if we accept His Perfect plan and parenting skill.
My brothers and sisters, I love you and I want to give you all if His hope. While it is not going to be easy, it will be worth every minute of it, I promise. I share this because, you, are His children and, you, are His chosen to defeat this enemy. Don't be like Peggy, but go crush this enemy so that we can and will rejoice with belly laughter so hard, we will cry huge happy tears, "on earth as it is in heaven"-Matthew 6.

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Lynne Anderson
1/10/2017 07:34:02 pm

Heartfelt comments, as a mother also of two diabetic daughters I was also heartbroken however although I was worried about my children going to places I let them go preferably with a blood sugar a bit high in the first instances of days out. People might think think is wrong but I can't expect other parents to be experts but I hope my children in time will be their own expert alongside advising friends and parents what to watch out for if things go wrong. It's trial and error and not to be too over protective, it is what it is but life's for the living.

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Marianne Rice
1/10/2017 07:43:16 pm

Hi Lynne,
Yes, I still worry. It's not the responsibility of the parents, yet it is. I do my best to instruct them on signs, but it took my husband and me weeks to learn how to care for my kids. It's so scary. Trial and error is definitely describing it well. Even with a careful eye and carb counting to a T, there will still be highs and lows.

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