Embracing Life & the Child with the Disease

The Pic has nothing to do with the post, just wanted to put something lighthearted in here!

Ryan came home a few days ago and said that a boy in his class told him that if he touched Ryan, he would get diabetes.  Ryan seemed a little panicked.  Instantly, I was angered.  Then I had to work myself down from “anger mountain” because this is coming from a kindergartener who was just having kindergarten conversation.  But I struggled with how much it affected Ryan.  It is one of the first things, of many, I’m sure, that has really bothered Ryan about having the disease and feeling negatively different.  So I asked him if he thought that was true.  He said no.  I assured him he was right, that diabetes is not contagious and no one could get diabetes from him.  I reminded him that he did nothing wrong to “get” diabetes either.  Then I told him the next time someone says something like that to him to go straight to the nurse and tell her what was said.  I know the nurse will correct that situation immediately . . . again, she’s an angel! 

But I have had so many questions about diabetes, and Jason & I have heard so many things from well-meaning people that sometimes becomes wearisome & frustrating.  And because these comments come from total ignorance, there’s no way to retaliate or be angry because someone is trying to say something to be positive and comforting, but it’s just medically incorrect.  So we are left to smile and bite our tongues.  And in all honesty, I had no idea about T1D until Ryan was diagnosed.  So the ignorance isn’t really a fault, it’s just simple ignorance.  Why would anyone need to know all there is to know about T1D unless they have to live with it?  I don’t know everything (or sometimes anything) there is to know about caring for a child with acute asthma or celiac disease or a multitude of other diseases or genetic disorders that require management, therapies and/or medications to remain healthy.   That’s part of the wave of “Awareness” in the health community, to educate, diagnose early and raise money for research.  Although I prefer to keep this blog a journal of our journey and day-to-day stories about us living with diabetes, I think maybe it’s time to do a little education for my readers who follow because you know & love our family, and be another educational voice for those who, like us, live with T1 daily.  

Type 1 diabetes is an autoimmune disease that occurs when the insulin-producing beta cells within the pancreas are gradually destroyed and eventually fail to produce insulin. Insulin is a hormone that helps the body’s cells use glucose for energy. Blood glucose (or blood sugar) is manufactured from the food we eat (primarily carbohydrates) and by the liver. If glucose can’t be absorbed by the cells, it builds up in the bloodstream instead, and high blood sugar is the result. Over time, the high blood glucose levels of uncontrolled diabetes can be toxic to virtually every system of the body.”  (definition from dlife.com)  Additionally, from mayoclinic.com, “Type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition . . .Various factors may contribute to Type 1 diabetes, including genetics and exposure to certain viruses. Although type 1 diabetes typically appears during adolescence, it can develop at any age.  Despite active research, Type 1 diabetes has no cure, though it can be managed. With proper treatment, people who have Type 1 diabetes can expect to live longer, more healthy lives than in the past.” 

Here are a few facts about Type 1 Diabetes and Ryan’s Onset of Type 1 Diabetes (in layman’s terms but still factual): 

  • T1 Diabetics DO NOTHING to cause them to have diabetes.
  • T1 Diabetics could have DONE NOTHING to prevent them from having diabetes.
  • The “cause” of T1 Diabetes still in the “unknown” category.  Genetics does play a role, certain markers must be present to develop the disease, but there has to be an environmental trigger to set the disease in motion (illness, virus, stress, immunizations, etc).  Someone CAN carry the markers and NEVER develop T1 Diabetes.
  • T1 Diabetics cannot take oral insulin, it must be injected into the blood stream.  Stomach acids would destroy the insulin before it reached the blood stream if taken orally.
  • T1 Diabetics do NOT outgrow their diabetes; it is a permanent lifetime disease that needs a cure.
  • T1 Diabetics do not just experience hyperglycemia (high blood sugars) but also deal with hypoglycemia (low blood sugars); it is a constant balancing act with insulin, diet and exercise.  I had a mom of a T1 Diabetic recently tell me that 2+2=4 . . . until diabetes, then all that logic goes right out the window!  (Well said, Rachel.)
  • T1 Diabetes is a 24/7 disease.  Everything effects blood glucose: diet, exercise, sleep, stress, illness, growth and puberty, etc.  It has to be managed daily or the consequences are severe:  eye disease, heart disease, kidney disease, liver disease, etc.
  • T1 Diabetes involves daily shots (we do 4-5 per day), daily glucose checks (we do about 4-6 per day) and a constant carb diet.  Some use insulin pumps and pods to regulate sugar but maintaining is not any easier (may be more complex that what we are doing right now as far as I can tell), but that is down the road for Ryan.

I suppose these are the basics or the things we are asked about the most.  Again, I’m not being critical of anyone.  If you have asked me or Jason a question or made a statement to us that you now know is incorrect, please know we were never offended.  I just thought it might be a good way to just share things that I share so often.  And I won’t mind sharing them again with you individually.  Education is always best and the facts are most beneficial.  And if you didn’t know these things or some of these things before . . . now you do . . . and that’s all that matters. 

Thanks for loving my family and caring enough to read.

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Comments on: "Just Sharing Some Facts about T1D" (6)

  1. When James was in K-2nd grade we would go in to the class around the 2nd week and just give an overview on their level about things and answer any questions they had. We would bring visuals (like the bags containing all of the clear plastic end caps representing each shot that James had from dx) and answer the “he will never outgrow it” and “you don’t get it from eating too much sugar” and the shots don’t really hurt. We also told them what could happen with a low – and to tell the teacher if they noticed something. James mostly gets fascination when he checks his blood sugar and questions about whether the pump is a phone or beeper. His friends and teammates have always been first class with him.
    The ignorance of people can be eye-opening and sometimes a little hurtful. I have almost bit through my tongue quite a few times because at times it is just not worth it to try and get through to a know-it-all. With the kids usually just a little explanation on their level goes a long way. Good luck – know where you are coming from and continue to pray for your family.

  2. Hi Amy,

    I just found your blog through D-mom blog, I was heartbroken to read what was said to your son about if someone touched him they would get diabetes. This is something that worries me often, my daughter will be starting kindergarten in the fall and I am sure that she will be exposed to some unkind comments regarding her diabetes.

    My name is Connie and I have two daughters ages 2 and 4 years old, they were both diagnosed with type 1 diabetes just 11 months apart from each other. It is so hard for me to hear the ingorant comments that some people make, but like you said, I also knew nothing about type 1 diabetes before my girls were diagnosed so I “try” not to get angry at some of the things that have been said to me and my family.

    I think it is great that we have this amazing on-line community to turn to and connect with. I recently started a blog so that I could not only connect with other families out there who live with this disease but I also wanted to educate my family, friends, and anyone who wanted to read my blog about type 1 diabetes. Thank you for this wonderful post and for educating your readers about type 1 diabetes! It’s wonderful to meet you and I look forward to learning more about you and your family 🙂

    • Connie,

      I would LOVE for you to send me the link to your blog so I can read about you. I will tell you that the comment Ryan got from that little boy is probably the worst he has heard so far. There is a book I would recommend you purchasing and having the teacher or school nurse read it to the class to educate other children about T1; made Ryan feel special and helped him to have others know what he’s going through. (Taking Diabetes to School by Kim Gosselin) I think it might curb some of the comments and questions, but all children are different and deal with it differently. We have a wonderful, angelic school nurse that Ryan adores and a school secretary that loves on him too and also knows how to care for Ryan and help him through the bad days so I don’t have to go up to school that often.

      I hear so much about siblings being diagnosed. there is a lady I have connected with on Facebook that has three children and all are T1. I cannot imagine the daily regiment of having multiples.

      Let’s definitely stay connected and get to know each other better. We can be great encouragment for each other and I’ll always welcome the friendships and having moms that I can go to with questions and have practical answers.

      Thanks for taking the time to write and connect. 🙂

      Amy

      • Amy,

        My blog is http://hopeandbeginnings.blogspot.com

        I am still pretty new to blogging but I am two years into our life with diabetes. I am so glad that I decided to share our families journey with others. I have been overwhelmed with the kindness and warm welcome that I have received from this great on-line community.

        Thank you for the book suggestion, I will look into getting that one soon 🙂

  3. Hi Amy! Found your site from a link at CWD. Do you post there?? I’m still getting used to all of it. My daughter was diagnosed the day before your son. What a whirlwind! Hoping to have time soon to read more about you all. Feel free to shot me an email! I love to talk to other “D” parents!!

    As far as this subject goes, I just went in today and spoke with Ella’s class. Not only did we recently get this diagnosis, but we were in the process of moving so the kids started a new school after Christmas break. I had to get to know everyone VERY fast! We’ve been blessed with a WONDERFUL nurse, teachers and fellow students. Today was great! I got a lot of good questions from the kids!

    ~Jenn

  4. Not sure is you can see my email!

    jennharrison77@gmail.com

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