Thursday, November 7, 2013

The Domestic Enemies of the Diabetes Mom

Diabetes is a big freaking deal and this month is Diabetes Awareness Month. While I'm only marginally informed on the medical in's and out's  - this guest momma knows all about it. Getting a scary diagnosis might seem like a really horrible thing. That is until your child is the one who gets the diagnosis. 

Read on...

On November 7, 2003, my then 3 year old L’il Miss was diagnosed with type 1 Diabetes.  Shortly after our 5 day stay in the local Children’s Hospital, we discovered an abundance of domestic enemies. In honor of her 10 year D-versary & Diabetes Awareness Month I must rant…..

"Aunt Gertie has diabetes; she just has to take pills for it. L’il Miss must be really sick if she has to have shots ALREADY” 
I’m sure Aunt Gertie is a lovely woman, and I’m happy for her that she just has to take pills. But we are talking about 2 different diseases.  Auntie has type 2 Diabetes, which means her pancreas produces insulin, but her body doesn’t know how to use it. Pills can help sort that out.  

L’il Miss has type 1; her pancreas doesn’t make insulin, so we have to give it to through shots or an insulin pump. Taking shots is not an indication of severity of diabetes, nor is the number of shots per day, so when I (or my daughter) hear things like “OMG she has to have 6-8 shots per day she must be really sick” - we just really, really wish people would not tell us how sick they think she is. 

"My great grandfather’s cousin’s daughter had diabetes.  It was terrible.  She lost her eyesight, had her lower leg cut off, and died childless before she was 45.”
Way to go, morale booster! That's exactly what my 3 year old needs to hear just after being diagnosed with the same chronic illness.  Oh yeah, mom needs to hear that too! What you fail to mention is that your distant relative was diagnosed in 1940.  Before home glucose meters, disposable syringes, insulin pumps, continuous glucose monitors, and an ever growing selection of varieties of insulin.  A 2011 University of Pittsburgh Graduate School of Public Health study showed people with type 1 D diagnosed 1950-1964 life expectancy was 53 years, diagnosed between 1965 – 1980 have life expectancy at 69 years, and diagnosed after 1980, life expectancy is projected to be DAMN NEAR the same as the general population.  

Oh, and yes, I have 3 personal friends who were diagnosed with type 1D as children, all are over 40 and between them have 10 happy, healthy children!

"Won't she grow out of it?” “Will she have to have insulin forever?”
Referring to #1 - I'm not talking about the genuinely caring and interested askers, just the  ones who seem to not to take it seriously because they assume she will age out of being diabetic. To those people I say: “Never and yes, insulin is what keeps her alive”. 

This is the reason what was previously named ‘Juvenile Diabetes’ is now called Type 1 Diabetes.  The prior name indicated the disease only lasted through childhood. 

"Wow, I can’t believe L’il Miss got diabetes.  She has always been such a healthy eater!  She loves fruits & veggies.  It never seemed like she ate a lot of sugar.”
I’m only screaming this once.  “SUGAR DOES NOT GIVE YOU DIABETES!” Diabetes mellitus type 1 is a form of diabetes mellitus that results from autoimmune destruction of insulin producing beta cells of the pancreas.  I’m a mom, not a doc or a scientist.  I can’t explain the particulars of what that means, but I see the word “autoimmune” and not the word “sugar.” 

(Note: This also strikes me as a good way to make a mom feel like maybe she caused this. And feel horrible. Which is not cool. xo, Lydia)

"God gave your kid diabetes because you are strong & can handle it.” 
“WHUCK?”  In my head this translates to “God is punishing your kid with sickness because you happen to be one badass strong mom.” It’s said by well meaning friends & family who THINK they are complimenting you.  And it may cut the deepest…. Sorry, that’s not the way MY God works.

"What kinda parent would let a kid that little have a cell phone?”
So at the end of Kindergarten L’il Miss got rid of syringes & injections & got an insulin pump.  And it was AWESOME.  After a couple weeks we made our first venture out to dinner.  Yes, I will admit, to the uninformed an insulin pump bears a vague resemblance to a cell phone.  Yeah the pump is worn in a case with a belt clip like a cell phone.  So we’re at Denny's.  6 year old L’il Miss walks past the table next to us on her way to the bathroom.  Super Dad (soon to be here ever after known as ’jerkwad’) is at said table with his munchkins of comparable age.  He takes notice of L’il Miss & her pump & assumes it is a cell phone.  Not three feet away from me he begins to rant to his kids.  

“Did you see that little girl?  Can you believe her mother would let her have a cell phone at her age?  That’s just ridiculous.”  I realize he is talking about my daughter, glance over; give him the momma grizzly from Hades glare.  

He continues growing louder, "What kind of parent thinks a little kid like that NEEDS a cell phone?  Some people are just so indulgent…..”  

THAT was the breaking point.  “Indulgent???”  I calmly got up and walked to his table as L’il Miss emerged from the ladies.  I motion for her to join me.  “Excuse me.  I couldn’t help but hear you commenting on what you seem to think is my daughter’s cell phone?”  

“Yeah, lady – that’s just ridiculous.”  I turn to L’il Miss & ask her to take her pump out of the case which she gladly does, anxious to show off her new pump.  “You might want to take a closer look.  Do you see any numeric buttons on this?”  

“Uh, no.  That’s a pretty strange looking phone.”  

“That’s because it isn’t a phone.  It’s an insulin pump.  It’s what keeps my kid alive!  Still think I am INDULGENT?!?”  

Jerkwad turns sheepish at this point, mutters an apology.  L’il Miss & I return to our
table & I hear him softly explaining to his munchkins that it’s wrong to jump to conclusions…..Yay Jerkwad.

"I assure you our Nutritional Information is readily available on our website….”
Dining out with diabetes, especially when newly diagnosed, can be a monumental undertaking.  At this stage of the game we were almost 3 years into it.  I was starting to feel like a pro.  MOST chain restaurants offer nutritional information – either on site, or on their website.  My M.O. for restaurant dining had become:
1) pick a restaurant 
2) go online to see the menu 
3) have L’il Miss pick what she wants to eat 
4) look for nutritional info 
5) if nutritional info is available count the carbs 
6) head out to eat!  

In the rare instances nutritional info was NOT available I would always ask the hostess or server as soon as we walked in. A couple weeks after the Jerkwad at Denny’s incident we made our next attempt at dining out.  I went to the website for the colorful birdie burger place.  NO nutritional info.  Ok.  L’il Miss really wanted to go there, and I’m pretty comfortable making educated guesses on carb counts in the event they are unable to provide
nutritional info.  Off we go.  In the door and as we are escorted to our table I ask the hostess if they have nutritional info.  

She doesn’t know.  She will send a server over to help me.  NOT a good sign.  Hostess is the front line, she ought to be able to field questions.  Server comes over.  I politely ask. And am greeted with, "I assure you our Nutritional Information is readily available on our website….”  I politely explain to the server that I was ON the website not 5 minutes earlier & no, it is not there. 

She shrugs, “I dunno, I've never looked, that’s just what they tell us to say.”  I calmly ask to speak to a manager.  Junior, the 12 year old manager, approaches our table.  “Is there a problem?”  Again, I make my inquiry.  Again I am told, "I assure you our Nutritional Information is readily available on our website….”  Again, I explain that I was at the website not 5 minutes earlier & no, it is not there. 

Junior becomes defensive, insisting it is there, coming just short of calling me a liar, AND wondering aloud why I want it anyway as colorful birdie burger place is clearly not known for it’s healthy menu offerings.  I gather up L’il Miss, we storm out & across the parking lot to enjoy lunch at the golden arches (which is far from my favorite spot, however I must commend them on their availability of nutritional information.) 

Monday morning I make a call to the regional office of the colorful birdie burger place. Greeted by a chipper voice on the other end I explain I would like to speak with someone regarding how my daughter & I were treated.  I am told that the regional VP is on the other line and am asked to leave my number so he can return my call,  I do, all the while thinking “yeah right, sunshine.  He’s soooo not going to call me.”  

Five minutes later my phone rings.  Mr Regional VP of colorful birdie burger place.  He listens, he apologizes, he assures me staff will be retrained to give correct information “colorful birdie burger place does not feel it is necessary to provide this information to its customers at this time.”  THEN he asks me WHY the information is so important to me.  I explain that my daughter has diabetes, and that readily available carb counts make my life MUCH simpler, that I don’t go to colorful birdie burger place is search of healthy dining, and I am not asking them to make their menu healthier, I just want the carb info, or at least the truth that the info is not available.  

He then invites me to give them another try & offers me a gift card.  Quick thinking bad ass mom that I am refuses to let him off the hook so easily.  I decline the gift card, but recommend that a generous donation to Juvenile Diabetes Research Foundation via L’il Miss’ family diabetes walk team would be greatly appreciated.  Three days later we receive a check in the mail!  I’m happy to report that 4 years later colorful birdie burger place has one impressive interactive website providing customized nutritional info!

"I don’t know how you do it.  I could never give my child shots!”  
Really? Are you telling me that you would let your child’s blood sugar continue to rise until they have ketones, are in DKA, a coma & eventually dead just because YOU are afraid of needles?  Get a grip, oh self indulgent one. Back once again to when it is what keeps your child alive it is amazing what you find yourself able to do…easily, with confidence & grace.  No hero here, just a mom.

To learn more about Diabetes Type 1, check out the JDRF website.

(c)Herding Turtles 2009 - 2013


  1. Wow, just wow. If I could reach through the computer and hug you and Lil Mis I would in a heartbeat, but that leads to restraining orders... Moving on. Thank you so much for this information and insight. A very good friend of mine is in his 50s and has had Type 1 since about 9 (I think). He was told by a doctor when he was a child his life expectancy would be 10 years shorter than other people. He decided to prove them wrong and he sure has! So rock on :)

    Allow me to say, that is a crummy thing to have happen to your child and family. I admire your advocacy for her and the community. Thanks for the education, I am sorry I might need to use it but happy to have it. And you look great, did you do something new to your hair? Can I get you a glass of wine?

  2. Nice read! I like the suggestions.

  3. Thank you, Diabetes Moma Bear (you didn't give yourself a moniker) for this awesome post. Our Princess Imagination is best friends with a similar L'il Miss who just moved to our school this year. Princess Imagination and our L'il Miss have had a few play dates, and we have learned a lot about Type 1 freaking Diabetes. I have a food scale, and we read labels to measure out appropriate snacks. Princess is learning as well, and she especially good about defending her friend against similar enemies in the girl cliques at school. Good luck to you all.

    1. And BTW: great answer on the "I don’t know how you do it. I could never...” We all learn what we have to do for our special needs children, because we are moms. Again, you rock, Diabetes Moma Bear!!

    2. Thank you! L'il Miss has an awesome bestie who sounds a lot like Princess Imagination!

  4. If your experience is the reason colorful birdie burger place has such a detailed menu offered now upon asking, THANK YOU. from the mom of a food allergic child where that's one of very few places we can eat out.

    1. Seconding that. Its one of the few places where we can safely eat with Tiny's allergies. I'm sorry you had to deal with that asshattery, but if it fixed things, thank you thank you, many many thank yous!!!!

    2. don't know how much our experience had to do with it, but their improved website and app both rock!

    3. As someone with allergies and diet restrictions: praise you! I'm allergic to shellfish, in CO they have 2 fryers, on opposite sides of the kitchen for things. no crossing, plus the menu! yay! thank you thank you.

  5. I love these domestic enemies rants. Specifically because I never want to be the well meaning friend who obliviously says something that I think is helpful and supportive but is actually insulting/frustrating/hurtful. This post is possibly one of my favourites so far!

  6. Thank you so much for this post! My daughter was diagnosed with type 1 diabetes 3 years ago when she was almost 8. This post so accurately describes what life is like and what we go through on a daily basis. More than anything we just want her to be able to be a "normal' child and not be singled out or treated differently b/c of this stupid disease. We also got my daughter a cell phone earlier when she was younger so that she would always have a way to get in touch with someone if she needed to. That's our decision as parents and no one else's place to judge.

  7. i've only made it to the cell phone comment. i had to stop and just say GOOD FOR YOU! way to stand up to people like that! i seriously hope he learned something. okay, back to the story. btw, i think you're awesome.

  8. *standing ovation and slow clap* You go, Momma Hell Bear. And giant high fives to your L'il Miss. That was an EXTREMELY well written, and much needed, piece.

  9. Excellent article!! I've been living with type 1 diabetes for 27 years and have heard SO MANY of the comments you highlighted here. My mother, who cared for me until I was old enough to assume the duties of diabetes on my own, epitomizes that confidence and grace you mentioned. But I view her as my hero, as well as my mom, because she showed me how to live a really good life, even with this diagnosis.

    Thank you for writing this!!

    1. Agreed! I was diagnosed with Type 1 diabetes when I was 10...33 years ago. I am now the healthy mother of 3 boys ages 8, 6 & 2. Treating diabetes has sure come a long way since 1980 but we have along way to go. I hope that my kids and grandkids never have to worry about getting this disease! I could never have done it without my mom who encouraged me and let me be a kid with diabetes rather than a diabetic.

  10. My brother was diagnosed with type 1 when he was 7. It was a struggle for him his entire life. He did, unfortunately die from ketoacidosis at 18. You are a strong mother and certainly have a strong daughter. Good luck in the road ahead.

  11. This Type 1 mama is applauding and woohooing you! Great piece-way to fight the stupid!

  12. As a mother of a son who was diagnosed 2 1/2 years ago I would like to thank you for verbalizing what so many of us are going through everyday . You are an awesome educator and advocate for all of our children !

  13. I had to paste this to one of my besties, whose daughter was diagnosed at 6. They have both been total rock stars about it, but it's a tough road.

    We should all be thoughtful and kind and use the golden rule with each other. Would I want someone saying it to me? Then I should/shouldn't say it. Of course I'm a hypocrite because I dine on my footsicle regularly.

  14. Thank you for sharing your story. We are a food allergy family and have run up against some of the same things as far as online menus and poorly trained restaurant staff. But I am impressed that you were able to get that restaurant to change their website! I just wish, that people would take any food related issue, be it allergies, or diabetes seriously, because it is serious. When I tell my family it's life or death, I still get the vacant looks and blank stares. Yes, I am the crazy raving relative, but like you said, it's for our children, get out of the way. Thank you again. Best of luck to you and Lil Miss!

  15. Yay! Yay! Yay! Without revealing her super-secret identity, I'm proud to say this Momma and Lil Miss are my friends. I'm so proud of both of them!!!

  16. Amazing mama!

    I don't have any kids that need shots but I had to give myself shots while pregnant with my first so I can totally relate to that last one. Of course I was going to get over myself and give myself shots. It was just the first of many sacrifices to come in motherhood.

  17. Thank you for this. While we don't have exactly the same struggle, I have two munchkins with chronic immune deficiencies and one with autism on top of that. What you said about "God gave you this because you're strong" and the "I don't know how you do it" as well as subtle blaming of Mamas for their children's diseases absolutely made my day! Also, love the fact that you didn't let people off the hook for their ridiculous comments and the website.

  18. Way to go Mama Bear!!! My kids have food allergies and Celiac disease ( and this mama bear was just diagnosed with type 2 diabetes) so I know exactly how important those menus online are. And now I have you to thank for getting the menu up at that colorful birdie place. So thank you, warrior mom. you are a rock star and a great advocate. You may say you're just a mom doing mom things but i think you're pretty wonderful.

  19. I am the momma, and I am the diabetic. I'm about a year into the diagnosis of Type 2, and I'm struggling to learn the "new rules" for everything. Is there some place to learn this, or is it just hit and miss until you find what works for you and/or your child?

    1. Tudiabetes is a great online support group...

      American Diabetes Association

  20. BRAVA & thank-you so much for writing this post!
    I've lived with type1 diabetes for 36 years and I've heard all of the above.
    My mom raised 6 children, 3 with type 1, and like you she protected us fiercely & taught us to take action when it came to our diabetes & the Diabetes Police.
    ROCK ON.

  21. I EFFING LOVED THIS!!! I actually had the same idea and wrote a very similar post last November.

    I have had Type 1 for almost 12 years now and have heard all of that crap, only back 10 years ago people mistook it for a beeper - which was even lamer than a cell phone. I am sorry your daughter has the disease. It really sucks. But you sound like a great mama who is gonna put a-holes in their place when needed, especially when it comes to standing up for your daughter.

  22. Girl, you da bombest! We do what we have to for our kids. Period. I always knew you were awesome.

  23. Thank you for saying it so frankly, eloquently and real. We have been there too. This is a valuable piece for education. Way to go!
    Mary Beth (mom of T1D 12 yr old dx 4/1/2012)

  24. I am TOUCHED beyond belief by everyone's comments :) Thank you from the bottom on my heart for reading, for supporting, and for sharing. L'il Miss will soon be 13 years old & handles her Diabetes like a rock star! Thanks to Mommyland for the forum to allow me to get the word out there during diabetes awareness month. Diabetes is a lousy, frustrating, complicated disease that can be successfully MANAGED. As L'il Miss and I have told her classmates each year when we present info on diabetes - everyone has something that makes them "different". Some kids wear glasses or braces or have a wheelchair, some kids have brains that work a little different than other kids, mine has an insulin pump & glucose monitor. Don't be afraid to ask questions - that elephant in the room that you are wondering about may just teach you a thing or two :)

  25. Thank you for this. I am a scout leader and I have a child in our group who has Type 1. I have tried hard to understand and be accommodating, but it is helpful to have the inside track on what is helpful/not helpful. This is one of those things where if you haven't lived it, you don't get it. So thank you. I will be better equipped now to slow down, ask questions and be sensitive to this child's needs.

  26. That is an awesome story, way to go momma!!!!!!!!! We have both types in my family, my aunt's, soon to be step son has type 1. He has to check his levels quite frequently. Luckily everyone is pretty understanding of his needs and keeps their opinions to themselves.

  27. This is super freakin' fantastic! My littlest was diagnosed just over a year ago at age 8. I relate to you on the initial challenges of eating out, especially when Mimi and Papa decide we should all go to the "Sunday Lunch Buffet" restaurant where littlest is in awe of the amount of carb filled, starchy options laid before her. Let's not forget the dessert bar that takes up one third of the square footage, either. We have encountered some of the same questions/horror stories that you have mentioned above and, like you, simply provided an educational response on what T1D really is. Thankfully, littlest was able to get her insulin pump 4 weeks ago and it has been amazing! She is not quite ready to insert the infusion set on her own, although she was a pro at giving herself her shots before, but she does all of the rest of the changing process: cartridge change, tubing, drawing the insulin into the syringe and then filling the cartridge, everything except the infusion application. She's been so brave, so accepting, through this whole thing. Thank you for writing this.

  28. *applauds* My 10-year-old was diagnosed with Type 1 when she was 4 1/2 and her brother was only 5 weeks old. Those first few weeks were among the most difficult of my life, physically, mentally, and emotionally -- but in a way, I'm glad she was so young, because not only does *she* not remember life without it, she's been able to educate her friends at school while they, too, were so young that they just took it all as a part of life. Some kids have blue eyes, some kids are left-handed, and some kids have to have a shot before lunch. The boy who lives next door, who has been her friend since they were both 2 years old, has even learned enough to help keep an eye on her, reminding her to bring her kit with her when they're going down to the park, or running over to find me when she starts feeling shaky (for her, a sure sign of a dangerously low blood sugar) in the middle of a video-game marathon at his house.

    These are the blessings I think of whenever I stumble into those domestic enemies...

    1. That kind of gave me chills. What great kids.

  29. Love the rant! It sounds so familiar and I couldn't agree more at how frustrating it is to here horror stories, or dumb statements from people who don't take the time to understand what Type I diabetes consists of and why carbs matter. Just pleased to see that I'm not alone!

  30. Wonderful post, my brother has type 1 too. Growing up with it you definitely learn a lot and it still amazes me to this day how few people actually know what it means to have diabetes.

  31. My cousin and my grandfather both have type 1. My cousin has three healthy children and my grandfather was diagnosed as a teenager when they were still using insulin from animals and is still going strong! It drives me bonkers when people are misinformed on diabetes and the different types! I loved this post! Good for you for standing up for your daughter!! You guys are awesome!

  32. My oldest son was diagnosed at age 8 with type 1 Diabetes. We spent a week at the Children's Hospital, then home to begin a new way of life. His A1C was always way too high, and even when he got on the pump in high school, it was still uncontrollable. Now he's 26, off the pump, using Lantis, and his A1Cs (long-term blood sugar readings test done by Dr.) are about 7.0, which is damn near normal! He chalks it up to the adult endocrinologist...I attribute it to the fact that he's out of adolescence, when the body is awash in hormones of all kinds, and artificial insulin getting thrown into the mix has to fight for the ability to work.

    My only sibling is a brother who was diagnosed with type 1 when he was 27. He does okay, and that was almost 30 years ago. He taught my son how to do things like self-inject, since my kids were already used to watching him do his shots at the dinner table at our house.

    When my parents got to the hospital to visit us the day after we were admitted, my Mom was a crying mess. I dragged her out into the hall and told her, "Get yourself together or I'm not letting you back into the room! The boy who was in the room last night has a brain tumor and they moved him to isolation, since he might not make it until Christmas. (it was November). The second roommate was a girl on dialysis, and she's in pain all of the time. The third roommate was a baby with Diabetes. My son has a disease that though incurable for now, will allow him to die in his sleep of old age if he's one of the lucky ones. Don't you dare let him see you crying in despair!" She stopped crying and smiled for my son.

    I got a cell phone when my oldest entered middle school because he didn't want me coming there at lunchtime to check his blood sugar and give him shots anymore. After a long talk with the school nurse, I made a video with her, using an orange, showing how to use the glucagon kit that I left in her office. I told them that you didn't need to be a nurse to use it...that I had done it. And that if he ever passed out from insulin shock, they could call 911, but they needed to call me second. And that if they gave him the injection immediately, he'd be conscious and talking by the time we got there. You learn to be an advocate for your child because you have to, and when they become adults, they will know that it's alright to stand up for what they need.

    Good luck, from one Mama Bear to another!

  33. Thank you for sharing this great post! My two year old son has multiple food allergies and my husband and I also have life-threatening food allergies.

    I see many similarities in the struggles we have. Educating and raising awareness is so important.

    You are doing a great job, mom! Best to you and Li'l Miss. She's very lucky to have you!

  34. Hi Diabetes Momma - I thoroughly enjoyed this post! Would love to connect if you are interested. My son, Caleb, has been living with type one for nearly 7 years. He's 3. You nailed it in so many ways! My best to you and Happy soon to be World Diabetes Day!!




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