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

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