Please, Don't...

February 19, 2013

Please, Don’t….

When a child is diagnosed with Juvenile Diabetes, a parent is suddenly bombarded with an over-abundance amount of information, has to adjust to a different lifestyle and disease management, and is often sleep-deprived, confused, depressed, and overwhelmed. The entire family is impacted. To boot, well-meaning friends, extended family, and sometimes strangers say the damndest things to a parent who’s trying to cope with keeping their baby alive and healthy (and some of us, more than ONE child!). Functioning as a pancreas is a full-time job; functioning as two pancreases must be against ALL US Labor Laws.  It's overtime with out the time-and-a-half pay! We understand people mean well, but honestly, some of the ignorant remarks can be hurtful.  It’s like adding insult to injury. We understand not everyone fully understands this disease, as we all didn’t either until it was thrown forcefully into our laps. Now, we try to educate so we can improve understanding and perhaps inspire another person to donate time or money to finding a cure. However, if it’s been a rough night, or the person has a particularly indignant or judgmental tone, or the person says something horrifying in earshot of our innocent babies, it’s really hard to bite our tongues! If you don’t know what to say, don’t say anything …. except, “I’m sorry” or “I’ll be thinking about you” or “How can I help?”

I alluded to this in an earlier blog (Type One vs. Type Two Diabetes), but now I’ll expound on the subject.  With great reminders from awesome fellow Type One Parents from a cool forum, I’ll let you read some of the wonderful, well-meaning things that have been said to some or all of us.  In no particular order:

1.       “It’s just diabetes; he’ll be fine!”  Yes, yes, it could be worse, but please don’t undermine the seriousness and gravity of this disease.  It is a constant and everyday struggle to manage and keep your child alive and healthy.  And, NO, you don’t have a crystal ball to tell us how our boys will turn out!  Frankly, this statement is dismissive of a mom or dad’s mourning of their child’s pre-diabetic life and the “perfectness” and innocence of their childhood. It’s dismissive of a mom or dad’s effort and energy spent into managing an often unruly disease!

2.       “It’ll make you a better mother” What the…?  Did I SUCK before so I needed a life-altering diagnosis to get me to fly right?  Having your child diagnosed with T1D WILL require you to be more diligent, organized and overseeing about certain aspects of your child’s life and medical care (until he or she can manage his/her disease on his/her own), but it won’t change your basic parenting.  Diabetes won’t prevent your child from sitting on the therapist’s couch because of your newfound parenting prowess!

3.       “All he has to do is take insulin.”  Yes, he has to take insulin.  But, it’s not so simple.  We have to check blood sugars via finger-stick AT LEAST four times per day (but up to 10 times per day if needed).  Did you read that?  Four to ten times per day we have to inflict pain and cause our babies to bleed! We have to count every carbohydrate he eats.  We have to become math geniuses and administer a set dose of insulin based on the blood sugar and the amount of carbohydrates consumed. What works well one day, will fail miserably the next. It’s a fantastic mix of science, math, voodoo and sorcery to get that perfect unattainable blood sugar or Hemoglogin A1C level! We have to worry about highs, lows, complications, every single meal and snack, endocrinology appointments, ophthalmology appointments, pediatric appointments, quarterly venipunctures for lab work, and middle of the night blood sugar checks.  So, yes, insulin is the primary medication that maintains his life, but that’s not “all”!

4.       “You can’t have diabetes, you’re too thin!” Again, T1D is NOT a lifestyle disease.  It’s an autoimmune disorder wherein the pancreas is attacked and can no longer produce its own insulin.  At the onset of the disease, the patient is essentially starving to death because glucose cannot enter into the cells (because insulin carries it into the cells), so most often, the patients ARE very thin.  So, thanks for noticing!  (Just for the record, I DO wish someone would say that to me when looking at my fabulous post-five-babies abs or my caboose!) On the flip side, it would be equally inappropriate to say, “You must have Type 2 Diabetes because you’re such a cow!”

5.       “You shouldn’t have given him/her too much soda (or other sugary substance) because it causes diabetes”. To try to explain the difference between Type One and Type Two Diabetes can be taxing.  Some people just want to be “right” and are indignant if educated. Our children did NOT develop diabetes because of too much sugar.  Saying T1D was “caused” by sugar is like saying your baby’s hair color was caused by the prenatal vitamins you took.  Unrelated.  Genetics aided in both their hair color and their propensity to develop an autoimmune disorder. They developed diabetes because these wicked little antibodies decided to have a war inside their tiny bodies, and the pancreas was killed by this “friendly fire”.  Poor diet, nutrition, and lifestyle CAN lead to Type 2 Diabetes because the person is taxing the limits of the pancreas’s capabilities (and other organs).  It was nothing I fed my child; had nothing to do with my pregnancy; had nothing to do with my career choice; had nothing to do with the street I live on.  Trust me, we did not cause this disease by poor parenting and indulgence, and we’d do anything in the world to take it away from our babies!

6.       “I know how you feel; My cat has diabetes” I know people love their pets (I adore my worthless dogs), and there may be some people who love their pets more than they love their kids.  However, for most of us, our kids are our top priority!  So, I’m sorry you have to limit Garfield’s lasagna and give him a shot in the scruff of his neck twice a day (and hope he doesn’t scratch or bite you), but it is NO comparison to the illness of a child!  As a matter of fact, I’ve told my veterinarian that my dogs are just going to have to be dogs because I have CHILDREN to pay for and medicate.  The dogs fall to the bottom of the priority list in that regard!  Please don’t compare your animal to my human sons!  Furball’s diabetes is just as different from a human’s diabetes as is his ability to lick himself.

7.       “You STILL have to poke his finger?” Unfortunately, when we all went to Diabetes Education classes, we did NOT walk away with mental telepathy.  (Rather, I think we left with mental fatigue.  Two different beasts, not the same). We cannot guess what a blood sugar is at any given moment, and it can change dramatically in minutes.  So, even those who wear Continuous Glucose Monitors STILL have to check their sugars because the CGM is only a tool.  Until new devices are developed or a cure is found, we have to check blood sugars 4-10 times per day.  By adulthood, the tips of their fingers will be as hardened as a spinster’s heart!

8.       “That’s good!  He has a pump, so now you can control it!”  Regardless of the method of insulin delivery, diabetes is a disease that controls us.  The only thing the pump changes is that the child doesn’t have to get a shot every time he/she needs insulin. It’s a personal choice, and diabetes can be managed on Multiple Daily Injections (MDIs) just as well  as with a pump.

9.       “Cinnamon.  Honey. Alkaline Diet. The Root of Some Exotic Plant” Holy crap, really!?  WHY didn’t someone tell my Endocrinologist about this?  Man, we’re wasting so much money on supplies and insulin, research and treatments when the simple solution has been sitting on the spice rack all along? I’ll repeat: There are a lot of books out there about diabetes cures and treatments.  Most of these refer to Type 2 Diabetes and will NOT help my sons. (They may or may not help a Type 2 Diabetic either). Trust me, if it would, I would’ve tried it already….multiple times.  If cinnamon would help, I would’ve already made them eat spoonfuls of it.  If honey would help, I would’ve injected it into their veins already.  (Instead, they need lots of insulin to cover the carbs in honey!)  If an alkaline diet would help, I would’ve already given them an Alka-Seltzer enema.  (Not sure that would cover it, but it sounds good!)  And, if the leaves of some exotic plant would cure them, I’d go pick the leaves myself while dancing naked and then they’d drink the tea daily.  (And yes, if it cured my boys, you could post it on YouTube to scar and scare the general public). Unfortunately for them, none of that will take away the attack on their tiny pancreases.  I wish it would.

10.   “When will she grow out of it?” This disease isn’t like tennis shoes , new dresses, middle school boyfriends, or colic!  They don’t grow out of it. (Don’t we all WISH this was temporary?!) Junior and the Big D better get cozy and friendly, because until a cure is found, they’ll live with this disease for the rest of their lives.  *crossing fingers* Maybe one day…

11.   “What was his/her diet like before diabetes?  How much did you have to change?”  Beating a dead horse here, but bad dietary choices did not cause this disease. Saying diet caused my identical twin sons’ diabetes is like saying Rock ‘n’ Roll caused Elvis. Personally, we changed almost nothing in my house.  I already cooked lean meats, vegetables, fruits, low fat dairy.  Chips, cookies, processed foods, and fast food are the exceptions in my house, not the rule.  Sugar was dramatically limited. The only change we had to make was to suddenly become a food diary and look-up and memorize the carbohydrate counts on tons of different foods.  Putting this information into my database has caused other things to be tossed into the Recycle Bin in my head.  I don’t know what the year model of my car is or what year I was born, but I can tell you that one hushpuppy averages 8 carbohydrates each, and the average banana is 30 carbs! I AM still 29, right?

12.   “You don’t have the diabetes under control YET?” We don’t control diabetes, it controls us.  It’s like putting the reins on an untamed horse.  Sometimes, pulling on the reins will work, sometimes it’ll buck the other way.  We hope time, effort and holding tightly to those reins will allow us some control, but some beasts remain untamed. As parents, because we love our children, we try everything to keep diabetes under control (see # 3 above). The only control we have is consistency, timing and SWAG’ing!

13.   “I guess he/she should just have a salad.  I guess he/she shouldn’t eat the bread” These are things we’ve heard when asking a waiter/waitress if they happen to have the Nutrition Facts of their entrees or meals.  Because people look at you like you’re bat-crap crazy when asking, we feel the need to explain that our child has T1D, and we just want the carbohydrate counts of the over-priced foods we’re purchasing from your establishment so we can appropriately dose the insulin. We’re not food critics, we’re parents.  Relax! Instead of “No, we don’t have it available” or “I’m sorry”, we get diabetes management advice from a waitperson who makes $2.15/hr.  I guess having a name tag that says both “Texas Roadhouse” and “Suzie” on the same piece of cheap plastic makes you an Endocrinologist and a Nutritionist!  Skip college, get the plastic tag!

14.   “That’s what sitting home eating potato chips will do for ‘ya!”  If this had been me, I think I’d be facing an assault and battery charge right now.

15.   “Type One.  That’s the good (or bad) kind, right?”  I didn’t know that any disease was good, especially in an innocent child who did nothing to deserve this!  It’s difficult and life-altering, not good.

16.   “Why do you poke her finger so much?” Says fatty-fatty-two-by-four Grandpa who’s consuming two desserts after a meal with over 2000 calories while injecting 320 units of insulin in one sitting (trust me, this is an enormous amount of insulin).  All the while, his foot is falling off, he’s going blind, and his penis quit working years ago because his diabetes is out of control.  Why, you ask?  Because, she has T1D; I love her; I care about her health; Things can change in an instant; and, I don’t want her to be in your condition by the time she is 40.  (I don’t think she’ll have to worry about her penis, but I digress!  You get the point!) Are those enough reasons to check more than two times per day?

17.   “It’s JUST Juvenile Diabetes!”  Why yes, yes it is. Thanks for pointing that out!  I hadn’t noticed!  Sheesh, really? Because when they hit 18, it's still freaking diabetes, they just aren't a juvenile anymore.   They won’t outgrow it!  They will live with this craptastic disease until the day they die, and as parents, we hope our hard work will mean they don’t die sooner than the next brat!

So, dear family, friends and nosy neighbors, we really do try to be nice.  We really do want to educate.  If you don’t know or understand, ask.  Please keep stupid, presumptuous, demeaning and ignorant remarks to yourself. They’re not helpful.  If we give you more information to help you understand, then accept it. We KNOW it can be worse, but it could be so much better, too!  Don’t say it…please, don’t….

Rhonda