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
