The Art of Forgetfulness

 Maddie is a talented girl.  I am often amazed at the things that she knows, and is capable of doing, and doing well, at the age of 12. Among other things, she is smart, witty, and super funny. She has a hint of sarcasm, but fortunately, she only uses it in humorous situations.  Oh, and most importantly, she has an impeccable memory....when it has to do with ANYTHING besides her diabetes.  With that, she is struck with an early onset severe memory disorder. 

"Did you check your blood sugar before lunch?"

"Ooohhhh...I forgot."

"Did you correct for your spaghetti like I asked you to?"

"Oops--I forgot."

"Don't forget to correct for that snack!"

{Hours later} "Uh oh....I forgot."

"Your blood sugar is a little too high right now.  Save that candy for when it comes down."

"Aww man--I forgot!"

I thought this kind of memory loss is supposed to be saved for women after they've had children.  I understand that she hates that she has to always deal with this stupid diabetes, but I would think that it would be automatic by this point.

It's weird--she can't remember anything that has to do with diabetes and carbs and insulin, but she doesn't seem to forget where her iPod is, or how much chore money she's owed, or that last Friday I told her I would get her favorite snack at the grocery store next time I went, or that I told her she could occasionally stay up until 11pm on some school nights (whaaaat?!?) or that 5 weeks ago, I promised her that I'd take her to Aeropostale at 2:30pm next Saturday (really?).....

You Can Lead a Horse to Water....

I pride myself on being on top of Maddie's diabetes, for the most part. The only
times I'm not is when things are chaotic, I'm putting out fires, fixing or
cleaning up from a meal, and she runs off to her room. (Another time I'm not on
top of it is when she goes somewhere without me, Shawn or my mom, all the while
PROMISING to check her blood sugar, and correct for it, and for her food.) But
I'd say that 95% of the time, I'm on top of it.

So now that she's 12, and thinks she's 25, our conversations go something like
this:

"Maddie- correct for your blood sugar, and bolus for 60 carbs."

{Silence}

"Maddie! Correct for your blood sugar and 60 carbs!"

"Ok."

{30 seconds go by....}

"Did you correct?"

"I'm getting ready to."

{30 more seconds go by....}

"Did you do it?"

"Mama, I'm really getting ready to!"

"Do it now."

{silence}

"Maddie, I'm waiting...."

"Ok. Correct for my blood sugar and 60 carbs" as she runs up the stairs.

"Don't forget!"

"I won't. I'm doing it now!"

Fast forward 2 hours.

"Maddie, did you correct?"

"Umm...."

"Check your blood sugar NOW!!"

At this point, she is usually very high, and you know how this story ends....

I wonder why I have to ask her to do it so MANY times, (the pump is attached to her body, so she doesn't have to go far to get it,) yet she forgets to correct. I know the years ahead are going to be hard, but I'm not sure I can handle the teenage years AND diabetes. I am trying to instill in her that SHE controls her diabetes and SHE controls her health, therefore SHE controls how she feels throughout the day.  I want her life to be "normal" and I absolutely hate that she has to deal with this stupid disease every hour of the day. 

Starting Over

This past summer, we made a very important decision.  Maddie decided that she wanted to go back to school.  Instead of going to the private school where she attended K-2nd grade, with a full-time nurse to keep a watchful eye on her, she went back to public school.  Back to having 25 kids in one class, back to me not knowing what or how much she's eating, back to a nurse being at the school ONE day per week, back to regular daily recess and PE sessions, and back to me worrying about her for approximately 5 hours of the day.

I honestly enjoyed homeschooling Maddie.  I can't guarantee that I was the best teacher in the world, but we had a really good time.  Unfortunately, I'm not one of these supermoms that I have come in contact with on a weekly basis over the last 2 years who have made it their life's work to educate their children.  I just did what I had to do at the time, and now I'm through with it.  When I started really thinking of all the "normal" fun things that she was going to miss out on by not being in a school setting, I started to feel guilty.  It doesn't have anything to do with her social skills, but more importantly, little things like chatting with her friends at lunch and recess, playing an informal game of kickball on the playground, field trips, Go Far, and the list goes on and on..... 

I had started thinking about checking into the school where the neighborhood kids attend.  I asked around (including people whose kids do not attend there) and found that it was in fact a great school--the best elementary school in the county.  I made a brief mention of "going back to school" to Maddie, and she was all over it.  All it took was one tour of the school, and she was hooked.

Then came the logistics.

"Maddie, you HAVE to remember to check your blood."

"Maddie, you have to speak up when you are feeling low, or are high."

"Maddie, you have to call me if your site needs to be changed."

"Maddie, you have to remember to give yourself insulin when you're through eating lunch."

"Maddie?  Maddie?  Maddie, are you listening to me?!?"

Then it came time to talk to the teachers, principal, and nurse about diabetes.  They are so very sweet.  I laid everything out very simply and neatly, and they took notes, and asked questions, but they have never had a diabetic child at the school before, so I still worry.  I was surprised to find that they were all attending a Type 1 seminar before school started, but I'm not sure how much information they were expected to retain--sometimes things like that are very overwhelming.  I do believe that if there is a question about anything, they will not hesitate to call me.

So, now we've been in school for over a week, and I have to say, she LOVES it.  Every day there's a new friend.  Every day, something hilarious happens in class.  Every day, they do some crazy-fun experiment or game.  Every day is better than the day before.  But still, every day I worry about her blood sugar.  But at least I know she's having a great time and enjoying herself, and that they're taking good care of her....every day. 

The Dreaded Appointment

Every other month we see our endo, and on the way there, I dread finding out what Maddie's A1C is. This time was no different. Alas, the A1C machine (don't know what it's called) beeped, so I asked. She had gone from 8.5 to 8.7. Although I was glad she wasn't in the 9's, going UP was not the direction that I was hoping to have gone.

I allow Maddie to be a little higher at night, or I don't give her the complete correction, because I have this eminent fear that she will crash during the night, and not wake up. Because whatever the number is, I don't know if it's going up, or down at a rapid pace.  (We do not have the CGM at this point in time.) This is my problem--she's too high during the night and first thing in the morning. And it's all my fault. I've come to grips with this. I take full responsibility.

I HATE DEALING WITH THIS STUPID DISEASE.

In addition to screwing up her A1C, her height and weight has gone from the 50th percentile, to the 25th percentile over the last year. Yeah, I know--I'm such a great mom.....not. My child is shrinking. Well, actually, she's not shrinking, she's just not growing.

I HATE DIABETES!!!

"But she's picky!" and "She isn't hungry much of the time!" and "She eats healthy food MOST of the time, so she's probably not getting enough calories!" These were my ignorant and useless justifications for my reprimanding from the doctor. Basically, she's not eating ENOUGH, therefor, not getting enough insulin. Could this be any more difficult to grasp in my little blonde brain?

Everytime I read other type 1 moms' blogs, I learn something new--like how the humidity can alter blood sugars, or how allergies to pollen can send you through the roof. Will I ever get the hang of this? I mean, come on, people--you would think that after almost 5 years, I would have gotten the hang of this by now.

Nope. Did I mention that I hate this stupid disease?

Reilly

When Maddie was diagnosed, she was almost 6, and being that her birthday is 10 days apart from her little brother's birthday, Reilly was almost 2.  He doesn't remember the wretched summer that she was diagnosed.  He doesn't really understand a lot about diabetes, but he knows that it's a serious thing in our family.

For a long time, he called it "beetees" and he knew that beetees hurt his Sissy, and that we don't like beetees, and that when you have beetees, you have to go to the doctor more times, get more shots, give more blood, and a whole lot of other scary things.

Over time, and after hearing us openly discuss the importance of Maddie's blood sugar, insulin, food, pump, exercise, and overall health, he's come to understand a little bit more about it....well, as much as a 5, almost 6 year old without diabetes can understand.....or so I thought. 

They play a lot together at home, so he has learned to be patient when it comes to waiting for her to check her blood, or waiting for her to give herself her insulin, or waiting while she gets her site changed.  He just knows that it's something that she has to do, and she can resume playing as soon as she's through with whatever it is that she needs to do.

Today, we were riding in the car, and as usual, we were in a rush.  And as any other frazzled mom would do, I drove through the McDonald's drive thru to feed my kids their lunch.  There is one very important thing here that I need to state in my defense.  Upon eating the entire contents of a happy meal, although nutritionally it's horrible for her to eat, I know the exact number of carbs she's putting into her body.

**For the record, I prefer Chick-Fil-A, but unfortunately, it's not on my way home.

Yes, I know that it is not real chicken, and everything is fried, and that essentially it's total crap, but nonetheless, I know the exact number of carbs that she's eating.

As we drove, she and I went through the whole song and dance, which goes a little something like this:

"Maddie, did you check your blood?"

"Yes."

"What were you?"

"127."

"Did you eat all your nuggets?"

"Yes."

"Did you eat all your fries?"

"Yes."

"Even the ones in the bottom of the box?"

"Yes, mama."

Then I tell her to give herself insulin for the correct number of carbs, according to the nutritional labels inside McDonald's, on the Happy Meal box, and on my nifty little iPhone app, in which I know ALL nutritional information of a bazillion food items at a bazillion different restaurants all over the USA.  And fortunately, it's correct every time.  She's never high afterward.....usually..... 

Anyhoo, my point to all of this is that after hearing us discuss this over and over, and after hearing us talk about diabetes at home, at church, at school, and after many explanations, I assumed that her brothers (to an extent) were as familiar with this disease as we are, in an age appropriate way, of course.  Honestly, I guess I had never thought about what they thought diabetes was, or how it "happened".    

The car was quiet, everyone was finishing up their fries and ready to tear open the almost-unopenable toy with their teeth, and I hear a little voice in the back of the car.  It was that of my sweet Reilly, my middle child, my almost-kindergartner, my rough and tough soccer player, and my one who gives some of the best kisses.

"Mama?"

"Yes?"

"I know you love Maddie, and I know you take good care of her, but could you PLEASE not give me beetees when I'm a big kid like her?"

All of a sudden, I realized that he knew NOTHING about diabetes.  Somehow, he thought that Shawn and I had "made" or "let" Maddie have diabetes.  He thought that we had given permission for this to happen to her, and that we may decide to let him or his brother have it, too.   

My heart broke into a thousand little pieces.  I don't even remember the drive home.  I didn't know what to say, or how to respond.  How could he think that I had control over this, and how could he think that I let Maddie have it?  Why would he think that?  Why would he think that I would do that to him?

After I gathered the pieces of myself that had been scattered by the words of a 5 year old, I thought about my response for just a minute.

"Reilly--Daddy and I didn't make Sissy get diabetes, and if I had been given a choice, I would NEVER have let her get it.  If I could, I would give anything in the world for her to NOT have it.  We wouldn't do that to any of our babies--you know that!  For some reason, God has allowed her to have diabetes, but it's okay, because we know that He is in control of it.  We don't know why now, and we'll never know why she has it.  But we are going to trust Him, and take good care of her so she stays healthy.  I don't think God wants you to have diabetes, although if He does someday, we'll know just how to take care of you.  But you know that no matter what, God is going to take care of all of us."

He didn't respond to my reply, and Maddie didn't chime in either.  Brendan, who is almost 3 and doesn't have much to say about anything, was also silent.  We drove the rest of the way home without a word.

I don't think Reilly was asking me that so that he could be selfishly assured that he was in the clear.  I don't even think that he even cared about my long and drawn out answer to his question.  Actually, I don't think anyone was even listening to what I was saying.  Unfortunately for me, that happens often in my family. 

I, however, was listening to the words that were coming out of my mouth.  I don't even think that they came from MY blond head.  I think it was just God's way of reminding me (yet again) that, not me, but He is in control of everything.

 My Reilly

The "S" Word

As adults, we find ourselves saying words that aren't really a big deal, when coming out of the mouths of adults.

"This outfit looks like crap on me" or "Shut up! That is TOO funny!" or "Trust me, I felt SO stupid!" or "Eww--I HATE anchovies!"

But as you have children, and you continue to say these "bad" words, you realize that out of all the thousands of words your child hears everyday, they will only repeat the things that you DON'T want them to repeat, and words that sound rather inappropriate coming out of a child's mouth.

I'll never forget when Maddie was in her "Terrible Two's" (before she was diagnosed) she picked up on our (incidentally, I place equal blame on my husband) use of these "bad" words, which were only ever used in a casual, non-threatening way.

"I hate my hair! Please tell me if it looks stupid!"

"Can you believe I put on 2 different socks?!? I just realized how stupid it looks. The lighting in this closet is so crappy!"

"I can't get this stupid can opener to work!!!" (Can I get an Amen on that one ladies? Does anyone REALLY have a can opener that actually works??)

Anyhoo, we learned very quickly that stupid, crap, hate, and shut up, although mostly used in jest, and not EVER used to hurt anyone's feelings, or to be mean, were words that we could not say in front of Maddie.

Fast forward 7 years and 2 more children, and still, I feel a sense of sudden regret when I slice my finger open, and let a "crap" slip, or see an advertisement for a pole dancing exercise DVD on TV, and say that it's "stupid" under my breath, only to be reminded by my 5 year old that "Ooooh--mama said a bad word!" knowing good and well that those will be the first 6 words out of his mouth when my husband gets home, or as soon as he walks into my parents' house for a visit.

Embarrassed, I always explain that while it IS a "bad" word, sometimes grown-ups use it, but not in a mean way, and when he is 35, he can use those words as much as he'd like. But not before then.

One morning recently, after we had been up all night checking blood and ketones, and eventually changing her site, Maddie and I, both VERY tired from the night before, were working on her schoolwork. The house was quiet, she was almost through, and she stopped and put her pencil down.

As we both happened to yawn at the same time, she said, "Mama, can I say a bad word?"

"Um....". What is the correct answer to that question?!?

"Just this one time while Reilly and Brendan aren't around."

Stunned, and before I could answer, she screamed, "Diabetes is STUPID, and I HATE it! It's nothing but CRAP!" And then she just looked at me, waiting fir my reaction.

After blurting out all of those obscenities, she still looked tired, but she had a slight sense of relief on her sweet little face. I have to admit, those words do sound far worse coming out of a sweet little 9 year-old, innocent mouth.

She sheepishly waited for me to scowl, or to reprimand her.

After all, she was simply stating the truth about something that we have to fight every day. Something that rules her life and interrupts everything she does. Something that NOT ONE of her friends has to deal with. Something that makes her different. Something that is unfair and tries to defeat her every minute of the day.

So obviously, I smiled wide, and proudly said, "Maddie, I couldn't agree with you more!"


- Posted using BlogPress from my iPhone

Whew

So sorry, fellow blog followers.  November and December have been very busy months.  As far as numbers, Maddie's been up and down, but her A1C went from 8.5 to 8.3 in 3 months.  That's a start.  I wish it were back to 7.9 when she started 2nd grade, but I'll take anything that's headed downward.  I'll start back up with my much needed and much loved blog time as soon as our schedules get back to normal, and Shawn and Reilly go back to school.  At least that's my intention....
: )

To All Of My Type1-Mom-Blog Friends

Last night went smoothly.  Maddie was 147 when she went to bed.  BUT, I think that whatever sugary substance it was that she inhaled the night before, must have taken a longer time to smack us in the face.  She woke up at 400ish, and yes, the lovely TRACE to SMALL ketones.  Don't you just love 'em?? 

So, after I washed the urine off of my hands, I stuffed bottled waters, ketone strips, glucose tablets (just in case we went overboard on the insulin) and all of those other lovely things in her bag, and off we went to church, ketones and all.

Thankfully, after lunch, everything was back to normal, numbers were down, ketones were gone, life was great.

And then my lovely husband announces, "Whoever eats all of their lunch gets some candy!!"

Men......they mean well.....

*sigh*  Here we go again.....

Here Come the Ketones

Right now, as I type, Maddie, the cat is gathering more and more candy from our Fall Festival.  She and her 2 brothers, Batman and Superman will bring home their 12 pound stashes, and momentarily, we will forget that we have diabetes.

There will be candy and empty wrappers all over the living room floor soon, and I will not be stealth enough to know or see who eats what.

Soooooo, this is going to be a long night of checking, rechecking, and checking blood sugar again, and maybe we'll even get a little ketone action in there.  That's always fun for me.  Maddie usually gets more urine on my hands than on the stick.  Good times, good times.... 

*Sigh* Halloween.......Can't live with it, CAN live without it......

Midnight Confessions

When Maddie was first diagnosed, she was on insulin shots, which meant I was in charge of her entire diabetes situation.  When a diabetic goes on an insulin pump, you relinquish control, and the pump takes over, deciding how much insulin to give you according to food and blood sugar, etc.  It has been difficult for me to give up this control to a tiny little purple device that runs on 1 AA battery.

One of my most favorite times of the day is when I check Maddie's blood sugar at 2am.  Everyone in the house is fast asleep, and I go into her room, sit on her bed, and check her blood.  If you've ever watched a child sleep, you know that it's the sweetest thing in the world.  Usually, Maddie isn't too low, so I don't wake her up, but she usually wakes up just enough to give me her finger and watch me as I stick her finger

But sometimes, I have to wake her up all the way to give her a few glucose tablets.  When I do this, I think it stuns her, and she gets a little crazy.  She'll finish a conversation she was having in her dreams, or she'll point to something that she was dreaming about, that in reality isn't there.  But sometimes, she wakes up all the way, and she'll say the sweetest, most random things.

Sometimes she'll tell me that she really enjoyed dinner.  Sometimes, she'll thank me for something I did months ago, or sometimes she'll tell me something really funny that she and Reilly did earlier in the evening.  And sometimes, she'll even tell me that I look beautiful, even though I know that I don't.  My mascara is under my eyes, instead of on my eyelashes, my hair is frizzy from chasing my boys around the house, and my pajamas have some sort of stain on them from whatever my 2 year old was eating before he went to bed.  But it always baffles me that even though it's probably really annoying that she gets woken up, she always seems to be the sweetest at that moment.

It is a burden to have to stay up until 2 am every night, but I am so thankful that I get to have those moments with her all by myself and get to hear her little voice, and see her sleepy little eyes.  That is my favorite part of the day.     

The Candy Agenda

With candy season coming up, I am posting a list of popular candy and carbs.  I got this list from a great website:    www.childrenwithdiabetes.com


Candy Size/Package Carbs (g)

3 Musketeers 16 gram fun-sized bar 12g

3 Musketeers 2.13 oz bar 46g

Baby Ruth 2 oz. bar 37g

Baby Ruth 1 fun size 17g

Blow Pop sucker One sucker 13g

Butterfinger 2 oz. bar 41g

Butterfinger 22 gram-fun sized bar 15g

Candy corn 15 pieces 15g

Dum Dum suckers One sucker 5g

Gummy Bears 11 pieces 30g

Heath Bar 1.4 oz. bar 25g

Hershey's Almond 3 minis 15g

Hershey's Almond 1.45oz. bar 20g

Hershey's Kisses 6 pieces 16g

Hershey's Milk Chocolate bar snack size 10g

Jolly Rancher 1 piece 6g

Kit Kat bar 3 piece bar 10g

KitKat 1.5 oz. package 26g

Licorice 3 6-inch Twizzlers 15g

M&M's "Halloween" mini box 10g

M&M's, plain mini pack 15g

M&M's, plain 1.69 oz bag 34g

M&M's, peanut mini pack 13g

M&M's, peanut 1.74 oz bag 30g

M&M's, peanut butter 1.69 oz bag 27g

Milky Way 2.15 oz bar 43g

Milky Way fun-sized bar 14g

Nestle's Cruch 1.5 oz 28g

Nestle's Crunch 4 mini bars 26g

Reese's Cups 2 regular-sized 1 oz cups 18g

Reese's mini cups 4 1-oz mini cups 16g

Skittles 15 pieces 15g

Skittles mini pack 17.5g

Snicker's fun size 12g

Snickers 2.07 oz. bar 36g

Snickers 20-gram fun-sized bar 12g

Starburst 4 pieces 16g

Sweet Tarts mini packs - 5 packs 13g

Tootsie Pop 1 pop 16g

Tootsie Roll midgets 12 30g

Tootsie Rolls 2 bars 23g

Twix 2 2-oz. cookies 37g

Warheads 5 13g

Whopers 8 Pieces 15g

Whoppers 1 small pouch 16g

Wonka Pixie Stix Each (about 6 in. in length) 2g

That Summer

That was a long hard summer. I had a child that I had to give shots to 8 times a day. I had to prick her finger 10 or so times per day. I had to watch what she put in her mouth. I had to make sure she wasn’t shaking from getting too low. I had to check her urine for ketones. I had to check her blood every 2 or 3 hours during the night. I had to tell her she couldn’t have the foods that she was used to eating. I couldn’t let her out of my sight for more than an hour or two. I had a toddler that had already begun to enter the “terrible two’s”. My husband went away for week long trips, 3 times. I had to start preparing Maddie for kindergarten…... Oh yeah, and I unexpectedly got pregnant. Nice…..