Some Updated Pics

My girl on the first day of Middle School~





Shopping for some healthy stuff~






Happy 12th Birthday! (last October)






Snapshot at the Endo's office. Gotta love a girl that can pose anywhere...even the restroom... Incidentally, this was after we found out her A1C had come down a lot, hence the huge grin.






One of the things that Maddie L.O.V.E.S to do!! (This was taken when she was walking Coco back to the barn after a hard lesson).

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?

My New Title

Today I got a new title.  I am now the WORST MOM EVER.

I've never claimed to be "Mother of the Year".  Yes, sometimes my kids go outside without jackets when it's cool.  And yes, I've unexpectedly noticed Maddie wearing flip-flops in the winter.  And, yes, there have been mornings when the kids go out the door without brushing their teeth.  And yes, I've been known to pick up 3 happy meals so as to not have to get out all the stuff for PB&J's.  I have arrived at church only to realize that someone wasn't wearing pants.  I do rush out the door some mornings forgetting to feed breakfast to at least one person.  Yeah, so?  Don't we all have those moments that are monumental at the time, but 15 years from now, we'll laugh about?

I don't claim to be one of those super moms who has it all together, with everyone looking immaculately clean, with brand new expensive clothes on, and every hair in place.  In fact I'm quite the opposite.  I don't know how many times I've gotten to wherever it was that I was going only to realize that no one (including myself) had brushed their hair.  I have taken my kids into Wal-Mart and thrown them in the buggy because I couldn't find one of their shoes as I was walking out the door.  "Too bad--you can ride in the buggy with the toilet paper and diapers.  Next time, don't lose your shoes!"   

But one thing that I am absolutely not, is a BAD mom.  I am also not an IRRESPONSIBLE mom.  I also think that I know quite a bit on how to take care of my chronically ill child.  Not today, though.  Today, I'm the worst mom ever..... 

It was Maddie's 9-year old check up, and I expected it to be a normal, non-eventful visit.  When they called her name, the nurse checked her height, weight, vision, and hearing, then sat her down to prick her finger.  After all of that, we presented the nurse with a fresh cup of warm morning urine, that had been sloshing around in my purse all day (of course, the cap was screwed on tight, and it was in a ziplock baggie).

Now, I am very aware of Maddie's A1C, aware of her ketones, and aware that they would find sugar in her urine, typical of a diabetic.  My first mistake was watching the nurse check her ketones.

"She doesn't have ketones, does she?"  On the ketone scale, "Trace" and "Small" are just signs that Maddie needed to drink water this morning, and that her blood sugar may have been a little high when she woke up.      
"She's right between "Trace" and "Small", but that's no big deal."  Actually, for anyone else, it is a big deal, but for Maddie, I know what it means, because I've been there and done that, and I can tell you what it means in my sleep. 

From across the crowded hallway, I hear a low and stern voice bellow out, "Trace to small? Is there sugar in her urine?"  This was one of the doctors that I was NOT seeing that day.  It's also a doctor that doesn't know me and doesn't know Maddie.

Stunned, the nurse looked up and hesitated to tell him that there was sugar in her urine.  I'm not sure what the number means exactly, but by the look on her face, I knew I was going to get flack about it.  I just didn't realize I was going to get flack about it from a man I had never met, nor had ever looked at my daughter's chart.

He walked over to Maddie and put his hand on her shoulder and told her that she needed to drink more water, and try to keep her blood sugar down.  **SARCASM ALERT**  Oh, really?  Is that what she's supposed to do??  Good, because no one had ever mentioned that to us before!!

He then started questioning ME in the hallway outside of HIS patient's room and in front of a whole bunch of nurses and patients.  "What's her A1C?  What have her blood sugars been like? How much insulin is she getting per day?" and on, and on, and on, and on......

**SORRY--ANOTHER SARCASM ALERT**

Oh, how did I get from the pediatrician's office for a regular annual check up, to the endochrinologist's office for a lab visit?  And how did our usual sweet, quiet and FEMALE doctor turn into a humiliating MALE pediatrician/endocrinologist before my very eyes??

His last statement to me was with his finger pointed at my face.  "You need to get that blood sugar under control, and fast!"  Then as quickly as he stepped into my conversation with the nurse, he stepped into his next patient's examination room.  And he was gone.

After the nurse rolled her eyes and told me that she didn't know what his problem was, she took me and Maddie into our examination room.  What she apparently didn't realize from that confrontational conversation is that with that little finger point, he was giving me my new title. "WORST MOM EVER"

Germs, Stools, and Flu Shots

Today was Reilly's 5 year-old check up.  No biggie, right?  Oh, it was a biggie.  Having Maddie around all the time means she gets the privilege of accompanying me everywhere I go.  Being that Brendan is 2, he also gets to enjoy that privilege.  My mom has the privelege of being able to help me out when I need it, and today, I needed it.

It was a perfect plan in my head.  Pick up Reilly at 12, get the kids lunch, eat in the car, meet my mom at the doctor's office, Mom, Maddie and Brendan watch a movie in the car with the windows down (it was a beautiful day) while Reilly and I run in and see the doctor.

At about 11:55, as I was on my way to the school, my phone rings.  It was Shawn telling me to see if I could get Maddie and Brendan in to get flu shots while I was at the doctor's office, so we wouldn't have to make 2 trips.  Yeah, easy for him to say--he was sitting in a quiet room with a bunch of well behaved teenagers who were not angst ridden about getting shots in their arms.  So, I agreed, called the doctor's office to see if I was able to do it, and hence began the whining and complaining.  The nurse said that they didn't get the nasal mist this year.  Just the shots.  That's just great. 

I have to admit, I'm a worrier.  I also have severe anxiety when it comes to knowing I'm going to endure something painful or uncomfortable.  For instance, I find it almost impossible to get a glaucoma test.  I can't stick my head in a contraption knowing good and well that this contraption is going to blow air on my eye balls.  I just can't do it.  If I keep my head in it, then I inevitably close my eyes at the exact moment the air puff blows.  It's the suspence of knowing that it's going to happen.  I also can't stand the eye ball numbing drops.  Because I know that I can't feel my eye balls, and that bothers me.  But, alas, I can endure a flu shot.  So, Maddie has this worry/anxiety thing that she picked up from her mother.  I just choose to worry about more important things, like puffs of air....

Anyhoo, for the next hour and a half, I had to listen to things like, "Do they have to give the shot to me?" and "You're going to have to pay money for me to get the shot, and I don't want you spending your money on me." and "I just really feel like I'm not going to get the flu, so can I just skip the shot?"  All of this coming from the person who has taken thousands of shots, thousands of finger pricks, and hundreds of needles and tiny tubes in her back side. 

Normally I'm not a germ-o-phobe, but the swine flu scare has sent me into sort of a panic because it could be much more dangerous for a child with a chronic illness, than an otherwise healthy child.  I spent the 15 minutes in the waiting room with Reilly applying the provided hand sanitizer and kindly reminding him not to touch anything or put his hands near his face.

Everything was going smoothly until they called Reilly's name to "come on back" and told me that the other 2 kids should come back, too.  It wasn't going to take long for his check up, then they would all get the shots.  The nurse took Reilly to weigh him, and I ran out to the car to get Mom, Maddie and Brendan.  I could tell it wasn't going to be pretty when Maddie walked down the hall with tears in her eyes.

All 5 of us get escorted into a tiny and very warm examination room.  As usual, immediately 3 things start to happen simultaneously.  Reilly, who is sitting on the table in his Spiderman boxer briefs, starts talking about something, in which to demonstrate meant he had to put his entire hands in his mouth, and when asked not to do that, immediately rubs his eyes with the previous saliva/germ covered hands.  Maddie is quietly crying in anticipation on the floor, with her blood sugar soaring by this point.  Brendan is running full speed back and forth in this 5x8 square foot room, in which there are 2 chairs, a stool, a desk, the paper covered examination table, and five people.

So being the worn out and frazzled mother that I am, I first asked him to stop (knowing full and well that he wouldn't have any part of that) then I put him in "time out" which consisted of the high stool that I knew he couldn't get down from.  Now at this point I am sweating, both from the heat of the room, and from the disposition of all 3 of my kids.  The sweet nurse sticks her head into our room and says, "I'm just putting the SIX  NEEDLES for the kids' SHOTS in the bin on the door.  I didn't want you to think someone was knocking on the door."  Yeah, thanks.  Way to bring it up.  Now everyone has a precise mental picture. 

You can always tell when the doctor is about to come into your room because you can hear the papers being shifted around as they look through your chart really quickly to know what's going on with you.  As I heard Reilly's papers being shifted, the door knob was turning, and I look over at Brendan and he is in mid air.  He lands on his head with the loudest "bonk" sound that you can imagine.  He didn't land on the side of his head, or his shoulder and head.  He landed flat on the back of his head.  And right as the doctor was opening the door.

So now I have 2 crying kids, and 1 in his underwear, and we haven't even started the check up yet.  A few minutes later, Brendan stops crying only to have a noticable goose egg on his head, but Maddie was still in a fetal position crying, this time on my Mom's lap.  I'm never in the right state of mind to ask questions of the doctor at my kids' check ups.  I'm always trying to keep people from crying, and I'm always sweating from the stress of having a doctor talk to me about my child, but not really listening because someone is inevitably acting up.

When it was shot time, Maddie went first, and started hyperventalating.  When the doctor got her calmed down, she gave her the shot.  It was somewhat remeniscent of the first time I gave Maddie a shot of insulin, but not quite as ear-piercing.  Of course, she looked right at the needle and started screaming, not to cease for probably a minute or two.  Fortunately, my mom had a good grip on her.  I had visions of the letters "HI" on her meter.  Stress and anxiety causes her blood sugar to go sky high, and this was definitely stress and anxiety for her, and for me. 

Unfortunately, Reilly received his kindergarten shots, so he got 4 shots instead of 1.  I heard him say things that I hadn't ever heard him say before.  "Get me away from her!" and "This has got to stop now!" and "I can't believe you're letting her do this to me!"  It was quite unsettling for me.  The worst part is having to hold them down so they can't move, except for turning their heads to see the 4 inch long needles.

Then it was Brendan's turn.  He was sleepy, and sweaty, and had a huge bump on his head.  I set him up on the table and she gave him his flu shot.  He didn't wince, he didn't cry, and he didn't even change his sweet expression from a blank look.  He just sat there and got his shot, and watched the whole time.  I think God gave me him to help my calm my anxious nerves and give me a periodic breath of fresh air in my stress filled life.

When we got out to the car, Maddie checked her blood and she was in the 500's.  That figures.....but at least she won't get the flu!  

   

The Phone Call

After the doctor’s loud phone call in his office, he came back into the room. He had made arrangements with a specialist that wasn’t taking new patients. Except for Maddie. She was an exception. I was given directions, a name, a suite number, and a time.

It was a dizzying walk down the hallway back into the waiting room. I remember opening the door and seeing Reilly playing with the toys, and my mom sitting on the chair, smiling. She was ready to go and get on with hanging out with her grandchildren.

I know I wasn’t crying outright, because I was trying to be strong for Maddie, and I didn’t want her to think it was a big deal. I didn’t want her to be scared. I do know that I had tears in my eyes, and the moment I looked at my mom, who was smiling, and she saw my tears, I had to actually say it.

“What did he say?!?”

I didn’t want to say it. If I said it, then I’d be putting it out there, and I’m not ready to do that. If I nod my head, will my mom know what I mean? Will she think everything is fine? Or will she get my hint? What is Maddie going to think?

Get it together, Marcie. Maddie is listening. Get it together, girl. If you break down, she’ll freak out, and you don’t need her to do that right now. Clear your throat. Swallow. Take a deep breath.

“She has diabetes,” I spoke very softly so maybe, just maybe, Maddie wouldn’t hear me.

“WHAT?”

“She has diabetes. We have to go see a pediatric endocrinologist at 2:00.”

My mom didn’t say much after that. I didn’t say much either. I do remember her calling my dad to tell him to pray. We had to figure out how to spend the next couple of hours with a toddler and a hungry 5 year old, that apparently had diabetes.

I don’t remember dialing the phone, but I had to somehow inform my husband that our sweet baby girl, the light of our lives, our first born child, the owner of our hearts, has diabetes.

“Hello?” Shawn is always very chipper at school. I think it’s because he’s doing exactly what he is meant to be doing. He loves it, and I think he’s really good at it.

“Hey.” I, however, was not so chipper.

“Hey! What’s up?”

I was mumbling softly, trying not to get upset, or let Maddie hear my conversation. “Maddie has diabetes.”

“What? I didn’t hear you. Maddie what?”

“She has diabetes.”

“SHE HAS DIABETES?”

“Yes. Mom and I are on our way to get them something to eat, then we have a 2:00 appointment with a doctor. You should probably come.”

“Where is the appointment?”

I gave him directions and he hung up. I could tell he was trying not to cry.