The Princess, and um . . .
the "Torture Victim."
(note the pillow case, for maximum treat volume)
Halloween is done. The last of the Trick or Treaters have come and gone. Joseph is still up, listening to music, while Ryan is chatting on the phone with a friend.
And Evan, well that little princess is passed out upstairs-- spent from the thrills of the evening. The candy (oh, and there was so very much candy). The costumes. The Halloween trappings.
Once darkness fell, she couldn't wait to get out there.
Very pretty, and, uh...
not so much.
This year, Joseph decided he must be very scary.
I thought he really pulled it off.
And at the end of the evening,
the Princess takes a call.
Despite consuming about 30 grams worth of candy, Joseph's blood sugars held steady (low 90s to mid 100s) throughout the night. Some well-timed boluses, coupled with his running all over the neighborhood scaring the bejeezus out of small children (and some large adults), appeared to do the trick.
Oh, and that thing attached to his face? It's a very lightweight, rubber prosthetic bolt. A glue-like substance called "spirit gum" holds it (and the ugly looking scar on his collar bone) in place. Stage blood was added for further authenticity.
Yeah, he was pleased.
Monday, October 31, 2005
The Princess, and um . . .
Friday, October 28, 2005
Well, I had that little chat with Joseph's teacher.
I let him know how much we appreciate his willingness to work with us, and then went on to raise the points I made both in my previous post, and much of what appears in the comments to that post.
After determining that Mr. S. had no idea what Joseph's blood sugar had been just 10 minutes after his spelling test, I told him that Joseph was 56.
"Oh," he said quietly. "You know, when I think back, I should have known that something was wrong. I'm very sorry."
We talked of how to handle things in the future. Of how it would be wise to have Joseph check his blood sugar if he suddenly acts out of character.
Mr. S. requested more information about the behaviors that might indicate a low blood sugar.
I shared those ways I've been able (most of the time) to see a low coming on. Then I promised to forward websites; even try to arrange a meeting for him with a diabetes educator. If those things would help him to understand.
By the end of our conversation, Mr. S. sounded mighty sheepish about how he'd handled things, and seemed to want very much to learn how he could make Joseph feel more supported in the classroom (yes, I did bring up the point about how Joseph may not be liking school as much because he is feeling alone in his diabetes care. Mr. S. admitted that he rarely asks Joseph about his blood sugar, even when he's tested low or high).
The discussion seemed to be a success, right?
Then why do I feel so shitty about it?
I think that Kerri's comment on my previous post hits it right on the head. She tells of how she's "always found it very frustrating when people would assume [her] "outburst" behavior was always blood-sugar related."
This is precisely the issue that troubles me most about all of this-- trying to distinguish between just plain kid behavior, and something that is blood-sugar related, without making my son feel different -- or worse -- every time we try to make that distinction.
I can't imagine what this must be like ALL of the time for the person with diabetes; however, I do know that I hate when there is even a hint of a suggestion that my own emotional outbursts might be PMS-related (yes, sometimes they are, but not always).
And to me, that suggestion invalidates the feelings I'm experiencing in that moment.
Driving home with Joseph from school on Wednesday afternoon, I mentioned that Mr. S. might ask him to check his sugar if he thinks he might be low.
"Why mom? Why does he have to do that? He'll make me check my sugar all the time now."
As he spoke, the pain in his voice was unmistakable.
Looking in the rearview, I watched my son as he grew quiet. Leaning back in his seat, his head turned toward the window.
An expression of immense sadness on his face.
I don't know. I really don't know the right answer.
Monday, October 24, 2005
You know, I'm always writing about all of the wonderful things my son does. How brave and smart and strong he is. And that's all true. But he's also human. And never more so than on Friday.
Man, this is tough. Aw hell, let's just jump right in.
Joseph has been saying "fuck" lately. Not in my presence. Or in front of other adults. But with his buddies on the school yard. How do I know? Because, he told me, that's how. He tells me whenever he's done anything he's not real proud of. Often saying, "Mom, I don't feel right unless I tell you about it. It just sits in my stomach and makes me feel sick."
I'm not naive. This will certainly change as he gets older. But for now, as it was when he was very little, this boy feels compelled to fess up when he's done something wrong.
Anyhow, we've talked about the "F" word before-- back a few years ago when a friend of his had shared this word with him. At that time he asked me about it, and I had explained that it's an ugly word-- one of the nastiest words you could use, and one that could get you in a lot of trouble for saying.
Yeah, I know. I probably just served up one big 'ol hunk of forbidden fruit.
Now, after our little chat, he seemed impressed enough not to use the word, and to be sufficiently shocked if he heard it on the street (we live in a college town -- not an unusual thing to hear around campus).
Fast forward to just two months ago-- that's when he began saying the word himself. And shortly after, he made the decision to, as he put it, "break the habit." Needless to say, I was not happy to hear of his recent experiment with bad language (remember folks, he just turned 10), but I was proud of the fact that he wanted to talk with me about it-- and that he wanted it to stop.
He'd been doing great-- bursting with pride as he shared his progress.
But now he's in trouble.
On Friday, Joseph sat down to take his spelling test. His teacher said the first word, and Joseph didn't hear it. His teacher described to me, in an email, what happened next:
Joe was flustered because he missed the first key word. I don't repeat words so that kids stay listening and focused. I told him he needed to keep on going with the other words and would not give him that word. That word would come to him at some point during the test. He repeatedly asked for the word in a disruptive (loud) way. I continued administering the quiz to the class. Joe said, aloud, a phrase which had within it the word "fuck." I told him quietly at that point that his test was invalid-- he would get a 0 for it. Joe became quite upset for a moment, then proceeded to take the rest of the test. I'm sure he did well on it.Before I read this email, I already knew what it was about. Joseph told me the moment we arrived home on Friday.
On our way to recess outside he apologized. I accepted it. I also said I would be contacting you. He was not happy during recess. I took him down to the nurse right after recess when he said he felt low.
"Mom, I did something really bad. And I mean, really bad. I said that word again."
"Oh Joseph, we've talked about this."
"No mom, it's way worse. I said it in class."
"You didn't say it in front of your teacher, did you?"
At this point, Joseph looked absolutely miserable.
"Oh yeah. I didn't hear him say the first spelling word when he was giving us our test, and he wouldn't tell it to me. I just got really mad because he was being so mean about it! He just wouldn't say it again. And I guess I muttered under my breath 'What the F... ' I took the test, though. Even though Mr. S is giving me a zero. It was hard, but I didn't want everyone to think I was stupid. Then I went out to recess and just cried. Sam tried to make me feel better. But I knew Mr. S. was so mad. And that you'd be mad, too."
Yes, I was.
And, at first it was all about the consequences-- no Friday night movie, no gum (which he LOVES) for a month, and so on.
But later that night, and over the weekend, I got to thinking about my son, and what a terrific kid he is. And I also got to thinking about the events of Friday. Sure, Joseph can be hot-tempered, and irrational. But nine times out of ten, when that happens -- when it's that extreme -- there's something funky going on with his blood sugar.
Soooo, I thought back to Friday. After his teacher had left him in the nurse's office -- after recess -- it was discovered that, yes, he had been low.
He was 56.
On Saturday, I asked Joseph, "When did you take that spelling test?"
His answer: "Right before recess."
Now, I didn't tell him why I was asking. I don't want him to blame all of his moods or bad behavior on his blood sugar-- and I really don't want him to view his diabetes as a free pass to act out of control.
But then again, I don't want him penalized for something he can't control.
Do you see my quandary, here?
That's what made me think back to last Thursday, the day before the "incident." When I was leaving the school with Joseph that day, his teacher pulled me aside and told me that Joseph had been "acting out a bit lately in class," but that he and the kids are "getting used to it" and that my talk had really helped them understand this a little better.
Maybe I didn't do such a good job after all.
I don't want them to "get used to it." I want his teacher to recognize when something's wrong. Like when Joseph misses a spelling word, and then (loudly) badgers him to repeat it.
I want him to see when my son is clearly acting unlike his normal self, and suggest that he check his sugar before he says "What the Fuck?!"
I don't want my son to be different in a way that people feel they have to "get used to."
I don't want him to have diabetes.
Tuesday, October 18, 2005
Today was a beautiful day. Sunny, 72 degrees, a slight breeze. That's why when Joseph called home and asked me to pick him up after school, I said "sure." After all, he'd get home a lot faster than if he took the bus. And that would give him more time outside on this glorious day.
Besides, his school is only 10 minutes away.
So I loaded Evan into our small 95' Honda Odyssey, cranked the stereo with some U2 (Beautiful Day, of course) and headed to the highway. After getting off at the second exit, I drove a short stretch before noticing a vehicle with red flashing lights quite a few cars back. Then, after driving a few blocks, and turning right onto a residential street, I saw the green Dodge Neon just ahead of me, pull over. No blinker. Just pulled over. Annoyed, I checked the rearview before driving around the Neon.
That's when I saw those red flashing lights closing in fast. I turned down the radio, and could now hear the siren.
I pulled over, too. And turned my head in time to see "PARAMEDICS" splashed across the side of the small red truck as it sped past my van and continued on... and then I realized that those paramedics were heading toward Joseph's school, just a few short blocks away.
I drove on, heart racing, something large sticking at the back of my throat. All the time, my eyes glued to the back of that red truck.
Please don't take that left. Please don't take that left.
It made the left.
No, no, no. Please, no.
The Paramedics were closing fast on the next left, the one that would lead them to the front of the school. For those few seconds, time slowed. I could feel my heart pounding in my chest. Eyes, filling with tears.
But the Paramedics kept going. They never took that second left.
Less than a minute later, I sat in my van, parked across the street from the main entrance to the school, sobbing quietly-- cheeks soaked, stomach wrenching. Heart, still pounding.
Trying not to scare Evan, who sat blissfully unaware of what had just happened.
Monday, October 17, 2005
That's how Joseph celebrated reaching the big one-O.
Six boys, two adults, one toddler . . . all under one roof.
For 19 hours.
Yeah, some thought we were a little nuts for agreeing to do this, but hey, this was a big birthday. As Joseph said, "Mom, I'm part of the decade club, now."
Anyhow, things got started a bit earlier than expected. You see, the party was scheduled to begin at 4pm on Saturday. However, Joseph's buddy Zachary, a boy with flaming red hair and freckles, who lives just down the block, showed up at 8am.
He was really excited.
Zachary is two years younger than all of the other guests, and in Joseph's mind, his honorary little brother. He's a real sweetheart-- a boy who is very much affected by the fact that Joseph has diabetes. Whenever they're playing together outside (which is almost every day) and Joseph has a low, they'll both come inside. And as the meter counts down, I sometimes look over at Zachary -- his face, full of concern, breath held, eyes watering.
The kid just kills me sometimes.
So, Zach showing up early-- no problem.
Noah was next. His folks had other plans for that day, so his drop-off was at 1pm. Again, fine. Noah is another sweetheart. He's a very kind, very cerebral kid. And, because of this, I worried at first about how he'd do later with the other more rambunctious members of the party, but he made out just fine.
Sam, a bigger boy whose voice had already begun to change, arrived at 3:30. His mom said, "Sam just couldn't wait to come. He was up at 6am asking, 'how long before the party?'"
I loved hearing this, seeing the enthusiasm of these friends of Joseph's. He really had made some fine choices.
The last two guests-- Nate and Ahren -- arrived promptly at four.
So there we were. Did I have games planned? Special activities? Party favors and "goody" bags? The traditional singing of "Happy Birthday" followed by a "formal" present-opening?
You know, all the birthday-party trappings?
Well, no. Not exactly.
As each boy arrived, Joseph opened his gift and had a one-on-one moment to thank his friend, and then moved on to whatever we had going on.
Which was pretty free-form.
I thought it would be easier that way, and a lot more fun. It seemed that Ryan agreed with this approach. In fact, he expressed his feelings toward our responsibilities as hosts in very, well, um, minimalist terms. He told several parents at drop off -- "if anyone expects much more for their child than safety and food, they're gonna be disappointed."
Yeah, that about summed it up.
First instructions to the boys as the party began, "go outside." And that's where they remained for a chunk of the party-- out in the driveway-- scootering, skateboarding, shooting hoops. Milling about like bees, they were. Though every time Ryan tried to take a photo, they'd stop what they were doing and strike various goofy poses. Not exactly the moment Ryan had hoped to capture.
Around 5:30, I fired up the grill, and started flipping turkey burgers and "Boca" burgers (we had two vegetarians in the group.... man, how things have changed since I was a kid).
I set up the food out back on our patio table, called the boys, and said "time to eat." And again, left them to their own device. Oh sure, I came out once in a while with some more root beer-- diet for Joseph AND Zachary (who would never let his friend feel alone in anything).
Then it was back out front for more hoops, and more scootering and skateboarding up and down the wooden ramp that Ryan had built for Joseph. Leaning against our concrete steps, that ramp enabled boys to "drop in" and do "kick turns." (Oh yeah, I know the lingo.)
So this all went on until after dark. Around 7:30pm, we corralled the boys into our two cars for the "treat" portion of the evening-- which basically meant a trip to the DQ. The boys were in heaven. They stood outside with their icees, and chocolate-dipped cones (Joseph's favorite), and their Dilly bars. Oh, and one butterscotch shake for Noah. Interesting kid.
Anyhow, they goofed on each other, while I sat on a bench with Evan, helping her polish off a bit of soft serve. And wondering if letting Joseph have that medium cone was a good idea. He usually gets a small, but dang! This was his birthday party.
Back at the house, the next phase of the party began with me telling the boys, "time to go down in the basement." We have a decent-sized finished area-- nothing fancy. And it's loaded with toys. Of course, the countless Legos that Joseph has accumulated over the years are down there. (I suffered too many foot injuries to allow them to remain in his room.)
The boys built a whole Lego city, with a skatepark to boot.
Finally, at 9pm, it was movie time. Joseph had picked the Will Farrell vehicle, Kicking and Screaming. While I set up the flick, the boys changed into their pajamas, hauled their sleeping bags into the living room, and told each other rude jokes involving "farting" and "vomit" -- the usual fare from adolescent boys.
As they all grew quiet, I sat down and had a lovely dinner with Ryan.
By 10:30, I was ready for bed. So I left the boys to Ryan, who would be coming downstairs to check Joseph's sugars throughout the night.
Now, some might be wondering about Joseph's blood sugars during all of this. Well, after waking up higher than usual (183), then spiking two hours post-breakfast to 292, Joseph crashed less than half an hour after lunch, when he hit 45.
NOT how we wanted to start the whole slumber party experience.
Happily, his sugars remained steady for the remainder of the afternoon and early evening (between 74 and 151). But then, the roller coaster recommenced with a slight low (69) at 10pm, which I'm sure was due to the amazing amount of activity during the day. Then another low two hours later (this time, 66), followed by a rebound high that kept him hovering in the low 200s for a few hours. Not a good night, sugar-wise.
But birthday-wise, a damn good night, indeed.
A postscript-- After the Slumber Party, we had a family celebration on Sunday afternoon with Indian food for lunch (which didn't do too much damage), and then back home later for Ryan's fabulous double-decker chocolate cake. And in case anyone was worried, we did sing "Happy Birthday."
Wednesday, October 12, 2005
Ten years ago.
I remember when I first found out I was pregnant-- only two months after making the decision to try. I was home alone when I saw that second line, and just like that, I wasn't alone.
Less than four months later, I remember lying in a tent, listening to the rain fall heavy and hard on canvas. I felt the fluttering, then. For the first time, I felt my child move.
I remember sitting up, straining through tears to see an ultrasound image -- no longer a gender-less fetus, but now-- my son.
I remember leaving my doctor's office on Lakeshore Drive-- on a sunny, unseasonably warm October day. Walking west, and then south. Standing in a crowd of people on Michigan Avenue. Waiting, ready to cross over the Chicago River. And wanting to shout "I'm 3 centimeters dilated and 75% effaced!"
I remember, 30 hours later, lying on my side in a hospital bed. Breathing slow and deep. Four hours at nine centimeters. The only thing keeping me whole was Ryan's face -- so close -- and his hand, locked in mine, willing me to hold on, to stay with him, to stay with the baby.
I remember my doctor's voice, "Push! Push! 1-2-3-4-5-6-7-8-9-10! Look, Sandra, he's coming!" Only to see a dime-sized swatch of dark hair. I closed my eyes again, angry. For an hour, I continued to push, to the counts of ten, sometimes twelve. But then, during one of those counts, I heard Ryan's voice crack. I knew that now there was something to see. My son's head. One more big push, and the rest of him just slid out.
And then he was on my belly. Slippery wet, head misshapen from the long labor, eyes so dark.
The most beautiful thing I'd ever seen.
Wednesday, October 05, 2005
I went into Joseph's class last Friday to talk to the kids about diabetes. To prepare, I got hold of a great anatomy book from the library with some nice illustrations of the pancreas. Joseph and I spent some time discussing what he felt comfortable having me cover. I put together an outline (so as not to digress during said talk) and reviewed the outline with Joseph -- who suggested we have him check his sugar at the end of the talk, and have his classmates guess what it might be.
"Nice idea," I thought.
So, we're all set. Thursday afternoon, I called Joseph's teacher to confirm my 9 a.m. start time.
"Sandra, we have a small problem. You see, another speaker is coming in at nine, and I was wondering if you could come in after lunch, instead?"
Then Joseph's teacher paused a moment, before stiffling what sounded like an excited giggle.
"Well, actually, it's Jessica Doyle. She's coming in. The Wisconsin State Journal has been doing this "Where is Jessica?" series, and she'll be here today. We're all very excited."
Hmmm . . . Oh, wait . . . That's Jim Doyle's wife.
GOVERNOR Jim Doyle's wife.
So I'm to follow the first lady of the state.
Well, that's unexpected.
When I arrived, Joseph and his 20 classmates were sitting at their desks (arranged in two large semi-circles) heads bent, writing in their notebooks.
"They're writing a caption for a digital photo I've given them of Jessica Doyle giving her presentation," explained their teacher. "She was wonderful. The kids were really enthusiastic, and asked lots of terrific questions." Joseph's teacher could barely contain himself as he said these things.
"Great," I said, with some difficulty.
Now don't get me wrong, I thought it was wonderful that the first lady would come in like this. Just not right before I come in and try to explain something as complicated as diabetes and its management.
I needed the attention of these kids.
Joseph needed them to understand.
When the kids finished their assignment, Joseph was instructed to escort me to the front of the room, to a tall empty stool -- the one Jessica Doyle occupied in the photo.
As I sat down, I noticed something written on the blackboard behind me.
"Channel 15 -- 6:00 p.m."
Apparently, a camera crew had attended the earlier presentation. The class would be featured on that night's six o'clock news.
My stomach lurched a bit as I took my seat.
Before starting, I thought, "They're just 4th graders. I've given presentations many times, and to over a hundred grown men and women."
But those talks were not this important.
They weren't about my kid.
I launched right in. "Joseph asked me to come in and talk to y'all about diabetes, so what I'd like to do is . . ."
"No. My mom asked me if she could come in. And I said, 'whatever.'"
Joseph was to present with me, and it soon became clear that he saw this as an opportunity to entertain the class. As I spoke, he drew a picture of a pancreas, and some rather fearsome-looking cells, starving for sugar they couldn't have, because there was no insulin to "unlock" them-- to let the sugar in. He acted out what it was like to feel low. He walked from desk to desk, showing his pump, a bottle of insulin, his meter.
He was high. I knew he was high.
All this time, I talked in very basic terms about diabetes, about antibodies and autoimmunity, about things we can't explain-- like why Joseph has diabetes. I asked the kids questions like, "What foods do you think have sugar in them? What do you think happens when your pancreas stops making insulin? How do you feel when you haven't eaten in a while? " I showed them a syringe, an infusion set, a lancet.
The kids were great. They asked tons of questions. I could see the light bulbs turning on, one-by-one. It took some kids a little longer to "get it," but by the end, they were all on board.
And when I was finished, and we found out that Joseph's blood sugar was 321, all of their eyes grew big as saucers. They knew what that meant.
For a minute, they were all very quiet.
"What did we do right before my mom arrived?" Joseph asked, with a knowing smile.
"We ate lunch," shouted several of his classmates.
"Exactly," said Joseph. "And what did we have with our lunch?"
Then he reassured them that his blood sugar would come down. Even without a corrective dose of insulin.
When he called home an hour later (two hours after lunch), he was 162.
"Mom, everyone tried to guess what my sugar would be. It was great! They really know what I'm doing now. . . I like this a lot better than before."
On the case search:
Thanks to everyone who has been (and is still) out there looking, and to those of you who've posted comments and sent emails with suggestions. For now, Joseph is wearing the Cozmo case (thanks, Shannon).
While he does like it, I'm afraid it's a temporary fix. You see, there are a couple of drawbacks-- one minor, one not so minor. As Jay pointed out in a comment, the rather bulky clip does not swivel completely, thus the case is worn at an angle instead of completely horizontal. Joseph doesn't seem to mind this too much, though.
The big issue, however, is that this case is a pretty tight fit for the Animas pump (which is not quite as long and narrow as the Cozmo). Push the pump down into the case and you put pressure on the buttons at the front of the pump. Possible result: a bolus of insulin could be inadvertently given.
Now, since this is the only case Joseph wants to wear (the others we have just drive him crazy), he must always remember to lock the keys before returning the pump to its case.
I don't like that. It's just too easy for him to forget.
Soooo, the search continues...
On the molluscum:
Evan's bottom no longer has that handful of raised bumps. No, now it just looks as if a bomb was set off in the middle, blasting those original bumps from the center, leaving areas of reddened, injured flesh. But, oh no, that's not all. Now new, smaller brethren have appeared scattered upon her butt cheeks, thighs.... slowly making their way up her front.
Man, why did I let her doc treat this thing?