Coming Down Off the Bus

I lean back and stretch, before glancing at the time in the lower right corner of the computer screen.

11:35 AM

Joseph should have called by now to confirm his lunch bolus.

Standing up, I stretch again-- then walk upstairs to the kitchen, drop into a seat at the counter and slide Joseph's bright yellow and green logbook in front of me.

Hmmm.... 155 before breakfast-- that means the spike will be a bit higher. But if today is anything like the last few days, he'll probably coast into the low-to-mid 100s.

Hopefully.

We've had some out-of-left-field highs of late, so I'm not entirely confident in my prediction.

A few minutes go by and I look at my watch, then at the clock on the microwave.

Huh.

He should have called at 11:30, right after lunch...

But then I remember something.

It's Friday... the field trip... his class went downtown to see a musical performance.

I get up and rummage quickly through a stack of papers next to the phone-- until I find my half of the permission slip.

"Students will arrive back at school by 11:30 am," it says.

I look at my watch again.

11:45

Relax, I tell myself, he's probably just finishing his lunch...

Several more minutes pass before the loud ring of the phone causes me to jump.

"Hi, Mom," Joseph says, his voice sounding tired, "lunch was 93 grams."

"Cool, Bud-- and what was your bg?"

"81."

"Okay, let's see now - "

"Mom... "

A pause.

"... before that, I was 37."

"What?"

For a second, I'm convinced I didn't hear him right.

"Thirty-seven," he says again, a little more slowly.

"Wha- where-- when were you 37?" I sputter, trying to stay calm.

And failing miserably.

Because all I can picture is Joseph on a loud school bus, packed with middle schoolers.

A blood sugar of 37.

"It was when I got off the bus-- I felt really low and I went to the health office and checked and took some glucose- "

"Wait-- did you feel low during the bus ride back to school?"

"Well, kind of... I mean, I felt hungry. But I figured we were gonna eat lunch once we got back."

"How many tabs did you take?"

"I took five and then ate lunch about seven minutes later."

"So after seven minutes, the glucose brought you up to 81, and then- "

"No, I was 81 after I had lunch."

"Oh, Honey-- you've gotta check again before you eat, to make sure the glucose is bringing you up."

"Well, the blueberry bagel I had didn't really slow things down. I was fine-- and Mom, it was kinda cool the way all the girls were worried and wanted to give me hugs and stuff."

Despite hearing the smile in my son's voice, I can't stop feeling sick about this.

What if he was 37 just a few minutes earlier? While he was still on the bus, miles from the school?

I try to shake this thought as we calculate his lunch bolus.

"Bud, why do think you went low? Were you more active this morning? Did you give yourself extra insulin? A correction? A bolus for a snack?

"Mom-- no, none of those things. I just got on the bus this morning, sat at the concert, got back on the bus- Mom, it happens. I have to go-- recess is almost over.

"All right, Bud... " I say, straining to sound normal, "I'm sorry, go ahead-- I'll... I'll see you later."

Shaking, I sit back down in my chair, and stare through wet eyes at the logbook in my hands. At the "37" I've written in it.

Frightened.

Because I can't find a single reason for that number.

Miles To Go

I'm lying in bed looking up at the ceiling-- only I can't see the ceiling because the room is pitch black.

All right.

He was crashing down at 11 o'clock, but two glucose tabs pulled him up 15 minutes later-- to 132. Then he ate some cheese crackers...

That ought to hold him.

I roll over on my side.

He's got no insulin on board, and his basal rate is pulled back 30% for the next couple hours.

He should be all right.

But then I'm on my back again.

Looking up.

This is how it goes.

Until 1 am-- the next check.

Leaning over him, I pray silently for a mid-range number. 120s would be good, but if he's a bit high-- well, that would be okay too.

98

My heart sinks.

He's coming down again-- not as fast, but still.

No insulin on board, a lower basal rate... why is he dropping again?

Man.

I take out his pump, extend his temp basal another four hours, and -- as usual -- struggle to get the pump back in its case.

Though Ryan will check him at 3 am, I've got a bad feeling. So when I return to bed, I snatch up my alarm clock (an old silver cell phone)-- and set the thing for 30 minutes later.

Sliding down beneath warm covers, I am so ready to drift gently to sleep-- even if it's just for half an hour.

But I never do.

Just before my alarm is set to go off--I'm squeezing yet another of my son's calloused finger tips. The blood doesn't come at first, not until I rub my thumb up the front of his finger, repeatedly (something I fear will wake him, but doesn't).

86

Should have given him some glucose.

Grabbing the plastic jar sitting on his nightstand, I unscrew the cap, and pause.

How many? If I give him too much he's gonna have a huge spike-- and then we'll be chasing the high all night...

Hmmm.

Well, two bounced him right back up when we he was dropping earlier-- and he's not falling nearly as fast.

I fish out two large, pale-orange tablets-- and pause again.

"Joseph," I whisper, "I need you to take some glucose."

Without waiting for a response, I gently stroke his cheek, and for a moment just look at his face -- and at the headgear firmly attached to it -- then take a deep breath before maneuvering a tab between rubber bands and metal.

No words, just a low, muffled "crunch" as he mechanically chews each tablet without ever opening his eyes.

Then I pull myself up and walk heavily back to bed.

I'll give it 30 minutes.

One more poke, a snack, and then-- sleep.

2 am.

This time when I take one of his hands in mine, he pulls it roughly away -- shoving both his hands deep beneath the covers -- eyes still closed.

When I reach down and take hold of his left hand again, I bend his arm to make that hand floppy-- to lessen the resistance. Then I prick the tip of his index finger-- and immediately, he yanks it out of my grasp, smearing blood in the process.

Thankfully, before his flailing left hand disappears under his blanket, I manage to grab hold of it. But when I raise the loaded test strip to his index finger -- no matter how much squeezing and rubbing I do -- I can't bring up any more blood.

I have to poke him again.

Suddenly, anger and sadness erupt with such force I have to move away from my son.

Why does he have to have this thing? Why?! Poking and poking and poking my child with a needle every damn night!

I sit on the floor, shaking.

Until that internal alarm sounds, and I can't sit there any longer.

Wiping a damp cheek with the back of one hand, picking up the lancet with the other, I return to my son-- and prick yet another battered fingertip.

75

Still dropping.

Should have given him four in the first place-- but damnit, he wasn't falling that fast.

I watch him as he dutifully chews two more glucose tablets.

The whole time, all I want to do is go back to bed.

To just sleep until morning.

I return to my bedroom and set my alarm.

For 20 minutes later.

Our Tells

I'm sitting at the counter, entering Joseph's bg in his log book-- his sugar is just flying down.

No surprise-- it was a gym day.

As I stare at the curve -- the 100-point drop that took place during our short ride home from school -- Joseph plops down on the seat next to mine. I look up from the log.

Nope, not yet-- he's still low.

He has a look.

A "tell."

It's the way he smiles when he's low-- it's not quite right.

It's not him.

"Mom," he says suddenly, "I told this kid at school that if he pulled out my insulin pump I could die."

"What?!"

"Well, he was buggin' me. And he started asking me about it-- he's this big kid named "A" who likes to push people around."

"But Honey, I really don't want you telling anyone something like that."

"No-- but Mom, it was funny-- 'cause then later this other kid was messin' with me- "

"Hold on-- what do you mean messin' with you?

"It was no big deal-- but then A got all freaked out-- because of what I told him about my pump... "

And now Joseph is giggling and shaking his head.

Still smiling in that way.

".... and he grabbed the other kid and said, 'You could kill him! Leave him alone!' Then my friend, G was like 'Wait a minute, he couldn't kill- ' and I went 'shhhh!' and then G said 'Yeah, yeah-- you could kill him."

"Joseph, I really don't want you telling kids things like that-- someone might think it's funny, doing something to your pump."

"Oh yeah-- like all of a sudden they're gonna learn how to unlock my pump, and figure out how to push the buttons and do a bolus."

"Joseph, don't even say that. Please."

He laughs-- then shakes his head and rolls his eyes.

"Mom, they can't really hurt me."

But then he notices the look on my face.

My "tell."

"Really, Mom, " he says quietly-- without a trace of that smile.

"No one can hurt me."

Then he reaches across the counter and picks up his meter.

"I'm gonna check again, to see if I'm back up."

"Sounds good," I tell him-- though I can already see that he is.

Getting Back Up

Last Sunday.

On an unseasonably warm afternoon, I agree to take Joseph and his two new friends (12-year old "G"and his 9-year old brother "R") to an outdoor skateboarding park about 20 minutes from our house.

Sure, I've got a boatload of laundry to do, a garden to clear, groceries to buy...

But man, it is one beautiful day.

So I head out to the backyard to tell Ryan the plan-- and to see if he's all right with it.

You see, he's been out there raking for almost half an hour, and I'm feeling a bit sheepish about taking off like this.

But once I tell him, Ryan leans on his rake, smiles and says:

"Bring some coffee, a book, and a chair-- it'll be fun. And don't forget your sunglasses."

"But what about Evan?"

"You don't want to be following her around while the boys are skating-- and besides," he says, grinning broadly and pointing at the massive pile of crisp, golden leaves in front of him, "she's gonna want to jump in these."

A few minutes later, I'm driving three loud, giddy boys to a skate park.

The whole way there, they talk enthusiastically about "kick flips," "pop shove-its" and "dropping in," while I half listen-- and at the same time, do some preemptive thinking.

Okay, so he had a late breakfast-- we'll just check his blood sugar before he starts skating, give him a snack, then go have lunch about an hour later.

His sugars were in a nice range this morning so we should be good.

Pulling into the parking lot, I see the skate park some distance away-- all concrete, peppered with several large ramps, platforms and metal rails, and surrounded by a chain link fence.

Immediately after I turn off the engine, Joseph and his buddies scramble out of the van, grab skateboards and helmets, and make for the park.

"Wait! Joseph, come here-- I want you to check your sugar before you skate."

R is already halfway to the park, but G rides his board back to the van with Joseph.

He watches carefully as Joseph pricks his finger, touches it to the end of a loaded test trip-- and then (as always) covers the meter's display with one hand until he hears the beep.

125

More calculations.

No insulin on board... he's gonna be pretty active...

"Bud, how 'bout you eat this chocolate chip-peanut butter granola bar?"

"Sure," he says grabbing the bar from my outstretched hand. Immediately, he tears the thing open and takes a huge bite.

"How about you, G-- would you like one, too?"

"Yeah-- thanks," he says, eyes lighting up.

Five minutes later, the boys are riding up and down ramps, doing tricks... and I'm settled in on my lawn chair just outside the park's open gate-- sun on my face; a thermos full of warm coffee in one hand, a book about XHTML (I kid you not) in the other.

Ten minutes later, Joseph falls.

Hard.

"Bud, are you all right?" I call out, stifling a gasp.

"Yeah," he says, but he's slow to get up. He'd been coming down a high ramp when his board flew out from under him.

G skates over to him, but Joseph waves his friend off and is soon back on his board.

I close my book.

That was a tough one-- but he got right back up... awesome.

At that moment, while marveling at my son's resilience, I see him skate awkwardly over to another ramp, and then stumble off his board.

"Bud, are you- "

"I'm fine," he says.

But he's not. I know he's not.

And about 30 seconds later-- he knows it, too.

"Mom, I'm feeling kinda hungry," he says-- and then he walks slowly over to where I'm sitting, with G and his brother following right behind.

"Bud, you just had that granola bar, and I left the wipes in the car-- I'll be back in less than a minute, and then you can do a check." Turning away from him and his friends, I sprint toward the van.

But Joseph doesn't wait-- before I get far, he's calling me back.

"I'm 42!" he yells.

He was 125 less than 15 minutes ago... and he didn't even wash his hands...

I spin around, run back to where he's standing, and for about a second, am struck by how pale he looks.

How it happened so fast.

"Take five tabs, Bud."

Joseph shoves several large glucose tablets into his mouth, while his friends stand on either side of him-- both wearing the same concerned expression.

They haven't known him long -- maybe three weeks. And this is the first time they've seen him low.

After eating the tabs, Joseph insists on going back in the park with his friends-- and sitting at the top of a ramp several yards away while he waits for the glucose to start working.

"It'd be better if you stayed he- " I start to say, but the words fall away.

Full of fear, I watch him climb that ramp, and then I can only see his legs-- another platform obstructs my view.

It's hard, not going after him.

But he wants to be in there, with his friends-- even if he can only sit and wait.

A long 15 minutes later, he's back up to 89.

And after quickly eating a bag of cheese crackers, he's back up on his board.

That was a tough one-- but (thank God) he got right back up...

And again, I marvel at my son's resilience, as I watch him skate fast and sure over concrete-- to the top of yet another ramp.

Finding the Words

It's funny how sometimes you just can't find words. No matter how hard you try.

That's been me over the past week. Maybe it's because this disease is suddenly feeling more relentless of late.

The highs, the lows-- they continue.

And the exhaustion, too.

I realize I'm not alone-- thus, even writing this has me feeling somewhat sheepish.

So I'm just gonna launch into something more specific-- and hope a decent post emerges...

Joseph's endo appointment.

While his A1c rose (from 7.4 at his last visit to 7.8)-- his growth was amazing.

"This is the biggest growth spurt we've seen in a while," his doc tells us enthusiastically.

And when Joseph stands in front of her -- sure enough -- they literally see eye-to-eye.

"You're going to pass me by your next visit," she tells him with a smile.

But then, the downside of the appointment, after Joseph and Evan retire to the lobby. When I ask a question that's been on my mind for a very long time.

"I know I've told you that Joseph never wakes up when he's low overnight-- but I've been wondering if this is something that will change when he's grown?"

His endo pauses, looking sympathetically at both me and Ryan. And then answers my question:

"Well, we've found that as children get older they actually become less sensitive to overnight lows. This is why I worry about many of my patients who are going off to college. They tell me that they always wake up when they're low. But that is really quite rare. Most people will sleep through a low blood sugar.

"I tell these kids that they have to come up with a plan."

A plan.

God.

I swallow this down. Hard.

And feel grateful that I'm not hearing it alone. That Ryan's hand is right there.

"All right, then," I say, struggling not to cry.

And then I remember something:

"Have there been any new developments on the continuous glucose monitor front?"

"A number of kids in my practice are wearing the Guardian with a lot of success. We're even finding that they don't need to change the sensor every three days.

"In fact, the device appears to be more accurate if they wear the sensor longer-- as long as two weeks."

While this sounds so very promising, I remind her that Joseph wears an Animas pump. Thus he'd have to wear the (rather bulky) Guardian receiver, in addition to his pump-- versus Minimed's all-in-one pump/Guardian combo.

"Joseph has seen the device on another child," I tell her, "and he's just not ready to wear that much equipment."

"It's still worth exploring," the doc continues, "I think that Joseph could gain a great deal of benefit from it."

Then, of course there's the money-- insurance coverage for a CGMS is still not there yet. As we leave this visit, I'm doing the math in my head and it's not coming out right.

There's just too many things: diabetes supplies, preschool for Evan, braces for Joseph...

So I'm left with a mixed bag of emotions:

Sadness and frustration over the fact that we can't get this thing RIGHT NOW for our son;

Impatience, because I desperately want this technology to improve SOON;

And hope.

Because even if we can't jump on this right now, by the time our son goes to college he'll be wearing (or implanted with) something that will take our place during those long nights.

Something that -- I have to believe -- will keep him safe.

Raw

"It's just gonna be a scene," Ryan says with a devilish grin.

I look at him, doubtful at first-- but then I imagine how blown away Joseph will be when he opens this gift on Christmas day.

When he sees the tickets.

And really, it would be one helluva lark.

"All right. Let's do it."

So here I am -- two months later -- sitting in a crowded arena, flanked by my husband and son.

Directly in front of us -- an astonishingly short distance away-- a ring.

A Professional Wrestling Ring.
"My God-- this is gonna be insane!" I say to no one in particular.

Ryan says nothing-- just grins broadly, soakin' it all in.

Joseph can barely contain his excitement when a pleasant-looking man in a brown suit walks to the center of the ring holding a microphone.

The lights go down, and at first I can't make out what the man is saying over the thousands of madly cheering fans, but then his booming voice is suddenly clear:

" . . . weighing in at two hundred and thirty-eight pounds and standing six foot one-- Euuuugeeeene!"

A spotlight shines on an energetic fellow wearing a short white jacket and what looks like a shiny black speedo as he gallops through the crowd, then leaps into the ring.

Moments later, loud ominous music fills the air and again, the crowd screams as the announcer continues:

" . . . his opponent, hailing from India-- reaching a height of seven foot three . . . "

My head whips around to Ryan-- "Did he just say seven foot three?"

" . . . and weighing four hundred and twenty pounds . . .
The Great. Khaaaaaa-leeee!"

The crowd roars as Khali strides purposefully through the audience, climbs up toward the ring, and effortlessly steps over the top rope.

Eugene cowers in a corner, looking almost childlike next to this behemoth.



The "match" lasts less than three minutes.

Over the next three hours (that's right-- three hours) various heroes and villains parade into the ring and face off. And while there are some fun, wildly acrobatic moments, there's mostly a whole lot of really bad acting.

Despite this, Joseph is having a blast.

As the main event is about to begin, the crowd gets to their feet and begins shouting and chanting the name of the star attraction.

"CENA! CENA! CENA!"

I'm standing on tiptoes trying to get a look at this guy, when I feel a light tap on my arm.

"Mom, I'm tired," Joseph says, then leaning on me suddenly, "and I have a headache."

"Honey, do you feel low?"

"I... I don't know."

While everyone around us remains on their feet -- cheering Cena on as he marches toward the ring -- Joseph slides back down into his seat.

Even in the dim arena light he looks terribly pale.

"Honey, let's check your sugar," I say, feeling a rising panic.

He's 95.

Which wouldn't be bad, except that he's dropped more than 50 points from when we checked just ten minutes earlier.

That's way too fast.

"Bud, take three glucose tabs."

As I watch him eat the tabs, I'm wishing I could just get him out of here now (he looks that bad).

But the arena is dark; the aisles, packed with people.

"Mom, can I take another tab?" Joseph asks in a shaky voice.

"Go ahead, Bud."

I ask him several times over the next ten minutes if he's feeling better.

"A little," is all he tells me.

When the lights finally go up, we gather our coats and make our way across the crowded arena floor toward the high staircase that leads to the exits.

Thank God.

My stomach in knots, I walk behind Joseph while Ryan leads the way.

As we join the river of people already climbing the stairs, Joseph turns his head and says weakly, "Mom, I just wanna go home, I'm really, really tired and my head hurts."

Then he begins climbing.

A few seconds later, halfway up the staircase, he slips-- his face connecting with the stairs.

"Joseph!" I shout, my heart in my throat.

Grabbing onto one of his arms, I pull him to his feet.

"Are you all right?"

"No . . . no, Mom," he cries, "I just wanna go home."

There's some blood on one of his front teeth.

"Honey, does anything hurt?" I reach out and touch his face. "You're bleeding a little."

"I hit my mouth on the metal part of the stairs," he says, through tears.

"It's okay . . . you're gonna be okay . . . "

And then, frightened that his blood sugar might be taking a nose dive, I say:

". . . maybe we should check your sugar- "

"No, no, I'm sick of sticking myself! I'm just tired. I just wanna go to bed."

Ryan looks at me, mouthing the words "Let's go."

He's right-- we've got to get him out of this swarming crowd.

I turn back to Joseph-- "It's gonna be all right, Bud-- we just need to get to the car."

Holding onto him, I help him up the rest of the stairs, and then on out into the sub-zero cold.

A few long minutes later, we pile into the car, thankful to get out of the biting wind-- and away from all of those people.

Not long after buckling up, Joseph falls asleep.

Although his blood sugar is 111 when we arrive home, he's still not feeling right. I give him a snack and sit with him for a while before settling him into bed.

And then I can't sleep. I'm just so worried and angry about what happened. About all the other nights he's not gonna feel right -- or worse -- because of this damnable disease.

And I just want to scream.

Midnight

Bleary eyed, I make my way across the dark bedroom, bend over, and switch on the small lamp next to Joseph's bed.

I pause a moment, then look hopefully at my sleeping son as he lay curled on his side, one hand resting by his head.

Reaching down, I move my hand across his forehead and down the sides of his pale face-- gently pushing aside several strands of damp hair.

Damn.

Quickly, I slide the meter out of its case, pop open a small cannister, shake out a test strip and insert it into the meter.

"Code 23" appears on the illuminated display.

I push the "OK" button, put down the meter, then pull out the lancing device (or "poker"), and carefully take hold of the hand that rests on the edge of Joseph's pillow.

I draw a breath before pricking the calloused tip of my son's index finger.

He doesn't even flinch.

Squeezing his fingertip, a bubble of blood begins to form.

I pick up the meter, bring the loaded test strip to his finger and watch as his blood is drawn in.

5 . . . 4 . . . 3 . . . 2 . . . 1

67

Without turning to look at it, I reach for the jar of glucose tabs that sits on the small table next to his bed.

"Bud, you're low," I say quietly, then pull down his chin and push a glucose tab into his mouth.

Almost mechanically, he chews for a few seconds, swallows, chews some more, swallows...

I slip in another tab.

He doesn't open his eyes-- doesn't say a word.

Just chews and swallows.

When I've given him what I hope will be enough (but not too much), I take a seat on the floor by his bed-- and wait.

20 minutes.

I prick his middle finger this time.

69

Not enough.

Two more glucose tabs.

And still, he sleeps through it all.

I stare at him, shivering.

Imagining the sugar entering his bloodstream.

Willing it to.

Another 20 minutes.

This time, it's his ring finger.

He's now 104.

Relieved, I tear open a package of cheese crackers.

"Bud, you were low-- you have to eat some of these," I whisper, while feeding him a cracker.

I feed him another, then brush the crumbs from the sides of his mouth, his chin.

He sleeps through all of this, too.

All of it.

Before climbing back into bed, I set Ryan's alarm for two hours later.

Then finally -- at 12:45 -- I crawl under our heavy comforter.

And for a long time, lay curled on one side, cheek resting on my hands.

Eyes wide open.

Awareness

His blood sugar was 130 just forty-five minutes ago.

I'm scrambling to get ready for our family night out-- we're going to have dinner with some friends at their new home.

While I dry my hair as fast as I can, the kids play downstairs in the living room. Ryan just ran out to pick up a couple of dvds (Monster House and Edward Scissorhands) for the movie portion of the evening. The kids will watch, while the adults will drink wine and chat. Everybody wins.

My hair is still damp when I switch off the dryer, set it down on the side of the sink-- and listen.

Nothing.

And suddenly, there it is-- that awful, sick feeling in my gut.

I take off down the stairs, turn toward the living room, and before I even enter the room, I see Joseph's legs stretched out on the couch.

Oh God.

Running to him, I have to skirt around Evan-- who sits quietly in the center of the room, playing with her Polly Pockets.

"Joseph, Joseph," I say as I take a firm hold of his shoulders, shaking them.

"Wake up! Honey, you have to check your sugar!"

He's not responding.

Still holding his shoulders, I lift up the top half of his body-- my heart slamming against my chest.

He feels so heavy.

"Please, Joseph! WAKE UP!"

"Wha- What? Okay, okay, okay," he says quietly, groggily.

He gets up slowly-- swaying a little as he makes his way to the kitchen. I'm right behind him.

After a cursory rinse of his fingers under the faucet, he turns to the counter where I have a test strip loaded and ready, his lancing device in my outstretched hand.

His eyes, still not completely open, seem to have trouble focusing as he pokes his finger, squeezes, and looks for that tiny bubble of blood. I hand him the meter.

48

"Should I have four?" he asks, sounding exhausted.

I get him four glucose tabs, and watch as he slowly chews each one.

Five minutes later, I ask him how he's feeling.

"Mom, you always do that. I just ate the glucose tabs. And I still feel low," he says in a tired, slightly exasperated voice.

After fifteen long minutes, Joseph's bg climbs to 91.

For a few moments I sit quietly, thinking about what just happened-- about what this kind of low means for my son.

And I'm really, really scared.

But then, I take a deep breath and return to our evening out with the kids, with friends.

Because right now, there's nothing else I can do.

On Missing Those Cues

Thanks to everyone who responded to my previous post.

I understand what you're saying, but this is a real tough one for me.

Quite a while ago, I accepted the fact that we can't beat this thing-- perfection just doesn't exist. All we can do is work hard to peacefully co-exist with this disease -- highs and lows are inevitable.

Fine.

But recognizing those low blood sugars-- the ones that Joseph can't feel himself -- has been something I could do well for a while now.

Sure, Joseph can be wacky when he gets around friends-- it's that whole adolescent-boy-humor thing -- but honestly, I can usually tell the difference.

It's in his eyes, the way his smile lingers a little too long, the hint of a slur in his speech, how his body moves just slightly off-kilter...

Missing this kind of low scares me-- because the ones he can't feel are usually those with the most potential to become dangerous (i.e., he's falling fast and/or the low doesn't come up after the usual treatment).

And, I'm afraid we haven't yet figured out the reason for these lows. Same thing happened yesterday and last night-- and we went way conservative on his lunch and dinner boluses.

He was 82 just two hours after eating lunch (?!), ate a pile of popcorn at school with no bolus, and was 60 just 30 minutes later.

Three hours later-- right before dinner -- he was 59.

The only thing that comes to mind is that we changed his set on Tuesday morning, and he's got some kind of uber infusion site going...

Which would be okay, but how do we explain the lack of any rebound highs? He's had multiple lows over the last two days, and yet none of the usual later rebounds.

I know it's only two days, but it's got me wondering this morning about what his liver is doing... where's that sugar it's supposed to spit out in response to these low blood sugars?

It's also got me a bit mad that we have to wonder at all about what our son's liver is doing.

Missed Cues

I know I promised a post about the RI JDRF walk-- that's still coming -- but something happened that I couldn't leave sit.

Last night, Joseph and I went out to dinner and a JDRF support group meeting with a fellow blogger (Jenny from Until a Cure) and her son, Tommy.

Several hours before we were to meet our friends, Joseph called from school to tell me he had gone low-- his blood sugar was 64 at at 2:45 p.m. This surprised me because he'd eaten an apple two hours earlier and turns out, had forgotten to bolus for it (in hindsight, thank heavens he forgot).

Joseph treated the low with several glucose tabs and 15 minutes later -- after his bg had climbed to 90 -- an additional 25 gram cereal bar.

He should be good until our dinner.

Or so I thought.

By 4:30 pm -- an hour and a half later -- his bg had once again fallen. This time, to 54.

What the hell?

He gobbled down four glucose tabs, and within 15 minutes his bg had risen sharply to 166.

All right, I thought, we're gonna meet our friends for an early dinner. Now he should be fine.

Less than an hour later we're sitting in a booth at an Italian restaurant opposite Jenny and Tommy.

Joseph starts acting really silly-- talking loudly to Tommy, saying things that make no sense, and cracking jokes about almost anything Jenny and I say.

Geez, this kid is bouncin' off the walls. He must be really glad to see Tommy.

(Bad assumption, I know.)

"Hey," Joseph says to our very pretty waitress, "do you have to go to school to learn how to be a waiter?"

"No," she responds with a smile, "we just learn on the job."

"How many plates did you break?" Joseph asks with one big 'ol grin.

"None," she says, again smiling.

"Joseph-- please settle down," I tell him quietly, my hand on his shoulder.

He begins repeatedly tapping me on the shoulder, giggling and getting Tommy to do the same to his mom.

I plead with him several times to settle down.

Eventually, Joseph is under the table-- Tommy joins him there for a couple of minutes. The two boys laugh, using the backlights on their pump screens to see under there.

I'm embarrassed. I can't believe he's acting so over the top.

When our waitress finally sets a basket of large, soft garlic breadsticks in the middle of our table, Joseph can't get enough of them-- he devours two in less than 10 minutes.

And after our plates of pasta arrive, my son immediately tucks in-- polishing off a plate of linguini in marinara in no time.

By the end of our meal, he seems far less out of control-- and at the JDRF meeting, completely himself again.

Hmm.

It wasn't until we got home -- when again he got that look, and started making some more uncharacteristic, off-color remarks...

When, after several protests...

"Mom, my combo bolus is still active... geez, it hasn't even been that long since I ate... you know I had some Starbursts at the meeting... "

I made him check his sugar, and discovered he was 76 and falling fast.

It was then that I finally realized what must have been going on at the restaurant.

He was crashing.

And I never saw it.

The very same mistake I'd gotten so angry about last year -- when it had been his teacher who never saw the signs.

Damn.

Fail-Safe

(fāl'sāf')

An action taken to avoid disaster.

10:15 AM

Joseph calls with his post-breakfast blood sugar.

"Hi, mom. I'm 228 . . . you know, just a spike. Oh, and we're having the same snack as yesterday-- Cheez-Its."

"Okay, bud. Let's get that bolus on board and not worry about a correction."

".45-- should I go?"

"Go."

"Love you."

"Love you too, darlin'."


12:00 PM

Joseph calls yet again, this time with his pre-lunch blood sugar.

"Mom, " he says between telltale chews.

My heart sinks.

"I'm 67. I'm really, really sorry," he continues, in a voice muffled by the familiar crunching of several large glucose tablets.

"Honey, there's absolutely nothing to be sorry about. You're low. This is gonna happen sometimes. Really bud, it's okay."

"But, mom, you don't understand," then, he says miserably, "I didn't have a snack."

"What?"

Immediately I'm calculating in my head. No food since 7:00 this morning.

Five hours.

And more insulin.

Almost half a unit is a hell of a lot for this kid to take in with no food. Thank God he was high going into snack.

It should be all right.

Deep breath. Then, with no trace of the panic that has begun to take hold.

"It's okay. But honey, what happened to your snack?"

"I forgot all about it."

"Oh, honey."

"And... well... Mr. S. never gave it out."

"Oh."

Hmmm.

Now, along with fear and worry, anger jumps into the fray.

"Honey, I want you to call me back in 15 minutes with your sugar," I say, in as calm a voice as I could muster. "Just stay in the nurse's office, okay?"

I hang up, and immediately punch in the number for the school.

"May I speak with Mr. S, please?"

Dead space of hold.

"Mr. S, here."

"Hi, this is Sandra Miller, Joseph's mom. I'm calling because I just spoke with Joseph. He's having a low blood sugar right now. Apparently, he bolused for the snack, but that snack was never given out."

"Oh, well. You know, we didn't really have enough crackers for the whole class so we didn't hand them out."

A pause, and then in a bit of an awkward tone:

"And . . .well . . . Joe does have peanut butter crackers for those times when he needs them."

"Yes, that's true," I respond, struggling to hold my temper. "But he was told there'd be a school snack. He bolused specifically for those Cheez-Its. Then, when they were never given out, he just forgot. We really need to make sure that he eats something whenever he's given himself insulin for food. I guess I'm just looking for a fail-safe here. I really need to know that someone is watching out for him when he's giving himself his insulin. Making sure that if he forgets, he'll be reminded to eat something or bolus if need be."

I'm so damned combustible right now that if there is even a hint of disagreement, I'm just gonna blow.

"Sandra, I'm so sorry. I guess I need to be more involved with this."

"Yeah, that would be great. Really great."

12:15 PM

I get off the phone and just want to cry. But before I have the chance, the phone rings again.

It's Joseph.

"Mom, I'm 63."

"Okay bud, let's have ya eat three more glucose tabs, and check again. You came down pretty quick from that snack-time sugar, and that extra insulin is just pushing you down further. But it's okay."

12:30 PM

"Hi Mom," Joseph says, sounding much more like himself. "I'm 72."

The right direction, just not quite as high as I was hoping.

"Can you go to lunch right now?"

And so he did.

Rebounding hours later into the 300s.

I Hate This Damn Disease.

Shooting Down

Late yesterday afternoon, just before sunset, Joseph and I went sledding alone together for the first time in years. We drove to the largest sled hill in our neighborhood-- a massive, two-tiered bowl behind the local middle school. I'd never been there before-- when he's gone to this site in the past, Ryan was usually the one to accompany him.

Yeah, I'm a bit of a chicken when it comes to sledding.

So it was no surprise that, as I parked our car on a side street next to the school and got my first look at these hills from a distance, I was scared.

Aside from the much tamer hills at a nearby park, I really hadn't gone down anything like these since I was a kid.

It was 4:00 as we hiked across the snowy field that lead to the base of the steepest hill in the bowl. And Joseph grew more excited with each step we took.

"Mom, when I came with dad last year we usually went down the longer hill. This one kind of freaks me out, but today I think I want to try it."

Deep breath. "Okay, let's give it a go"

"Oh, and Mom?"

"Yeah?"

"Sometimes people kind of crash into each other here. You kinda can't avoid it."

"Oh."

So we climbed. Up, and up.

And up.

Until we reached the top, turned and looked down. At this point, we both paused a moment.

"Are you sure you don't want to go over to that longer hill?" I asked, only slightly hopeful, thinking:

What if he crashes into someone? Man this is high! And steep...

But, at the same time:

Boy, look at these people... you just fly down this thing. This could be really fun...

Without giving me an answer, my son leapt onto his bright red toboggan and shot straight down, hit a bump midway, caught some air, then continued down and across the field we had just traversed.

I was next.

Gently, carefully, I lowered myself onto the round "snow tube" we'd borrowed from a friend. It felt comfy, like something you'd sit upon while floating down a lazy river.

"Come on Mom!" Joseph shouted, while slowly making his way back up the hill.

"Just go! It's all clear."

Not wanting to disappoint my son (and really, a bit excited by the prospect of the virtual free fall I was about to experience), I pushed off.

Straight down, I went (while my stomach flew up). Then over that same bump.

And my God, for a split second I was flying.

And screaming.

And gulping mouthfuls of snow as I reconnected with the hill, spun around, and rode down the remainder of the slope backwards.

When I finally came to a halt, many, many yards from the base of the hill, I couldn't stop laughing.

So, for the next 45 minutes, Joseph and I took turns with the toboggan and tube. And rode down together on the toboggan countless times -- me sitting in back, holding tight, with my son leaning against my chest. And every time we hit bottom, we'd look at each other-- snow covering our jackets, our hats, our faces-- and just laugh.

We hadn't laughed together that much in a long time.

As we climbed the hill after our umpteenth ride down, a boy hiking next to us called over to Joseph.

"Hey, I know you. You go to Lincoln."

"Yup, that's right." Joseph responded. Then the other kid climbed on up ahead of us.

"Hey," I said, "Are you embarrassed to be here with your mom?"

"No. Not at all. Mom, it's more fun. Let's go!"

Continuing our trek up hill, I suddenly felt light. Light as air.

Again, we shot down. But this time, after we came to a halt, Joseph didn't stand up.

"Mom, I'm feeling a little low."

"When did you start to feel it?"

"Just before we got on the sled, but I figured it'd be better to wait til we got to the bottom."

He was right. The meter was in the car. Parked what seemed like miles away.

"Okay, I'm going to run and get the meter. "

I ran, through several inches of snow that felt like quicksand.

All the time, thinking:

It's getting dark. What if he's really dropping fast. And he's alone. Please don't let this be bad...

And as I got to the car, I realized that I had the glucose tabs in my pocket.

Oh my God.

I got the emergency bag, turned and saw Joseph sitting across the field-- waving, to let me know he was okay.

When I made it back to him, I told him to stick a finger in the snow, then wipe it on my denim snow pants. As he removed his glove, his hand shook even before his finger hit the snow.

27

"Okay, maybe the water from the snow diluted your blood. Let's just do a dry finger from your other hand."

It had to be a mistake.

21

"Mom, I'm scared." He looked fine, except for the shaking. And the fear.

"Honey, I'm gonna have you eat this tube of cake icing. Then we're gonna have some glucose tabs."

He sucked down the icing fast, then gobbled down four glucose tabs.

After several minutes, I just wanted to get him home. Out of the cold. The crowd on the hill had thinned considerably, as a thin sliver of moon shone bright in the clear sky overhead.

It was quiet where we sat. No one within shouting distance.

I had to get him home.

"Do you think you can make it to the car? I'll help you, okay?"

"Sure, mom," he said, suddenly looking so young, so helpless, but at the same time, so damn brave.

I carried the sleds, and held fast to Joseph as we trudged through the snow.

The longest walk I've ever taken.

Once home, 20 minutes after 21, Joseph's sugar had risen to 127-- normal range. Out of danger.

But I really couldn't say when my heart rate did the same.

Two Steps Forward...

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.

An Incident At School

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.

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.

Before I read this email, I already knew what it was about. Joseph told me the moment we arrived home on Friday.

"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."

Hmmmm.

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.

Insulin Pump Woes

Just before Joseph left school on Friday, his blood sugar was 118. In the 45 minutes he sat on the bus, and the five minutes it took for him to walk the half block from the stop to our house, his blood sugar dropped 81 points-- to 37.

Of course, we did not discover this fact immediately.

"Mom!" Joseph called out as he walked in the door. "My pump alarm went off twice on the way home from the bus stop. It said ‘Warning, No Prime.’"

"Okay, let's take a look."

"Oh, and mom, I think I might be a little low."

While Joseph washed his hands and prepped the meter, I looked over his pump. According to the history menu, we had primed it the previous night (when we changed his set). Okay then. To be on the safe side, I re-primed. When I turned to give Joseph his pump, a beep sounded from his meter indicating that his sugar had been tested.

"Wow . . . I guess I'm really low."

So, what is it with 37? We've seen this number three times lately (in and among some 40s and 50s). It's like, if he's gonna go way low, it's gonna be a 37.

I don't know.

Anyhow, we treated the low, and Joseph was back up in 15 minutes.

Needless to say, the thought of him walking home alone at 37 was more than a little frightening.

Something else bothered me too. Something that's been needling at me for two weeks. On August 19th, when we'd gone through airport security in Spokane, a security person had actually tried, too late, to prevent Joseph from passing through the security screen. Strangely, he said it was "for his own protection." That's never happened when we've flown before.

Since that day, Joseph has had many precipitous blood sugar drops, despite pulling back his insulin to pre-vacation levels. I had assumed the lows were due to the honeymoon factor-- that his pancreas was simply spitting out higher levels of insulin. But maybe I was wrong.

You see, for one day, our first day back from vacation, the pump recorded Joseph's bolus and basal doses in the previous day's history. In other words, for one day, it experienced an odd malfunction. After I reset the date and time, it worked fine, but still . . .

So, because I was feeling upset, and fearful that his pump might not be functioning properly, I called Animas. After explaining the above to a pump support person, she said, "I can really sympathize with your concerns, but it sounds like the pump experienced what I like to call a 'hiccup.' If it was bumped or dropped, sometimes it loses its prime, and just needs to be re-primed. "

A hiccup. Hmmmm.

"You know I think I'd feel more reassured if we were just talking about a toaster. But we're not. This is my son. And this is his insulin pump."

"Yes, I know. And I understand. But they're really picky about the reasons for sending out a new pump. This really isn't a good enough reason."

"Okay then, " I said curtly, as the anger that had been churning in my stomach finally reached the boiling point, "what is your name?" And then rapidly, "Because I just want to make sure I know with whom I've spoken, in case we need to follow up here. In case there's a problem."

After giving me her name, "um . . . well you know, I was just thinking . . . that um, we might want to do this. Well, it's not something we normally do, but it might be a good idea here. I can send you a loaner pump so that you're not without a backup over the long holiday weekend . . . "

The loaner pump never came.

Fast forward to this morning. I went downstairs to make Joseph his lunch for school, and to go over his overnight sugars with Ryan. As I walked in the kitchen, Ryan was there waiting. And he did not look happy.

"Joseph's pump display is fading," he said, in a defeated tone.

I sat down.

"What?!"

"The left side of the display is gone. I don't know if what's left will make it through the day. He can see enough of the screen to do boluses, but I don't know for how long . . . "

Violently, I grabbed the phone.

Joseph's new insulin pump – his third in seven months – will be here tomorrow.

Extremes

Well, we are home. After nearly two weeks away (including 9 days on a mountain lake in northern Idaho) we're all somewhat glad to be back. Joseph had an awesome time-- he was one of six kids at the lake. And the only boy. In addition to Evan, there were two 10- and two 13-year-old girls.

Initially, I was a bit worried when our friends told us they'd be bringing along two of their daughters' friends. I thought that Joseph would be anxious about being so far outnumbered. So, a few weeks before the trip I shared the news with him:

"Joseph, it looks like Anna and Margot will each be bringing a friend this year-- both girls," I said, rather tentatively.

Then I watched for a reaction-- fully expecting disappointment, possibly a blow up. Best we get that out of the way before we get to the lake.

As Joseph looked up from his breakfast cereal, his mouth formed a huge grin. I simply stared a moment, more than a bit flustered. Then, before taking another spoonful of cereal, he said, while slowly nodding his head-- still grinning, mind you:

"Four babes . . . cool."

Needless to say, he had no trouble hanging out with this group of lovely young girls. (Oh, by the way, they liked him too).

So the vacation was fabulous. Lisa and Daryl are two of our oldest and best friends, and we've been doing this trip since before we all had kids. These are the kind of friends with whom you can cook (we all LOVE to cook), hang, play cards til the wee hours, and not feel like you have to fill every silence.

Simply put, our time with "L & D" was, as it always is, rejuvenating for all of us.

Now, you might think that given my description above, our time away was a study in relaxation. And in many ways, you'd be right. But you know, with diabetes, life is never, even in the most relaxing of settings, a long quiet river. There are always the unexpected rapids. And I'm afraid this trip was no exception.

As I mentioned in my previous post, we decided to try the "untethered regimen," which, for the most part, worked well. Joseph would inject himself with Lantus in the morning, then stay disconnected for most of the day (while swimming, canoeing, etc . . . ) -- reconnecting for food boluses and for the overnight. Now, to make sure he wouldn't be getting too much background insulin, we adjusted his basal rate down in proportion with the Lantus he was getting by syringe.

What really surprised me was how high his sugars got at night-- especially given how active he'd been during the day. Ryan and I shifted off checking him (every 1 1/2 to 2 hours), correcting, and even getting him up to use the bathroom (we'd promised him that we'd keep him from wetting the bed). I even had to do some set changes in the middle of the night-- in case a bad set was behind the persistent highs (which never really seemed to be the culprit).

In addition to the nighttime highs, he had some highs during the day as well-- not nearly as difficult to control, but requiring adjustments nonetheless. We kept increasing his basal rate (from as low as .025/hr to as high as .225/hr at night), adding more Lantus, and changing his insulin-to-carb ratios (from 1:30 to 1:15-18), until he was taking in almost 23 units a day (up from between 9 & 11 units before our trip).

What the hell? Was this it? Was he coming out of the honeymoon? Seems like every time Joseph's sugars go consistently sky high, and stay that way for days, I assume that this is it. Just look at the last time this happened. I was absolutely convinced that he was coming out of the honeymoon. But that time his highs were-- according to his endocrinologist -- caused by a growth spurt.

Well, here we go again.

And all this time, I wondered, was it the out-of-control highs of his week at camp that had killed off those remaining beta cells? Could those highs have pushed him out of the honeymoon?

I felt horribly responsible. If I'd just given the folks at camp more instructions, then maybe he'd still have something. He wouldn't be completely diabetic. I know, I know. Just as it's impossible to be "a little bit pregnant" you really can't be "a little bit diabetic." But I guess part of me still doesn't want to let go of what's left of his islets. I want him to have something. Even if that something can make our lives miserable by adding yet another level of unpredictability to this disease.

Anyhow, just as before, it seems I was wrong about this being "it."

On just our second day back, Joseph crashed in a big way. We were out shopping for new school shoes -- just as we'd been one year earlier, the day he was diagnosed. While sitting on the floor in Famous Footwear, slipping on a pair of Vans, Joseph looked up at me and said "I feel kind of low."

Only it sounded more like he said "I feel kind of slow." Oh.

"Just stay right there" I said as I pulled the meter from my bag, ignoring the inquiring looks of the headset-clad employees who came over to make sure we were "finding everything all right."

Joseph was 37. Good God.

So we remained on the floor as he gobbled down four glucose tabs, and waited. Ten minutes later he was 60. Another two tabs. Another ten minutes. 97.
Okay now. Much better.

We quickly made our purchase, and proceeded to the sub shop in the mall for an early lunch.

After eating we went out and bought him a fishing rod and spinning reel-- like mine. We had done a lot of fishing at the lake, and I thought it would be a nice way to acknowledge the anniversary of his diagnosis-- the fact that we've all come so far, learned so much, and that he's still strong and healthy.

I just wished he hadn't had that low.

Little did I know that it would be the first of many lows he would experience over the next few days-- day and night-- until finally, we would pull his insulin back to where it had been originally (a total daily dose of around 11 units).

Last night, looking for some explanation for what was happening, I pulled out our measuring stick-- the one we've used to mark Joseph's height since he was a toddler.

He'd grown nearly an inch since we measured him last-- just over three weeks ago.

Overnight Camp

Okay, so earlier this evening I took my 2 1/2 -yr old daughter Evan out to the School Forest where Joseph is camping overnight with his classmates, teachers, and several parent chaperones. Ryan is, of course, among the chaperones. Evan and I were to join all of these kids in the woods for dinner and a campfire. I was glad for the invitation, as this field trip had me more than a little nervous.

Earlier in the day, when Ryan called on his cell phone during their nature walk, he had said simply, "Joseph just tanked."

"What? "

"His sugar." He paused. "It just tanked."

I could tell he didn't want to give me a number. It's really hard for him. I do so much of the day-to-day. For him to have to manage this under such unusual circumstances was rough. It would have been hard for me.

"He was 54." Holy shit. In the middle of a forest.

Then Ryan said, "But he came back up pretty fast."

"Yeah?"

"I think we over treated."

"What do you mean?" I felt my jaw begin to clench, and that awful, familiar sensation in the pit of my stomach. Like I'm riding a rollercoaster. Or just about to.

"Well, he was 266 about a half hour later."

"Okay."

"Yeah. I gave him three glucose tablets. Then a cup of Chex Mix."

Way too much Chex Mix. But man, this is so hard.

"It's all right. He'll be traipsing around in the woods all afternoon," I said, trying to keep myself from worrying too much about these fluctuations.

Sure enough, an hour after this high, and for the rest of the afternoon, his blood sugar stayed between 95 and 150-- until I arrived at dinnertime, that is. You see, his teacher took me aside as I walked into the campsite and told me that about a half hour earlier she had noticed Joseph eating potato chips.

A lot of potato chips.

When I asked her if she saw him bolus, she said "No, I didn't see him take out his pump at all."

I found Ryan shortly after this chat, and asked him about the chips. He said he hadn't seen him eating them, but he did see him eating M&Ms -- for which he didn't have Joseph bolus, since he was 95 at that time (an hour earlier).

So Joseph walks up-- and he is totally busted. Though, I don't get too heavy-handed with him-- despite the fact that he's now 234. I just remind him that he's got to bolus if he's gonna eat these things. It's fine to have treats, just cover them with insulin. To his credit, Joseph explains to me that because he was running around so much, he thought the snacks would be covered by the increased exercise. "Mom, I was really active," he told me. And, although it scares me to think that he just ate that stuff without bolusing -- how dangerous that could be -- I couldn't help but feel reassured by the fact that his reasoning was sound. Hell, the kid probably felt miserable when he was 54, and didn't want to risk going there again.

Before dinner Joseph gives himself a correction, and then boluses for his food. While sitting next to him at our picnic table, I begin to take in the surroundings for the first time since my arrival. Just beyond the picnic tables is a large, open, grassy field that seems to sit on a plateau. This is where the kids play ball, frisbee, tag. It's perfect. The field is flanked by 4 rustic cabins. And just behind the cabins, encircling the entire campsite, lies a thick, heavily-wooded forest that slopes steeply downward-- and then goes on for miles.
Pretty damn cool.

With the main course done, everyone heads to the other side of the field -- to the camp fire -- where marshmallows will be roasted, and S'mores devoured. That feeling in my stomach, you know, the one I mentioned earlier. Well, here we go again.

Joseph is way ahead of us. And before I can figure out the carbs for all of the components of a S'more, he's running back shouting "Mom, I know the carbs! It's six for the marshmallow, 11 for the chocolate [they were a bit stingy with the Hershey's], and 11 for the graham cracker." He's right.

Joseph runs back to the fire, triumphantly grabs a stick, firmly plants a marshmallow on the end of it, and joins his buddies around the fire. He's beaming.

And so am I.