When you think it can't happen to him

I need to remember to put the phone by Joseph so I can wake him up to do a check after I'm gone.

(That's my first thought on waking at 6:15 am last Tuesday morning.)

This will be Day Two of a conference I'm attending for my job. The event pulls together folks from citizen advocacy groups across the Midwest. And since most of the work I've done this summer has been from home, this opportunity to learn, share ideas and meet other advocates is welcome indeed. In fact, I rearranged our summer vacation plans so that I could be in town for this thing -- and I'm really glad I did.

I have to be downtown at 8am, the same time Ryan has to be at work -- and Joseph is going to watch Evan for us.

Before heading downstairs to shower, I snatch Joseph's meter and logbook up off my dresser, and step quietly into his room. My boy is stretched out on his futon, face buried in his pillow, when I take hold of his right hand and prick a finger.

368

Wait-- that can't be right.

Whipping open his logbook, I see that he was high all night -- and that he and Ryan did a set change at 2am when he was 398.

Ryan noted that he'd had a bent cannula.

Despite the fact that Joseph has been in the 300s before -- that there have been times when he's experienced a night of high blood sugars, and he's been okay -- I get a sick feeling.

Deep down in the pit of my stomach.

It takes all of 10 seconds for me to run downstairs, grab the blood ketone meter from the black bag, tear open and load a strip, and prick yet another of Joseph's calloused finger tips.

2.1

Oh no.

In almost six years with diabetes, Joseph has never had a blood ketone reading higher than .5 -- a urine ketone strip darker than pink.

Not even at diagnosis.

"Joseph... Joseph... Bud, you need to get up," I say, shaking him gently while trying to stay calm. "You're really high and you've got ketones. A lot of ketones."

Joseph is suddenly bolt upright and heading into the bathroom. Seconds later, he walks back into his room, wide eyed -- holding out a urine ketostick with a dark maroon tip.

"Okay, Bud-- let's get you some water. We need to flush out those ketones."

"What's going on?" Ryan asks, joining us in the hallway.

I fill him in as the three of us move quickly downstairs. Even though Joseph has a new 4-hour old set, and a correction on board, I draw up a shot, inject, then have him sit on the couch and drink a glass of water.

"This is really bad," I tell Ryan quietly in the kitchen-- and as if to illustrate this point, Joseph calls out from the couch:

"Mom, my stomach doesn't feel good- "

He hardly gets the words out of his mouth before he's back up and running to the bathroom. I'm right behind him. He barely makes it to the toilet before he's retching violently. I crouch down by his side and rub his back. When he's done, Joseph sits back, leaning against the tub.

"I feel a lot better, Mom," he tells me in a shaky voice, "I think I just needed to throw up."

And for half an hour, he really does seem better.

But then when I check him again at 7am, his blood sugar is 323; ketones are now 2.4.

Worse -- after more water, he's vomiting again.

We can't do this ourselves.

I grab the phone and punch in the number of the diabetes physician on call at our clinic -- then pace all over the house until finally, 15 minutes later, he calls back.

I give the doc everything -- Joseph's numbers from the previous night (he was 120 before dinner, before climbing into the 300s overnight), ketone levels, the vomiting...

"All right," he says, "it sounds like you're doing all the right things. You need to give him insulin by syringe every two hours, using a sliding scale -- let's not rely on the pump. Also, you need to give him calorie-containing fluids -- watered down orange juice, flat soda... -- and then insulin for them. Remember, the idea is to bring down the ketone levels, not necessarily the blood sugar.... "

"Should we just bring him in?" I ask, trying to keep the panic out of my voice.

"No, I think you may be able to turn this around at home -- but if you don't see improvement in the next 4 hours, then you'll have to bring him to the emergency room."

"Okay," is all I can say. Anything else is caught in my throat. Through tears, I write down the sliding scale for Joseph's injections.

Then I take a deep breath and return to the kitchen.

"Ryan, we need calorie-containing fluids -- the doc suggested watered-down orange juice, but I think the acid is going to be too hard on his stomach. Ginger ale and Gatorade or G2 might be better."

So Ryan heads out to a store five minutes from our house.

And I'm pacing again.

It ends up taking him nearly 20 minutes.

At 7:50am we do another check-- Joseph's blood sugar has dropped to 268, ketones to 1.9.

Thank. God.

I have him drink a small glass of G2, and within minutes he's vomiting again. Bending over him, I press gently on the back of his his neck with a cool, moist cloth. "You're gonna be all right," I say to him, over and over.

A little over an hour later -- at 9am -- his blood sugar is 245 and ketones have dropped to 1.5.

"I think he's turned a corner," I tell Ryan.

"Maybe you can go to your conference," Ryan says, "I can stay home the rest of the day... "

"Maybe... but not until I know he's really okay and- "

"I'm hungry," interrupts a small voice coming from the stairs. Evan is awake and ready for breakfast. Ryan gets her a bowl of cereal. After eating she joins her brother in the living room, settling in on a chair next to the couch.

At 9:45, I leave a message for my boss bringing him up to date on what's happening, telling him that Joseph is feeling better and that I might be able to make it to the 11:15 session -- unless something changes between now and then.

And it does.

15 minutes later, when I check Joseph again, his blood sugar is 287 -- ketones are back up to 2.2.

The whole time, even though we've been injecting him, Joseph has been connected to his insulin pump. I'd hoped the basal insulin he was getting from it might help...

"Bud, can you pull out your set?"

He reaches down to his left hip, takes hold of the set and pulls.

Then we both just stare at the cannula: a tiny teflon tube, bent so flat it's flush with the surrounding adhesive tape.

Two. Two bent cannulas.

"I should have had you do that earlier. I just assumed... a new set... "

When I leave the room to get a new infusion set, I stand alone in the kitchen. Frozen. Thinking about this stupid mistake and what might happen because of it.

Then I grab a set.

After insertion, I give him yet another injection.

An hour later, at 11am, Joseph's blood sugar is down to 264.

But ketones are 2.5 and he's throwing up again.

"Bud, how do you feel?" I ask him, when he resettles on the couch.

"Better," he says, "actually... I feel hungry."

We both laugh. But still, I'm frightened-- and feeling more helpless than I have in a very long time.

Noon is the cut off, I tell myself.

Regardless of blood sugar, if ketones aren't improving or he throws up again, we're going to the ER.

At 11:55, I take hold of his hand.

"I'm sorry I have to keep doing this, Bud."

"It's okay, Mom." Then he gives me a long look. "Thanks for staying with me."

I look down at his hand in mine, unable to say anything. Then, praying silently, I prick the tip of his finger, touch it to the loaded strip and stare at the meter's display.

.9

And it's like a mass has suddenly been lifted from my chest.

"Yesss!" we both say, high fiving and fist bumping.

Blood sugar is still high at 244, but thankfully, it too is coming down.

"Mom, if my ketones keep going down, can we get Subway for lunch?"

"Whatever you want, Bud... whatever the heck you want."

Then I sit with him on the couch, his head in my lap, and watch reruns of the Cosby show, during which his ketone levels fall from .9 to .7 to .4 -- and finally, to zero.

(Though it takes until eight o'clock that night to bring his blood sugar down to 115 -- and far longer for me to feel in any way relaxed.)

Oh, and yes-- we did indeed get Subway for lunch.

Frozen

"Do you have diabetes?"

"Wha - What? No, no I don't" I say, looking up at the doctor's face— trying to breathe through the pain.

"Now, lie still and try to relax your arm," he says, taking hold of my right hand once again — then lifting my arm straight up toward the ceiling.

And again I try to breathe, as this time the doc moves my arm slowly back toward my head.

Only he can't get it anywhere near my head.

Like there's some large invisible wedge between my arm and the exam table.

"Well, this is a classic case," he says, bringing my arm back down by my side and then turning to the resident sitting in a chair next to the exam table — a young dark-haired woman wearing large white-framed eyeglasses. "No history of trauma, several months of rapid loss of motion... let's turn the arm inward."

Taking hold of my wrist and elbow, he bends my arm at a right angle and attempts to twist it down toward my stomach.

I cry out— because that tiny motion feels like he's just stabbed the top and front of my shoulder with a knife.

Breathe... breathe...

"Range of motion is lost in all directions," he says, with a note of finality that makes me queasy.

Placing my arm by my side, he turns once again to the resident. They continue talking about my symptoms, my history— while I stare at the ceiling, tears sliding down into my hair.

No, it's not just what they're saying, it's the damn pain still reverberating from the top of my shoulder down to my elbow.

Please just stop.

"... so we have a severe loss of motion in all directions, high level of pain... we're dealing with only one of two things, aren't we?"

"Yes," the resident responds tentatively.

"And what tests would you order?"

"X-ray."

"Yes— which was already done, showing healthy bones with some calcification on an otherwise healthy rotator cuff, meaning we can rule out... what?

"Arthritis," the resident says, sounding more confident.

"Correct. So what is the only other thing this could be?

"Adhesive capsulitis."

"Exactly!"

They smile at each other, clearly pleased that this resident gave the right answer.

I clear my throat.

Both turn toward me.

"Yes," the doc begins, "I'm very sorry, but what you have is adhesive capsulitis — a "frozen shoulder." It's a painful condition- "

"Yes, I know."

"... one with a very long recovery period. First, understand that you didn't do anything wrong. There's nothing you could have done to stop this. No one is really sure why this happens or how. We do believe that there is an autoimmune component to it— partly because the majority of those who suffer from the condition have diabetes."

"My son has type 1 diabetes," I say, distractedly, pulling myself up so that I'm seated on the table, legs dangling over the edge like a little kid's.

The doctor tells me I'll need physical therapy for as long as a year or more. He tells me about the three stages — "freezing, frozen and thawing" — and that to minimize range of motion and muscle loss, I'll need to do a lot of work. A lot of painful work.

"What about a cortisone shot?" I ask, hopefully.

"A steroid shot won't cure this, and we see mixed results when using it to treat frozen shoulder symptoms, but it might relieve some of the pain for a short time."

"Could you give me a ball park percentage of people who present like me and actually experience pain relief from the shot?"

"I'd say it's about 50%."

"Oh."

"It's always something we can try," he tells me, "if the pain becomes unbearable."

Three hours ago, when I arrived for my appointment with this specialist — this orthopedist who deals only with shoulders — I'd been so ready to plead for a steroid shot...

But now.

"Well, it's pretty bad at night and if I challenge it in any way..." my voice fades and then, "I think I'll hold off on the shot today."

So that's it.

I've heard about this thing, but could never really appreciate how bad it was until now.

Until I couldn't go to bed without waking repeatedly in crushing pain, simply because I rolled onto my shoulder.

Until I couldn't get my coat off without a struggle.

Until I couldn't reach my back pocket.

Until there was no sledding.

(Not even on the backyard hill)

No hugging my children without pain...

I don't think I've stopped shaking since yesterday's appointment.

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.

A Bittersweet Win

"I can't believe it-- we're actually gonna see the Red Sox play tonight!"

"Mom, we should just get cable," Joseph says with a sly grin, "then we can see them anytime we want."

"No."

That's all I say. Because I don't feel like explaining yet again that if we had cable TV, we'd be a family of lab rats-- spinning endlessly through all of those channels...

Nope, I'm not going there.

We're having dinner in a sports bar on a fine Saturday night, minutes away from watching Game 6 of the American League Championship Series in glorious high definition TV.

In fact, all of the plasma TVs in view will be showing our game.

I am in heaven.

In. Heaven.

And nothing is gonna spoil it.

You see, just two nights ago, I listened to Game 5 on the radio while the rest of my family slept. I heard that amazing comeback.

Now, I was about to see my boys play.

"Uhhh, Mom... " Joseph says, interrupting my reverie, "where's the game?"

"Huh?"

Immediately I peel back a sleeve to look at my watch, and then my eyes return to the giant screen several feet in front of our booth.

Yup, the "TBS" logo is exactly where it should be, in the lower right corner.

But, wait-- a sitcom is on?

"What? What?" I sputter.

Frantically looking around for someone who can do something about this, I spot a young, dark-haired man behind the bar explaining to a white-haired gentleman in a Boston cap that he'll try to figure out what's going on.

When I turn back to the giant screen, words scroll across the bottom telling us that TBS is experiencing "technical difficulties."

WHAT?!

For several long minutes, I stare at the screen in disbelief-- while Ryan works hard to reassure me that I will indeed get to see my game.

And thankfully, he's right-- minutes later, I see Josh Beckett going into his wind up.

Criminy, TBS-- don't scare me like that.

Spirits lifted, I sigh, sit back and watch Beckett throw a perfect strike.

And just as he's about to let go a second pitch, I hear my daughter's voice.

"Mama, I want to go home."

"What? What?"

"I'll take her home," Ryan tells me with a smile. "You and Joseph stay here and enjoy the game-- I can listen to it on the radio."

"Ah ya sure?"

"Yes, I'm sure."

(Have I mentioned lately how much I love this man?)

Soooo, moments after Ryan and Evan leave -- with the Sox down one run -- Joseph and I belly up to the bar so we can sit with the other two Boston fans in the place-- that older gentleman in the Boston cap (Rob) and his wife (Deb).

Turns out, Rob is actually from Massachusetts-- born 66 years ago in my hometown. In the very same hospital where my mother had me.

We laugh at the coincidence and proceed to cheer loudly for our team.

Between innings, Joseph talks baseball stats and pitching calls with Rob, even getting up at one point to demonstrate the throwing motions of his favorite major league pitchers-- Daisuke, Papelbon, Beckett, Sabathia...

And he's spot on.

Over and over, Rob tells me: "If I ever had a son, I would have wanted this one!" and "I just love your boy!"

All the while, I sit back on my bar stool and beam.

Until about halfway through the game, that is-- when Rob asks Joseph who he wants to win the presidential election.

"Obama, of course!" Joseph says.

"What about the other kids at your school?"

"Obama. All the way."

Rob, still smiling, turns to me and his wife.

"What about you?" I ask. "Have you all decided who you're going to support?"

"McCain," he responds with a grin. Deb nods, chiming in--
"Oh yes, McCain."

Usually, when someone tells me they support John McCain I leave it at that, respecting their decision-- as I hope they respect mine. But there's something in the way Rob says it. I can't put my finger on it, but for some reason I can't leave it sit, so I go on.

"What made you decide to support McCain?"

"It's simple, Obama is going to spend and we don't have the money-- we need to do an across-the-board cut." He pauses, takes a sip of his Chardonnay, and then continues, "Don't get me wrong, Bush ran us into the ground running up the debt. But now we need to stop spending. Period."

"You do realize that some programs are necessary-- education, healthcare- "

"Nope. We've got to stop. If I had kids I'd probably feel different, but I don't."

He chuckles, and then adds, "It's not our problem."

Those words -- that laugh -- feel like a blow.

"But what about healthcare?" I ask, struggling to stay calm. "You do know that John McCain's own campaign announced two weeks ago that he was going to pay for his healthcare plan 'with major reductions in medicare and medicaid'-- this didn't come from Obama's campaign or a commercial, this came from John Mc-"

"That won't affect us," Rob says, with an almost serene smile.

"But people, people like my son... he has diabetes- "

And now, Rob and Deb stop smiling.

"Listen," I continue, "John McCain's healthcare plan, if he puts this thing in place... well, my son may not have access to the tools he needs to treat his disease. Insurance companies will be allowed to relocate to those states that don't require coverage of diabetes supplies. This will hurt my son, and millions of others- "

"Yes, yes," Deb cuts me off, "pre-existing conditions, that's right-- people with pre-existing conditions. That will be hard for them."

Hard for them. HARD for them?

I want to scream.

But the game is back on.

For a while I can't say anything. I can't even look at them. But then, the Red Sox score another run, and we're cheering again.

In the end, the Sox win. We all celebrate with hugs and high fives, and then say our goodbyes.

"Thank you," Rob calls out, as we pull on our coats, "you both made this game really special."

As I'm backing out of our parking space, Joseph turns to me and says, "Mom, I really like those people."

"Yes, they were very nice," I say, my voice catching.

And here I am, days later-- still feeling troubled.

Yes, the Sox were eliminated and that really sucks.

But it's that conversation at the bar I can't seem to shake.

The Mega Park

He's gonna be fine.

That's what I keep telling myself, over and over.

He'll have a blast.

But, I can't get rid of the gnawing in my stomach-- and I cannot stop thinking about all the things that could go wrong.

What if he's low while he's at the top of a rollercoaster?

That place is so big-- what if he can't find Ryan?

They'll be in the Dells, where a storm is headed-- where there'd been massive flooding over the weekend.

"Sandra, it's gonna be great. Just relax," Ryan tells me this morning as I begin spewing out some of these fears.

But I can't relax.

Since first hearing of this end-of-school-year field trip, I've been quietly fretting.

A mega indoor/outdoor water and theme park-- over an hour away...

Jam packed with middle-schoolers from all over the state.

My heart is in my throat just thinking about it.

"What will you do if you're in a long line and feel low?" I ask Joseph over breakfast.

"I'll take some glucose and go check in with Dad," he responds in a matter-of-fact tone.

"But who will go with you?" I continue-- struggling to keep the tension out of my voice.

"Probably one of my friends."

"Probably? Bud, you have to make sure someone goes with you-- that park is huge."

"Mom, Mom- stop worrying. Geez, I'm gonna be okay. You're driving me crazy."

So I back off.

Before they leave, Ryan and I discuss how much we should lower Joseph's basal rates while he's running around the park, while he's swimming...

When we're finished I just sit in my chair, quietly staring down at my hands-- until I can't keep it in any longer.

"You know, if he didn't have diabetes, I wouldn't be freaked out at all. I loved amusement parks as a kid. I just- "

"A lot of things would be easier if he didn't have diabetes," Ryan says--and then adds with a shrug, "but it is what it is."

He picks up the black backpack, his duffel-- and walks out the door.

Sitting here now -- listening to the rumble of thunder -- all I can think is how very long this day is gonna be.

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.

Locked In

"Hi-- is this Joseph's mom?" asks an unfamiliar voice.

"Yes," I say into the phone.

"Ms. Miller, this is Ms. G___ , Joseph's gym teacher."

His gym teacher?

Wait, Joseph called an hour ago -- right before gym. His blood sugar was only 140, and he had a ton of insulin on board, so I had him cancel the rest of his lunch bolus, and eat a bag of cheese crackers...

Suddenly I'm feeling very afraid.

"Is something wrong?"

"No, no- he's fine now.

Now?

"What do you mean? What happened?"

"Well, you see he came to class a little late-- because he had to check in at the nurse's office -- and then he went to the boys' locker room to change, and then came back out because he couldn't remember the combination to his lock. I gave it to him, and then he went back in."

A pause.

"And then?"

"Well, the boys' locker room is on the other side of the gym, and we've had some problems with theft recently-- so we've been locking the door after classes start... "

Another pause.

And now I want to reach across the phone and pull the words right out of her throat.

"Well, I'm afraid that Joseph got locked in...

Still another pause.

For... uh... 20 minutes."

"20 minutes?"

"You see," she continues, awkwardly, "the teacher from the other side of the gym must not have called in before locking the door-- but, it's all my fault. Joseph let me know he was here when he got to the gym, and then I forgot about him."

For about a second, I don't know what to say.

I just feel sick.

"His blood sugar was falling right before your class," I tell her. "This could have been really, really bad."

"Yes, I know," she says. "I'm so sorry."

"Yesterday, his blood sugar fell nearly a hundred points in less than 15 minutes... " I say, half to myself. "Wait- are you sure he's all right?"

"Oh yes-- he was laughing when we found him in there. I asked him why he didn't call out-- he said he did, and that he banged on the door, but no one heard. That locker room is on the other side of the gym. And well, shortly after he went in, I started videotaping my student teacher... and I just forgot about him."

For a few minutes, we talk about why this could have been very serious.

And about how the school will make sure it doesn't happen again.

Then I hang up the phone, turn and lean over the kitchen counter.

And very quietly, begin to cry.

So Here's the Scoop

First- thanks.

To everyone who continues to come here -- even when I don't show up -- and to those of you who've commented or sent emails checking in.

We're all right.

I think.

Remember how, two posts back I mentioned that a ton was happening and that there were some things I couldn't talk about yet?

Well, I can now.

Ryan is changing jobs.

After teaching Java programming for over 10 years, he's burnt out -- has been for a while -- so much so that he wants to stop teaching altogether and return to software development.

As a result, he started looking-- and ended up interviewing for a development position with a very small (but growing) company.

He came home from that meeting more excited about work than I've seen him in a long time.

The people were great, the work sounded interesting-- and he could still ride his bike to the office (when it's not bitterly cold and snowy, that is).

Sounds perfect, right?

Well... almost.

You see, Ryan hasn't done software development for a very long time-- so in order for him to make this change, he has to take a pay cut.

A big pay cut.

And then there's the health insurance.

For a while, we were unsure whether or not Ryan could even consider this job-- the benefits had to cover Joseph's pump and supplies.

We could never afford them otherwise.

Thankfully, after much research -- and much, much hand-wringing -- we discovered that while we'll have a deductible (ouch!), our copay will be less than our current one. And this new provider covers both the Animas and Medtronic pumps (but sadly, not the Cozmo).

So far, the only bad news about this new insurance is that Lifescan is not on their formulary-- thus our fleet of OneTouch meters will be useless to us.

(Any information folks could share about other meters would be much appreciated!)

Oh yes, and I'm still on the edge of my seat wondering if our new insurance will cover our 400 test strips a month.

We won't find this out until Ryan starts the new job in mid-November.

Now, in addition to stressing out about all of this -- and trying not to let the kids see me stressing -- I've been thinking about my own career.

I haven't had a paying job since teaching birthing classes nearly eight years ago.

(Man, I wish this job change were happening next fall-- when Evan will be in kindergarten full days -- right now, she's only in preschool a few days a week for 2 1/2 hours.)

I don't know.

I have a few ideas, but nothing really solid yet.

And nothing -- so far -- that will allow me to work around the kid's schedules.

Soooo... that's the big news.

There's more to talk about-- Evan's recent obsession, Joseph's first middle school dance, the end of the Fall Ball season, those dang Red Sox-- not to mention my non-paying, but really cool recent project.

But, if I'm gonna post something at all, I'd better stop here.

Highs and Lows

"Mama, Mama, Mama... I want Mama."

I turn on the light, bend over, reach down and -- before my hand touches her skin -- feel the heat.

"Oh, Honey-- you're burning up," I whisper.

But she doesn't respond-- she just keeps rolling back and forth, eyes closed tight, moaning.

"It's all right, Sweetie-- Mama's right here, Mama's right here," I tell her, while gently stroking her forehead, cheeks, and belly-- my right hand pausing on her chest.

Beneath that hand, her heart beats frighteningly fast.

Jumping up quickly, I stumble over a sippy cup on my way to the medicine cabinet.

I grab the thermometer and a bottle of Children's Tylenol-- and then spend several long seconds searching frantically for a dose cup.

The cup, the cup... now where's that damn cup?

Moments later, I discover that Evan has a fever of 102.2.

It takes a while to coax her into drinking the thick cherry liquid-- something she normally doesn't mind doing.

But not tonight.

"I don't want to, Mama," she says, and then through tears, "I just... want... Mama. "

Early the next morning, we're sitting in an exam room at her pediatrician's office.

As the doctor listens intently to her back and chest, I hold Evan's hand-- inhaling and exhaling right along with her.

"I want to do a chest x-ray," the doctor tells me, "I don't like what I'm hearing on the right side-- she probably has pneumonia-- I just need to find out what kind so we can determine how to treat it."

Pneumonia?

Soon my little girl is standing on a low platform with her shirt off, shivering, while holding her arms high above her head-- a tiny lead apron wrapped around her hips.

Twenty minutes later we're standing next to Evan's doctor, looking at an image of my girl's lungs.

"Well, she definitely has pneumonia."

Noting my fearful expression, the doctor continues in a reassuring tone:

"But it's a kind that we can treat at home with antibiotics-- just make sure she rests. And keep giving her Tylenol for the fever-- it could take two to three days for the fever to resolve. She'll be fine... really."

Then, yet another fear begins to take hold.

"My 11-year old son has had a wet cough for a little over a week-- no fever, but he does have Type 1 diabetes, should I-"

"Contact his clinic and have him treated-- " the doc says quickly, "you don't want to take any chances with this. Oh- and how long have you had that cough?"

"Uh, well-- a little over two weeks, but- "

"It might be wise to go in yourself and get checked."

That was Thursday morning.

By Thursday night, Joseph and I had already taken our first dose of azithromycin.

In the meantime, Evan's fever has been relentless.

The worst?

Friday at 5:30 AM-- when it spiked to 104.8.


We were this close to taking her to the ER, but then her fever broke two hours later...

Only to climb back up to 102 by lunch time.

And while Evan has had these insanely high fevers, Joseph has struggled with low blood sugars-- this morning, afternoon and evening, he was:

54, 49 and 67.

Man...

Russian Roulette

Every time I step into a doctor's office these days-- whether it's about me or one of my kids -- it feels like I'm stuck playing this horrible game yet again.


A six-chambered cylinder -- loaded with one deadly (or potentially maiming) round -- is spun.

And the damn thing doesn't stop spinning for hours, days, weeks-- sometimes months.

Thankfully, the chamber has always been empty.

So, yes-- I win again.

Still have narrow angles.

Am still gonna need laser surgery at some point.

But-- there's no sign of any damage.

Visual field test-- perfect.

Corneal thickness test-- better than perfect.

People, I got me some mighty thick corneas -- which bodes extremely well for anyone at risk for any form of glaucoma.

What this all means is that we can rule out those scary, low-level narrow-angle attacks the doc was concerned I might be having.

(Thank. God.)

In the meantime -- though narrow -- I've still got a good amount of space:

On a scale of 1-4 (with 4 being "wide open" and 1 "needing surgery now") -- my angles are a whopping 2.

I wasn't exactly thrilled when the doc shared this rating with me-- but then she went on to describe the rather nasty sounding, four-tiered 0 to 1 scale...

So what's next?

We monitor it.

I go in at least once a year-- or if I experience any symptoms of an angle-closure attack.

Of course, I didn't leave this all sit without asking a boatload of questions-- ending my barrage with this one:

"If these were your eyes, and you got these test results-- would you just have the surgery?"

"Sandra, I'd wait. Though it's a pretty benign procedure, you likely won't need it for quite some time. Of course, as you get older and develop cateracts, your angles will certainly become more narrow, regardless-- simply because of the aging process."

"Cataracts? Wait-- I'm gonna get cataracts."

Eyes roll, a hint of a smile, and then:

"Sandra, everyone gets cataracts."

"Oh."

Okay, So Here's The Deal

First, sorry for the insanely late update, but a couple of other things -- extremely upsetting things -- kept me away from the blog.

And seriously upped my already through-the-roof stress level.

(More on those "other things" in a later post.)

So let's get down to it.

The eyes.

Well, there's no mistake-- I got me some narrow angles.

And yes, I will likely need to have laser surgery...

Late Tuesday afternoon, I'm sitting in yet another exam chair-- chin and forehead pressed into supports.

Trying hard to breathe.

While Eye Doc #2 looks at each eye through her microscope-like device.

"Sandra, did Doctor C use a goniolens during your exam last week?"

"Um, no- I don't think so," I tell her.

The doc turns to her technician-- "Is she still anesthetized?"

"She should be-- I checked her pressures just a few minutes ago."

Then the doc turns back to me.

"Sandra, I need you to bring your forehead right there, right up against the support."

"Oh," I say-- swallowing hard, and then leaning forward once again.

"Now I'm going to hold your right eye open," she says, as she puts her thumb and forefinger on my upper and lower lids.

" . . . and I'm going to place this lens on your eye."

She then pushes the wide end of a large circular lens against the front of my eye-- a bright light shines through it.

"Sandra, I need you to look straight ahead... just try to keep that eye looking straight ahead."

But I can't.

My eye is movin' all over the place, while my lids try mightily to expel this thing.

She attempts the other eye, but this one is worse-- because I feel a sharp pain as the "goniolens" is pressed firmly against it.

The doc moves her chair back, and for a moment, says nothing.

And then:

"Sandra you're awfully sensitive about your eyes, aren't you?"

"Oh yes."

"Now is this hurting at all?"

"Actually-- yes, it is."

She turns to the tech and asks her to put in more anesthetic drops-- which help a lot.

Because minutes (and much deep breathing) later, the test is done.

"Sandra, you do have narrow angles-- and you've been experiencing pain. The kind of pain that could be indicative of a narrow-angle closure attack."

"But my pressures are good," I remind her.

"Typically, the pressures would rise during an attack, and then return to normal after."

"Oh."

"Have you had any nausea or vomiting? Severe pain in the eyes?"

"No, just headaches and dull pain over the front of my eyes."

"Hmmm... what we could do today is dilate your pupils."

"Wait- what?"

One of the things I'd read -- both online and in the handout the technician gave me shortly before the doc joined us -- was that pupil dilation could trigger a narrow-angle closure attack.

Which in turn, could cause blindness in a matter of days-- even hours.

" . . . we would use a mild dilating solution-- one that would cause your eyes to dilate as if you were, say, in a movie theater.

"We could then see if your pressures increase in response to the dilation-- giving us a better idea of how soon you might need to have laser surgery."

"Wait, wait-- what if something happens? What if my pressures go up right now? What if I have an attack right now?"

"Then we'd give you medication to bring down the pressures-- and once back down, we'd do the surgery."

"I don't know," I say, shaking my head.

"I understand your trepidation, but dilating your pupils would also give me the chance to look at your optic nerve-- to see if there's evidence of an attack."

"But I thought that what was going on with my optic nerve wasn't related to these narrow angles."

"That's not necessarily true," the doc says.

We talk some more-- about the surgery, the risks...

And finally, I say:

"Let's just do it. If something's gonna happen I'd rather it be now than in a movie theater with my kids."

So the drops go in.

And I go out-- to a seat in the waiting area -- with a description of Laser Iridectomy and a consent form sitting on my lap.

Frozen.

For 30 minutes.

Until--

Nothing happens.

Yes, my pressures go up, but not dangerously so.

"Sandra," the doc says, as she looks at the back of my eye, "you do have some prominant cupping of your optic nerve."

"Is that what Doctor C was talking about when she said 'swelling'?" I ask.

"Yes."

She then pulls back her chair and says, "Let's get visual field and corneal thickness tests scheduled-- I'm pretty confident that you're not in any immediate danger of having an acute narrow-angle attack-- yes your angles are narrow, but there's still a good deal of space there.

"However," she goes on, "you could be experiencing something called chronic narrow-angle glaucoma."

"Chronic?"

"Yes, you could be having low-level attacks that may be causing damage-- " she says as she looks through my file, "now, it looks like optic nerve cupping was noted two years ago, and it looks a bit more pronounced than- "

"So do we just schedule the surgery then?" I ask, trying to stay calm.

"Sandra, you're really in the grey zone here. We could schedule the procedure, but because nothing looks imminent, I think we need to do more tests."

And I want to scream.

"I was just hoping to hear something definitive-- you know? One way or the other."

"I know-- sooner or later you may very well need the surgery-- because as you age, those angles will become even more narrow. We just need to determine how necessary it is for you to do it now."

And then she adds:

"You may even decide to do it sooner simply to avoid the stress of wondering if and when you might have an attack."

So, instead of waiting until late June, I'll be going back a week from next Thursday for more tests.

And if those tests aren't conclusive?

Well, I might still do this thing-- because walking around with the equivalent of some kind of time bomb sitting in my eyes going tick, tick, tick with each passing year is almost certainly more than I can handle.

I Hate The Drops

Yesterday morning.

Walking into my eye doctor appointment, I have only one concern-- getting out in time to pick up Evan from her preschool class at the Y.

So naturally, after taking a seat in the exam chair, I ask the technician:

"Do you need to dilate my pupils this visit?"

"Yes, we do."

Dang!

However, when I explain why I need to leave in an hour, she says:

"No problem, we'll have you done in plenty of time."

Fabulous.

Anyhow, after reading and reciting countless rows of letters-- both near and far away -- we discover that I need stronger prescription lenses (man, I'm getting old). And then, it's time for the drops.

I hate the drops.

(But I gotta say, it's a whole lot worse watching Joseph get them.)

We begin with the numbing solution-- so she can check my "eye pressures."

A seasoned pro, she squirts the stuff in both eyes so fast, I hardly know what's happening.

Then, picking up something that looks much like an oversized lancing device, she steps forward and "pokes" the thing at my right eye.

"Okay, let's do this again," she tells me, "and this time try not to hold your breath-- that increases the pressures."

"Oh-- huh. Well, uh... " I begin tentatively, not wanting to sound like a wimp. "What ever happened to the machine with the blue light?"

"Do you prefer that? Well, I think this is so much easier. You just have to relax and breathe."

Amazingly, I do-- and she gets the test done on the second try.

Next, she picks up a small dropper filled with the dilating solution, and before I can brace myself, the drops are in.

"Wow," I tell her with a smile, "you're good."

And now I'm alone.

Waiting for the eyes to dilate, thumbing through an old issue of Better Homes and Gardens, I sit and wonder how Evan is liking her new class, and how Joseph is doing on that spelling test I helped him prep for at breakfast.

Dr. C finally steps in.

We chat about the family, my eyes -- the whole time, I'm thinking:

Man, I wish she was a pediatric ophthalmologist-- Joseph would really like her.

Then she has me lean into the chin and forehead rests in front of me, as she looks into my dilated pupils.

She does this for a long time, saying nothing.

"Sandra, why don't you sit back. I'm going to take a look inside your eyes using this," she says, picking up a rectangular shaped device that's a little larger, but flatter than Joseph's insulin pump. She then pushes a button on the side of my chair-- causing it to rise a couple of feet.

Hmm... she's never done this before.

While holding the device close to my right eye (and shining its built-in beacon of a light into that eye), the doc has me look up, high to the right, down, etc... repeating the exam with the other eye.

Once finished, she lowers my chair, takes a seat herself, makes some notes-- and then begins rifling through my file.

"You came in last year, didn't you?" she asks-- obviously not finding the results from my previous appointment.

"Sure did," I tell her.

"Wait-- here we go," she says, holding up a piece of paper. For a few moments, she quietly studies its contents.

Finally, the doc turns to me, takes a breath and in a serious tone, asks:

"Sandra, is there any history of glaucoma in your family?"

"Excuse me? I- I don't know... why?"

"Now, this is probably nothing to worry about, but I'm seeing some optic nerve swelling."

"Oh."

That's all I can say.

"Sandra, I'd like to have you go upstairs and have a photo taken while your pupils are still dilated-- so we have a baseline.

"And then I want you to come back in three months-- I'd like to do a visual field test, and another dilated exam. Also, I think it might be a good idea to get a corneal thickness measurement. I'll write all of this down and you can make these appointments before you leave."

"Okay... "

She's writing, and I'm just staring at the back of her head.

"Dr. C-- " I say, finally thinking of a question, "which eye has the swelling?"

"Both of them."

"Oh."

I blink back a few tears.

"Now, Sandra," she begins, noting the look on my face, "I don't want you to worry-- I'd just rather be cautious than not. When you come back in, we can go over all of the results that day. In the meantime, try not to worry."

Swallowing down what little saliva I have left, I ask--

"If it's glaucoma, how is it treated?"

"You would have to use eye drops to keep the pressures down."

And then I don't ask her anything else.

Because I'm just too stunned to think of another question.

After getting the photos taken and scheduling my appointments, I quickly make my way out of the building, across the parking lot and into my car.

Thanks to those damn drops and the bright sun hitting my wide-open pupils, my eyes are killing me.

And my mind is racing.

Later, after talking on the phone with one of my sisters and asking her if there's any glaucoma in our family-- she calls back and says many wonderful, reassuring things.

She also tells me that one of my uncles may have had glaucoma. And my mother's mother.

And possibly, my dad's sister.

Man.

And Another Thing

"Hey, take a look at this," Joseph says, during the Packer game on Sunday.

Both Ryan and I turn away from the game and toward Joseph, who's leaning back on the couch-- the right half of his shirt pulled up, exposing his stomach and ribs on that side.

"See-- right here."

With his left hand, he's rubbing the bottom of his right rib cage. Then he removes his hand, takes a deep breath, and sure enough something is there-- a lump the size of a large marble.

I walk over and touch the lump gently with the tips of my index and middle fingers-- it's hard and movable.

And I have no idea what it is.

"Do you think I just have an extra bone?" Joseph asks, sounding almost hopeful.

"No, I doubt it, Honey," I say, shaking my head at him. "Does it hurt at all?"

"Nope."

"Well, I'm sure it's nothing to be worried about, but just the same I think I'll call your doctor tomorrow and see if he wants to have a look."

"It'd be kind of cool if I had an extra bone, you know?"

So I call his pediatrician's office the next morning and describe the lump to a nurse. She too has no idea what it could be, suggesting I bring him in on Wednesday.

And today, I find myself sitting with my kids in an examining room-- feeling as uneasy as I had over two years ago-- the day we discovered Joseph had diabetes.

"So how are you all doing?" asks Doctor E as he walks in the room.

"I'm good," says Joseph, "except I think I have an extra bone."

His doc laughs, saying "let me just take a look."

Joseph pulls up his shirt, and I watch as the doc pushes on the lower part of his rib cage, feeling the lump from a number of angles.

"Why don't you lie down on the examining table. I think I know what this is, but I want to get a better sense of this thing."

Joseph climbs up on the table, lies back and again, lifts his shirt.

After a few moments, the doctor turns to me.

"Well, I'm pretty sure that what we're seeing here is not really a lump-- it's actually the end of one of Joseph's ribs. It's something called a 'slipped rib'."

"Is this a common thing?" I ask, hoping he says "yes."

"No, not really."

"Oh."

"But I have seen it before." Then he turns back to Joseph. "Because you're young and still growing, the cartilage connecting your ribs is still very soft, making it easier for things to move around-- when you're older, this area becomes much harder-- more calcified."

"Should we be concerned about this?" I ask, holding my breath.

"Well, no-- "

Quietly, I exhale.

" -- unless, of course, the area becomes swollen. Then we would be concerned about a possible tumor."

I swallow hard.

"A tumor?"

"Mom, what's a 'tumor'? Can I tell everyone I might have a tumor?" Joseph asks, sounding a little nervous.

My head snaps toward my son.

"No, Joseph-- absolutely not."

"Okay, okay, " he says, laughing a little.

I turn back to the doctor.

"A tumor?" I ask again, weakly-- as tears crowd along my lower eyelids.

"Well, they're usually benign tumors made up of cartilage-- chondromas. But we'll want to keep an eye on this. I'd like to see Joseph again in about six weeks . . . "

I really wish he'd said 'benign' before he said 'tumor'.

"Hmm . . . I think I'd also like to get an x-ray today. Do you all have time?"

"Yes, yes. I have to bring him back to school right now, but we could come back after school, if that's all right?"

"That would be just fine. And I'll call you tomorrow morning to talk about the x-ray results."

So Joseph had the x-ray, and now it's just a matter of waiting for a call.

It's probably nothing. No big deal.

Just a benign something.

Though, a cursory Googling of "slipped rib" brings up descriptions of people in pain.

So really, until I know what this is, I need to stay the hell away from Google.

I just don't want him to have another thing.

Looking for Trouble?

Today I received a flyer announcing a screening for families of those with Type 1 diabetes. It takes place at Joseph's diabetes camp site on the day we arrive.

This Sunday.


After a couple of phone calls, I've confirmed that test results will not be shared with insurance companies. And, participants who test positive will be given the option to take part in diabetes prevention studies involving the use of immunosuppressants.

Ryan and I are thinking about doing the screening-- after all, anything that might help lend a better understanding of this disease is definitely worthwhile.

But what about Evan?


Here's where it gets hard.

You see, if they find out she's not making antibodies to her beta cells -- though a huge relief -- this doesn't mean she won't make antibodies in the future.

That possibility still exists.

And if she tests positive -- though she'll be at greater risk of developing the disease -- there is no guarantee that she'll actually become diabetic.

So, what happens if she tests positive?

I will lose it. Period.

Even if she never develops the disease, I'll always be petrified that she will.

Always waiting for that shoe to drop.

Now, would a positive result make us any more sensitive to the symptoms of diabetes than we are right now?

I can't imagine.

Would I want my toddler to participate in a prevention study that required her to take the same immunosuppressants given to transplant patients?

No. Absolutely not.

So is there a compelling reason for us to have Evan screened?

Any thoughts?

(Oh, and is it just me and my "fear filter," or does the TrialNet Wizard look as though he's wielding a sickle?)

Already Lost?

Spoiler alert: If you're looking for uplifting, this isn't the post...

Last week, I stumbled on a blog by a talented, intelligent writer.

A wife.

A mother of a child with a genetic syndrome.

A "tax-sucking civil servant leach" (her description, not mine).

A Canadian.

A woman who has had Type 1 diabetes for 13 years.

Though her blog has almost nothing to do with diabetes, I haven't been able to stop thinking about it. About her outlook on the disease:

That is the worst part of being diabetic, at least in the stage I'm in (what I sometimes refer to as "pre-disabled," since something like 90% of type 1s will eventually have complications). That you do everything right, you measure and say no and count and shoot and test and record, and it just doesn't work. That this "manageable" disease, this disease that can be "controlled," will not be controlled after all, no matter how hard you work. Like that woman I knew when I was pregnant, who despite excellent blood sugar control, still almost went blind while she was pregnant.

And on the effectiveness of an insulin pump:

At least having a pump is like having a slightly better weapon and a get-away car; I still know I'm going to lose someday, but hopefully a bit farther off and with less effort in the meantime.

But in some ways, I am already losing, and I know it.

I can't get this out of my head. I look at my son, and the thought that we've already lost.... yes, I know this is just one person's thoughts, but still.

Are we simply winning battles here, with no hope (short of a cure) of winning the war?

He's my child, and I cannot stop thinking about these words.



We can't be losing. We just can't.

Waiting

Remember this post.

Yeah, the one where I mention that Joseph hadn't really grown since his last endo visit. I was supposed to bring him in within a month for a first-thing-in-the-morning blood draw.

Well, I finally did it. Last week.

Why the hell did it take me so long? Me. The woman who tries desperately to be proactive in all of this. Who refuses to be blind-sided again.

I was scared.

There, I said it. Scared. Just waiting until the outer edge of that timeframe to have those tests done. Because, damn it, if there's something else going on I just don't know if I can handle it.

I don't know if he can.

So what's been going on? Well, we enjoyed the holidays.

And Joseph returned to school energized: playing soccer at recess; reading like a fiend for the school's upcoming "Book Bowl"; winning the first chess-club tournament; practicing cello every night; and beating his new Lego Star Wars video game.

While I've been hiding out from those tests and what they might say.

Did I mention that Joseph looks thinner to me? His collar bone more prominent?

That's how I knew before. When he became diabetic.

Maybe it is just the high sugars from a couple months back. He's had a lot of those more recently, too. Maybe it's just that "leveling off" that comes on the cusp of puberty -- as his endo suggested.

Maybe not.

Regardless, today I know his endo has the results on her desk -- waiting for her interpretation. That's what they told me yesterday when I called in a panic because it had been a week-- and nothing.

They told me that one of the tests took much longer than the rest, but it was now in there. Just sitting on her desk.

So today, we wait.

Losing It

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.

Up Again

It's 3:05 a.m. and I can't sleep. Joseph was high about two hours ago (247), and Ryan gave him a correction. I just checked him again, and he's 198.

Is this the way it's always gonna be? Night after night.

How is he going to deal with this on his own? It just paralyzes me sometimes. This fear of the future. The unending checks. I can do this. Ryan and I both can. But eventually, this will be his responsibility. To keep checking, correcting, checking, correcting...

I don't know. I'm just tired. And feeling kind of burned out.

This whole thing is just nuts. Why did this have to happen? Why him?

Joseph starts school again on Thursday. Already I'm worrying about his ride on the bus-- worrying that he might go low, and no one will notice. How will his new classmates react when they learn he has diabetes?

I'm just sick of it. Sick of this whole damnable disease.

It seems every day there is some horrible bit of news about a diabetes-related complication. Last night, Joseph was reading Diabetes & You, a magazine we picked up this week at a JDRF meeting. On the cover was a photo of a group of kids and the title, "Kids Speak Out." Sounded pretty good. But inside - among other horrors - Joseph found an advertisement for foot gel that pictured an insignificant looking foot wound-- a small cut, really. The ad's copy read "If you have diabetes, even a foot wound this small should be cause for alarm." And in bold blue letters, "If not properly treated, a diabetic foot wound can lead to amputation." Christ.

I don't want him thinking about ANY of that. He's just a kid. He doesn't need to go to bed in fear of losing one of his feet. It's wrong. This is so wrong.

Joseph is smart. He's a kind, sweet, funny, sometimes temperamental kid. Oh, and he's got the tenacity of a pit bull.

He doesn't deserve this.

No one does.

Paranoia

While the previous post gives you a sense of the events that book-ended my sisters' recent visit, I never did share the very personal hell I put myself through for two days in the middle of that oh-so-very stressful week. For it was during those two days that I noticed my 2 1/2 year-old daughter was drinking a lot.

Let me say that again. My youngest child was drinking A LOT.

She's still nursing (with so much focus on Joseph's diabetes care, weaning has been moved to the "things I'd like to do, but don't quite have the energy for" list). For two nights she was nursing every 1-2 hours-- which is not unusual while teething, except that she finished teething months ago. Further, during one afternoon she asked for water repeatedly-- at one point draining a sippy cup, then asking for more twice. Just two times. But that was two times more than she'd ever asked before.

Was this diabetes? Excessive thirst was certainly one of the symptoms. But she didn't seem to be urinating more than usual. Or maybe she was, and I just hadn't noticed.

Oh God. Not my little girl too.




The sibling of a diabetic child has a 5% risk of developing the disease. My sister's in-laws discovered that their 2 1/2 year old daughter was diabetic just two years after their son's diagnosis...

For nearly two days, while constantly on the verge of tears, I obsessed over the possibility of Evan becoming diabetic. I could hardly think straight.

Despite being petrified of what I might discover, I had to check her. I had to find out for sure what was going on. So later that second day, when we got back from Joseph's little league game -- four hours after we'd all had lunch -- I checked Evan's blood sugar. Not surprising, she was completely unafraid of the lancet. After all, she'd watched her brother use it countless times. She was actually quite happy to be getting a turn (as she put it). I set the lancet to it's lowest level, held my breath, then poked. Evan didn't even flinch-- just watched, fascinated, as I touched the tiny bubble of blood on her finger tip with the end of the test strip.

Her blood sugar was 132. In the normal range, but definitely high for so long after eating.

A few minutes later, barely holding it together, I shared my fears-- and Evan's sugar result-- with my sisters. And that was when my sister Marion reminded me that Evan had eaten a whole package of peanut butter crackers at the game.

I had completely forgotten this vital piece of information when I had checked her sugar.

So an hour later, I repeated the test. Her sugar was 82.

And her voracious thirst, which probably had more to do with the salty crackers, and two days of ungodly heat than anything else, subsided.

Though relieved that Evan was fine, I was still shaken for several days after-- making me realize that, among many other things, this disease has the capability of turning an otherwise rational human being into a bloody basket case.

Is the Honeymoon Over?

I don’t know. Joseph’s been running high for several days now– night and day. Mostly low to mid 200s. Corrections, set changes. Basal rate and bolus adjustments. Nothing seems to help. It’s possible he’s getting my chest cold (which really sucks– I’ve got an awful hacking cough, and depending on the listener’s age, my voice sounds like Lauren Bacall’s/ Brenda Vaccaro’s/Demi Moore’s).

Cold viruses have shot him up before.

So right now I'm waiting to do another blood sugar check. Joseph’s upstairs playing in his “world” which is comprised of many exciting imaginary figures who battle all manner of monsters. Lately, he’s been interested in learning how to play Dungeons and Dragons – reading the core rulebook, and acting out the part of the character he hopes to create: a half elf who possesses magical powers, and the ability to defeat any foe.

He was 497 when he called this morning from the nurse's office at school.

497.

He hasn’t been that high since diagnosis. God, maybe he really is coming out of the honeymoon. Why the hell does that bother me so much? It’ll probably make controlling his blood sugars so much easier. After all, there won’t be that “mystery dose” of insulin coming from his pancreas – the dose we can’t possibly factor into our calculations.

But just typing this right now has me crying. Why am I so attached to those stragglers? Those stubborn beta cells that didn’t die with the rest of them. I’ve told myself that it’s because a cure might be found that would require these cells. It’s possible. Taking in less insulin is better. And it is.

But truthfully, I don’t think I can give up on these cells because they are all that’s left of my pre-diabetic son. When they're gone, he'll have nothing in his body making insulin. Nothing at all.

I know. Joseph is the same amazing kid he was before all of this happened. He hasn’t become someone else. But the child who could eat what he wanted, when he wanted, without having to THINK about it, is gone. The child who didn’t have to have a cannula inserted into his belly or hip every 3 days. Who didn't have to carry emergency supplies wherever he went. Who didn't have to know when his blood sugar was dropping. And be afraid when it did. Who didn’t have to worry about being different in a way that few of his peers understand. The child who didn’t have to grow up so goddamn fast.
He’s gone.