An Early Present

Here we are coming to the end of the year, and what have I been doing?

Stressing about money.

Money for our property taxes, money for Joseph's orthodontia, miscellaneous medical bills, our insurance premiums, CHRISTMAS...

Money for a new insulin pump.

That's right, Joseph's current pump will soon be out of warranty-- and given our history, there's no way we can afford to be without a warranty. Thus, we have to choose a new pump and purchase it before the end of this month.

After much discussion -- and a brief look at the competition -- we've decided to stay with Animas.

Initially I had some reservations about this decision, but we have gotten excellent customer service and Joseph does indeed love his current pump.

And we're all very much intrigued by the new OneTouch Ping system.

This latest technology from Animas includes a glucose meter that is able to wirelessly communicate with the pump.

You can actually operate the pump from the meter.

What exactly does this mean?

Well, for us it means that when we check Joseph's blood sugar every two hours overnight and have to give him a correction when he's high or decrease his basal insulin when he's low, we won't have to:

• Pull back his blankets;
• Roll him over (if he happens to be lying on his pump case);
• Remove his pump while untangling his tubing (which always seems to be wrapped around the clip on his case);
• Give a bolus or change his basals while keeping one eye on the pump, the other on Joseph (because any sudden move can easily rip out his infusion set);
• Maneuver the pump back into it's case as Joseph flails about in his sleep and then rolls once again on top of said case.

Nope, we won't have to do any of the above.

Rock. On.

Ahhh, but there's more...

No, not about the Ping-- but rather, about paying for the Ping.

While we have insurance and have met our deductible for the year, unfortunately, we're still left with a 10% coinsurance payment.

Something like $660.

Uh huh, this is where the stress part comes in.

Or maybe not.

I got a call last Wednesday afternoon from Animas.

"Sandra, we're still waiting for prior authorization from your insurance company, however, we were able to verify your benefits. It looks like you have a 100% benefit."

"Excuse me?"

"A 100% benefit."

"Really?... Seriously?"

"Yes, you see- "

"But wait-- how can that be? Our insurance covers 90% once our deductible is met. I don't understand."

"Well, it looks like you've also met your family's annual out-of-pocket maximum."

"Holy Cripes! Then you are serious."

And now I'm up out of my chair.

"You've just given us an early Christmas present, you know that? This is AWESOME!!!"

The minute I hang up the phone, I'm punching in another number.

"Ryan? Honey, we're getting the Ping for Joseph-- and it's not gonna cost a thing! Can you believe it?!"

I still can't.

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.

His Voice

In honor of World Diabetes Day, and because this year's theme is again "Diabetes in Children and Adolescents," I'm going to step aside and let my son do the talking:

D-Blog Day

Back in 2005, when I wrote my first D-Blog Day post, I was a part of a small, but passionate group of people determined to tell our stories, to reach out-- to connect with others affected by diabetes.

And now, just three years later, we are hundreds strong-- and still growing.

Wow.

Sometimes it just blows me away, how rapidly this community has become a source of support for thousands.

A force for change for millions.

A group that continues to remind us all (on an ever-growing scale) that, as we struggle with everything this disease throws at us and our children, we are never alone.

I am humbled to be part of such an amazing, inspiring community.

You guys rock.

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.

Why Vote?

Please watch....



... and vote.

Let's Not Forget Diabetes Camp

Taking a seat in the common room, opposite Joseph's cabin nurse -- a woman with wavy brown hair who looks to be about my age -- I'm not nervous at all.

Determined, is more like it.

We start out talking about basal rates and insulin-to-carb ratios; corrections and the timing of set changes.

And then, I take a deep breath.

"Now, I'm sure you're aware that Joseph needs to be checked at both midnight and 2am. I spoke with the camp director about this a couple of months ago. Also, Joseph's endocrinologist sent a letter outlining the reasons why he needs to be checked... "

Her head tilts to one side; her mouth opens slightly.

And then-- a look of confusion.

"Did you see the letter from his doctor?" I ask.

"No, I didn't... but we can see how he's doing," she says with a pleasant smile, "I'm sure the camp doctor will be able to- "

"I'm afraid that's not gonna work-- you see, each of the last three years
I was assured that Joseph would be checked. And each year that hasn't happened. When I asked about this last year, I was told that the camp doctor overrode my son's doctor's orders because Joseph's blood sugars were 'in range' before he went to bed."

"Well, that's a good indication of- "

"No, I'm afraid it's not. At Joseph's last office visit his endocrinologist said specifically that if Joseph isn't checked overnight at camp he will have a seizure."

"I'm sure he would wake up- "

"Two nights ago, my son went to bed with an 'in-range' BG-- four hours later he was 52. We fed him glucose tablets and a snack-- he slept through it all."

"Oh... well that's... unusual. But I'm sure it's something he'll outgrow-- I mean once he's through puberty."

"I hope you're right-- but in the meantime, he needs to be checked."

An awkward silence, and then...

"Maybe you should speak with the camp doctor about this."

"I would absolutely love to speak with the camp doctor."

Minutes later, the endocrinologist responsible for the camp steps into the cabin. And before I can say anything, he tells me that the camp director spoke with him about Joseph earlier this morning.

"That's great," I say. And then I proceed to reiterate exactly why Joseph needs these overnight checks.

"We can certainly check him." he says. "A lot of parents make this request and it's just not necessary."

Huh.

"Can you tell me-- did you receive a letter from Joseph's doctor?" I ask him.

"No, I don't recall seeing one."

Hmmm.

"But testing his blood sugar shouldn't be a problem," the doc continues, "our people will be doing rounds at midnight and 2am anyway."

And with those words -- finally -- I know that Joseph will be okay.

Before leaving the room, I shake the doctor's hand-- and thank him and the nurse for helping to keep our son safe, emphasizing how much coming to this camp means to him.

I then make my way down down the hall to the next room-- where Ryan stands watching Joseph unpack his duffel.

Already the kid is yuckin' it up with his counselor and some of the other boys-- every once in a while looking over at the door to see if Tommy has arrived.

"Well-- he's all set," I tell Ryan.

He turns and gives me a questioning look-- to which I respond with a smile and a nod.

"Hey Bud," I call out, "we're leaving-- is that all right?"

"Yeah, sure-- I'll see you Friday," he calls back without looking up.

But immediately after we leave the room, Joseph leaps out into the hallway and gives us both a huge hug.

"Thanks, Bud," I say.

"Mom, this year's gonna be great, I just know it," he says with a grin that slays me.

"Oh yes, I know it too."

Getting Caught Up

So yes, I really am back.

Honest.

I'm just trying to figure out where to start.

You see, part of me feels that by writing about the present, I'm giving short shrift to the best summer we've had in years.

I never wrote about all the summer baseball-- or those 15 amazing days out east bonding with my siblings and their kids.

Or the swimming, fishing, and quirky fun we had in northern Wisconsin with friends.

I never even mentioned the wonderful (but way too short) visit from Zachary.

Soooo... in an effort to clear the deck, here's a three minute taste of what you missed:

Gone So Long

First.

I am so sorry to have left you all hanging-- we're here, and we're fine.

I think.

So much has happened since my last post, I don't quite know where to start.

I guess an explanation for the silence might be the best place.

Now, I could just say I haven't posted because we've been busy -- DANG busy -- with multiple trips out of town, beautiful weather, preparations for school...

All true.

But that's not the only thing that's kept me away.

Bottom line, I just couldn't bring myself to write.

And for a a while now, I didn't know why.

Until this morning -- after walking Evan to school (yes, you read that right-- Evan. To school.) -- I started thinking about the blog, and the word "fear" came to mind.

Why?

Because I haven't kept Joseph's blood sugars remotely stable all summer.

Because, as a result, his A1c jumped back up-- this time to its highest since diagnosis.

8.6

And finally, because I haven't had the strength to talk about it here.

It's ironic, really.

For despite a somewhat rocky start, this was probably the best summer we've had since Joseph's diagnosis: countless baseball games; trips to see family, friends; an amazing week of diabetes camp for Joseph, "Gramma" camp for Evan, and "Parent" camp for me and Ryan.

And through it all, Joseph grew. A lot.

(Criminy, he's almost as tall as me!)

But the fear, that all this fun was coming at a cost, also grew.

Don't get me wrong-- we didn't ignore the diabetes. No. We tried to get some semblance of control.

But it was impossible.

You see, it wasn't that we weren't logging, it was that so much changed so fast -- virtually day-to-day -- that we couldn't make sense of the data.

Well, summer's over.

Time to get back to work.

(And hopefully, back to the blog as well.)

Another Update

They're home.

Thank. God.

Half an hour before they got in, I called Ryan's cell phone yet again to see how close they were to home-- I was petrified because the news had said sections of I-94 between here and the Dells were closed due to flooding.

They'd warned that road conditions were "extremely dangerous."

Ryan's cell didn't answer, so I left a message.

I tried again.

Several times.

I called Joseph's cell phone.

Still no answer.

By the time they finally walked through the front door I was a basket case.

Apparently, Joseph's phone had died, and he'd been using Ryan's cell phone to take photos of the flooding they saw-- sections of the highway were literally under water.

Christ.

But they're home safe, and the tornado warning has finally been lifted (though we're still under a tornado "watch" until 2am).

It's storming like bejeezus out there-- heavy rain, thunder, lightning, the works.

But we're all fine.

And if I get the chance tomorrow, I'll share details of the actual field trip.

An Update

I'm sitting in my basement with Evan.

The tornado siren went off about 45 minutes ago; there've been at least three confirmed touch downs in the area.

Along with "hen's egg" sized hail, torrential rains, and 80 mile an hour winds.

According to the news, at least three more "tornadic" storm cells are heading toward us.

Right now, Ryan and Joseph are on the interstate just outside of the Dells -- driving less than five miles an hour -- heading right into this.

I can't even think straight.

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.

Random Stuff

Okay, seems I've been tagged for a meme by Penny and Lisa, and (as usual) am very late getting to it.

(Sorry, ladies.)

The rules are as follows:

I must write a post listing 10 weird, random, facts, habits or goals about myself then choose six people to be tagged, list their names and why I tagged them.

All righty, then-- here we go:

#1. I'm the last to finish eating at every meal-- even if I don't do any talking.

I eat that slow.

#2. One of my baby teeth didn't fall out until my senior year in high school.

#3. My idea of fun is working through some form of creative challenge.

Case in point:

A number of months ago, I read several books about HTML, XHTML and CSS, then created at least half a dozen Blogger blogs for the sole purpose of messin' with the template designs...

(Yee hah!)

#4. Even though I'm gonna have a ton more time for myself when Evan starts kindergarten in the fall, I'm already missing her...

#5. I never learned how to play a musical instrument... in an effort to rectify this, I'm in the process of teaching myself how to play the piano using the Sudnow Method.

(If you're ever out my way, just ask me to play "Misty" for you... )

#6. Though reasonably intelligent, I've been known to experience moments of extreme stupidity.

For example:

A few years ago -- while sitting upstairs nursing Evan -- I heard a loud siren. I remember thinking:

What an odd time for a drill.

No one downstairs had heard the siren (music was playing on the stereo at the time), and when I came down for dinner -- despite looking out the kitchen window and noticing that the the sky was an odd shade of green -- I didn't say anything about the siren I'd heard.

(I was pretty sleep deprived at the time-- Evan was teething, you see.)

Anyhow, minutes later I sat down to dinner with Ryan, one of my sisters, her husband and our kids.

The lights flickered off and on a few times as we ate; hard rain pounded the skylights above us-- and for a minute, we heard what sounded like a freight train rumbling past.

"It must be hail," I'd said.

Uh huh.

Less than an hour later, we discovered that a tornado had ripped through our neighborhood.



It had been on our street.



Just six houses from our own.



#7. I'm the only member of my very large family to move out of New England.

(And after the above experience, I've begun to question this decision.)

#8. June 5th was my 15-year wedding anniversary...


... August 23rd will mark the 22nd anniversary of the day Ryan and I met.

And, folks.

I am still crazy about the man.



#9. While writing is one of the most satisfying -- and at times, easiest -- things I do, settling down (both physically and mentally) to write is one of the hardest.

#10. Last year, a local ice cream shop introduced a flavor called "Hot Chocolate."

Deep, dark "Zanzibar" chocolate, laced with cayenne.

Can't. Stay. Away....

As far as tagging others, I'm so very late here that I'm gonna tag anyone who reads this and hasn't done it!

Three Months Later

Sitting next to Joseph on a bench painted like a black and white spotted cow, my mind is racing.

We've worked so hard... the testing, adjusting, the basal rate changes... so many long nights...

It has to have come down.

A knock at the door, and into the exam room steps a young woman with wavy blond hair and a slightly nervous smile.

A resident.

"Hello, Dr. C wanted me to meet with you before she comes in."

The resident takes a seat in the swivel chair opposite us and stares for a few moments at Joseph's file.

"Let's start with the basal rates-- what are they right now?"

Joseph leans back a little, pulls out his pump and gives her the numbers.

"Now," she continues, "do you correct a high blood sugar?"

Joseph and I look at each other.

"Umm, yes-- usually we do," I tell her. "Joseph's insulin sensitivity factor is 1:175-- we use that as a starting point and then adjust depending on activity level, insulin on board... "

The resident looks puzzled.

"What I mean is-- " she begins, shaking her head, "most families will do a correction starting at a blood glucose of 200, and then give a certain amount of insulin for every 50 points above that. So how much do you give him in that situation?"

And now I'm confused.

"It sounds like you're talking about a sliding scale-- we don't really use one. One unit of insulin typically brings his blood sugar down 175 points. So we calculate his correction based on that formula... "

I pause a moment-- suddenly annoyed by the woman's blank stare.

" ... but again, we only use this as a general guide, while taking many other factors into account-- like food, activity, insulin on board, and so on."

"Well, but you always correct a blood glucose over 200, right?"

"Again-- it depends. For example, if an hour earlier he was 300, then he's coming down pretty fast. In a situation like that, no-- we wouldn't do a correction. I guess what I'm trying to say is that there are no hard and fast rules here-- there are just too many factors."

She pauses, clearly frustrated with my answers.

"Do you have diabetes?" Joseph asks her.

I shoot him a look.

"Uh, no-- no, I don't."

After taking a cursory look at Joseph's sites, she finally leaves the room.

"Well that was weird," Joseph says. "Why do they send in people who don't really know what they're talking about?"

Stifling my own frustration, I take a breath before answering.

"Well, Bud-- I'm sure that's why they do it. It's probably the best way for new doctors to learn."

Just then, there's another knock at the door, and in walks Joseph's endocrinologist.

For a split second, my stomach is a mad frenzy of butterflies.

"I am so pleased," she says with a broad smile.

"Joseph you're doing beautifully. You're growth is perfect. You're all doing a wonderful job!"

I look at her, hopefully-- willing her to go on.

As if reading my mind, she nods-- still smiling.

" ... and yes, the A1c fell-- from 8.5 to 7.9."

With those words, Joseph jumps up and flings his arms around his endo.

Sitting still, so relieved-- I watch the two of them celebrate.

No more butterflies.

Just a huge lump at the back of my throat, and two eyes clouded with tears.

Holy Cow!

Yesterday it dawned on me that I hadn't posted in three weeks.

Yikers!

What the heck's goin' on over here?

Well, the short answer is:

We've been outside.

The slightly longer answer...

I've been mulching and tending to my garden; Joseph started baseball-- and is again a pitching monster; Evan learned how to pump her legs and swing (a moment of pure joy, by the way), and we've been playing a lot of one-on-one basketball-- day and night.

I'm not really any good, but it's a lot of fun...

Oh yes, and two weekends ago-- Joseph's "brother" Zachary spent one night with us.

It was wonderful and hard, all at once (a post on that visit is in progress.)

Since this entry is a little thin on details, I'm filling it in with some images...

Enjoy!




(Coming soon on the diabetes front: News about next week's endo visit and an update on Joseph's 504.)

Still Another Voice

For more than three years I've posted about our experience living with Type 1 diabetes.

About the incessant highs, the dangerous lows; about the long nights and the early mornings.

And I've come clean about the fear.

Today, I'm just tired-- and more than a little hoarse.

Even so, today is too important a day not to post.

Because the voices of those living with Type 1 diabetes far too often go unheard-- drowned out by the cacophony of misperceptions coming from the media, from those who once had an Aunt or Uncle or Grandfather with Type 2.

From folks who think they know.

Or worse-- don't care to learn.

It's maddening, really.

When so many around you have no clue about something that has such a profound impact on every aspect of your child's life.

Something that could kill him.

So today we're all raising our voices about Type 1 diabetes.

A disease with no cure.

A disease that requires insulin injections or boluses, careful monitoring and emergency preparedness.

Each and every day.

With all my heart, I hope people are listening.

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.

My Six Word Memoir

         Joy

           Pain

            Confusion

               Understanding

                  Determination

Repeat.

----------------------------------------------------------------------------

Thanks to Nicole for the tag.

Rules for this interesting little meme are as follows:

1) Write your own six word memoir;
2) Post it on your blog and include a visual illustration if you’d like;
3) Link to the person that tagged you in your post, and to the original post if possible so we can track it as it travels across the blogosphere;
4) Tag at least five more blogs with links; and
5) Don’t forget to leave a comment on the tagged blogs with an invitation to play!

Since I'm so late to this one, I'm tagging anyone else who'd like to give it a go.

Pondering the Blog

Today marks the beginning of my fourth year as a diabetes blogger.

In my very first post, I said that it was "liberating to think that I could write something here that might help someone out."

Three years later, and I still feel exactly the same.

And more.

Because soon after writing that first entry, I learned that blogging could open the door to both giving and receiving a tremendous amount of support.

I also wrote that blogging would "allow me to unload some of the vast amounts of frustration, information and heartache" that had piled up "since my [then] 9-year old son's diagnosis."

While this site has indeed allowed me to do just that-- I have to say, the unloading part has become a lot more complicated of late.

Think about it.

My son is now 12-years old-- an age when many of his peers have access to the web.

What would happen if any of them found this site?

Now, don't misunderstand. Joseph is still supportive of me doing this-- is still fond of saying, "Mom, you should put this on your blog."

Even so, I can feel myself holding back.

And I hate it.

Because rather than letting loose -- unloading -- I find myself "knapsacking."

Hauling around stories until the weight of them almost makes me scream.

(Perhaps if I'd started this site anonymously, it would be different.)

Is there a way to balance what I post here with a respect for my son's privacy?

Any thoughts?

Anyone else grappling with this issue?

"Don't Be Afraid"

She's smiling.

Which seems a little surprising-- given the number handwritten in black ink on that sheet of paper sitting on her desk.

"Joseph, you've gotten so big!" she says enthusiastically, "I wonder if you can you see over my head now?"

Immediately, my son leaps out of his chair.

Standing directly in front of her, it's clear that Joseph is now several inches taller than his endocrinologist.

"Oh my!" she says, red-faced and laughing. "I think we can safely say you've begun the adolescent growth spurt."

With these words, Joseph throws his arms around his endo -- giving her a huge bear hug -- then, grinning, returns to the seat next to mine.

He's growing. That's the most important thing.

I tell myself this over and over while smiling at the two of them.

But then my eyes wander back to that sheet of paper.

To that number.

"Yes," she says with a nod, "we did see an increase in the A1c."

Joseph's head snaps up.

"From 8 to 8.5."

And now the only one smiling is Joseph's doctor.

"I'm not worried about this," she says, noting our somber expressions.

"A number of things are going on here. First, it's obvious that Joseph saw periods of rapid growth since his last appointment. This is probably the most significant factor."

She pauses a moment, thumbs through Joseph logbook, and then continues.

"Now, according to the log, you had a problem several weeks ago with a leaking cartridge..."

"That's right," I say, remembering that awful night.

Blood sugars in the 400s, followed by corrections that had no effect-- injections, a site change...

And finally, the anger and shock at finding his meal and corrective insulin clinging to the sides of a soaking wet, almost empty pump cartridge.

Our son hit a diabetes milestone that night-- moderate ketones.

"Keep in mind," the doctor continues, "blood glucose over the last month will have a greater impact on the A1c-- so this 8.5 is partly due to that incident."

Joseph says nothing, but listens intently.

"So what can we do?" I ask.

"You increased Joseph's basal rates three weeks ago-- and those new rates worked well for a while, but the highs are returning. So I've raised them again-- overnight and early in the morning. That should help."

She hands me the sheet of paper with Joseph's new rates-- and his A1c.

"Understand," the endo goes on, "you're probably going to need to increase his basals every two weeks."

And now my head snaps up.

"Don't be afraid. You need to do this, Sandra."

"But every two weeks- "

"He's going to need a lot more insulin now that it's clear he's entered puberty in earnest. And the amount he'll need is going to keep changing as he grows."

I know she's right.

The ridiculously frequent, insulin-resistant highs we've seen over the last three months made that perfectly clear.

Walking out of the clinic an hour later, carrying his new basal rates -- and the weight of that number -- I can still hear her voice.

"Don't be afraid."

But, I am afraid.

Not of making changes, nor of working harder.

No.

I'm afraid of that damn number.

I'm afraid of what it means might be happening inside my son's body.

I'm afraid that -- no matter how hard we try -- it won't be enough.

Middle-School Popular

My favorite table in any restaurant is one by a window.

So I'm glad when Joseph nabs the lone window seat in our favorite bakery.

Minutes after settling in, I glance outside at the snow and ice-covered parking lot -- through glass streaked with condensation -- and then immediately take another long sip of my very hot tea.

Meanwhile, Joseph -- hands wrapped around a mug of hot chocolate -- continues telling me about school.

"... so yeah, the popular kids can be ridiculous sometimes."

I look at him a second before responding-- to see if he's trying to be funny.

"Wait a minute, Bud. I thought you were pretty popular-- at least that's what your teachers tell me."

"No," he says firmly, "I'm not popular-- I just know everyone."

I flash him an amused grin.

"Hmmm... I see."

He shoots me a more-than-slightly irritated look.

"Seriously, Mom-- I really don't want to be popular."

"How come?"

"Well... " he says, thinking a moment before going on, "because then everything just gets so complicated."

"In what way?"

"Like my friend K-- he's really popular. And so is D... "

"Yeah-- so?"

"Well, today they wore the same jeans to school, and they got all freaked out about it. And some girls started talking about it-- like it was this big deal. I don't want to have to worry about stuff like that. It's just stupid."

"Sounds kind of stupid to me too."

"And the popular kids don't talk to everyone. Like this kid, M-- they all ignore him. Sure, about sixty percent of the time he can be annoying, but the rest of the time he's really a nice kid."

Joseph pauses a second, takes a long drink of hot chocolate, and then continues:

"I mean, yeah, I slugged M that one time on the sled hill when he was picking on P, but he doesn't usually do stuff like that."

"Oh, well that's good."

"So, no-- I don't want to be popular."

"All right, Bud," I say with a respectful nod.

"I'm sorry I suggested you were."

A Mystery

My daughter is not a closed kid.

On the contrary, Evan is pretty darn good at sharing her emotions, her ideas-- often in amazing detail.

But.

There are these times -- for about an hour on most days -- when she wants to be by herself.

"To do a story," as she puts it.

Sometimes these stories involve costume changes, elaborate sets and many props.

But more often she'll just sit, still and quiet -- as though in a trance -- behind the couch, or on the far side of her bedroom.

"What are you thinking about?" I'll ask her.

And nine times out of ten -- in a tone of quiet determination -- she'll give the same response.

"I'm not telling you."

I remember the first time I found her "doing a story."

She was only a year and a half.

It was late in the day. We'd just finished reading a stack of Dr. Seuss books when I realized I had to start working on dinner. So I left her sitting in the middle of the living room floor, looking intently at "Oh, the Places You'll Go!"-- while I went into the kitchen to chop vegetables.

Several minutes later, I found my little girl lying on the floor behind the couch.

Not making a sound.

At first I thought it was kind of weird that she'd gone back there and fallen asleep.

Until -- with a start -- I saw that her eyes were wide open.

"Sweetie, what are you doing?

And in her tiny toddler voice, she said:

"I'm not telling you."

Staring down at my girl -- flat on her back, looking serious as all get out -- I didn't quite know what to make of her.

It just seemed so strange.

After shaking off this initial reaction, I came to the conclusion that my daughter simply has one powerful imagination.

Sure, it sometimes bothers me-- that she keeps secrets this early.

But since she's not a secretive kid in general, I'm thinking it's okay for her to keep these stories -- this inner world -- to herself.

And then too, it makes me appreciate the rare glimpse into that inner world all the more.

Ice

It's everywhere.

Slick and black under snow-covered streets. Dangling precariously from countless eves.

Glittering on every branch, on every trunk of every tree.

Like jewels.





And the sound.

With each gust -- each movement of those ice-covered limbs -- comes an unexpected, vaguely familiar sound.



"Snap, crackle, pop..."

That's right.

Exactly like Rice Krispies.

(A very big bowl of Rice Krispies.)

The storm that brought all of this ice hit early Sunday morning-- hard sleet for many hours, before changing over to snow.

We lost power for 12 of those hours.

Doesn't sound like much fun, now does it?

Well, for a while there-- it wasn't.

Until I found a neighbor with a working refrigerator.

A place for Joseph's insulin.

After that, the whole thing was as an adventure.

We read by candlelight-- and listened to Barack Obama's voice coming from a tiny yellow radio.

We sat by the fire and watched logs burn a bit faster than we'd like.


Using every blanket in the house, we camped out in the living room-- and hoped the power would return before morning.

Thankfully, it did.

But the ice that brought down power lines across our city never left.

Because -- despite a glorious amount of sunshine and blue skies -- there's been no melting.

Yesterday, I walked into the kitchen and found Evan sitting Indian-style in the middle of the floor-- staring wide-eyed and silent at the window over the sink.

I crouched down beside her and laid a hand on her shoulder.

"What are you doing, Honey?"

"Mama," she said dreamily -- eyes never leaving that window --
"the tree... it's so sparkly... it's beautiful... "


I sat down next to her, held her hand-- and looked, too.

"It sure is, Honey."

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.

Last Week

Evan was sick.

Again.

She had the awful, fever-inducing, hacking-cough virus that's been spreading amongst the pre-school set like wildfire.

Poor kid stayed home all week.

Thus, so did I.

Yeah.

I must say it was a bit too quiet around here (except for all the coughing and nose-blowing, that is) until Wednesday -- when a blizzard pounded our city, dropping an ungodly amount of snow:


Mid-afternoon Wednesday-- the view looking up the street from my front window.


Late in the day, my next door neighbor shovels while the snow keeps coming...

Now, along with all that blowing and drifting snow came something else.

Something quite wonderful.

"It's a SNOW DAY!" Joseph shouted, leaping in the air upon hearing the news at 6 AM Wednesday morning.

"AWESOME!!"

A momentary pause.

A tilt of the head.

A smile.

And then:

"I'm goin' back to bed."

Funny how priorities change when you're in middle school.

But then, it's also funny how some things haven't changed at all:


My well-rested son puts the finishing touches on the fort's interior.


Joseph and his trusty assistant enjoying the fruits of their labor.


Even Tim couldn't resist the lure of a snow-day fort.

The four of us spent the rest of that morning and a good part of the afternoon lying inside the fort reading books by the likes of Patricia Polacco and Dick King-Smith.

Later, making up some stories of our own.

More Hardware

Anyone recall this post?

The one in which I share the news that (according to Joseph's orthodontist) my son will likely need major corrective surgery on his jaw at around age twenty.

Well.

After having detailed records taken -- x-rays, photos, molds of his teeth -- and meeting with two orthodontists, we discovered there's a good chance Joseph will not need surgery down the road.

(Thank. God.)

However...

Joseph does need some (rather expensive) orthodontic work.



And he needs this work to begin ASAP.

Starting with this:



It's called a "palate expander."

(Though to me it looks more like some sort of medieval torture device.)

What does this thing do?

Exactly what the name implies-- it expands the upper jaw.

And it does so via the turning of a metal "key" (my job, once the hardware has been installed in my son's mouth).

Lovely.

After turning said key once a day for approximately four weeks, the expander simply stays put for another three to six months-- and is then replaced by a retainer that will be "cemented" to the roof of Joseph's mouth for another eight months.

Did I mention the head gear?

Oh yes, there will be head gear.



This hockey-mask-like thing will have to be worn every night (for at least 10 hours)-- attached via rubber bands to the expander, and then eventually to the retainer.

Needless to say, Joseph is not pleased.

And he hasn't even heard details about Phase II.

You see, the orthodontists tell us that our son is "an interesting case": he has a pronounced cross bite; a bit too much space between several teeth; and top molars that line up a full tooth behind the corresponding bottom ones-- yet "surprisingly, he doesn't have that 'Jay Leno' profile."

As a result of these anomalies, braces will follow.

And -- to avoid creating more/larger gaps -- so-called "mini screws" will likely be drilled into the bones above his eye teeth (by an oral surgeon) in order to anchor the braces.

Joseph will need to wear this apparatus for at least two years.

(And I was worried about the invasiveness of a CGMS.)

Oh, and my God-- the cost.

We're talking all told, over $6,000.

To be honest, when I first saw this figure I thought the whole thing was hopeless.

However, we do have a dental insurance lifetime benefit of $1,000 (I know-- seems like a drop in the bucket, but it helps), and the orthodontist offers a no-interest payment plan.

Also, by the time we reach the more costly Phase II, Evan will be in elementary school-- so I'll be in a position to work at least part time.

I just have to believe the money part will be OK.

And hope to high heaven that the actual wearing of all this new hardware will be OK for Joseph as well.

The Long (Cold) Silence

For nearly three weeks, we've hunkered down.

First there was the thaw that transformed our local sled hills into slush hills-- and came darn close to leveling our backyard "luge."

Immediately following the thaw came a blast of arctic air-- bringing with it many days of brutal, sub-zero temperatures.

And more snow.

A lot more snow.

But sadly, it's been too dang cold to sled.

Too cold to do anything outside.

Except maybe shovel the now useless (as in "non-packing, no good for making snow forts, snow balls or snowmen") powder.

Oh, and it's snowing again-- right now, as I type.



So yes, we're still here-- shivering a good deal of the time, but here.

Hanging onto the weatherman's promise of double-digit temps this weekend...

A Belated Post

Happy New Year!

(And a very late Merry Christmas!)

And to the many folks who commented on my previous entry:

Thank you.

Your kind thoughts and wonderful suggestions meant a great deal to all of us.

Just looking across the street, at that empty house, still hurts.

But the holidays -- along with record snow fall -- have given us some wonderful distractions.

There's been much visiting with friends-- and playing with some really cool Christmas gifts (Joseph's big surprise was a PS2 from Gramma; Evan's was a "Plasma Car" from one of my sisters).

Oh yes, and there's been sledding.

A lot of sledding.

In fact, not only did we hit the big sled hill in our neighborhood almost every day last week-- but, because Ryan got the (inspired) idea to build a mini sled hill in our backyard, we're having more winter fun than a family has a right to.

See for yourselves...