Seriously, it's been mostly good

After writing my last post, I felt a whole heck of lot better. I needed to talk about what happened that day-- and wanted anyone reading to be aware of how quickly ketones can get out of control.

And to be prepared if they do.

Well, this post illustrates the flip side-- our norm this summer (vs the craziness of last Tuesday).

A summer filled with drama (the stage variety, that is), swimming, and baseball.

Oh so very much baseball.

While Evan was busy discovering her inner Sarah Bernhardt, Joseph came into his own at the plate, batting over 300 in the regular season and making the All Star team yet again.


He's come a long way... remember this little guy.

This season Joseph continued to thrive on the mound, pitching in both regular season and All Star tournments, but also playing other positions-- including catcher (despite being a lefty!).

And diabetes?

Well, it dished out plenty of highs and lows-- but mostly, it stayed out of Joseph's way.

Soooo, here now is a 3 minute taste of it all...

Enjoy!

Some of what you've missed

The kids are on spring break this week.

And sadly, all of Joseph's friends are out of town, making for a somewhat quiet few days.

To remedy this situation, we're heading out tomorrow for an impromptu visit to Chicago. Three days of traipsing around our old neighborhood, of taking in some sights... Millennium Park, the Art Institute, the Lincoln Park Zoo. Oh yes, and eating awesome Thai food, maybe some sushi.

It's gonna be great.

Now, while I'm here... I realize my posting has fallen way the heck off. And I'm sorry.

Really.

I can't make any promises, but if you're still out there reading, I will try to post more often.

In the meantime, a few short updates:

The shoulder is better -- much better. Not a hundred percent, but I made about 20 "backboard shots" playing one-on-one with Joseph on our driveway yesterday.

So, yeah.

The job has been crazy, but still pretty great.

Parenting a teenager has been a learning experience for us all. Sometimes it feels like I'm parenting two teenagers, Evan is just that savvy.

And then there's the diabetes.

Still there, still throwing us curves every once in a while. But (thankfully) nothing like it did this past fall.

Joseph continues to take ownership of more and more of his diabetes management. Last night, for example, when he finished eating a big plate of pesto pasta, he got up and cleared his plate while Ryan, Evan and I were all still eating. I turned to remind him to bolus, but before the words got out of my mouth, I saw him leaning over the kitchen counter, diabetes supplies laid out in front of him.

"What are you doing, Bud?"

"Oh, it's a set change day... I'm just gonna put in a new set before I bolus."

"Good thinking, Bud-- nice job."

"Mom, I'm getting pretty good at this stuff, you know."

"Yes, you are," I said. "And I'm getting pretty good at sitting on my hands."

At that, his head came right up-- and then, flashing me that wonderful grin of his:

"Yes-- yes, you are."

To fill in still more gaps, I thought I'd share some images/a bit of video footage from this fall and winter -- for example, giving you all a glimpse of what the kids wore on Halloween, a peek at some night sledding on this year's backyard hill, my fabulous makeover... and really, just how much the kids have grown over the last six months.

Enjoy!

Growing Pain

Over the last four years I've received messages from readers telling me how we're doing a "beautiful job" helping Joseph manage his diabetes and that I'm an "amazing" mom.

Well at the beginning of last month, I felt about as far from amazing as any mom could get — and even now, I'm still a little shaky.

You see, Joseph was sneaking food, treats mostly — but worse, he wasn't bolusing for them.

When I first found out that he wasn't being truthful with us, it hurt.

A lot.

But the not bolusing, well that just froze me in my tracks.

For several days and nights after I realized what was going on, I couldn't think of anything but what this might do to him in the long run — not just the effects of the high blood sugars, but the habit he seemed to be falling into.

And desperately, I wondered why?

We'd always worked together on this stuff, but now...

It started with small things, a candy wrapper in his room, a number of unexpected high blood sugars... coming to a head just after Halloween — when we left a bright red plastic bag filled with nearly 4 lbs of candy sitting on our kitchen counter.

(Stupid to have left this out, I know.)

Within a few days the bag weighed considerably less.

I discovered this after yet another argument with Joseph about him having eaten a snack without bolusing — this time, a chocolate chip granola bar.

His blood sugar was 404.

I asked him why he hadn't bolused.

"I don't know," he said turning away from me.

I got upset, choking out that I didn't want him to hurt himself. That if he gets in the habit of eating without insulin, he could set himself up for other health problems — serious health problems...

And when it seemed like he was tuning me out, "... some people have lost their sight because they ignored their diabetes, because they didn't take care of themselves."

Immediately, I wanted to take it back.

"Wait, Bud- "

But he was already halfway up the stairs, heading to his room.

Shaken, I returned to the kitchen to start making dinner. To calm down. That's when I noticed that red bag on the counter next to the stove, and — looking at it closely for the first time in a few days — saw the empty wrappers sticking out of the top of it. I opened it wider, and there were piles of them.

Oh no.

"Joseph," I called up the stairs, "was that granola bar the only thing you ate?"

No answer.

"Joseph— please, come downstairs."

A moment later he walked slowly into the kitchen wearing an inscrutable expression, then his eyes traveled to the red bag on the counter.

"No, I had a mini Snickers too."

"But why, Bud? It can't feel good to be high... if you eat something, please, you have to bolus for it."

"Yeah, I know." That's all he said.

The next afternoon, when he arrived home from school, I asked Joseph to sit down with me on the couch in our lower level. To talk.

"What's really going on, Bud?"

"I don't know... it's just hard having diabetes... I mean, no one else has to think about this stuff, they just eat what they want when they want. You know what B told me on the phone last night? He has his Halloween bag under his bed, his parents have no idea it's there... "

"But Honey- "

" ... and when I see your face when I have a high blood sugar, I just feel bad."

"Bud, I- I'm sorry. I don't know what to say... If I look upset when you're high, it's not you... I'm not angry or disappointed in you, I'm just worried about the high. I'm sorry that I made you feel like that. No matter what we do, there are always gonna be highs, lows — we can't make this perfect. Nothing is perfect."

"I know, I just hate having this," he said, his voice catching — and then he looked down at his hands for a few seconds before going on, "and please Mom, please don't say I'm gonna go blind."

Looking up at me, eyes wet with tears, he suddenly looked very young.

I put my arms around him— my own tears dripping down onto his shoulder as I held him close.

"I'm sorry, Bud — that was a horrible thing to say. I was so desperate to get through to you. I don't want to scare you, I just want you to take care of yourself. Listen, we are going to figure this out, I promise."

For a moment, we just sat there and said nothing.

Finally, we both stood up. "Hey, I'm hungry," he said. Then, without missing a beat, he pulled out his meter and pricked a heavily calloused finger.

"189... I can wait until dinner."

"No, Bud - go eat something now if you're hungry, just bolus for it."

"Okay," he said, "I'll have a banana," and he ran up the stairs taking two at a time.

Later, with the rich smell of ratatouille filling the kitchen, I called upstairs to the kids, telling them dinner will be ready soon, giving them the 10-minute warning. Evan clomped heavily down the stairs, shuffled into the kitchen and grudgingly agreed to try the ratatouille, but insisted that she "hates" polenta.

Shaking my head, I handed her some utensils to put on the table.

"Bud, can you do a check?" I said to Joseph, while pulling four white plates out of the cupboard.

He's 249.

"Hey, did you bolus for that banana?"

"Yes," he said, "two units." Then he filled several glasses with lime fizzy water, placed them on the table, and headed back up to his room.

A few minutes later, while standing next to Ryan at the stove, I noticed something on the floor in a corner of the kitchen— a large, empty, silver can.

And immediately I knew. Because Ryan's mom had called me earlier that day to ask if she should bring more cookies when she comes down in a couple of weeks. I'd checked that can and told her "yes" — because there was one cookie left.

I walked upstairs, knocked on Joseph's bedroom door and just asked him.

"Yeah, I had one," he said without looking up.

"When you had the banana?"

"Yeah."

"And you didn't bolus for it."

"No, I didn't," he said quietly.

"But, why?" I asked, desperate for an answer.

"Because I knew you wouldn't want me to have one. That you'd rather I made a healthy choice."

"Bud, even if you didn't have diabetes, I'd encourage you to eat healthy — that's what Mom's do — it's the not bolusing that really scares me."

Then I turned around, and walked back down the stairs, a massive lump sticking at the back of my throat.

I don't understand — he can have treats . . . when we have dessert, he has dessert; when he wants to go get ice cream with his friends, I let him...

His last A1c was 8.7

It's been creeping up again, thanks to many unexplained highs— highs I thought were due to the hormones of a growing teen (and maybe that's at least partly true), but now I don't know.

Joseph and I have always been able to talk about things, about almost anything, really. But lately, we've been arguing a ton.

I don't know what to do.

********************************************************

I wrote much of this post about three weeks ago — since then, I've done a good deal of crying and a lot of thinking. I've also gone online and — among other things — read this thread on tudiabetes.org. I discovered that what we've been going through is fairly common.

Just knowing we weren't alone gave me strength — and made me believe that we could get through this.

It took a lot more talking — and far more listening — before it finally hit me:

Joseph's sneaking food and not bolusing for it may have had less to do with deprivation than it did with him needing more independence.

(Yes, I realize to some this may sound counterintuitive, but hear me out.)

I honestly believe that by making choices he knew I wouldn't like, by not bolusing, he was struggling with us — with me — to "take the wheel." To show us that if we continue to drive this thing and not trust him to do it, we are going to crash.

He's going to crash.

(Does this make any sense?)

Joseph knows more about nutrition than most people and eats healthy food at home; he knows how to count carbs and how to bolus for food better than we do.

He has a good foundation.

Now, while we've let him eat like a kid and, more recently, like a teenager, he's always asked or sent a text to one of us when he's going to eat a snack, with carbs and a bolus calculation — and for a long while now, 99.9% of the time we text or say "go for it."

And I think it's that routine that needed to change.

Sooo...

Two weeks ago, I went up to his room, sat down next to him on the edge of his bed and took a deep breath.

"Bud, how would you feel about eating snacks and not calling or texting me about them? About coming home from school and getting something out of the pantry without checking with me or Dad first?

Still checking your blood sugar and bolusing, but not checking with us?"

His face lights up.

"Really?"

"Yes, really. Bud, I've been stupid. I should have done this a long time ago. You know, when I was your age I used to eat these things called "Hot Fries"... Andy Capp's Hot Fries. Never asked my mom, I just walked down to Prevites Market, bought a bag and ate them. And I loved Nestle Crunch bars, too. Now don't get me wrong," I add quickly, "I didn't sit down and eat masses of them, but I ate treats when I was a teenager. And I didn't ask for anyone's permission to do it... I want you to be able to do that too."

I'm about to say more, but I can't — because Joseph has me in a bear hug.

"Mom, I love you," he says, holding me tight, "and I'm sorry about not bolusing. I'm really, really sorry."

Then he pulls away from me, suddenly looking much older.

"I can do this, Mom."

And for the first time in weeks, I feel like I've done the right thing.

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.

"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.

Our Wishes

"Hey, I call the wishbone!" Joseph announces-- before anyone takes their first bite of turkey.

And then a little more tentatively, "Is that okay?"

Everyone is smiling-- and no one objects.

"Sure," I tell him, "but only if I get a shot at it too."

"Mom," he says, eyes rolling, "you'll just wish for a cure for diabetes."

We all look at him.

"I can live with diabetes," he continues, laughing. "No. I'm wishing I have a good regionals on Saturday."

"Joseph-- a card tournament?"

"Oh, yeah," he says, beaming.

I pick up my wine glass, take a sip of Cabernet, and remember something that happened only two weeks before...

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

We'd just left his endo appointment-- our first in the new clinic building.

Though Joseph's A1c had gone down (from 8.1 to 8), I was really hoping it would have gone down further.

That we'd have gotten it below 8.

Standing in the elevator, I kept hearing his doctor's reassuring words:

"Yes, we want him in the 7s, but this is still good-- most kids we see in middle school move up into the 9s, sometimes higher. And Sandra, his growth is excellent."

His growth is excellent. His growth is excel-

"How about McDonald's?" Joseph broke in.

"Huh? For lunch? Ahhh... no."

For the next few minutes, we talked about food options while making our way down several long, shiny new corridors, on and off yet another elevator...

And that was when everything around us began to look less new-- and uncomfortably familiar.

We'd taken a wrong turn.

And just like that, we were standing in front of a fountain I hadn't seen in over three years.

A wall of large, rough-hewed stones-- water, pouring in ripples over the face of it.

And at its base-- a shallow pool, littered with coins.

We're back. In the hospital-- just outside the cafeteria.

The conversations with Ryan, the crying-- the desperate throwing of every piece of change I had into that pool.

The wishing.

The praying.

It all came back in waves.

For a moment, all I could do was look at the thing.

And then -- stubbornly -- I walked forward, shoved a hand into my right coat pocket, pulled out two coins-- and handed one to Joseph.

"Here you go, Bud-- make a wish."

He paused, holding the quarter for about two seconds while looking thoughtfully at the falling water-- and then dropped his coin into the pool.

"Your turn, Mom."

Just as I was about to release mine, Joseph grabbed my arm.

"Wait! Mom- you're not gonna wish for a cure for diabetes, are you?"

"You bet I am."

"C'mon, Mom-- there are a lot worse things. What about AIDS? People are dying of AIDS. Or cancer?" he said, almost pleading. "This isn't so bad-- I can deal with this. Please, Mom - don't waste your wish."

I turned away from him, tossed my quarter, and watched it bounce off two stones before landing at the bottom.

"So what did you wish for?"

"What do you think?"

"Oh, Mom..." he said, shaking his head.

But then, he wrapped his arms around me.

And I'm not sure if he was thanking me or trying to make me feel better...

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

"So really, Mom-- what are you gonna wish for if you get the wishbone?

Wine glass still raised, I look meaningfully into my son's large brown eyes.

"What do you think?"

Independence

"Mom," Joseph calls out suddenly from the back seat, as we finally begin the long drive home from camp.

"I want to be more responsible for my diabetes care."

"What do you mean, Bud?"

"You know, like do my own set changes."

I catch a glimpse of his earnest expression in the rearview, and am struck with an odd mixture of pride and sadness.

"Really? Are you sure you want to do those yourself-- the insertion, too?"

"Yeah, I do-- not alone, though... I mean... I want you to guide me through it and just... you know... be there."

"Sounds good to me," I tell him, the words catching in my throat.

Soon after his quiet declaration, he's sound asleep....

And then - two nights later - it's time for a set change.

Sitting at the kitchen counter, I pull out his supplies: a new cartridge, infusion set, an alcohol pad, IV prep, IV 3000 tape-- and a small vial of insulin.

Just as I'm about to tear cellophane, Joseph walks into the kitchen.

"No, wait-- Mom, I really want to do this myself.

"Oh-- sorry, Bud."

He drops down into the seat next to mine, and I hand him the cartridge, still in it's wrapper.

And then I take a deep breath and watch-- literally having to sit on my hands in order not to jump in and help him.

"That's it, just smack the cartridge with a pen to get the air bubbles out and- you're doing great, but slow down... take your time."

"I know what I'm doing, Mom," he says calmly, while turning the filled cartridge between his finger tips, looking for bubbles. "I've seen you do this like a million times, and I even did it at camp. It's okay."

And he's right.

Within five minutes, he's done.

"Terrific job, Bud," I say smiling.

"Thanks," he responds with a grin. Then he stands and is about to leave the kitchen when he suddenly turns toward me, holding up his left hand.

I slap it with my right, and for a moment, the tops of his fingers hold onto mine.

And then he's gone.

That was over two weeks ago, and since that day Joseph hasn't looked back -- hasn't asked me to do a single set change-- even when he's been tired or has had a friend over.

He just does it.

Amazing.

I'm so dang proud of him.

But at the same time, sadder each time I sit and watch him do this.

Crazy, isn't it?

After all, this is what I want for him-- I want him to be able to do this stuff on his own.

But still.

The endless set changes, the monitoring, the trying to interpret the numbers-- trying to discover what his body is doing -- the supplies-- God, all those supplies -- keeping track, paying for them -- and always, always being prepared...

At some point, he's not going to need or want me to do any of it for him-- he'll carry this burden alone.

And to be honest, I'm having a hard time dealing with that fact.