Tuesday, May 31, 2005

Sweet Home Chicago

Man, do I miss Chicago. We just spent three days there with the kids, and do you know what we did?

Walked. Everywhere.

Before moving to Wisconsin, Ryan and I lived in Chicago for 13 years. Prior to that time, we “courted” (as Ryan likes to call it) for nearly two years-- until I left New England and joined him in Chicago. We fell in love, and eventually, got married in that city. Spent the second half of our twenties and most of our thirties living just south of Wrigley field and a short eight blocks from the lake. I went to college there– and truly benefitted from being an “older” student. Gave birth to Joseph in that town. And fell in love with the city all over again as I saw it through the eyes of my growing son. He was 5-years old when we moved.

As with most trips back, we stayed with friends who still live in the old neighborhood– Lakeview/Lincoln Park. These people are some of the easiest to hang with. Mike is one of Ryan’s oldest and best friends-- a lawyer by trade, but at heart, a musician. When not visiting with us, he was either playing the piano or one of his guitars. Jazz is his genre of choice. And he plays it well. I could get used to living in a house where live music is a staple. Ahhh. Just think about that for a moment.

As always, Mike’s wife Joni, was a calm and gracious host. She has an almost Zen-like attitude toward life– an attitude that I’m always hoping will rub off a little while I'm there.

Their kids are terrific. Adam is a year older than Joseph, and one of his best friends. His sister Emily just turned 14. She’s taller than me now. I can still remember going to see her in the hospital just after she was born – I was on my way home from a final exam, and decided to check out our friends' new addition. She was a tiny thing, lying there under the “french fry” lights in the nursery, wearing a silver mask over her eyes (she had jaundice).
And now, she’s this beautiful young woman.

Anyhow, after we got back last night, I got to thinking again about Kerri’s top fives. Which in turn got me thinking about the top five things I love about Chicago...

1. What I like to call “The Serendipity Factor”

You can walk forever and there’s always the likelihood you’ll find in a resale store that cool silk sweater for six bucks that you couldn’t find anywhere else (I did this trip!), or some amazing Thai food, or a funky coffee shop just when you need that hit of caffeine, or (just fill in the blank– the possibilities are endless).

2. Pops for Champagne

This is the jazz club where Ryan and I got married– in their outdoor garden, in front of a trellis. Inside the club, there's a barrel-vaulted ceiling, and a bar that forms a half circle around a raised stage where you can hear some of the best jazz in the city. The champagne’s not too shabby either. We stopped in this trip for a flute, and to toast our upcoming 12-year anniversary. Wow! Has it really been that long?

3. The Free Zoo

We always go to the Lincoln Park Zoo when we visit. It was a regular destination for us even before we had Joseph. I just can’t help it. I love zoos. And this one is beautiful. And you can’t beat the price.

4. Resale Shopping

Okay, I admit it. I’m cheap. I don’t like spending top dollar on clothes. But I love a find. And for resale shopping, there’s none better than in Chicago. This trip I got some fabulous bootcut jeans, a black cotton Gap tee, a long sweater, a silk, lime-green Bloomingdales sweater, and a cute sleeveless Banana Republic shirt for less than thirty bucks. Now that’s shopping.

5. Everything else.

The tall buildings, the El (elevated train), the brownstones, the greystones, the restaurants, the Cubs, the LAKE, the music, the used bookstores, the people (so much more open than my fellow New Englanders... sorry any family/NE readers), and I’m sure there’s more....

Simply put, I love this town.

Thursday, May 26, 2005

In The Dugout

Monday, May 23, 2005

Bloody Peach Vanilla Cake!

Joseph called today before snack. His sugar was 141. Awesome. But then I thought, this might not bode well for later. Usually he spikes around 200 at this time, then comes down nicely before lunch. Hmmm. To be safe, let’s bolus on the low side for the snack, without a correction for the BG. I get a call an hour later. He’s 64. Okay then. We treat with glucose tabs, peanut butter crackers... an hour after that, right before lunch, he’s 166 (a smidge on the high side, but not bad). Just as we’re confirming his lunch bolus, Joseph tells me that a classmate has brought in cake – for no apparent reason – and it will be served about half an hour after lunch.

It’s amazing what Joseph’s diagnosis has done to my attitude toward cake.

Once something I looked forward to with relish. A food I would delight in when served as a “surprise.” Certainly not ever something that evoked a feeling of dread.

What a difference diabetes (and the rather steep learning curve of the parents to a new pumper) can make. For you see, we have not yet cracked the bolus code for cake. We’ve experimented a bit with chocolate cake. So I did have something to go on.

“Joseph, is it chocolate cake?”

“No mom, it’s got vanilla frosting.”

“Okaaay,” I said.

“And peaches in the middle.”

“But honey, you don’t even like peaches.”

“Yeah mom, but everyone is having it. And I can pick the peaches out. That’s what some of the other kids are doing.” I could hear those other kids, already tucking into their treat. And here was my son, on the phone trying to negotiate his own piece.

“Joseph, I’m really not sure how we’ll bolus for this. I don’t know the portion size. And our calorie king doesn’t have carbs listed for that kind of cake.”

“But mom, all the other kids are having some,” he pleaded.

“Honey, we were planning on stopping at the bakery after school like we usually do on Mondays and... ”

“Fine!” he interrupted. And then he hung up.

My son hung up on me.

At first I was angry. After all, hanging up on your mother is just not acceptable. Then I got over myself, and thought about how shitty it was that he couldn’t have cake with the rest of them. Goddamnit! And I handled it all wrong. I could have just tried to guess-timate the carbs on the damned cake. But he'd had a pretty high night, and went into lunch slightly high... blah blah blah.

I should have made it work.

When I picked him up at the bus stop, Joseph seemed in fine spirits. After all, he knew he was going to get a “fabulous chocolate chip cookie” from our favorite bakery. Right away I apologized about the cake incident, but did tell him that that didn’t mean it was okay for him to hang up on his mother.

“It’s okay to be upset, and to let me know you’re upset. But hanging up on me, or anyone else for that matter, is not okay.”

He quickly apologized, then told me that one of his classmates -- Johnny -- didn’t have any cake either.

“Why was that?” I asked.

“He just didn’t feel like cake.”

I could have kissed Johnny. Right then and there.

Friday, May 20, 2005

Waiting For A Fly Ball

Wednesday, May 18, 2005

Parents of Prospective Pumpers

Try saying that three times fast.

So, upon waking this morning I found a number of wonderful, encouraging comments in response to last night's post. Thanks guys. I feel better already. I wish I could say the same for Joseph-- his fever is up again. But we kept his sugar from going completely nuts last night-- just one spike to 257, that was stopped in its tracks with an aggressive correction. He stayed in the low 100's the remainder of the night, then dropped to 79 at 5am. Okaaay. We nudged his basal rate up a bit, and he was back in those low 100's...

It's a dance. And we're getting a lot better at it.

Now, this morning I also discovered a comment to a previous post, He Found Out, from another fairly new blogger-- Type1Dad. As per usual, I was going to respond to his response in a comment. But then I realized that his request for information about how we began prepping for the pump might also be of interest to others who were looking for the same.

Soooo..... here's the deal:

Yes, we did put in quite a bit of time in preparation for the pump. One of the first and best things I did was to subscribe to Insulin-pumpers.org (see my very first link). These people are amazing. "Pumpers," as I like to call them, are an online community of pumpers AND parents of pumpers. There are almost 5,000* folks currently subscribed to this group. And I cannot say enough about the wealth of information and support they provide. Even if you're shy about posting, just following the threads will provide a ton of info. I was one who posted looking for answers, especially before we settled on a pump for Joseph. These people gave me an inside look at the various pumps out there, helped me articulate the important questions for our care team, and really just got us through the whole saline trial period.

It costs nothing to join, but they do have fundraising drives. I always contribute, because I think the work they do-- bringing people together who might otherwise have never connected -- is invaluable.

Moving on...

I also read several books about the subject. If you haven't read them already, start with:

Insulin Pump Therapy Demystified by Gabrielle Kaplan-Mayer

Initially, I looked at others (and actually starting reading Pumping Insulin-- see below), but found that reading this book cover-to-cover first was the best way to get my "feet wet" with the whole idea of pumping.

Next, I read:

Smart Pumping by Howard Wolpert

This is my favorite book on pumping. The writing is so well done, so accessible. It doesn't read like a text book-- more like having someone, a very personable someone, sitting there with you, explaining the basics. In fact, using this book, I was actually able to determine Joseph's starting basal rate, insulin-to-carb ratios and sensitivity factor before we even got the pump. And they matched the ones set by our CDE!

And finally, I read (and still consult):

Pumping Insulin by John Walsh

A fantastic resource, but very intimidating if you haven't read the previous two first. John Walsh is considered by many in "pumping" circles as the "guru" of insulin pumping. This book certainly bears that out. His website is also a terrific place to visit for comprehensive articles on the subject, an extremely useful pump comparison table, or just to buy books and other diabetic supplies.

The last component here, and it was really the first, most important, and an on-going one, was to spend time talking with Joseph about the idea of pumping-- exposing him as much as possible, without overwhelming him (which can be really hard, I know) to the whole concept. Then we did saline trials with three different pumps. The first trial was with a Minimed at a terrific ADA camp in October for newly-diagnosed families. I actually wore a Paradigm pump along with Joseph. Quite frankly, there was no way I was going to even consider having my son wear a pump without knowing first hand if it would hurt him. (BTW, it didn't hurt.) Next up, Joseph tried the Cozmo and Animas pumps in December.

Now, at times, Joseph did express some resistence to the idea of wearing a pump, but I believe that having faith that this device would be the best choice for him, and conveying that faith in every conversation about it, was key. After all, if he was not on board with this, there's no way it would work. And we would have certainly delayed putting him on an insulin pump if that were the case. Happily, it was not.

After thoroughly researching all of these pumps (and finding pros and cons with all three), and to further strengthen Joseph's commitment to such an important step, I decided to let him make the final choice. After all, he was the one who would have to wear it. 24/7.

Joseph chose the Animas 1200 . It was the smallest, lightest pump available. And extremely user-friendly. He loved it from the moment he started using it with saline. And, (for mom!) it had the lowest basal rate increment-- .025 units/hour. Because Joseph was (and still, apparently, is) honeymooning, this was an excellent choice. We are now back to running a .025 basal from 10 am to 8pm.

As a result of all of the above, we went into our training with confidence. We'd received our pump almost a month before the training actually took place, so we had some time to play with it a bit. Joseph and I had also messed with the virtual pump on Animas' website, so we were pretty comfortable with the real thing. At our training session, we came in with Joseph's pump loaded with a battery and already programmed. Ryan, Joseph and I had worked with the training DVD, practiced filling the cartridge (with saline, of course), loading it into the pump, and priming. The only thing that made me nervous was inserting the cannula-- but, I think anytime you have to stick something into your child, you're gonna be a bit shaky. Thank heavens we took to that quickly as well.

I won't lie, we've had some scary moments since Joseph started pumping. Just read some of my previous posts. But despite this, he still says that he will "never go back to shots."

There you have it. Sorry for the incredible length, but the process of choosing an insulin pump and learning how to use it-- of becoming emotionally ready to take this step-- can be daunting. Hopefully, this post gives you some guidance along the way.

If you have any other questions, just ask.

* this is a correction-- originally I posted that there were (only!) around 500 subscribers-- this is actually the number of subscribers to the parents-of-pumpers list alone.

Tuesday, May 17, 2005


Joseph has a fever of 101.3. The "evil virus" has indeed struck yet again.

Earlier tonight Joseph was fine. No signs of illness. We actually went to an open house at his school. I got to read a report he'd written about the snowy owl, see the progress he's made in math (he's a bit of a wiz, you know), and view his "timeline of life events" hanging on his classroom wall. Joseph's timeline included the day he was diagnosed with diabetes-- he illustrated this entry with a drawing of a syringe, a lancet, test strips, and a meter.

I was sad that this was the last entry. It made sense, of course. His diagnosis was probably the most recent major life event for him. But I still didn't like to see it there, like a period at the end of a sentence.

Oh well, I'm just feeling kind of moody tonight. Sort of bracing myself for the next few nights and days of more frequent sugar checks, thinking hard about insulin adjustments, and just plain worrying even more than usual.

And Evan is still sick. Her fever finally broke last night, but her nose is running thick.

Blah blah blah blah... complain complain.

Feels like I'm just sitting here in my pity pool inviting y'all to join me. I better stop now before I drown in it.

Monday, May 16, 2005

Little League

I wrote this on Saturday afternoon, and just now got around to posting it....

Last night, Ryan and Evan simultaneously came down with the same rotten virus I’d been battling for nearly 15 days--- the lingering chest cold that had stolen my voice for four days, laid me out for three more, triggered a bout with bronchitis, and just wouldn’t let go until a lymph gland in my neck joined the fight by swelling out to goiter-like proportions (sorry for the yucky image, but it scared me too, so I had to share). This miserable cold virus had now invaded the bodies of my husband and youngest child.

Thank god it hasn’t touched Joseph. Yet.

Isn’t that just nuts? I hate to see Ryan sick. And my little girl. Tossing and turning last night with a fever. Both of them coughing. And the only silver lining in all of this is that Joseph doesn’t have it. Because for him, it would be so much worse. His sugars would go through the roof.

But Joseph is fine. And because he’s okay, his little league game was a go this morning.

At 8:45 AM.

Now why, if I might be so bold to ask, do they schedule these things so very early on a Saturday morning? Are they hoping to give families the rest of their Saturday to themselves?

Sounds reasonable.

Except that I don't want the REST of my Saturday. I want my early morning.

You see, because Evan was sick last night, she was up virtually all night. This means that I was up with her. And, of course there were the overnight checks of Joseph’s blood sugar, which remarkably, Ryan handled, but I can never quite sleep through. Also, we have our family movie night on Friday, so we always stay up a bit later than usual watching it with the kids.

(BTW, it was my pick— Finding Neverland, which I highly recommend. We all loved it. I was weeping by the end.)

Anyhow, if I could return a moment to my whine. This morning– no sleep. At 7am, I got up, made coffee, then realized we were almost all out of half & half (Damn! Should I take the rest or leave some for Ryan? Hmmmm. Aw hell, I love the guy. And we both love the half & half in the coffee, so I mix a little with milk, and have one lonely, less-than-creamy cup.) Joseph is up with me now. We measure out his Cocoa Krispies and milk, then bolus. His blood sugar, by the way, is 105. Very nice.

Soon he is in his uniform, and we’re out the door. Oh, speaking of his uniform, his team name -- Virchow Krause -- is plastered across the back of it. Now what’s the deal with that? I mean, I realize these little league teams need the sponsorship of local businesses to survive, but why can't they be the Virchow Krause Tigers or, better yet, Red Sox? Instead, they are named for a large local accounting firm that has a reputation for being a sweatshop. Doesn't exactly give you that "baseball-apple pie" kind of feeling, now does it? Last week Joseph and his team faced the fearsome Pertzborn Plumbing. (Ryan and I called them the “Plumbers” – we thought that sounded cooler) And soon, Joseph will be playing First Choice Dental. Then it's on to Keleny Top Soil.

Poor kids.

Ah well, it really was nice to be out at a baseball game on a sunny, crisp morning. Once that first hit of caffeine took hold, that is. Sitting in the bleachers, holding tight to a thermos of hot (albeit half & half-less) coffee, watching my boy warm up. Cheering him on as he made a beautiful play from left field. I could almost forget he had diabetes. And since he disconnects from the pump when he plays, I’m sure he can too. When Joseph comes up to bat, his teammates chant his name. He’s never had that before. The camaraderie that comes with being on a real team.

When I come to the dugout to check his sugar halfway through the game, Joseph resists.

"Can we do this later?" he asks.

I tell him "No. It's important. We haven't checked since before breakfast, and you've been disconnected for an hour and a half. "

I can tell he's running high when he grabs the lancet out of my hands, looking around to see if any of his teammates are watching. They aren't. It's a close game, and his team is at bat.

Joseph's sugar is 217. I opt not to correct. He's going to be very active. And a spike two hours after breakfast isn't unusual. And besides, he is still a bit shy about his diabetes around his teammates. None of these kids go to his school. So whenever he checks his sugar or does anything with his pump, if anyone notices, they stare. I try to encourage Joseph to explain what he's doing, but I think he'd like to view the baseball field as a diabetes-free zone. A place where he really can forget that he has this disease. I'm not sure how safe that is. What if something were to happen on the field? What if he had a severe low? But I will always be there. Or Ryan. Or both of us.

Joseph returns to the dugout. While waiting for their at-bat, he and his buddies blow bubblegum bubbles, obviously trying to see who can blow the biggest one. Joseph's is just as big. Just as impressive as the rest. And, it really doesn't matter that his is sugar-free.

Wednesday, May 11, 2005

Pump Failure

Okay, so last night I’m getting Joseph ready for bed– checking his blood sugar, and then checking his basal setting on his pump. It’s 10 o’clock. I know, I know, kind of late for a kid who has to go to school in the morning, but he just HAD to see the finale of The Amazing Race. (As did I).

Anyhow, I hit the backlight button on Joseph’s pump to “wake it up,” and the screen lights up. But no display. Nothing. No words. No numbers.
A complete and utter blank.

Now THIS is a problem.

For you see, without a display I have no idea what the pump is doing– I cannot adjust his basal, I cannot give him a bolus.

Initially I thought if I just push the backlight button a few times, the damn thing would wake up. And it worked – sort of. The pump alarm went off, then it began to vibrate so vigorously I thought it was going to jump right out of my hands. This was not good. I stayed calm– primarily because Joseph looked as if he was going to lose it any second. “Mom, what can we do? Why isn’t it working?” he asked while choking back tears. I could understand why. After all, in the less than four months he’d been wearing his pump it had truly become a part of him. A part he could trust– unlike his pancreas.
At that moment I wanted to strike the person who made this pump.

So I said we’ll call Animas – that’s the pump company – and find out what to do next. I put in the call, and received a call back about three minutes later. I was told that Joseph would be sent a replacement pump, however, because it was so late in the evening, we wouldn’t receive the new pump until Thursday morning. Dang! In those few minutes it took for Animas to call back, I’d had the irrational fantasy that they’d put a pump on a truck that evening, and we’d wake up to find it on our doorstep in the morning....

Next call– “pediatric diabetes physician on call.” Again, the call back was quick. We were to put Joseph back on shots (obviously) until the new pump arrived. Happily we had a nice stash of Lantus in the fridge for just such an occasion. I’d always hoped it would just sit there, gathering dust, like an insurance policy untainted by a claim. Oh well.

Joseph was NOT pleased with the whole shot thing. Neither was I. But pulling out a vial, pushing in air, then drawing insulin into a syringe. Trying to find a fleshy part on the back of his arm, then pinching up the skin. Holding the syringe like a dart and poking it in quickly, pushing the back of it – in and out, just like that.
Like riding a bike. You never do forget.

Though we all look forward to the arrival of his new pump, I must say this incident has me more than a little shaken. We are so dependent on this device. Losing the display was bad-- very bad. But what if the malfunction had caused something more than a terrible inconvenience? What if insulin delivery had been affected? You can go crazy thinking about these kinds of scenarios. About our child’s vulnerability while wearing this device.

But we have no choice really. A pump will give him the best glucose control. And, if we want to give him the best odds for a complication-free future, then we must trust ourselves and the technology we’ve chosen to help ensure he has that future.

Tuesday, May 10, 2005

A Little More History

Yesterday Violet, from Pumplandia, wondered "if some kids have greater resilience than some adults in their ability to adjust to a life-changing illness." saying that she imagines "this depends very much on the individual." She got me thinking back to the hours and days after that awful diagnosis moment. And in thinking back, I believe there is a great deal of truth to Violet's statement.

Immediately after discovering that he had diabetes, Joseph was devastated.

But obviously that's not where he is now. Nor, incredibly, was it the place he occupied later that very same day.

We were told, in those first minutes, that Joseph needed to be admitted to the hospital that afternoon. A bed would have to be found. And because three other children in the area were diagnosed with type 1 that day (that's right-- three other children), there would be a wait to find out where we would land. During this time I had called Ryan to tell him what was going on, and to have him come with Evan to the pediatric office. When he arrived, we just looked at each other, and communicated volumes in the exchange. Then Ryan grabbed hold of Joseph, and held on so tight I thought he might break him. Later Ryan would tell me that after he'd gotten my call he had briefly looked online, wanting to know what we were dealing with. He'd read some of the worst case scenarios for the disease. It was the first time he'd really cried in years.

After nearly two hours of waiting in a tiny exam room, we were informed that Joseph was in. We were to drive to the hospital-- 5 minutes from the doctor's office-- and plan on being there until Sunday night. This was Thursday afternoon.

Yes, when Joseph discovered he had diabetes he was scared-- for about half an hour. After we reassured him that everything would be all right -- that we would learn how to deal with this, and he would be fine-- he calmed down. And then it dawned on him that there was now an explanation for his bedwetting, and that we could DO something about it. His spirits began to lift. And when he found out that in the hospital he'd have cable TV, Playstation and diet soda -- all things he did not have access to at home -- he was positively psyched.

At the hospital, Joseph was a model patient. More like a guest really. No IV. No real signs that he was sick. Ordering in room service, a little extra for any friends who happened by. And with me and Evan sleeping in a cot next to his fabulous adjustable bed, it felt like a slumber party.

On Friday, Joseph listened patiently to the Dietician as she explained to him the basics of nutrition. And after she gave him the definition of a carbohydrate, Joseph said in a calm, and not the least condescending, voice, "I think you must be used to talking with kindergarteners. I already know this. I learned about nutrition in first grade."

When he met our Diabetes Educator on Saturday, Joseph listened carefully to everything she said -- knowing that when our session was done he could go back to playing a video game. Checking his blood sugar was a snap. Joseph has never been one to shy away from needles. It's always been the emotional stuff that's gotten to him. He immediately began, not only doing his own finger sticks, but giving himself shots in the top of his leg. Amazing.

And when I expressed my concern about how he would feel dealing with all of this at a new school, with new classmates, Joseph took my hands and said "Mom, you're the one who's worried about that. Not me." And I thought "Who is this child? This boy who can take in all of what is happening and handle it so calmly, and with such grace."

By Sunday, they told us we were ready to go home. "Huh?" I thought. How can we be ready for this? It was so big. There was still so much to learn.

But Joseph was ready. He couldn't wait to show his friends his meter.

Monday, May 09, 2005

Diagnosis Stories

A lot of these stories are showing up lately. I was reading Violet's wonderful blog this morning, Pumplandia, and was very touched by her diagnosis story . She is right when she comments that there is a great deal of diversity in everyone's stories. But I think the common denominator here is not simply the end result, but also the process of betrayal by one's own body. The feeling that you just can't trust it anymore. And in the time leading up to diagnosis, you have no idea why. Joseph felt this as he realized he couldn't go to bed at night without knowing if his pajamas and sheets would be soaked in the morning. He couldn't go for a walk or drive without fearing he might need to pee or, just as desperately, a drink of water. And, in reading Kerri's story as well -- though she wasn't sick in the time before diagnosis-- wetting the bed, and subsequently, having to wear “The Alarm” must have prompted a tremendous loss of faith in her own body. I don't know what that must have felt like as the child experiencing this, but as a mom who woke every morning holding her breath, hoping her child had a dry night, and inevitably feeling the pain as her son struggled to tell her about his accident, I have an inkling.

Like birth stories, these tales of transition share common markers – and these are important. They are an integral part of a journey that leads all those who embark on it to the same place– a new and very different life. Sharing the diagnosis moment and its precursors lets diabetics know that they were not alone in that early betrayal– the time when your body rebelled and you had no idea why.

And, going forward, in this new life of blood sugar checks and boluses, highs and lows, these stories reaffirm that you are not alone.

Friday, May 06, 2005

Change is Good

What do you think? Is red my color? I wanted something a little brighter, a little warmer...

So last night we continued our middle-of-the-night testing of Joseph’s “new and improved” basal rates. And guess what? For the first time since he started the pump, no corrections were necessary. No highs. No lows. He coasted through the night between 115 and 135.

If this is what life is like post-honeymoon, then I say “bring it on!”

Now, I can’t get too excited about this because I’ve been told that while he may be moving out of the honeymoon, it might still be a while before he's completely out of it.

In other words, don’t count out the power of the pancreas just yet.

Okay, but for right now, making those first frighteningly big changes in his basal rates has made us all very happy. In fact, Joseph is so pleased with how he's been feeling in the last couple of days that he actually wants the honeymoon to be over. As I said in my previous post, I do have mixed feelings about parting with his remaining beta cells. Feelings that got pretty intense the other day. Of course, lack of sleep, a horrendous cold, AND an ill-timed hormonal surge didn’t help.

But today, with new basals in place, my son’s blood sugars are looking great, and more importantly, he’s feeling great.

Change is good indeed.

Tuesday, May 03, 2005

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.


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.