Fall

It's been a fall chalk full of soccer, trips, beaches, pumpkins, geocaching, and wonderful time with family. Too many sights, sounds, and events to list each one...

(click on the photo collage to see a large image)

Halloween

At the North Falmouth Elementary Halloween Parade...

And later, before trick-or-treating with our good friends Sarah and Abigail Lott.

Sarah, Abigail, Amy and Ed's neighborhood, Pirate's Cove, has long been home to our annual candy-collecting event. We love sharing pizza and beer with them, and making the quiet trek along the water. There always seem to be just enough other children and stops to make the night fun, but not too crazy. Many of their neighbors are elderly and seem to love seeing the kids, which is nice, too. And my dad would be proud that I'm keeping up the Kerrigan tradition of drinking whilst trick-or-treating.

The kids each came home with a respectable 2.5 pounds of candy, give or take the weight of a plastic orange pumpkin, and each happily pulled out a few favorite pieces and then traded the bulk of their loot for cash. As it turns out, candy is just about as bad for braces as it is for diabetes. Now the challenge is for us not to eat it all!

How...

Did I ever live without picassa? Suddenly the thousands of digital photos I have on my computer have a purpose.

Cropping, adding effects and text, removing red eye, making collages, and uploading online albums all in the matter of seconds? Seriously.

Is there anything better than Google? I think not.

Less

Over the past six months, diabetes has been as present as ever in our lives. Thomas started on an insulin pump, but the daily in and out of diabetes is the same. Testing. Bolusing. Site changes. Rinse and repeat.

Somehow, though, diabetes has receded; become less. While the daily chores are the same, the emotional toll is so greatly diminished.

The day school started in Bourne, TJ's pump broke. TJ was supposed to be sleeping over his grandmother's, and we needed his pump to be working. But while the whole thing was a huge pain - I had to order another pump, rush home the next day to program it and do a site change before rushing him to Grandma's - it was just a pain - nothing more.

A woman at work asked about Thomas the other day, wondering if he was "all set and under control now." As I was briefly explaining that while he was doing well, we have to monitor him each and every day to keep him that way. It dawned on me, though, that diabetes care had become less like a terrible, sad imposition, and more like changing a diaper - not the best part of the day, but something that needs to be done.

In the meantime, my blogging has suffered. Carey wrote once that he was always waiting for his son to "do something diabetes-ish" to be blogged about. And while there have been things to write about, I just don't care to, or haven't had the time to, or a little of both. So, the tales of by the numbers may change - to the stories of regular life. Which is, after all, life with diabetes.

Boo!

Look what we made this morning...

all lit up...

Walk on the Wild Side

"Team TJ" came out of retirement to strut it's stuff on October 4th in Boston, and strut we did. The day was fantastic, falling into place amazingly. We took the T in from Cambridge, met up with the other team members easily, and walked at the front of the pack in beautiful weather.

This year our team grew. All of the Kerrigans came out to support us. We were especially happy to have Warnick family members Cassie (also Type 1), Dave, and Christine join us. Grandma came along as well, and Grampee came as an honorary member (anyone who rides a motorcycle all the way from Indiana and still wants to walk 3 miles can join our team anytime!).

Unlike last year, this year's walk was much more fun and far less stress. Suzanne helped with the t-shirts and logistics, and for the most part I was able to keep myself in check, remembering that just being at the walk is enough. We did raise a more than respectable $4200, but even if we had not, the walk was a success in my book. As beautiful day, a reminder that we are not alone in this journey, a fantastic lunch at Boarder Cafe. And really cool t-shirts from customink.com...a great day all around.

Many, many thanks to Sally and Kevin, Mike and Suzanne, the Kerrigans, Warnicks, and Bornings, and TJ's amazing friends! As I have many times, we are so lucky.

See more pics of the day here:

JDRF 2008

50 Years?

Today on facebook, Joslin shared a list of all of their recent research finds. These are obviously meant to be positive - possible hopes for a future cure.

This piece, however, struck an unintended nerve:
Study Finds Individuals with Long-Term Type 1 Diabetes Still Capable of Producing Insulin: Surprising Finding Gives Hope to All With Disease
June 8, 2008 – Researchers at the Joslin Diabetes Center in Boston have discovered that a significant portion of people who have had type 1 diabetes for 50 or more years still have the capacity to produce insulin, a finding that has potential implications for improved treatment for all with the disease. To read more, click here: http://www.joslin.org/1083_4367.asp

It is definitely an interesting piece. After diagnosis, you spend a decent amount of time wondering when the "honeymoon" will end. When will the pancreas finally stop producing insulin all together? To be honest, in some ways I was eager for the honeymoon to end, because I thought that things would be more predictable. No more would TJ's pancreas somehow sputter to a start again, kick in a little insulin, and send him low. Or let us down when we were counting on it, if even for a small bit of insulin production.

But this study suggests that even after 50 years of living with diabetes, some people are still capable of producing insulin. The lead doctor goes on to say that this finding could lead to a possible change in treatment, if they find ways for people who have had diabetes for less time to produce insulin...BECAUSE, he says..."it's very rare for someone to live with Type-1 diabetes for 50 years."

Well, then.

I've posted before about my concerns for TJ's long-term health. But I can't say I've been viewing diabetes as a death sentence. TJ was diagnosed at 6. Does that mean that it will be unusual for him to live to 56?? Obviously so much could, and most likely will, happen in science and diabetes treatments over the next 50 years. There is no way to predict what Thomas' diabetes life will be like. I'm sure people who are in their 50's now and using an insulin pump never imagined they would be - especially when they were measuring their BG with urine strips and taking insulin only once a day.

But still, I generally defer all diabetes opinions to Joslin. So far they have proved to be nothing but amazing in their understanding of diabetes and their commitment to a cure. Hearing right from that particular source that it would be "very rare" for Thomas to live longer than 50 years. Too tough to take.

4 AM

After struggling through Saturday evening with keytones, we put Thomas to bed in the 300's, with keytones going down. At 9:30 things looked good, with a number nicely in range. He needed a correction (by injection) again at 11:30, but the keytones were still low. I kept the temp basal up for another hour, just to see if I could keep the keytones at bay for good.

Tom checked at 12:30 - great number -165, but he didn't check the keytones. Why, you ask, did Tom not check the keytones when the whole problem has been keytones, not BG numbers? Yeah, I don't know either.

4 AM...BG is 59 (How! Did it get. So. Low). Keytones are 1.2 (What?!?! His BG is 59). UGH.

So Thomas was treated to a 4 AM gatorade to bring the BG up (97 by 4:30, with keytones down to .5), followed by a 4:30 yogurt drinkable and an injection to cover/bring the keytones down. Assisted by a 2 hour increase in the temporary basal rate. I was treated to a few waking hours from 4 - 6 making sure I didn't kill my kid with insulin. Oh wait, that's not a treat.

7:45 AM - BG 114, Keytones 0.1. Ahhhhhhhh.

Hopefully we can stay more on track today.

If there is an upside here, I suppose it is that the whole keytone situation is easier to manage with the pump. Certainly there is no way to do a temp basal rate without the pump, and with MDI there would be ongoing concern about the IOB from a long-acting insulin. Of course, the 'freedom' of the pump seems to be what is getting us into this keytone trouble in the first place, but that just might be a whole separate post.

Geocaching, traffic and...keytones. Oh My!

It was a definite non-beach-day today, so we decided to embark on an "adventure" with the Earleys and explore some of the caches in the Nickerson State Park in Brewster.

The day started off traffic-y - which shouldn't have been a surprise, I suppose, for Saturday July5th on Cape Cod. Out of character, Tom hadn't objected when I mentioned our plan - but then again, he wasn't coming.

We did make it to Brewster within an hour, and had a great time searching for (and finding) a couple of caches overlooking Cliff Pond. A great spot, and fun finds.

Stupidly, though, I let it go too long without a big meal for TJ. (Supposedly with the pump he can skip meals, but this hasn't been our experience...those "starvation" keytones come on fast.) His numbers were great - staying right around 120 all afternoon, and he did have a snack and bolus at 2:00. But by 4:30 he was complaining, and I could tell he was getting keytones. Sure enough, his BG rang in at 126, but his keytones were climbing - technically OK, but still higher than I would like - 0.4. Mikey helped him with a bolus and a snack while we sat in traffic with a capital TRAFFIC and I found myself understanding my fathers lifelong resistance to Cape Cod.

Suzanne navigated us around a bit of route 28, and we hit a Sea Food Sams. TJ was still belly-aching (quite literally, I'm sure), so I bolused a little low for his 3 mozzarella sticks and bowl of chowder, not sure of how much he would finish (not to mention totally clueless as to how many carbs are actually in 3 mozzarella sticks and a bowl of chowder).

TJ seemed better, but when we got home (in much less traffic, I might add) he started hanging his head over the pot. UGH.

6:30 PM - BG is 446(!!!) and keytones of 1.4. Injection of 2.5 and temp bolus of 125% for 30 minutes.

7:30 PM - still a wet rag. BG is 460 and keytones of 1.7. Now we're going in the wrong direction.

A call to Joslin let us know we were doing things right, though (something I never mind hearing), and the doctor on call had us bump the temp basal up to 150% for 4 hours.

8:15 - he's down to 334 and keytones of 0.4. Phew! Not out of the water yet, but in the right direction. At least we can put him to bed.

9:30 - 143. Keytones of 0.2. Ahhhhh.....

Are we out of the woods yet? Time will tell. The last time this happened we fought keytones for a couple of days, but 0.2 I'll take.

CAMP-Y

Today marks the end of the kids week at Camp Farley!

Although I had driven by a few times, I had never given the camp a second thought until Sally mentioned that she would be sending her kids, and that the camp employed a full time nurse. (As always, my friends are graciously looking after TJ.)

I was nervous at first, but met with the nurse last week. She was eager to do anything I asked, and I felt confident that even if his numbers were not perfect, TJ would be safe at camp. Deb (our amazing Joslin nurse educator) helped to calm my fears a little, too, by reminding me that any nurse is totally capable of managing his daily care. So...off the kids went.

And...they have loved every campy minute of it. Walking through the Camp Farley grounds is like stepping into some '80's movie about camp. There is an outdoor stage area with bleachers built into the hill called - that's right - Council Grove. At Council Grove they kids have picked up many a traditional "camp" song. Council Grove overlooks the pond where they have swimming lessons and the many cabins for the overnight campers. The kids have produced yards and yards of gimp projects. This camp is so stereotypical, it is hard to believe its real.

Five days of hanging without the kids hasn't been too shabby, either. Taking a break from constant parenting, and from constant diabetes management, to just work in the yard, go out to breakfast, actually tan my back at the beach...I'm already planning for next year, when the kids will undoubtedly be enrolled in another session of camp.

Don't you know ANYTHING?!?

At baseball last Saturday, Thomas' pump escaped from his waistband while he was running home. Not to be deterred in his (automatic - this is junior baseball, after all) score of a run, he grabbed the pump by the tubing and continued on.

As he returned to the bench, Tom witnessed the following conversation (and yes, this whole post is hearsay, but still, a mom's gotta brag every now and then):

Teammate: "What is that?"

Thomas: "My pump."

Teammate: "Well, why do you have it?"

Thomas: "Because I have diabetes."

Teammate: "Well why do you have that?"

Thomas (insert pithy tone and eye-roll here): "Because I have diabetes...my pancreas doesn't work."

Well obviously!

Pumped!

Well, despite a two month hiatus from blogging, Thomas is pumping with the best of them. I have actually been holding off on this blog post until I could include a photo or two, but life has been a whirlwind, and I don't have any photos. I do have a day, off, however, so I'm updating the blog. Words only will have to do.

Thomas was "officially" hooked up over April vacation, and things have been running very smoothly since then. It's amazing how quickly the new "normal" replaced the old "new normal" of MDI (shots) therapy.

Thomas is pretty quiet about the pump, but when pressed he has all good things to say. Sure, most of them are verbatim things I told him would be good about pumping, but still, I think he likes it. It certainly has made life easier on our constantly on-the-go family. His numbers have also been much better.

Thomas has also been able to take even more responsibility for his care, which is nice for everyone. He is (as always) great about testing, and most likely could use the pump totally on his own if we would let him. As it is we have to slow him down to keep up with him. He was able to give a very detailed description of how the pump works it's magic to both Gram and Nanny, and successfully completed an overnight visit at Mimi and Papa's. Overall, the pump rocks!

The beach might be interesting, but all else is fantastic. The pump definitely minimizes the (inevitable) disruptions that diabetes brings with it.

Seeing the Future

When Thomas was admitted to Children's Hospital almost a year ago, the constant message from the doctors, nurses, social workers, and child life staff was "you can do it." A large team of (very-well paid) cheerleaders, the CH crew made it their goal to drive home the message that life with diabetes was manageable, even swell.

Part of this, I'm sure, is survival on their part. There is a lot that parents (and children) need to absorb in a short time. In order to confer the most basic and important information, and be sure it sticks, the staff needs to focus on it and only it. The checklist is out during every meeting, and the staff is slowly but surely checking off all the requisite skills: drawing up insulin - check; treating a low - check; counting carbs - check; planning a meal - check; and the list goes on an on. There is just not time enough in the three or four days to dwell on anything but the necessary, and in order to do that, they need to keep parents in an up-beat "you can do it" frame of mind.

But even with all the cheerleading, the concerns creep in. At first, my concerns fell into one of two categories - self-centered or Thomas centered. Will we be able to eat out? Will we be able to leave Thomas with a sitter? Will he be able to play at his friend's houses? Will I have to quit my job. The worrying was endless, but it was all about our lives at the time.

Now, though, almost one year later, my worries have grown to those topics that were pointedly avoided at Children's: the life-long complications that diabetes carries with it. Although no doctor has laid the "risks" of type 1 out for us, it has become clear that there is not a part of TJ's body that is not open to the devastation that D can bring with it. Dentist appointments and check-ups - previously a nagging but minor concern - are now at the front of my mind. Diabetes advertisements that were background noise before are now red flags. The ubiquitous "ED" ads that once made me blush now remind me that if, in fact, I don't keep those numbers under control the consequences will resonate in every part of TJ's adult life (even the parts I would otherwise choose not to think about.) "Will he be able to go over a friend's house" has been replaced by "Will he see his grandchildren?"

In reality, none of us can see the future for our children. There are many tragic endings all parents avoid thinking about. Will diabetes ultimately get the better of Thomas, or will there be a cure in 15 years. No one knows. Each high or low number on the meter (heck, each test on the meter) stands as a reminder that we might not be doing enough to keep these complications at bay. But, today, almost one year in, Thomas is a healthy, happy boy who happens to have diabetes. And that is as far into the future as I can see.

Going on a Bear hunt...

Last weekend the whole family trekked into the city to attend the Diabetes EXPO at the seaport world trade center. Although none of us were entirely sure what to expect, I had heard rumors of 'freebies,' and really wanted to get my hands on some! On top of the EXPO (which I worried might be rather boring for the kids) there was the Joslin Teddy Bear Clinic, one of the most well advertised events on the annual Joslin kid's calendar.

So, early Saturday morning we all headed to the city, bears in tow, to check out the scene. We were greeted at the entrance to the exhibit hall by a teddy bear who immediately drew the kids into, well, bear hugs and a TV camera that immediately made me nervous. The EXPO greeters were thrilled, cheering for us..."you might be on channel 5."

Next stop, Teddy Bear Clinic, where the kids took their respective bears (Tyler and Blacky) through the different parts of the Joslin check-up (blood draw, blood pressure, etc.) and also participated in some more routine diabetes care - making a BG log, testing blood sugar, planning a meal. Both Gwen and Thomas were enthralled, carefully completing the task at each station and doting on their patients.

We did score 2 free meters(!), found a new juice that has no carbs (it does have splenda, or course,) and even got to sample a little sorbet. Overall a very successful trip.

And the take-home message has lasted all week. Although I thought the "pretending" might be a little beneath the kids, both have been enthusiastically checking their bears' blood sugar. They drew and gave their own (saline) shots for the bears before bedtime one night, and Thomas is keeping a better log for Tyler than we keep for him. And the best part? The kids actually WERE on the channel 5 news that night.

D - upDated

So much has been going on...which seems to leave very little time for blogging. But, much of it has been good, exciting, and fun - a needed change. So, in no particular order, a few D updates:

We had our two pump visits in January and February (complete with math homework). The first was less than successful, ending in frustration followed by an A1C result of 10.1. (Yes, that's right, over TEN!). But, possibly spurred on by the realization that we really were not doing our best "managing" TJ's D, we have put significant effort into getting better control of the numbers, with much success. I think both Tom and I had become resigned to crappy numbers, but with the help of Dr. W and Deb, we have seen amazing improvements!
Our second pump appointment was a breeze, and in only a month his A1C is down to 8.8 (still high, but not as shameful!). So...we are pleased, to say the least. Plus, it is clear how much better Thomas feels when he is in range.

Which leads me to...Thomas' pump came!! His BLUE cozmo is waiting in the box for mid April, when we will do a saline start and April vacation when we will go for the real deal! Never one to disappoint on the humor side, Thomas' one comment when I showed him the pump was "good, buuuuuuut, can you send it back and get a black one, I changed my mind on the color." I'm sure everyone has realized both Tom and I have taken to spoiling Thomas in an attempt to soften the blow of having D, but even I was able to find my backbone long enough to say NOPE to that one!

The pump couldn't be coming at a better time. Thomas - who has thus far been amazing and cooperative at every turn - is finally starting to tire of not being able to eat what he wants, when he wants. Not to mention he has not made any significant growth strides since diagnosis. He's not too small by any means, but he is definitely in a lower percentile than he was pre-D. The nutritionist was pleased with our carb counting worksheets, but made noted on each days logs that his caloric intake was less than a boy his age needed. So, I'm glad to have the opportunity to feed him a little more freely, and with increased calories! We are also very excited about the many pump features, including the attached meter and the integrated computer program. I'm sure there will be many bumps along the pump-paved road, but for now we are looking forward to hooking TJ up with unbridled optimism.

Finally...tomorrow is the Diabetes Expo. We are all excited to check out the scene, score some D-swag, and participate in the Joslin "Teddy Bear Clinic" (because what bear doesn't need a little diabetes care!?!). We'll also be on the hunt for a black case for the (repeatedly requested, apparently undesired) BLUE pump. Hopefully it will be as fun as the promos promise!

Lucky

Over the past 10 months, our close friends - family now - have banned together to be sure that even with diabetes, life for TJ can be the same as it was pre-diagnoses. The many adults in our lives: S and K, S and M, A and E, not to mention Mimi, Papa, and Grandma, have learned to work the meter, count carbs, and recognize a low so that Thomas can play wherever he wants, whenever he would like.

This teamwork is no small feat - my friends work hard, both for TJ's benefit and mine. Thomas comes home from playdates with records of his BG readings from the day. My friends are even more vigilant than I am in testing every 30-45 minutes while his is playing hard. "S" overcame her life-long fear of needles to learn to give an injection. "A" revealed a "diabetes dream" she had a few weeks ago. As we learn more, and as Thomas learns more, our friends learn along with us. Meter talk, BG discussions, pump inquiries...we are all going through it together.

Today, mid-playdate, Thomas ran over to the table to test, and his wonderful pal TE hurried up alongside him to help. Two boys, heads buried together, working the meter. TE unwrapped the test strip while Thomas used the lancet. TE held the meter up to the drop of blood, while they both chattered to a new friend, C, about what they were doing and why. An unfamiliar bystander would have been hard pressed to pick just one diabetic child out of this scene. TE has tested his own BG a few times, and even weighed in when C asked if it hurt.

I don't believe there is enough room in the blogosphere to count the ways in which our family is blessed. Not for one minute have I felt alone in this journey. I am so lucky to have friends that listen, and have learned to care for TJ. Tom and I have never been stuck in a day care dilemma, and we are offered frequent breaks from the constant vigilance of diabetes care.

Watching TJ test - with a friend - today, it struck me that he is not alone, either. No one makes him feel different. Instead, his friends help him out and their parents remark at how brave he is. He travels with the crowd, regardless of his expanded care plan. He does not have to explain testing, carb counting, injections, or the tiring weight of his lows to his best pals - they are all in it together.

I know as TJ grows, and his circle widens, he will have to answer questions about his diabetes. I know there will be days (like today) when I hosted the playdate even though the other child had invited TJ over because I simply couldn't deal with trying to explain everything to someone else. There will be sleepovers he will miss, and birthday cake he will not eat. I know there will be coaches, teachers, and bosses in TJ's future that might not care to learn about diabetes as much as our current circle of friends.

But, for now, we are so very lucky.

Math

In my memories of school, no class stands out more than Algebra. Which is interesting, since I hated math. Moreover, Algebra 1 and Algebra 2 were most certainly top contenders for my two lowest grades ever. (This may be genetic, I recall Dan struggling through Algebra, too) Despite my longstanding inability to get along with math, though, the class seems somehow branded in my memory. The stress of not understanding, and not caring to understand, any of the concepts presented is one I can conjure almost instantly.

I know that what got me to school was band (no surprise there), but I don't recall more than 10 cumulative minutes of rehearsal. I don't remember our routines, the songs we played, what the band room looked like, or even many of the people who would have been there. I know I liked band - loved it even - but that is about as far as my memory stretches.

I do remember sitting in Algebra class, though, with Mr. Kazowka. I remember sweating as he checked homework since mine was incomplete, for sure. I remember watching the clock until class ended. I remember sitting on my bed trying to complete 15 late homework assignments (is it possible to become Type A in your 20's?? I never would skip my homework now!!).

When I went to UMASS, I marveled at my luck for passing out of the first level of required math. Even luckier, I managed to find a logic class (read - word problems with NO numbers involved) that counted for the level two requirement.

What does all this matter? Nothing, until now. Math seems to be one of the cornerstones of diabetes management. There are two known equations - rules, if you will - of determining insulin doses, either to correct a high blood glucose, to cover food, or a combination of both. Until now, we have been oblivious of said rules, because we follow a sliding scale created for us at Joslin. We test TJ, we check the chart, we dose the insulin. Simple.

But now, lured by even the slightest possibility of tighter control, we are moving forward in getting TJ pumping. Everyone has warned us that the pump is trickier, but I didn't think for a minute it was beyond my comprehension.

Until the nutrition meeting. Knowing that we were at Joslin for a pump education meeting, the cute, perky nutritionist we met with launches quickly into carb counting lesson with instantly starts my head spinning. There are equations. There are parenthesis, subtraction, and division. I'm sweating. I know the material in the parenthesis needs to be completed first. I can't really divide, but I can use a calculator with the best of them. We do a few equations and I'm back on track, feeling good. I can do it.

Then, she launches into correcting for a BG is that below target, while also giving food. The concept I get - because he is below target, we need to subtract a little insulin. But, ultimately its the algebra that gets the last word. There are negative numbers, and there is division. In a full on panic, I decide to watch, pretending to get it. I'm nodding, I'm listening. I'm back in 10th grade math - totally LOST. HOW did she get a negative answer. WHY isn't there a negative number showing up on the calculator. I sneak a look at Tom. I can tell he gets it. I, on the other hand, am ready to cry.

So...not wanting to reveal my stupidity, but wanting to pass the upcoming pump test, I finally get up the nerve to raise my proverbial hand:

"Um, OK - it seems to make sense, but you said negative..."

She cuts me off - "yeah, negative - it's less."

I nod, but I'm still lost..."but, that number on the calculator - it looks positive...there is no negative sign."

"Well..." she starts "I just didn't put in the negative sign, but you know its negative."

In my mind I am screaming...HOW do you know???? And then, from somewhere in the depths of my creative, not at all mathematical mind, comes the answer. A negative divided by a positive is a negative.

Thank you, Mr. Kazowka!

Exhaling

At TJ's last endo appointment we took a (small) beating from Dr. W for failing to:
a) control TJ's numbers tightly enough and
b) call in to Joslin when things weren't working.

Both Tom and I had began to frustratedly resign ourselves to crappy numbers, but, as so clearly illustrated by his A1C of 10 (YUP - 10!) we have to buck up and deal a little better.

And, we have. Already in the first week after the appointment we saw some positive changes. Then, blessed by God Herself we had a snowday last Monday. I finally had the time I needed to gather all the data and give Deb a call. Now, for one whole week we have been seeing awesome numbers!!! We are making nightly corrections, so the Levimir clearly needs an adjustment, but we both feel like if a correction shot in the middle of the night is all it takes, well then, bring it on. (Easy for me to say since Tom gets up with him every night!).

Regardless...I'm so glad to see good numbers for a change, and I can't even begin to describe what a different kid TJ is when he actually feels good.

I'm just a boy in the world...

For months now, Thomas has been totally cool with being diabetic. He came home from the hospital calling himself diabetes boy, adapted to BG testing and shots in about one minute, and NEVER complains about diet, shots, being low - nothing. No matter how much Tom or I struggle, worry, and stress, Thomas just rolls with the punches. He truly is amazing.

Last Friday was Joslin - a marathon visit filled with nutrition, endo, and chats in the waiting room and at the lunch table with other "diabetic" families. The stress of trying to figure out what we are doing wrong (so much!!) and what might work best for TJ was a lot, and the carry over has lasted all week.

Maybe it was the book I had read TJ about diabetes, or all the talk about Camp Joslin, his terribly high numbers, his atrocious A-1C's, or maybe he is just as done as we are. Maybe it was the persistent and tiring low last night while friends were over. Or maybe it was tonight, watching all his friends and classmates eat popcorn and cookies at the PTO "family movie night" while he just sat and watched (I hadn't thought to bring the insulin - bad mommy!). But tonight, staring not one but two bed-time shots in the face, TJ announced that he "wished I never got diabetes."

And as if the stake wasn't already far enough in my heart, he followed it up with: "I just want to be a normal boy without a disease."

I wish he could see how much more he is than normal - how amazing, loving, smart, and insightful he has become. It's hard to see the good in diabetes much of the time, and I know he has always been the rock-star he is today, but sometimes I see how diabetes has shaped him, even in such a short amount of time, and that part I don't hate.