Our Walk

Yesterday was our first JDRF Walk to Cure Diabetes. Yes, I cried. Only once. Okay, I also teared up another time. My friends were a little worried about me because they're not used to seeing me get emotional, but hubby knows I am capable of opening up the water works - even if it's a just a little drip - every once in a while. As a D-Parent, it can be a little overwhelming to be surrounded by thousands of people who, in one way or another, live with Juvenile Diabetes every day.

But, to be completely honest, what got me choked up was seeing all of the apples and bananas and crackers - boxes and boxes and boxes of them - sitting out for anyone to grab. Yeah, lots of folks grab 'em because they appreciate a free snack, or their littler ones are a bit peckish and need a snack. But, these, really, are "low stations"...quick carbs set out for any diabetic who may be getting low and needing some emergency carbs (not that any parent of a diabetic child would ever leave the house without an emergency snack). But, in this particular gathering, carbs are love, and there was plenty of love to go around. Oh, and there were free sugar-free treats as well :)

The Grand Stand....

"THANK YOU" to all of the sponsors and volunteers who made this happen!

So, after checking in and picking up our bushel of t-shirts, we wandered around a bit. They had a zumba instructor lead our warm-up.

"Let's all Zumba!"

T-Bear, Miss Christin, and Sydney Zumba-ing.


Big J: "Nope. Ain't zumba-ing."

One of the greatest things about this event was seeing all of the team t-shirts. Some teams were little, like ours (we didn't have t-shirts this year). Some teams were huge, and all coordinated and everything. Most team shirts were pretty straight forward, but some were really clever.

One of my favorite t-shirts.

I wasn't able to get a good shot of my other favorite; the "periodic table of diabetic elements" on the front...and "The only Matter that Matters is a Cure" on the back. Also, the "Pirates of the Cure-abean" was kind of clever. Though, I'm thinking "Pirates of the Cure-a-'Betes" might be our team motto for next year...
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So, once we noticed a huge hoard of folks all walking down the road, Team Thunder Bear joined in and pulled up the rear.

Papa Bear pulling Sydney in the wagon, BooBoo on his cycle, Nic hoofing it, and BroBear on his scooter.

The Walkin' Crowd.

Gets me all weepy.

T-Bear scootering.

Papa Bear scootering.

Our official Team photographer, S.

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One of the other things that got to me was S's comment, something to the effect that, with thousands of people showing up to this event, "You can't tell which ones have diabetes, and which ones don't. They all look so happy and healthy." In some ways this is a really great thing. Our kids with Juvenile Diabetes are, for the most part, happy and healthy, which every D-Parent is incredibly grateful for. And, at the same time, this appearance of health makes it difficult for others to understand how much time, effort, and heartbreak goes into keeping each one of these kids "happy and healthy" on an hour-by-hour basis. It's exhausting. At times it's all-consuming. And, we do it every single day, day after day, hour after hour, while doing our best to maintain a semi-normal family and personal life. But, all of us are doing it every day. Every single day. And knowing that there are so many of us trudging along in the same direction...well, that makes a world of difference to this particular exhausted D-Mom.

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But, back to the Walk. All of the kids did really great. T-Bear started getting overheated in the second half, which always makes him spike. We pulled off on the side, sat down in the shade, and took a number. He was high - in the 250's - so I gave him some water and we rested for a bit. Giving him insulin at this point, on the tail of physical exhertion and without a high-carb, fat-and-protien-balanced meal would be dangerous, so we had to wait it out and hope to flush out the excess glucose with lots of water. Being at the very tail-end of the Walk Dragon, we had a couple of police officers following us close behind. Since we were clearly having some difficulty, the officer in the car asked if we needed a ride.

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Heck yeah! So, T-Bear, Christin, Sydney and I piled into the back seat. Wow. That's really not a pleasant place to have to ride. It's tighter than flying economy class, and the seats are hard formed plastic. So glad we weren't handcuffed.

View from the back seat of the squad car.

Yes, T-Bear was asking all about the video screen.

Once we caught up with Jeff and the wagon, we all piled out of the police car (having someone else opening the door from the outside), and were able to finish the walk.

Portions of Team Thunder Bear at the finish.

Okay, not technically at the official finish, but only a few yards from it.

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While some of us rested in the shade and rehydrated, the kids wanted to visit the bouncies again.

T-Bear on the bungie bouncie thingie.

BroBear on the bungie bouncy thingie.

I really don't know how to wrap up this particular post, except to say that we definitely want to do it again next year, we definitely want a bigger team next year, and Papa Bear will be in charge of our sure-to-be-brilliant team t-shirts next year. We may not be the most glamorous, well-put-together D-Team among the hundreds (thousands?) of Walking D-Teams across the country, but, hay, we all showed up and participated. And that means EVERYTHING to this very tired D-Mom.

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So, I have to send out one more HUGE "Thank You" to everyone who supported us in this year's walk. And, I'll try to be a much better fund-raiser and Team Captain next year...I promise!

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Many, many blessings to all of you,

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Mo.

Two Weeks

The JDRF Walk to Cure Diabetes is in two weeks. Our first walk since T-Bear was diagnosed. I’ve already written about why we’re walking. And I’ve written our diagnosis story, and about what it's like to live one day Diabetes. Now I’ll let someone else talk about why we’re walking. Why we’re ALL walking. The thousands of people all over the country who have signed up and raised funds and showed up to Walk together. Take a minute to read “Working with Superheros” by Jilsinger8 (thanks Hallie for posting this!). And, if you haven’t already, please consider sponsoring a member of Team ThunderBear in our upcoming Walk (see panel to the right).



Working for Superheroes

I’m starting to feel that I chose my career because of I’m in awe of superheroes.

So, tell me, Reader…when did you last talk to a superhero? I mean, the real deal? And I mean superhero. Those with powers beyond human. Well, I work with superheroes every day.

As an employee of the Juvenile Diabetes Research Foundation (JDRF), I have the unique opportunity to work for people who spend every minute working to save lives. And they have powers.

As an outreach manager, it’s my job to support these heroes in their super endeavors. So, I come to work, I learn something, I share what I’ve learned, I speak to groups, I speak to individuals, I host meetings, I go to meetings, I plan events, I execute events, I create materials, I get on the phone, I write countless emails, I go home and read, read, read. I read on managing type 1 diabetes, on clinical studies, on historical research data, on this and on that. What I read tends to repeat itself in different publications, but I still won’t remember everything I read. I read and try to keep everything locked and loaded for the next phone call or email from a superhero, but I can’t. And other things are starting to fall out of my head. I forgot my phone number the other day. See, I’m just human.

A parent of a child with type 1 diabetes is a superhero, and I have accumulated some hard evidence to prove this. First of all, they save lives. And not like a doctor or soldier saves lives. Every day they wake up and must save their child’s life. They must keep their child breathing every day. I can’t imagine how exhausting this is. And they don’t get vacations. They don’t even get sleep!! Diabetes (the villain) never sleeps! So parents can’t either. They don’t even get to rest at night. They gotta keep working.

And like superheroes, they get plot twists. Except, some fictional superheroes have the luxury of having a stupid arch-enemy, one who spills the plot and their whole evil scheme because they think they’ve won. Diabetes is a smart enemy. Parents are always guessing what diabetes will do next. And the formulas they have learned to battle diabetes with might not give them success all the time! Diabetes can hit them with its weapons of high and low blood sugars at any time no matter what they do! But they keep on working, adjusting their tactics. No matter what.

And these formulas! That is why they have superpowers. I have read all about carb ratios, and insulin sensitivity, and bolus doses and basal rates. I have read about all the factors that can attribute to high and low blood sugars. I read about effects and phenomenons. But to remember ALL the ratios, ALL the factors, ALL the rates, ALL the carb counts…AND…ALL AT ONCE?!?!? ALL THE TIME?!?!? Ya gotta have superpowers. I’m not just saying it because math and I don’t get along, I’m saying it because you seriously, have got to have superhuman capabilities.

So how can I work for superheroes who have superpowers? If I can provide them any weapons to use against the enemy, I’ll do it. The greatest weapon available is knowledge and each other, and both go hand in hand. Every family diagnosed needs a medical team to give them tools, to guide their moves and to teach them how to develop their powers. Then, superheroes need other superheroes to share trade secrets and to motivate each other. If I can bring superheroes together, or I can give them information they didn’t have before, I have done my job. But, parents shouldn’t have to have this burden of having to fight every day forever, and as a child is diagnosed in our JDRF Chapter every day, another parent must take that burden on. So, I will work to vanquish the enemy for good and throw weapons to our superheroes in the meantime.

Also, as cool as being a superhero may seem, they got their powers for awful reasons. An enemy attacked, and they had to either work at developing their own powers or lose what is most precious. So, these parents have had to learn things they would never wish for other parents. Like how to hold your young, newly diagnosed child tightly and in just the right way so they can’t squirm out of your embrace while you steady the needle and try to block out the pleas of “Don’t do it, please don’t do it, it hurts, it hurts.” Or looking at your teenager with weariness of heart in their eyes whisper under their breath, “You don’t get it ” all the while you pray they never, ever have experience your kind of fatigue. Your fear.

Just like Superman gets his strength back from the sun, so do parents get their strength from good days, from the successes. When their kid gets to play with their friends and enjoy a sport. When they ace that test! When they see their seven-year old show another kid how they test their blood sugar. “See, and then I put a drop of blood on here, and it tells me how much sugar I have! Cool, huh?” When they give themselves a shot or change a site by themselves. No tears. When parents witness how mature their child has become, how strong, they often tell me, “I don’t know how they do it! I know I couldn’t do it.” But I’ve figured it out, yes, me, the layman. These kids, wise beyond their years, are strong because like all kids, we emulate our parents. Parents DO do it. They live with diabetes every day and the strength they have as superheroes is copied by their kids. So superhero parents – they get it from YOU.

So, yep, I get to work for superheroes. It’s a pretty awesome job. Just yesterday I was on the phone with a superhero mom telling me how awesome her daughter is, and how strong she has become. I know I’ll never get it, I mean really get it. Unless sometime in the future a doctor comes out to the waiting room and tells me my child has type 1 diabetes, or tells me that I now have type 1 diabetes, I won’t truly understand this brand of superheroism. But, I’ll go home tonight, I’ll pick up one of two books I have on type 1 diabetes, one published in 1994 and one this last year and read up. Maybe I can find something of interest to superheroes.

Why We're Walking

Because I can’t bear to hear T-Bear ask one more time, “When will the cure come?”

I’m not a big participator in large events, and I’m certainly no fundraiser. But, this year our family is participating in JDRF’s Walk To Cure Diabetes, and I am our Team Captain. I put on my Big Girl Panties, got us registered, and have begun sending out invitations to friends to join our Team, as well as pleas for sponsors. So, “Rah, rah, rah!”

If you’ve been following our family’s blog since T-Bear’s diagnosis over a year ago, I don’t have to tell you why we need a cure for Juvenile Type 1 Diabetes. I don’t have to tell you why I’ve shoved myself way out of my comfort zone to build a Team for the Walk and to collect donations for JDRF. You’ve all been there with our family as we’ve gone through the roller coaster ride that is caring for a child with Type 1 Diabetes. But, if you’d like a gentle reminder, or are a newer visitor who hasn’t yet heard the tale, our Diagnosis Story is here. And, here’s what a typical day with Diabetes looks like for an active family.

Our family would deeply and genuinely appreciate your donation of any size, just as we deeply and genuinely appreciate all of the love and support we have received over the past year-plus. Researchers all over the world are working tirelessly to find a cure, and it’s up to us to support them in their work.

So, one day, when T-Bear asks me one more time, “When will the cure come?”, I can tell him “It’s here now.”

Living Math

Among “relaxed”, “eclectic”, “unschooling”, and other non-traditional homeschoolers (ain't that a fringe-of-the-fringe group), there seems to be a general predilection for “living math”. That is, allowing kids to learn basic mathematical concepts within the context of everyday life, rather than trying to drill formulas and procedures into their little heads and hope they stick (the formulas and procedures, not the kids). This is pretty much the approach we’ve taken toward math, mostly incorporating a lot of kitchen math and “let’s figure it out” responses to questions. But this year, the term “living math” took on a whole new meaning for me, as T-Bear’s T1 care requires a fair amount of mathematics to be effective.

I happen to be pretty comfortable with numbers. I took four years of “advanced” mathematics in high school and did well with it, and I was a bookkeeper in my former life BC (before children). It took me a couple of months PDx (post diagnosis), but it finally occurred to me that when T-Bear’s diagnosing endocrinologist asked about my education, one of the things he was probably probing about was the level of my mathematics skills. Since it came easily for me, I guess I didn’t really stop to think about that too much. After all, I had a few other things to think about at that time, and for several months thereafter.

But, when I picked up an algebra workbook for myself at the beginning of our homeschool year and worked on a couple of pages (that’d be “Inspire, Not Require”), it dawned on me that I had been using and applying basic algebraic rules to calculate T-Bear’s insulin injections. Correctly, which is kind of important. Then I began to think about other parents with T1 kids, and how well they were coping with the mathematics involved.

I happen to know a few adults who suffer from “math block”, who never really recovered from that one horrible math class in which they became convinced they would never be able to do anything remotely mathematical, and that conviction has stuck with them their entire adult lives. And, what a completely horrific nightmare it would be for one of those adults if their child had T1. If their child’s health, and possibly very life, depended on math skills that they, the parent, just did not have, and were convinced they would never have. “Sink or swim” does not even begin to approach the trial-by-fire that these parents must endure. It made me deeply grateful, once again, for the brain that I have. This little mass of cells that easily grasps and manipulates numbers on an intuitive level. It makes me weep just thinking of it.

Now, Brother Bear, because his heart is so golden, makes efforts to learn how to care for his brother. He goes through spurts where he insists on drawing doses for T-Bear (under my supervision), and insists that I help him learn how to do the calculations. Honestly, the math is still a little complex for him at this point, but whenever he shows up for another round, we go through the numbers together. Because someday, I know, it’s going to click for him. And, when it does click, it’s going to be with him for the rest of his life. Because his brothers life and well-being depend on it, and he knows that. THAT is “living math”. Literally.

So, for those who have never calculated an insulin dose (lucky souls), here is a typical day in the life of our T-Bear, by the numbers. Keep in mind, this is the “easy and flexible” insulin program, and there are many other programs out there. And, we're still on MDI (multiple daily injections), not a pump. This program requires more math, but allows for tighter control of BS, particularly for kids whose eating habits tend to be somewhat irratic. And, tight BS control is a good thing. A very good thing. Really, an essential thing. And, BTW, I don't guarantee all of my math is correct...just "close enough".


BREAKFAST:

Home-made pancakes:
2 c whole wheat flour = 46 g carbs
3 tsp baking powder = free
½ tsp salt = free
¼ c sugar = 12 g carbs
2 eggs = free
2 tsb oil = free
1 ¾ c milk = 21 g carbs
Total carbs per batch = 79 g carbs, yielding 4 cups of batter
¼ cup batter for one small pancake (4 c / 16) = 4.9 g carbs
2 pancakes = 9.8 g carbs

¼ cup syrup = 53 g carbs (really….wow…look at THAT compared to the pancakes it goes on)

1 egg, scrambled = free

1 c milk (to drink) = 12 g carbs

Total breakfast carbs = 74.8

Breakfast dose:
Pre-breakfast BS = 101 = no correction needed
Meal = 74.8 g carbs / 15 (carb/insulin ratio) = 5 units
Total breakfast dose: 5 units fast-acting insulin


LUNCH:

Sub sandwich from Jen's NY Deli (park day):
6” sub bread = 48 g carbs (thanks, Jen, for looking that up for me)
Turkey, ham and cheese = free
Mayo = free
Lettuce & tomato (which he picks off) = free

Pkg potato chips = 23 g carbs

Bottle of Crystal Light drink = 0 carbs

Lunch dose:
Pre-lunch BS = 163 = (163-100)/50 = 1.25 correction
Meal = 71 g carbs / 12 (carb/insulin ratio) = 5.9 units
Total lunch dose: 7 units fast-acting insulin


AFTERNOON SNACK:

Apple (small, but have to guess exact carbs) = 15 g carbs
Peanut butter = free

Snack dose:
Pre-snack BS = 85 = no correction needed
Meal = 15 g carbs / 12 (carb/insulin ratio) = 1.25
Total snack dose: 1 unit fast-acting insulin


SUPPER:

Italian Soup:
1 box organic tomato soup = 4 servings x 16 g/serving = 64 g carbs
1 jar organic marinara sauce = 4 servings x 42 g/serving = 168 g carbs
6 oz elbow macaroni @ 2 oz/serving = 3 servings x 42 g/serving = 126 g carbs
1 c frozen vegetables (don’t count, ‘cause he’ll pick ‘em all out)
Total pot = 358 g
Portion size (approx 1/5 of pot) = 71.6 g carbs

Fresh French bread (guestimating ‘cause there’s no nutrition label) 2 slices @ 15 g per slice = 30 g carbs

Supper dose:
Pre-supper BS = 75; anything under 80 requires correction, so approx 10 g carbs free
Meal = 101.6 g carbs – 10 carbs free for correction = 91.6 g carbs / 12 (carb/insulin ratio) = 7.5 units fast-acting insulin


7:00 pm = 10 units Lantus (slow-acting, 24-hour basal insulin)


BEDTIME SNACK:

Not hungry, so doesn’t have a snack (thank goodness)

Bedtime dose:
Pre-bedtime BS = 80; needs to be over 100 before sleeping to avoid overnight lows (we really do NOT want to go there, 'cause it can involve seisures, stabbing with glucagon, and calls to 9-1-1), so force down one cup of milk; no fast-acting insulin needed.


So, that’s kind of it. A day in the life of T-Bear, by the numbers. Thank goodness for math, and for a brain that can do it fairly accurately.

PS: BTW, since I drafted this article, T-Bear's insulin/carb ratios have been tweeked. Just when I get all the numbers memorized (which is NOT my strong suit), they get changed. One more opportunity for growth, I guess.

PPS: One of the things I am deeply and daily grateful for is NO overnight lows. At least I can sleep at night knowing T-Bear is okay. Most nights. I weep for the parents who have to test their kids' BS at 2:00 am every night and correct, just to keep them okay. Juvenile Diabetes is a living nightmare for too many families. We need a cure NOW. PLEASE help if you can. JDRF.