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Imagine playing a game where you must check and track your score 24 hours a day, without ceasing. You must know your score when you wake and before going to sleep. When you are about to eat, and after you've eaten. When you are going to exercise, and when you are going to sit for long periods at a desk, in a car, on a plane. And often you must wake in the middle of the night to, yes, check your score.

Your score changes constantly, and despite having played this game for a decade or more, your experience sometimes (often) fails you, in that your strategy that worked last time doesn't always work the same way again.

How do you win this game? You maintain as consistent a score as you can, never going too high or too low, and your prize is to play all over again tomorrow. How do you lose? Well, score too high, too often, for too long a period, and you may be knocking years off your life. Score too low? Unless you bring the score back up, right away, well, it could be life threatening. 

As you may have guessed, this is no game. This is life with Type 1 Diabetes, with which I have lived, 24 hours a day, for just shy of 11 years.  And with which my daughter M has lived for more than 6 years -- since shortly after turning three years old. While I knew 26 years without Type 1, M has no memory of a time without the finger pricks, needles, carb counting, midnight lows, post school highs, and parental worry verging on hovering that is the routine of a third grader with Type 1.

But life does go on, and one manages. That what does not kill you makes you stronger, and all that (and like Monty Python's plague victims, "we're not dead yet!").  M exhibits grace and good humor while tackling her Spanish Immersion school, Girl Scouts, chorus and soccer, to say nothing of her open heart as a friend to many and big sister to two little brothers she adores.

But there are moments, when it gets to her. It often comes at bedtime, after an insulin pump change or a series of stubborn lows or highs, when M expresses her deepest frustration with her unfair burden. When she quietly voices the admission that she hates this thing, this life, which she did not choose and has never known differently. That she doesn't want to have Type 1 Diabetes.

As a father, my heart breaks at these moments. I try to comfort her as best I can, to make common cause by confiding how much I deeply, deeply hate Type 1 as well. I tell her that diabetes is the one thing, the only thing, about which we will tolerate, always, the use of bad words. Because diabetes is worthy of bad words, of cursing.

She is quiet for a moment, pausing in her tears. Then suddenly she stiffens up straight in her bed, locks eyes with me with all the steely determination a nine-year-old can muster, and pronounces diabetes: "Stupid."

M inspires me. I struggled against Type 1 for years before M was even born. Yet it has been her courage and grace in handling her own Type 1 burden has taught me patience, acceptance, and hope.

Patience, because that is required to make it through each day when one's pancreas just won't work as designed.

Acceptance, because at present there is no cure, and dwelling on "stupid" diabetes merely stands in the way of all that life has to offer.

And hope. What hope.  For the first time since the discovery of insulin a century ago transformed diabetes from a certain and immediate death sentence to a somewhat manageable pain-in-the-ass chronic condition that only occasionally kills, we are on the verge of a real revolution in diabetes management.

To be sure, I don't mean a "cure," at least if a cure is understood as a complete reversal of Type 1 and restoration of my bum pancreas to working order.  This may not come in my or even M's lifetime (see Patience and Acceptance, above).

But a revolution is coming nonetheless, in the form of an Artificial Pancreas, a set of medical devices that will automate the day-to-day, hour-to-hour, minute-to-minute management of Type 1 Diabetes. Such a device exists already, and has proven in human trials to be dramatically more effective at successfully controlling blood sugars in adults and children with Type 1. The same trials have shown it safer than any insulin pump currently on the market.

The hope this instills in me is almost unbearable. The fact that in just a few short years, M won't have to stop and remember to test, carb-count and administer insulin before eating cake at a birthday party. Or leave class a few minutes early to stop by the nurse's clinic before lunch. Or come out of a soccer game because her blood sugar has dropped to a dangerously low level.

In a very real way, the Artificial Pancreas will give M her freedom back - the freedom she knew for for only three years, and of which she has so very little memory.

But we aren't there yet - much more work is needed to get this miraculous biomedical engineering breakthrough out of the trial phase and into the hands of millions of Type 1 diabetics like M.  That's why I'm asking you to consider helping us by contributing to JDRF, the world's leading non-governmental funder of research into Type 1 Diabetes, and the driving force behind the Artificial Pancreas.

No amount is too small, but I hope you will consider giving as much as you can afford. Your donation will go far in helping M live a better, more fulfilling life while more successfully managing this "stupid" disease.

Type 1 diabetes is no game. But nonetheless, together, with your support, we can win at it.


-T

Looking back on 10 years...

10 years ago, T and I sat across from a Diabetes Nurse Educator - our heads were spinning. It was hours before T's bachelor party in the French Quarter and 2 days until our wedding. We got a one hour crash course in carb counting, medication, checking blood sugar, the doctor's cell phone number with instructions to call it every few hours and not to drink alcohol! His diagnosis: Diabetes 1.5 - not really type 2 or type 1. (We later learned that if it hadn't been our wedding weekend, they would have admitted him.) I can honestly say, it was one of the craziest times of my life! I still haven't ordered photos from the wedding- in my mind I can visualize a healthy looking groom but the reality in black & white photos are far from that. He was pale, skinny and his tux looks 3 sizes too big. The vow of "in sickness and in health" still makes me want to tear up.

For a year after, T starved himself on sugar free jello and low carb snacks to keep his blood sugar in range but it wasn't working. Thankfully, we moved to DC and the right tests were run that he was correctly diagnosed with Type 1 Diabetes. With that came a new management plan: insulin!

10 years ago was the start this wild roller coaster. I could lie to you and say that I'm the prefect wife to a type 1. But I'm not. I'm a control freak (shocking, I know!) and I've had to learn that diabetes just can't be controlled the way I want it to be. One plus one doesn't always equal two. Hypoglycemia happens and no, it's never convenient. Pumps fail. Meters and glucose can be left at home accidentally. I've learned that life just happens and you have to roll with it.

I'm looking forward to another 10 years to grow next to a man who is a daily role model for our Type 1 eight year old.

M Bear

When M was diagnosed back in 2009, we received a "Bag of Hope" from JDRF. It came with helpful booklets, meters, etc and.... 

Rufus, the bear with diabetes, and his storybook. 

He comes with a medical ID & colorful patches to show injection sites.

But given that M was 3 years and 48 days old... 

a boy bear wouldn't do.

On the way home from the hospital, we stopped by the craft store to buy Rufus a pretty pink dress.

Rufus became M Bear, the girl bear with diabetes.

M Bear quickly became a favorite toy.

She had daily blood glucose checks....

and insulin shots (check out the colorful syringes)...

and matching Halloween costumes. 

A the week before M started her insulin pump, M Bear was HUGE help! 

Like M, the bear received an multiple daily injections (MDI). But then after a few days, M Bear got an insulin pump and no more shots!

It allowed M at 3 years old to understand the difference between MDI & pumping. 

After that, selling the insulin pump was easy! 

(And the fact that it was a pink pump!)

On August 3, 2009, M got her last shot before breakfast and we celebrated! 

And we started the new adventure with pumping!

But every four years an insulin pump is out of warranty and it's time to go pump shopping.

I find the whole process like car shopping. You want to pick the right make and model that has the features that you'll need for the FOUR years! 

So that's where we are now... 

Shopping for a pump that will make my current 7 year old happy as well as my future 11 year old. 

It's not an easy task and M is anti- change. 

And when it comes to something she has worn 24/7 for the last 1460 days, change is out of the question.

This makes testing out new insulin pumps hard. 

( Unfortunately for M, her mother is unwilling to order the same 

make & model insulin pump she currently owns. )

But thankfully, M Bear doesn't mind trying out new things! 

On Tuesday, M Bear started a week trial of the Tandem t:slim. 

So far we are LOVING it! 

The touch screen is awesome! 

(more to come later on the t:slim thoughts)

And tonight, since M had a pump change...

M bear needed a pump change too! 

M was in heaven! It was the first time she had ever done a pump change. 

And since M needed a new Dexcom sensor tonight....

guess who is now wearing a CGM??

I'm learning that it come in handy to keep old, outdated diabetes supplies! 

And then she needed a BG check too.....

D360

I had this awesome idea of starting a D360 section.

Basically, you take a "day in the life of diabetes" photo EVERYDAY for a year.

Yeah, who was I kidding.

I'm good at taking the photos but then transferring them my laptop & uploading them on blogger at the end of the day seems to be more than I can handle in life.

Then I was like: I'll just do a weekly "Wordless Wednesday" post.

Yeah, on Wednesday's my Girl Scouts suck the life out of me....

So......

Here ya go.... I give you some photos.

437 Questions

I saw this meme on Facebook last week. 

This morning snuggled on the couch, my resident 4 year old started off the morning with a few questions....

Why does M have diabetes?

How did she get diabetes?

Why does her pancreas not work right?

Why does she check her blood?

How does the meter work?

Does it hurt?

What is insulin?

Why does M need a pump?

How did M get diabetes?

Why does her pancreas not work?

How did you know she had diabetes?

How long did she stay in the hospital?

What did they do to her in the hospital?

But why did her pancreas stop working?

How did you know she had diabetes?

I answered each question. 

He paused. I could tell he was thinking. 

Then came the questions that I knew he really wanted to ask...

C: Mommy? Will my pancreas stop working?

Me: I hope not. But if it does, it will be okay.

C: How will you know I have diabetes?

Me: Mommy will just know. Like I knew with M. You will start asking for more water and going potty all the time.

C: I hope that doesn't happen. I don't want a pump.

Me: I know, little man, Mommy too.

C: Know what? I better just drink lots of apple juice. Then I won't ask for lots of water and go potty. Okay?

Me: Okay, little man. Maybe just a little apple juice. 

C: Mommy?

Me: Yep.

C: Can I watch Backyardigans? 

lesson learned

I'm not a "what's your number?" mom.

 I don't ask M to test her blood sugar first thing when I pick her up from school. I trust that she can feel her lows and she wears a CGM. She often tests first thing after returning home because she wants a snack.

On gymnastics days, I pick her up and we head straight to the recreation center. She changes clothes, then we head to the viewing deck to watch current class and she eats her snack.

I'm not the best about carrying extra supplies. We mostly stay in a 5 mile radius of our house during the week. I can always run home. If we are going to out for the day, I'll toss a Vera Bradley makeup bag with extra everything into my purse. 

Last Friday, I kinda learned my lesson. 

We were already running a little late, she had 12 minutes to eat her snack and be on the gymnastics floor for class to start. 

I handed her the meter case and asked her to test. 

"Ugh, mom, I don't have test strips!" She holds up the empty black container.

REALLY!?!? For the life of me, I don't see why the aide doesn't replace it with a new vial when the current one is empty. But that's a rant for another day!!

"Okay, hand me your CGM."

90

"Do you feel low?"

"No, I feel fine."

I decide to give her the snack & not give her insulin to cover the carbs. She quickly eats her snack and is ready for class. 

This is the highlight of her week!

Just as I'm sending her down down, the CGM buzzes. 

78

Crap! She's now low. 

"Do you feel low?"

"NO!"

Thankfully, I have a small tube of glucose tabs in my purse. I hand her 4 and she inhales them.

"M, if you feel low TELL YOUR TEACHER. He will call me down. Have fun!"

I see her run on to the gym floor and her class starts warming up.

Three minutes into class: BUZZ BUZZ BUZZ! I look at her CGM

Under 55. 

@#$@!!!

Now this is where I totally forget everything I know about how her CGM works and the anatomy of lows. 

The CGM can be 20% off and 20 minutes behind. Plus, when there is a low it lags more. Often the blood sugar will already be back in normal range and the CGM will still show the blood sugar dropping.

But none of that mattered in the moment. I had no meter to test and I was watching her gallop back and forth in front of me.  She didn't look low but I didn't want to take a chance. 

I ran down the stairs and entered the gym. I called her over and give her the LAST 3 glucose tabs I had.

"M, do you feel low?"

"I SAID: NO!"

"Your CGM has you at 55. Do you want to sit out for a little bit?" 

I see the fearful look in her teacher's eyes.

"No! I'm NOT low. I don't want to miss it."

"Okay, listen to your body!"

She rolled her eyes.

And I decided to trust her. 

Trust that she knows her body and will feel the low. 

And pray! Lots of prayers!

I walk back upstairs.

"She doesn't look 55. Does she look 55 to you? She wouldn't be looking this good at 55. Right?"

Another mom gives me a strange look. 

I sit the CGM back on my bag and say another prayer. 

After a few minutes, I click the CGM to check her number. 

out of range

OMG! Seriously! 

Point taken. I will be more prepared!