Raising the Next Generation of the DOC

"Mom?"
"Yes?"
"I'm going to Google 'Is the Tooth Fairy real'."
------------------------------


Really?  Did I really have that exchange with my 8 year old?

Yes. Yes I did.

The Internet is just going to be a part of life as she knows it.  She'll never know the joy of turning on the radio, popping a cassette tape into her boom box, keeping her finger on the record button for hours, and the glow of accomplishment that comes after capturing her favorite songs for a remix tape.  She probably won't ever dial a rotary phone...or speak on a phone with a curly cord that keeps getting tangled, for that matter.  There's a good chance she'll never dig through a classified section of a newspaper, only to end up with black ink all over her fingertips.  Good grief, she'll never even have to deal with dial-up while listening to the modem connect (or not).

I'm not ancient or anything, but let's face it:  The Internet has been a game changer.

Next to her insulin pump, connecting to the Diabetes Online Community has been the greatest factor in revolutionizing my journey, as a parent raising a child with T1D.  The friendships and connections I've found are invaluable.

When Sugar began asking how she'll be able to keep in touch with the friends she makes at diabetes camp and the Friends For Life Conference, I realized that she was going to need an email account.  In other words, she was going to need a way to start tapping into the outskirts of her own DOC.

After doing some homework, I decided to set her up with a Zoobuh account.  I love the amount of parental controls Zoobuh offers, especially the ability to approve all incoming messages before she sees them.  There won't be any spam making it's way into her inbox, ads for "whatever" scattered all over her screen, or inappropriate language/email conversations being exchanged.

She's been able to test out her new email with a few pals, and I can already see a few budding DOC connections of her own...

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

Tell me those email exchanges don't have "DOC" written all over them!

PS -- Check out this very awesome picture, drawn by one of her DOC emailing pals.

(The same one from the email above, who has been as low as 47 mg/dl.)

Transforming Lives - Closing Thoughts

Last weekend's Transforming Lives conference was awesome!  It was apparent through every detail that Lawren and the rest of our JDRF chapter poured their heart and souls into making the event a success.  For more than a year, this team worked to ensure our community would have access to a top-notch panel of experts armed with relevant information, presented in a prime location.  From structured children's activities to dietary accommodations...from the "Low Station" to the exhibitors...from the vast array of topics to individualized agendas, each attendee was treated to a wealth of support and knowledge from every angle.

After almost seven years of managing Sugar's sugar, I have to admit that I have fallen into a couple "traps".  For the most part, I have decided that life is too short to spend it hoping things I have no control over could be different.  While this viewpoint hasn't changed, I must admit that it felt good be encouraged by the current research intended to continuously improve the quality of my daughter's future.  It was comforting to reflect on how far technology has come, and exciting to think about where it is going.

I've also fallen into a shallow trap of feeling like there isn't anything "new" to take in.  Lows?  Highs?  School?  Pumping?  Carbs?  Been there.  Done that.  And I'll do it again tomorrow.  Somewhere along the line, I've forgotten how much you miss when you stop looking for something new.  I left last weekend with tidbits of knowledge that were either brand new or freshly reinforced.  More importantly, however, I realized (once again) that surrounding myself with friendship, support, and community is the best remedy for the stale ruts that have become all too familiar lately.

One of the highlights for me was the opportunity to meet Manny, Cherise, Bill, and Mike.  I've been blogging for about 4 years, and have connected with several of these names online for quite awhile.  Being able to introduce them to my husband, get some real-life hugs, and share their laughter was good for my soul!

When I first began learning about he DOC, I wasn't sure where (or if) I'd fit in.  As a parent without diabetes, I couldn't relate to the firsthand experience of managing my own blood sugars.  In this sport, I guess I thought of myself as a sideline coach, and really wasn't sure if I'd be welcome in the player's circle...but, fortunately, that hasn't been the case at all.  I'm completely honored to have been embraced by such amazing people.  These adults teach me something new everyday -- about creating a life of joy, making memories, and not allowing diabetes to get in the way of our dreams.

I've been surrounded by kids with their meters, syringes, and pumps.  I've tested Sugar alongside other parents at least a zillion times -- but it was a unique experience for me to hang out among these guys.  Big kids, all grown up -- taking charge of their diabetes -- beep, test, beep.  Regardless of how the insulin is getting in, at the end of the day we're in the same family.

I really want to send a special thank you to the adults with diabetes EVERYWHERE who have taken the time to hear our story.  Thank you for connecting with me, sharing a part of yourself, and allowing a glimpse into what the future could hold for my daughter.  Thank you for reminding me that there's no need to rush -- she'll grow up soon enough.  Thank you for empathizing with my reality.  Learning to let go and eventually transferring control of her diabetes care is, perhaps, on of the hardest challenges I'll ever face.  Thank you for sharing my joy, and acknowledging the victory for the little things -- such as staying after school independently for Drama Club.

I love you all.

I guess the only disappointment about the conference would have to be the attendance.

Amazing speakers.
Amazing location.
Amazing accommodations.
Amazing exhibitors.

Creme de la creme experts, lunch, children's activities, awesome information booths...all in one incredible place....

For *FREE*.

And only 42% of people who registered showed up.  There was a wait list of families who wanted to attend, but the tickets were gone when they were ready to register.

Beyond disappointment, this part just makes me really sad, honestly.  I guess it stings my heart a little more,  because I know firsthand how hard our JDRF team worked to make it happen.  I know their loved ones worked alongside them to support our conference.  I know that most of the volunteers who worked the event don't even have a connection to T1D...these people gave up a gorgeous day with their own families to make this event possible for ours.  I know my girls were looking forward to seeing friends who didn't show up, and meeting new friends they may now never know.

Sadly, the lack of participation, could potentially inhibit our chapter from ever being able to host something like this again.

Let's hope that won't be the case.


Part 1:  Transforming Lives - Overview 
Part 2:  Transforming Lives - Notes
Part 3:  Transforming Lives - Closing Thoughts

And This One Time, at D Camp...

I walked back to the car feeling a bit lonely.

I glanced at the empty seat behind me, and chuckled at the image in my mind of a little girl bouncing side to side, a little offbeat.

I drove home in silence, but kept hearing the sound of her voice telling me the same silly joke over and over again.

I wasn't exactly sure what to think about.  I wasn't looking at the clock, and thinking back to the time of her last bolus.  I wasn't anticipating the next number.  I wasn't thinking about how many carbs would be found on her dinner plate.

I was just driving home.

Driving home after dropping her off for a weekend of diabetes camp.

I kept wondering how the staff would know that her BG at midnight the night before was randomly 77.  I wanted to remind someone that she has celiac.  I wanted to tell someone that cereal for breakfast is a bugger, and to be on the lookout, because she's bound to have a low 2 hours later -- just because.  Because I know, that's why.

Instead, I signed her in, watched her disappear behind the dark tinted bus windows, and off she went.  There wasn't an orientation...an opportunity to meet and greet the camp staff or ask questions.  It was an assembly line of paperwork, and then...farewell.

At first, I was really uncomfortable with this process.  I wanted to grab someone -- anyone -- to give them a quick rundown of every last detail regarding her management as I know it.  I wanted to download my brain, and hand them a "Manual of Sugar".

But then I realized that this camp weekend wouldn't ever happen if every parent handed the camp staff their child's manual.  A Q&A session had the potential to turn into a debate. Dragging it out could lead to an emotional breakdown -- for both the parents and the kids. This weekend needed to be more about CAMP -- having fun, making new friendships, and trying new things -- and less about diabetes -- carb counts, fingersticks, and insulin.

I needed to be the grown up.  I needed to put on my brave face, and trust that the past 6.5 years had prepared her for this moment.  I needed to exude complete confidence in her ability to do this, and the camp's ability to come alongside her to fill in any gaps that may exist.  I knew she was watching me.  I didn't want her to feel the slightest twinge of guilt or worry.  If the emotions swirling inside my heart broke through to the outside, it had the potential to set a negative tone for the rest of her weekend.

So I hugged her and blew kisses through the window, even though I couldn't see her.  I smiled, and waved, and stood in the parking lot until I couldn't see any sign of the bus any longer.

I spent the next 2 days with the camp itinerary close, constantly to checking see what she was doing at that very moment:  fishing, horseback riding, arts and crafts, archery, BG checks, meals and snacks, a magic show and carnival fun, bunking with friends...

I sat down to blog a million times, but couldn't concentrate.

I stalked Facebook and Twitter for any sign of camp pictures.

I knew she was probably having the time of her life.  

And she did.

She came home with stories about shooting a bow and arrow and popping a yellow balloon, playing cards with her friend after "lights out", having her face painted like a dalmatian, star gazing, riding a horse named "Little Man", decorating a birdhouse, sugar free cotton candy (I had no idea that was possible!)...and on, and on, and on...

I didn't ask her anything about diabetes.  Honestly, I didn't really care.  I wanted to hear her stories, see the sparkle in her eyes, and allow her childhood excitement to wrap itself around all of us.  She was energized, motivated, and deliriously happy.  She came home ALIVE in body, spirit, and mind.   Blood sugar specifics really didn't matter...all that mattered was that she had the time of her life, and couldn't wait to do it again.

This entire camp experience was available FREE OF CHARGE (!!!) to the first 20 applicants in her age group (8-11) who completed the zillion-page registration packet in its entirety, returned it (including several forms requiring physician signatures), and provided copies of a few necessary items (such as immunization records and insurance cards).  The packets had to be IN THE OFFICE...not postmarked by a certain date...literally IN THEIR HANDS to be counted. I hustled like a mad mama.  I think we were #19....two weeks after the initial email was sent back in August.

Meters, strips, insulin, sources of rapid glucose...it was all provided.  In addition, a complete gluten-free menu was offered for all meals and snacks.  No one was left out (or expected to eat lettuce instead) when it came to cookies and milk before bedtime.  We literally packed clothes for the weekend, sent along 3 sets of site change supplies, and that was it.  Everything else was taken care of.

This weekend would not have have been possible without the selfless volunteers who chose to spend their Veteran's Day weekend making sure the kids were safe, and camp was running smoothly.  Doctors, CDE's, JDRF Staff, and young adults living with T1 from the community pulled together to create a most memorable experience.  In the end, there was a ratio of 1 adult for every 2 children.  That's downright amazing, if you ask me.

I'd like to express heartfelt gratitude to Camp Soaring Eagle and our JDRF Desert Southwest Chapter.  Together, these organizations coordinated an incredible camp experience that incorporated diabetes management, gluten-free needs (I think there were 4-5 campers with celiac), and a unique opportunity for children to surround themselves with other kids who face the same challenges.  How special it must have been for my daughter to feel "normal", instead of "different" for the entire weekend!

Thank you, as well, to the companies who donated supplies for the weekend:  Eli Lilly, Sanofi Diabetes, LifeScan, and NovoNordisk.  Your generosity speaks volumes about the kind of people behind your company.  Thank you from the bottom of my heart.

She's already asking to attend the week long diabetes camp next summer!  This experience was the perfect foundation for many camp memories that are yet to come.  I can't think of a better way to have kicked off World Diabetes Day!

 

Um...About Last Night...

Yeah.

Diabetes, I want to talk to you about last night.

You see, yesterday I blissfully told all my pals how considerate you were during our family's day trip to Sedona.  I shared pictures of my girls playing in a creek, and reminisced about the last time we had spent a day in that area.

And I quote:

Today diabetes was just a blip on the radar.  Today it didn't take much attention, it didn't creep up in conversations, and it didn't misbehave.

You playah.  You weasel.  You...you...ARGH...you SCUM.  (Too much?  Sheesh. Where's Reyna when a mama needs raging EFF-FILLED tongue lashing?)

You schmoozed your way into a few compliments, and then showed your true colors when no one was watching.

You. pathetic. disease.

We had pizza for dinner.  What better way to end a beautiful family outing?  And...not only did we have pizza, but the girls were granted apple juice to drink!  


(This is a rare treat at our dinner table.  Over here, you pretty much get two choices:  water or milk.  Tink happened to be with me when we passed a display of apple juice on sale at the grocery store...being that it's Fall and all...I was swayed into picking up 2 bottles because I couldn't resist her "PULLLEASE MOMMY?" and puppy dog eyes.)

So, yeah.  Pizza.  I realize that pizza is a thorn for many T1 peeps, but it really hasn't been an issue for us.  Last night, however, I decided to give her a combo bolus because of the apple juice.  I wanted to slam that juice with 75% of her insulin, and then spread out the last 25% over 2 hours to compensate for the protein/carb balance of her pizza.

Test.  Bolus.  Wait 20 minutes.  Game on.

Until she decided she wasn't hungry.

Really?

So there we are...Tiara and Tink both pouring out their sweet little hearts during our family's dinnertime prayer...

It took every ounce of strength I had to keep my hands to myself, and not dig out her pump to stop the combo...all the while, my beautiful, angelic, sweet, tender-hearted children continued praying...on, and on, and on, and on...

AMEN ALREADY!

She got A LOT OF INSULIN, and now she has decided that she's NOT HUNGRY.

A-to the-M-to the-E-to the-N!

I need to think.  I need to assess the situation.  I need to decide if I should make up the carbs some other way.  Is she just saying that because she wants to see the rest of her show?  Is she just tired?  Is she really not interested in her pizza?

Is this REALLY that big of a deal?  Maybe I'm just tired.

As soon as the prayers were finished, she assured me that she wasn't hungry.  I stopped the combo, she drank her juice, ate some grapes, and that was that.

And then I blogged about our wonderful day.

BUT THEN...

About 2 hours after the fact she ate her pizza, and I didn't realize it until she was finished. She figured she still had enough insulin active, so she gobbled it up without saying anything.

For Pete's sake.

I straight up bolused for it, they picked out a movie, piled themselves on the floor with their pillow pets, and that was that.

Until midnight, when she was 250.

And 3 am, when she was 300.

And when she woke up at 230.

Anyway, Diabetes, I just really wanted to call you a few names, that's all.

She went on to have a great day, despite your pizza charades.

She even hula hooped.

So take that.

PS - Don't forget to VOTE for Candy Hearts!

West Coast D Mamas: Meeting Meri

Do you know how long it takes to drive from from Arizona to Washington with three little girls who have three little bladders; including one child with diabetes, and another prone to motion sickness?

A long time.

Fortunately, my husband has some family who live around the half way point (give or take a couple hours, but, really, who's counting?)

Which just so happens to be the same town where Meri and her beautiful family live.

Which just so happens to be the same town where my husband spent intermittent parts of his childhood.

Which just so happens to be the reason my husband's picture can be found in Meri's high school yearbook!

I KNOW!  How crazy is THAT?!?!?!?!?!?!?

It must have been fate that our paths would cross one day.  The stars were aligned just right :) I mean you DO know Meri, right?  Meri, who is always banging out inspirational, motivational blog posts?  Meri, who is raising 4 amazing boys...THREE of which have type 1 diabetes?

YES!!!!!  THAT AMAZING MERI!!!!!!!!!!!!!

So, anyway, after driving AAAALLLL day, we finally arrived.  Of course, we were up and out the door before dawn...so we were all still in our jammies.  There's NO WAY the girls and I could meet his family (AND MERI!) for the first time wearing PJ's after sitting in the stale car air for 14 hours, soooooo....we stopped at a grocery store a few minutes away to get everyone changed and freshened up a bit in the bathrooms.  We must have been quite a site lugging in a suitcase!  I'm sure management must have wondered if we were moving in.

But I digress.

On the way up, Meri stopped over for a quick hello before we set off on the rest of the road trip early the next morning.  When she texted me that she was on her way, my heart skipped a beat (Corny...I KNOW!).  A few minutes later, Sugar needed to get something out of the van, so we walked outside...and then I saw the headlights........and OMIGOSH........MERI was standing right in front of me!!!!  It was like a scene from a movie or something.  There were hugs and tears as if we had been friends forever...we both stood there and couldn't believe it was REAL!!!  She came in for a little chat and then was on her way.

Fast forward 2 weeks and we were back in town, but this time for a couple days.

On Saturday, Meri and her MOST FABULOUS HUSBAND, Ryan (Hi Ryan!), cooked up a wonderful breakfast and invited us into their home.  They scoured labels to make sure everything was gluten free, and prepared a feast fit for 4 royal princes and 3 royal princesses (and their parents).  I brought along some GF pancake mix and Ryan (the most awesome baker that he his) whipped them up while Meri and I chatted and chatted and chatted...because, you know, what else do moms do when they get together????

Sugar tested at their "diabetes station".  I watched as she analyzed everyone's plates to eyeball their carbs in the blink of an eye.  It was amazing.  Like she had a 6th sense that allowed her to remember which boy had how many carbs on his plate, who was coming back for more, and who still needed to bolus.  I even had the honor to sit next to her in her favorite blogging spot AND we broke out the laptop to peruse around online a little.  We swapped stories about meeting our husbands, each diagnosis, and laughed about how crazy it was that we've been pals online for 2 years.

It was seriously awesome.

Meri and her family are seriously awesome.

Meri's home is seriously awesome.

AND LAWTON IS SERIOUSLY AWESOME!

Here's some pics...but please forgive the camera phone quality...

Thanks for the memories, Meri.

It was a joy to meet you and your beautiful family!!!

PS -- Here's a recap of the Summer 2011 West Coast D Mama Meet Ups...

Meri in California

Chasiti and Joanna in Portland

Heidi, Chasiti, Denise, and Bonnie in Vancouver

Jen and Sarah in Seattle

Dexcom: 1st Grader

Around 9 am, I sat down at the computer to create a poster sized collage using the CGM pics I collected from the DOC.  I was excited to see them all together on one big page, and started the upload process smiling from ear to ear with anticipation.

But then one upload failed.  And another.

And a scattered few more.

And I logged out.

Logged in.

Started over.

Tried again.

I was running out of time.  I needed to have it done by 12:40 since I was scheduled to talk to all the 1st graders at Sugar's school, and help to answer their questions about "that funny looking thing" they see on her arm from time to time.

Eventually I decided I'd have to settle with what I could get uploaded and move on.

So I created my collage, and paid online.

As I was scheduling my pick up, I realized that I couldn't mosey up to the store closest to me.  I'd have to drive about 30 minutes instead.

A quick glance at the clock revealed that I'd need to pack up the 3 preschoolers in my care, throw together bagged lunches for them, and have them eat on the way to the store.  If every light, road project, and speed limit sign cooperated, I had enough time to make it there and back without a second to spare.

So off we went!

AND....when I got there, they didn't have the order.

Great.

I turned around to drive my brood back to school and called my local store on the way.  I begged and pleaded with the nice photo guy, and he gladly agreed to get me an 8x10 collage as soon as I could get the order entered.

Drop of preschoolers.

Home to place emergency order.

Drive to store.

Wait in line.

Hustle back to the school.

Sign in.

Scatter to the room, only to find three 1st grade classes sitting patiently, waiting for Mrs. Rose (WHO IS THAT?) to arrive. (Someone tell that lady to get her act together, would ya?)

All eyes were on ME.

Smile.

My girl was sitting at the front of the room, and she hadn't seen all the pictures before.  I walked in, and handed the collage to her....

And she was flabbergasted.

"Who are these people, Mommy?" she whispered in my ear.
I kissed her cheek and whispered back, "Well, they're some friends who wanted to show you that you aren't alone, because they wear a CGM too."

She held that picture...staring at each smile, touching the sensor images, and laughing at some of the funny faces.  For a few minutes she was suspended in her own little world.

Meanwhile, I talked to the kids about Dexcom and started fielding questions:

"Can you catch diabetes?"
"How did she get diabetes?"
"Can she go swimming with that on her arm?"
"What if the sticker falls off in the pool?"
"Can't you just jump in the water with her (reaches high over his head), hold Dexcom up out of the water, and follow her around the pool so it doesn't get wet?"  (gotta love 1st graders!)
"What would happen if she didn't go to the nurse?"
"Does it hurt when you put those things on her?"
"Does it hurt when she pokes her finger?"
"What will happen if her blood sugar is zero?"
"What will happen if her blood sugar is too high?"
"Can she come to my birthday party?"

-- and my personal favorite --

"Well, I'm not really sure this is a question.  I saw a commercial and it said that kids over 50 years old could call a phone number and they would send you the supplies to make diabetes go away."{cheers erupt from the room full of kids.}

Oh, my sweet, tender-hearted, little friends.

If only that were true.