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Wednesday, October 23, 2013

Living Words: In LIVEing Memory

12/09: She left that comment in response to a blog I posted about the frustration of getting Sugar's insulin needs tweaked just right, but knowing it was just a matter of time before I would have to start all over.
" might see me in a life preserver on those same waves..."

We rode many waves together, Shamae and I. She was always willing to listen, willing to encourage, and willing to share the muddy water. She didn't care if she got dirty in the process...if one of her friends was floundering in mud, she'd be the first to jump in -- and, before you'd know it -- the two of you would be laughing at the mess.

I've spent the past 3 days pouring over old blog posts and reading every comment of hers that I could find...not only here, but around the dMama Blogosphere...

7/09: The day we switched from Cozmo to the Ping. I realize an insulin pump may not be the most exciting toy for most of the world, but it's big stuff in this house -- and many other homes, too.  She was there for our transition...every step of it. She was excited when I was excited and frustrated when I was frustrated. Because that's what friends do, ya know?

12/09: {Mr. Rose, ehum. Stud.}

She always wanted to do something for others...she always wanted to include others. She had a heart for others, and set an example for the rest of the world in how to treat others. And she did complete that project, btw...

At first we just left comments and then emails; then our Sunday Chats...then we started texting. I hadn't texted much, if at all, prior to Shamae...and, it was because of Shamae, that Mr. Rose had to increase our data plan. True story.

We met for the first time in Vegas. It was an amazing get away. We had SO. MUCH. FUN. We were like school girls, cautiously exploring a new playground. You know the saying "What happens in Vegas, stays in Vegas." We stayed up until 2 am sharing secrets. Secrets we pinky-promised to take to our graves...

I had no idea then.

I had no idea that a little over 3 years later...she'd be gone. Promise kept.

We met again when our family drove from Arizona to Montana, and stopped for lunch in her cute little town. 

(Please forgive the old phone camera. Technology has come a long way!)

Shamae passed away in her sleep on October 20, 2013. My heart is heavy, sad for entire world. The world will never be as bright, because her light is gone.

10-20-09: Simple comments. Simple acknowledgments of others. Four years later, on the exact same date...silence.

11/09: Her words, when I lost a friend to the H1N1 flu virus in 2009.

Today, I want you to see from my words how special Shamae was.

I want you to know how thoughtful she was. How caring she was. How loving, fun, and full of life. I want you to know that she never judged me for things countless others have {i.e. pinky-promised secrets}. I want you to know that she never let an opportunity pass to tell me she was thinking about me. Sometimes she would randomly text me at weird times of the day just to say I had popped into her mind. 

She loved people. All people. She loved people who weren't the same as her. People who lived differently. People who saw the world from a different point of view. 

I know, because I was one of those people.

She loved deeply. She loved honestly. 

I can't believe she's gone.

Yet...I have hundreds -- perhaps THOUSANDS -- of her words written all over my heart. Years worth of words that can't ever be taken away.

Shamae will live on through the words she imparted to those of us who were blessed to know her. 

I miss you, Sham.


Photo courtesy of Jennifer Hill Photography
Shamae leaves behind a husband and three young daughters. A memorial fund has been established in her memory. You can learn more about Shamae's legacy by visiting her memorial page.

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Saturday, August 31, 2013

#StripSafely in the Midst of Crisis

We've been dealing with a private crisis.

I'm not going to sugar coat it...and I'm not going to talk about it either.

I haven't been around, but just know it's not you -- it's me.

Well, not really. I mean it's not ME. Like, I'm not to blame or anything. It's not like I "did" anything wrong...I'm not in trouble or going to jail or whatever. That said, I do think things like inappropriate conduct, harassment, and stalking behavior should be grounds for significant punishment. But I'm not talking about it. 

Back to the here and now...considering my relationship with you, Dear Reader -- it's not you, it's me. That's all I'm trying to say.

I've spent the past 8-ish weeks dealing with aforementioned Puzzle Incident. During which time, my life has slowed down. Way down. Like almost-to-a-complete-hault-down. You wouldn't know it from the outside. Or, maybe you would...but not enough that you'd mention it.

We ended summer with trips to the water park and sleepovers. The girls started school...which means I met new teachers, went to a 504 meeting, and talked to the class. We're getting back into our school-year routine, and I even made GF mini-pies. (Hello? I couldn't leave that out, and YES...I plan to share the recipe. #winner!)

Guess what?

Dia-flippin'-betes and Celiac didn't go anywhere.

In case you were wondering, they didn't spontaneously decide to take a few weeks vacation just because my brain needed to focus on something else for awhile.

Nope. Still here.

The good news is that, while my life has been on "hiatus", the FDA (finally) approved an official definition of the term "gluten-free", and passed a new Gluten Free Labeling Law. {Further reading HEREHERE, HERE, and HERE.}

The bad news...

Glucose meters *STILL* do not meet regulatory standards. And you know what else? TEST STRIPS CAN BE UP TO TWENTY PERCENT INACCURATE!


Insulin keeps my daughter alive. Too much insulin will kill her. Too little insulin will kill her. In fact here's a picture of roughly how much insulin keeps her alive from one day to the next: then, does one go about figuring out what amount of that little drop should be given at any minute of the day since a smidge in either direction can have drastic results?

Well, I'm glad you asked!

With a glucose meter and test strips that aren't required to be super-duper accurate, of course!


Ain't nobody got time for dat.

Meri's letter really drives the point home ---> Read it.'s a *BIG* meeting on September 9th. Like, really big. And we need some lawmakers in attendance.  Bennett is going...and if anyone will tell them like it is, Bennett will! But you need to tell Congress how important this issue is to you too.  Please take a few minutes to locate a few email addresses, and send a letter to your state leadership.

And...while we're on the subject, please sign THIS petition to tell the FDA they cannot ignore diabetes.

I've been trying to ignore diabetes for a few weeks.

It doesn't work.
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Monday, August 12, 2013

JDRFcc13: Downtown DC with Hallie

We had a few free hours on Day 2 of JDRF Children's Congress 2013 to see some sights. It was a small window of opportunity, so I asked Sugar what she wanted to see the most out of everything.

Her answer: The Lincoln Memorial. (And she wanted to ride the Metro.)

As for me, I wanted to take her to the American History Museum, specifically to see the First Ladies Exhibit

That was all we'd be able to "thing" each.  We were excited when Hallie and Sweets decided to join us, and off we went!

First we walked from the hotel to the American History Museum.

I'm a nurse. He's a helicopter mechanic. We're pursuing the American Dream together.
Corny, I know.
*BONUS* - Coincidentally, one of Mr. Rose's sisters happened to be in town for a conference of her own. She Metro'd over to meet us for a quick hug and hello, before needing to get back to her meetings.

Next up, we found some dinner and then hopped the Metro to Foggy Bottom. We didn't think the Lincoln would be much of a least, not according to the map we had been using...

It was a hike. 

And it was hot.

But we made it.

American History -- CHECK!
Metro -- CHECK!
Lincoln -- CHECK!

Now we had to make it back to the hotel in time to pick up some important information we would need to review before starting Day 3.

We walked.

And we walked.

And we walked.

(Did I mention it was HOT?)

I swear we walked about 154 miles.

For realz.


Maybe 156.

But, seriously. It was a really long walk.

All the while, we were testing BGs and Sugar was popping glucose tablets as if her life depended on them. (Ummm...because it did.) I seriously don't even know how many tablets she chomped through in order to survive our sweaty city escapade.

When we made it to the final home stretch, she hit a wall.

She sat down in the middle of the sidewalk, and declared she couldn't go any further. She even took her shoe off. 

I could only imagine how she must have been feeling...every time I checked her she was hovering in the low 100's - literally clinging to that range by the grace of yet another tablet. We were hot. Sweaty. Tired.

But we powered through. She hobbled back to the hotel wearing one shoe, and claimed victory.

We finished strong, my friends!

HI FIVE to Hallie and Sweets!!!!

PS (In case you ever wondered, the U.S. Treasury Building is beautiful. It might or might not resemble the White House after a long, hot, exhausting walk. And you might or might not stop to take pictures of it.  And then you might or might not notice that traffic is whizzing by next to you...and you might remember that cars cannot drive anywhere around the White House. You never know.  You might. Just sayin'.)

PSS (Tonight Hallie and I are chatting it up over at DSMA Live 'Rents! Be sure to stop by!)
 DSMA Live on BlogTalkRadio

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.