Thursday, March 7, 2013

Life in the D.O.C. (Diabetic Online Community)

       "You can't stop the waves, but you can learn to surf." 
(Jon Kabat-Zinn)

Good-bye "normal" and welcome to the new ocean we are all exploring together. 
It sort of felt like this before I got here: 

Crush: Okay. Squirt here will now give you a rundown of proper exiting technique.
Squirt: Good afternoon. We're gonna have a great jump today. Okay, first crank a hard cutback as you hit the wall. There's a screaming bottom curve, so watch out. Remember: rip it, roll it, and punch it.
Marlin: It's like he's trying to speak to me, I know it.
[to Squirt]
Marlin: Look, you're really cute, but I can't understand what you're saying. Say the first thing again. 

and that's exactly what happened. "Your son has type one diabetes. Go to the ER, NOW. Don't stop."

Months after diagnosis, a friend encouraged me to visit a facebook page, of a diabetic alert dog family. She was puppy raising for the organization that provided the dog. 

From that point forward, I realized FB was an online resource of "T1" parenting support groups, etc. I began reading threads, realizing I wasn't ALONE, nor was my child! It took a few months (and a guide) until that all the online "lingo" began to sink in...

"DOC" = Diabetic Online Community (Oooo right! I knew that...)
"Dx'd" = diagnosed
"Diaversary" = date of onset, revisited. 

Then I started to see the same "faces" pop up. The wisdom, to whom and where is was coming from...and I read any and every article that was shared. I also named and started this BLOG, because I LOVE to write! It's therapy for the ever-constant inner hamster-wheel of thoughts...But ALAS, No time. We were busy battling the first year of a very complicated disease that has no respect.

No respect for kids.
No respect for moms and dads. 
No respect for sleep or answers to questions at 2am...
No respect for sanity.
No respect for mental & emotional stability....That's where the DOC fit in!

So I did what I always do- CAST MY NET. Had no idea some of the "faces I met" did such great things, were doing them, or just about to! I made FB friends just based on comments, based on common interests, based on having a 12yr old with diabetes. Based on whatever connection the internet showed us- that's FACEBOOK.
But with FB, comes no face, just words. Like me and my son- do you "hear" my words or picture anything differently now that you have this picture?

(exhausted form climbing to the top of a football stadium ramp, Sean extended his arm to help me the whole way)

PICTURES say so much (to me they do) so I enjoy including them when I write... They help me recall events and feelings I may want to express later...

WORDS are an entirely different ball-game. (Ask my dear hubby or close friends who have put up with my "Annaisms" & "Annaneese" for over a decade!) 

Words build a person up or knock them down
Words rally an army, can manipulate Kings and Queens... WORDS ARE POWERFUL!

And so back to "US" the DOC. We have really been on the ride these past days...this past week was EXHAUSTING...! 

We're a tight knit bunch, huh?! Big family in a small town, kind of... but just words.

This week scientists, bloggers, facebookers, and the DOC got news and shared one particular triumph in the direction towards a CURE. I doubt this is the first or last time this will happen. So I'm not going into it, but alas, it happened! 

Just days later, an un-diagnosed Type 1 boy Sean's age collapsed and died from what they assumed was "the stomach bug"...

*If this is your first time reading about a T1 related death due to undiagnosed "Keto-Acidosis". I am genuinely sad to tell you it won't be your last. We nearly lost our son to high blood sugar levels which induce DKA (diabetic keto-acidosis). These keytones eat away muscle, and the heart is a muscle....So when all the fat is gone...and I lost my friend a month after Sean came home from ICU to DKA. She went into a coma and didn't come back...

I watched the DOC get crazy early this week, and now I'm watching it mourn. 

I am pretty certain if Sean weren't alive today, I wouldn't be in the DOC:

Crush: Dude? Dude? Focus dude... Dude? 
[Marlin wakes up
Crush: Oh, he lives. Hey, dude! 
Marlin: Oh... What happened? 
Crush: Saw the whole thing, dude. First you were all like "whoa", and we were like "whoa", and you were like "whoa..." 
Marlin: What are you talking about? 
Crush: You, Mini-Man, takin' on the jellies. You've got serious thrill issues, dude. Awesome. 
Marlin: Oh, my stomach. Ohh. 
Crush: Oh, man. Hey, no hurling on the shell, dude, ok? Just waxed it. 
Marlin: So, Mr. Turtle? 
Crush: Whoa, Dude. Mister Turtle is my father. The name's Crush. 
Marlin: Crush, really? OK, Crush. I need to get to the East Australian Current. EAC? 
Crush: [laughing] Oh, dude. You're ridin' it, dude! Check it out! 

and that was this week with the DOC family. And look at this pic! I love it. Lots of similarities but plenty of differences. All in the same place, all wanting the same thing. Fighting the same battle...

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