Tuesday, March 12, 2013

A "perfect age" to get Juvenile Type 1 diabetes?

-Alphonse Karr  


Just this past weekend at an event with many Type 1 diabetic families, my 12yr old, Sean, made a very serious observation...

Sean got diagnosed when he was 11yrs old, and has not met too many kids younger than him who battle the same disease. So during lunch at this event we were back to back and side to side with kids of all ages who are also Type 1.

One little man in particular caught Sean's attention, and he looked back at me and said, "Wow mom, that's so hard, this boy is too young to have the same thing as me. I just can't imagine that, he's just a little kid."

The sentiment chipped another piece of my heart away, as Type 1 tends to do so easily at times... I love Sean for his empathy towards others. He's been that way since he was about 5, but this moment really stood out.

Just another second later I could hear a conversation behind me among T1 dads regarding the age their kids got diagnosed. This opened up a whole conversation regarding "the ideal age", so to speak...

Is there a perfect age for our kids to deal with diabetes?

I completely related to one T1 mom's feedback on how difficult it would have been to meal plan and dose appropriately with a baby/toddler type 1... Then a dad chimed in how even older, like Sean, has its downfalls. When he began to explain, I finished his sentence for him; "...yeah, he knew his life before diabetes, and he always will!"
We then compared and contrasted the age possibilities so candidly, and ultimately concluded there are pros and cons to all ages. Yet one family really did believe "7" was it. The best age for diabetes to strike.  Just old enough, but still young...years before the hormones and adolescence kick in, etc. 

What do you say? 
Do you believe it was your child's age that was best?
Have you observed another family/child and think they've got it worse/better?

*Of course we wish this darn disease never reared its ugly head in our kid's lives. It's something every parent would take on for their child in a HEART BEAT! 

(Sean, left, playing chase with younger friends and his brother just before lunch at this event...)

Until the cure, we have so much to still look at and learn from... My brave, strong and amazing young tween has this amazing gift I am grateful for: PERSPECTIVE. And I can't wait to see where it guides his heart and actions as he continues to "grow into" his diabetic life...


Friday, March 8, 2013

Boarding the D.A.D train...(diabetic alert dogs)

“My heart is warm with the friends I make,
And better friends I'll not be knowing,
Yet there isn't a train I wouldn't take,
No matter where it's going.”
― Edna St. Vincent Millay

(courtesy popsugar.com)
Doesn't this pic above (Angelina Jolie and her entourage) look like a good time?

Well, this weekend our DAD organization has a field trip on a train ride with about 43 people and well...counting dogs?! Probably over 50!

We're sending our T1 tween on that ride! 
Yes, as in me, my hot hubby, 3 body guards + multiple children from around the globe will not accompany him the entire way...

I can't think of a better trip for Sean to go on than with 16+ other experienced TYPE 1 families, plus trainers and Diabetic Alert Service Dogs....

Oh yes, Diabetic Alert Dogs...
Have you been introduced to these animals? Sean was about 4 months into his diagnosis...He was collecting scent samples (when his blood sugar was low he'd collect his scent and seal it for trainers) to help these animals help other kids. 
I had just been diagnosed with an auto-immune illness; battling symptoms for 4yrs so I was overwhelmed mentally and emotionally by all the health crisis between the two of us. However, it warmed my heart to see Sean participate, full knowing we weren't about to bring one home for him. NO WAY. 


while being shown how to collect scent samples...
he was 77, then suddenly dropped to 60-something and the puppy noticed/alerted.

Thankfully we were already in good hands... Sean's dad's best friends cousins monkey...jk. Are you still here...? His dads' best friend since Preschool married a woman who had been training her dog 10+ years ago for mobility service. I remembered this & a conversation she had with me during my health struggles... She talked about service dogs, and how she would help if my mobility ever got to that point... SO WE TALKED WHEN SEAN GOT DIAGNOSED, and she began helping us find an organization to help...

If you were one of the few and brave to read my previous post "Life in the D.O.C." you may have learned about my CASTING NET habit... 

Months and months I began to facebook search, email strangers personal questions...No really. Skippy straight I did! It was like an "Underworld" at the time...Who were these people? Where did they get their dogs? DO THEY WORK?! A few bold and brave wrote me back...and then, (((gasp))) we became FB friends and we hadn't even MET in PERSON!

I launched Sean's facebook page and friended strangers, photo stalked and uploaded the little I had in order to BEGIN SOMEWHERE... Hadn't even applied, but looking back- we were parked at the train station, for sure.

The following months we went on a FIELD TRIP! Much like the one coming up this weekend...Met dads, DADS, moms, adults, kids and trainers with Type 1, with dogs, etc... And I probably drove them all nuts as I began asking questions and the answers back had us entering the station.

photo courtesy of Frank Wisneski

One mom in particular had battled a health crisis like none other, amidst their families' journey in getting a Diabetic Alert Dog. Her words on the support system she felt from not just the Organization/ trainers, but of the dog, eased my anxieties. I began to see the possibilities rather than the limitations...
A TYPE 1 ADULT shared with me how significant her dog was in her life, able to save her many times from lows she would have otherwise been unaware of...

And in the middle of all this Sean was alerted AGAIN. Another dog just about 10ft away caught a 220 HIGH.

Well shoot, where do we buy our tickets?! It was a done deal, the excitement was there, but the future was still unknown...HOW MUCH?! HOW are we going to DO THIS?! WHEN CAN WE HAVE HIS DOG...
But we boarded the train!

Now many of those friends I cast nets to have began online support groups for diabetic alert dogs...  www.dadsfordummies.com for first timer info/support in making your decision. 
And yes, where there is something amazing, there is also the opposite... So BUYERS BEWARE.

* PUPPY RAISING a dog yourself (training tools, support system, etc) is yours to consider.
* A "STARTED DOG" from a reputable organization is also an option...(some of the puppy stage is handled before they come home)
* and a "FINISHED DOG" (which means mature, public access ready) to which you still have training and tasks to maintain in order for it to be successful...
Resource link on 
What do these terms mean? DAD Lingo 101****ALL OPTIONS best discussed by a PROFESSIONAL who has been able to look and assess your family, your situation, and your abilities!**** 

-May have to be another blog topic one day! Visit this page of FUNDING IDEAS... AND
For now, wherever you are in the stage of this train ride, please don't forget this is YOUR JOURNEY. ENJOY!

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...