"What happens (DOC) if we say NO..."

I wrote this almost one year ago. I was inspired by a friend who's necessity to switch Diabetic Alert Dog organizations later led to some major DOC drama. (diabetic online community) I know my heart then is my heart now. No matter who's story is being told...www.facebook.com/seansjourney

What happens if we say, "No"...?

September 12, 2012 at 10:25am

Just recently, a friend of mine involved in the process of getting a diabetic alert dog made this announcemt on her FB. I felt led to share some thoughts on it...

"Obviously, my decision has cost me some friends. Maybe they weren't really friends. By now, I am sure many of my T1 family has heard that we have decided to no longer continue our journey with (organization). Rumors will fly, people will talk, at the end of the day, just know that this is a personal decision for personal reasons. All I will say is please, if you do not agree with our decision, that is fine, then please delete me from your page. I have to do what is right for me and my family and has nothing to do with the friendships I have built and I hope those who have gotten to know our family and my (child) would continue to be there for us as we battle this disease together. It was what we had in common from the beginning."

I ache for this mom. I saw an earlier post from her that she had something happening later today that was going to change for their family in a big way...I didn't anticipate this, but I am not surprsied. 

We have made friends across the nation along this journey. Moms, trainers, puppy raisers, breeders, and even strangers have sent me messages, spent hours on phonecalls, and even emailed me anonymous tips! I am forever grateful and have been introduced to some real keepers ;)

Some of these individuals have exposed me to a number of organizations for diabetic alert dogs. -About 4  of them I could name off the top of my head. Two in which I have been in contact with, and one in which we are in great realtionship with.

Making the decision to "fund", rally, support, & bring in THOUSANDS of dollars, our ENTIRE network of support (family, friends, THEIR family and THEIR friends) for an elite animal that is going to require 100% of our committment for 100% of it's commitment back, is a huge undertaking. 

I don't know the reasons for this friend's decision, and even if I did, they wouldn't matter to my opinion and support for her.  Because I support her.  It doesn't matter which organization, her personal circumstance, it's just a really difficult matter, I'm sure, to go into something so whole-heartedly, make so many friends, then have to pull out.

I write this up because I find that the heart of the matter is the same~ She's a mom on a mission, in the same battle, to find a way to make this disease easier for her son to manage. Easier for HER to manage. Blood sugar is a "Nasty Beast", as I say... and an alert dog is a fabulous tool to fight with!  One that our kids, our whole family, can happily accept. 

No matter if this friend chooses to get back into pusuit of a D.A.D or not, my hope is that the community of people who came alongside her continue to show their understanding. She put it best in her own words, ..."we battle this disease together. It was what we had in common from the beginning."  

For those who have this disease, have a dog, or are part of the D.A.D world around us, we thank you for your participation and involvement with Sean's site and our family. It's a vulnerable thing to post pictures, comments, make friends we've never met, call strangers who offer their phone  numbers, and "invite" into our lives without even knowing what this all really means yet...

And for those who have no connection to this disease other than your relationship to us, thank you all the more! Maybe it's a member of your family, your diabetic dog ;) , a chronic illness, or a sick child in your family; that allow you to understand the heart we have for wanting to find any and every which way to assist Sean.  

In the meantime...What DOES happens if we say, "No?" ..."  I could imgaine that would be a very difficult moment to announce to everyone. It's one reason we began looking into this so early on, and another reason we have decided to attend a conference in October before fundraising -And I pray that our journey doesn't end to partner Sean with a D.A.D, but it very well could.  Who is to say, as this IS a PROCESS, is it not...?

So where are we along the way?...

We are excited, wholehearted.

We are overwhelmed, & well intended.

We are parents, with sick, healthy children.

And we are making decisions CONSTANTLY.

The decisions we make are affecting them in the moment,

Which will ultimately impact the longterm of their health and longevity.

It's a joy, it's a pain, it's laughter, and crying shame.

It's unfair, then they don't care.

Then you have to, for them.

Once you have it, another you don't.

It's in balance, then feels like a joke.

It's one huge frustration, then you find a friend.

Then suddenly you realize life will soon mend...

~We are families with Type 1 Diabetics~

Type 1 Mom Song

Lyrics:

Count your carbs,

Get your kit

What’s your blood glucose?

Wash your hands,

Dry them off

get a finger to poke

Press and squeeze

Get it out

Are you in good range?

Tell me NOW, what does your meter say.

If you’re high,

Get a stick,

And well… use the loo

Drink some water

please relax

And wait a few

Check again,

Yes it’s time,

Where’d you leave it last?

Get it NOW! Where’s your sugar at?

Get a snack

Pack your bag

Don’t leave a single thing behind you know we can’t go back

Set your pump

Or syringe

To the proper place, we must get it straight

When you’re sick, it’s a wash

and then we’re beat

It doesn’t matter what you’ve eat

listen up

blood sugar, it’s a beast

has no respect

Not in the least…

If you feel too dizzy,

Get nauseous,

Or can’t see straight

You must take a quick stick, some OJ, or Gatorade!

The fun,

Or the sun

Another day gone mad,

Now let’s go check

Before it’s bed…

2am

I’m up,

To check on you

If you’re good

You know

I’m sending you

To school

To the park,

Your best friend’s house

Don’t get up

I’m quiet as a mouse

Where the light

Where’s your hand

I will search the sheet

A wet swab to clean it up so neat

No more trips, or visits to the Emergency

I don’t want an IV to go back up your arm, keep you from harm

I want you home, with no keytones

So drink some water, more now more, another sip a little more?…

Pray hard Find help

And good support Don’t let diabetes sink your boat

It’s a fight

Armor up

Battle on ahead

Don’t give up

Now raise your head

see past the dread

Keep the faith Stay strong

We are the moms

our kids Need us to see what's wrong!

 They have life,

they have you

to get them through-

this yucky DISEASE, that’s oh so new. every moment,

make it count

because it’s life

and we must lead

them through this strife

and we know that it’s day to day

and moms like us must find a way

To share and care in love for those who don’t

Think it will ever think will get to them,

Just like me, just like you- Just like our, TYPE ONES, TYPE ONES, TYPE ONES! 

(Absolutely 100% inspired by Anita Renfroe's "The Mom Song"!)

Above is a collection of our friends we've met online through the D.O.C (diabetic online community). We are not alone and neither are you! There are many misunderstandings and misrepresentations of this disease, so my video was made for fun, and for awareness purposes...All the things I find myself saying or doing everyday to keep my insulin-dependant son alive on an hourly basis. Our son was diagnosed with Juvenile Auto-Immune Type 1 Diabetes Jan of 2012. He nearly lost his life to the disease. Our best friend lost her life a month later to it, so I am passionate to educate. Thank you for being KIND! I am not a singer, but I love to songwrite...Blessings to you on your journey please visit ours: www.seansjourney.org "William Tell Overture" by Em K

How a sippy cup gave me confidence to train a dog...

I have a friend who's little 1.5yr old boy is in urgent need of learning to drink from a sippy cup. PRONTO.  

He has a surgery consultation coming up soon and his mommy hasn't given up hope that her little man may learn some new things and prove to all that he won't need a feeding tube for  the next 2yrs. (A dear family friend has been on a feeding tube, so we know exactly what this means...)

This little guy came over today and we all got involved in the "BIG SIP" game... My 13 & 11 yr olds even got sippy cups and everyone joined the biggest sober juvenile drinking party before noon! For every big sip this little man did, he was rewarded with Cocoa Pebbles. Yes, you read that.

I really dislike lifeless no good junk cereal like that but somehow it crept into this house, and no it wasn't on MY shopping trip, I'll tell you that much! But thank goodness it was here! (I was searching for fruity Cherrios, thank you! We were out).

But little man LOVED the chocolate and we got a good 20+ "Big Sips" over the next few hours and had parties, did dances and were extrememly consistent... He went on to wanting to open the pantry door- so he had to do the "Big Sip!" It took the 7th time or so, but he caved as the curiosity got the best of him and I wasn't bothered by the baby squeal of detest for MY not caving-

I guess to wrap it up quickly here now...When I first got into learning about dog trainers I thought "Oooh Ahhh, I could never....

Then I started learning through, well, observing, asking questions, and reading up...I also began talking out loud and thought, "You know, I'm a good mom, I wonder how I could translate the discipline of the kids into the discipline of a dog?" 

Maybe that sounds ridiculous but it was a good enough start for me. I began with my own dog to see if I stood a chance. So far so good. She's got some cute things going for her. Next I went to refresh on my kids- well kinda. It's hard to be so close to something you don't know if you can see it in truth or not, really...So today was a true blessing for us! And we were all a part of it. Even my son who will soon be training his own dog, and we will all be a part of that, I'm sure.

So as grateful as this mom was for all our help today, I am more grateful to her. I loved the tiny preview that this mama (me) still has somethin' when it comes to the little people, and I'm glad our family pitched in and helped.

Here's Jesse, our Yorkie, doing her little "show"...

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

"Some people are always complaining because roses have thorns. I am thankful that thorns have roses."

-Alphonse Karr  

PERSPECTIVE...

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...

 

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. 

FAMOUS LAST THOUGHTS!

AS SEAN WAS ALERTED TO A LOW 

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!**** 

FUNDRAISING FOR YOUR DOG:

-May have to be another blog topic one day! Visit this page of FUNDING IDEAS... AND

 How to raise 15k in 5mo- What do DAD's cost?

For now, wherever you are in the stage of this train ride, please don't forget this is YOUR JOURNEY. ENJOY!

TOP 10 RESOURCES for DAD info! Blogs, books, videos and national links to trainers and breeders!

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...

www.seansjourney.org