Monday, March 3, 2014

One way or another, we're all in this together...

I've always thought there are basically two ways to go about things...we can dwell on the negative, spotlighting the horrible, or, we can embrace the positive and spotlight moments that can help us get through the day...in either case, at the end of the day, it's the end of the day.

Another way to look at it -- you can be 'down to earth' about where you are and what you have on your plate, or, you can look ahead to where you want to be and focus on that.  Other ways to describe this, "this is life, baby, deal with it."  or  "life is what you make of it, so keep your glass half full"... or ... "Diabetes kills.  Every day, sometimes without warning, even in the best of care."  or "The Cure is out there, we've met some incredible people on our journey with Diabetes, and, we are going to celebrate together when this is all over."

Realistic vs. Pollyanna; Negative vs. Positive; however you describe it, I know two things:  It just isn't and can't be one or the other, and, no matter which house you play your cards in...at the end of the day, it's the end of the day.

I am trying to be honest with myself about this.  I definitely live in the world of glass half full and try to make the world a better place every day.  Am I unrealistic in my thoughts?  No, I don't think so...I know the dangers, the tragedy that lives and thrives in diabetes.  I've woken up at 3:00 am, every night, for fourteen years, whether my daughter had good numbers or bad...I check on her at least three times from the moment she hits the pillow to the moment she gets up.  I know the fear...I know it could strike even with my three checks a night...but I do not want to live there.

My daughter is also an awesome person, with great ability and wit~~her laughter and her sense of humor are two of my favorite things about her.  Do I go out of my way to tell her of the dangers and real life tragedies of diabetes?  I do not.  Does she know about them?  Yes.  When and if the need or situation arises for us to discuss these things, we do.  But, carrying that weight and fear around every day seems exhausting to me.  I would much rather work on plans and situations to make her life with diabetes manageable and part of the big picture of life than have it get in the way.  I want her to have that outlook as well.

Sometimes, I do find myself swallowed by the angst, the fear, the sadness of diabetes.  It isn't that I don't honor the seriousness, or the people, who have been dealt this cruel, unimaginable and sometimes all too real, side of diabetes.  I cry when I see a blue flame, my heart stops when I hear of someone passing, or someone being diagnosed.  I do go there...but then, I think, one of the best ways to honor those that have passed, those that have endured this senseless, horrible, heart-wrenching tragedy...is to live, to the best of my ability, with this monster called Diabetes.  I want to live in a way that shows my daughters that we do what we can to help others, to endure and to succeed, because we have this great gift of opportunity...just by being here.

I cry, I mourn, I fear...I choose to live, to love, to help when I can, and for me, that it is by being positive and doing what I can to show "the bright side".  Because, at the end of the day, it's the end of the day, and we've got another to get through tomorrow...


Saturday, December 28, 2013

Two Beginnings

Yes, there's more to the story!  So, as I had told you, Caitie is going to be paired with a DAD, a Diabetes Alert Dog.  There are many different philosophies, many different methods by which people train DADs, many different thoughts on where to begin.  Some breed specifically for this purpose, some train their own dogs, and, then, there is HeadsUpHounds philosophy, which fell so in line with our own that again, it just seems we are in the right place at the right time, with the right people.

Heads Up Hounds, or, for another acronym, HUH, trains rescue dogs to become alert dogs.  As an animal lover and with a family that thoroughly embraces rescuing animals like our shih-tzu/poodle mix, Morty, we were thrilled to hear that Caitie's new companion will be one who needed a home.  To give this new dog, whoever he/she may be, a home, a purpose, an owner who will love them completely and unconditionally, well, we feel like we've hit the jackpot of wonderfulness!

HUH finds these dogs as the time gets right to train for another person to take home their new companion.  The training can take three to four months, with a lot of effort embedded into that time.  Saliva samples are given from the soon-to-be owner, these samples are used to train the DAD on the scent of high and low blood sugars from their person.  The dogs are trained in all sorts of situations, from night-time vigilance, to grocery store and restaurant etiquette, to whatever the new owner's schedule may be.  For Caitie, we are looking at this new BF (best friend!) to be Caitie's guardian at night.  As parents of a child with type 1, I can very well tell you that a good night's sleep has been absent from our lives for about 14 years...to have someone else on the clock soon, and, with her at sleepovers, college, etc...the tears come very easily...

Caitie will be the owner of this dog.  We've watched videos of the hand-offs, it makes the butterflies in my stomach flutter--Caitie will become this dog's world and she will be responsible for her new friend's care.  A big responsibility that takes thought and consideration, and she's ready to take the leap!  That this dog is being rescued makes us love it even more, and, we haven't even got a clue who he/she is yet!  The excitement is building...there's still a lot to learn and a lot to do, but, we are feeling like Christmas in July is just around the corner!

As I count my blessings from the year and look to the future,  K9 4 T1, and HeadsUpHounds are tops on my list and making my heart burst.  I am "speechless" (ha ha) when I think about how blessed our family is and how lucky we are to have become involved with such wonderful people, and to begin this journey.  As a parent, I am sure that each and every one of you reading this can understand the love and want to provide safety and care for your children, and, that it is coming in a furry, fun package--what a bonus!  

The new year is sure to bring new challenges and new stories...and new Footsteps of Hope... all my best to you!

Wednesday, December 18, 2013

THE REAL BEGINNING

First, an explanation of what a DAD-Diabetes Alert Dog is, and can do, for someone living with diabetes.  These dogs are trained to smell the smallest increments of scent from a person when their blood sugar is too high or too low...in simple terms, for example, one of the warning signs of Type 1 Diabetes is "fruity smelling breath"...this is when the person has a high blood sugar and you can actually smell the sugar on their breath.  Some people can smell this, some cannot...these dogs are trained to smell the microcosm of that scent, and, the scent a person has when their blood sugar is too low.  Training entails sending samples of saliva to the trainer for the dog to learn "their person's" scents...hours and hours go into this process, sample after sample in all sorts of conditions...so that in the end, awake, at work, doing errands, or asleep, this dog will then be able to alert its person when they may not know themselves that they are entering a danger zone.  Amazing.  Simply amazing.  Not to mention, the stress-relieving aspect of owning a pet, the companionship, the exercise the person gets caring for the dog...so many positives!

But, yes, I do recognize there are 1.  Things I don't know, and 2.  Challenges and uncertainties that come with adding a DAD to one's life.  This dog will bring attention to the Diabetes, possibly more than the person...and the person needs to respect they now have to own the responsibility of educating, advocating and understanding that they will be "out there" for the world to see.  There will be times when they need to weigh their situation and determine how their new companion fits in...all food for thought ... and, there will be unforseen experiences that will have to be dealt with -- some would just call that "Life"...(that's what I'm thinking!)

So, here we are ... at the beginning of the journey, all these things in my head as well as the fun stuff...what will Caitie's dog look like?  Will they be a he or a she?  What will Caitie name her?  Does Caitie get to name her??  Or him??  :)  So exciting!

So, back to the BEGINNING...
Last summer/fall, I was running all over the state for work, and one day I found myself out of town, tired, just ready to fall asleep to get up for an early morning and long next day.  I clicked on the news in the hotel and was just about to turn it off again and just go to sleep, when they teased the next story after the break..."Local father and son finish Ironman, but, there's more...this son did this with the challenge of type 1 diabetes...more after the break".  Well, of course I stayed up!!  When the news story continued, I learned of this father and son team that had taken on this challenge and come in seconds before the deadline for Ironman.  They interviewed the son in the hospital, recuperating from the race.  I was taken in by the story and wanted to know more...

So, I called the station a couple days later and got the name of the father who ran the race.  I called and left a message for him and went on with my days.  A few days later, Dan called and introduced himself.  This is our beginning...this is when all that stuff about right time, right place, something out there in the universe making sense all comes together.

Dan started to tell me the story of he and Zack, his son with Type 1 and why they were running.  He told me they run for a non-profit called K9 4 T1.  K-9's for Type 1's...and that I do not know the whole story...there was more, much more, after that interview on TV.  Zack had to stay in the hospital an extra day to get his levels straight, and, Zack had a DAD, so, the DAD, Oden, went home with Zack's frat brothers back to their home out of state.  What I didn't know (besides at the time that Zack had a DAD), Dan went on to tell me, was that Oden had contracted a virus and he had, very unexpectedly, died that week.  Dan choked up, I started to cry and all of the sudden there was a Mom and a Dad on the phone, The world stopped.  Dan and I spoke for a long while, about Zack, his dog, Oden, and why they run for this non-profit.  Dan's sister also has Type 1, and she now has a DAD.  Changed her life.  I told Dan about my dream of having that guardian angel for my daughter, Caitie, for when she goes to school.  It was a conversation to another parent, I did not, at the time, realize that Dan was K9 4 T1!  As we talked more, Dan told me that K9 4 T1 raises funds for people to get a DAD of their own, and that he, and Zack, were running to raise funds for the charity to help fund dogs for other people.  They were happy to report that they had raised enough funds this year to sponsor a dog that would meet his new owner this past fall.  I was so impressed and touched by this.  I had no idea what was coming next...

A week or so later, I got an email from Dan.  I remember exactly where I was, in the kitchen, cooking dinner, checking email, multi-tasking...I started to read Dan's note and I couldn't comprehend what I was reading...tears filled my eyes.  Dan wanted to sponsor my daughter, Caitie, to get her own DAD.  He had been thinking about her and how wonderful this gift had been for his own son.  His generosity, to this day, is more than I can imagine.  It brings me to tears, it makes my heart burst, it is incredible.  When I think about how we just by chance met, how our stories came together at just that moment, goosebumps.  Thankful, thankful goosebumps.  Caitie came into the room, saw her mom crying and asked what was wrong.  I couldn't speak, I just turned the email to Caitie.  She caught her breath, and hugged me.  The beginning had begun...

Tuesday, December 17, 2013

A New Adventure, A New Friend

Well, it's official!  We sent in Caitie's application today for a DAD, a Diabetes Alert Dog.  This decision has been a few years in the making, from dream stage to learning stage to decision making...in the end, the resounding question we asked ourselves was, "Why WOULDN'T we do this?!"  A companion for Caitie that will be a safety net, another tool for her to use to rise above the highs and lows to live the life she wants! Not to mention she is a HUGE dog lover and there is a smile across her face ten feet wide! We're in!

If you are like me, you have a ton of questions if you're just learning about DAD's now.  I still have a ton of questions!!  I'll be happy to share what I learn along the way, and to share our journey, but what I know already is every person's experience is going to be totally different~there are a lot of different views out there, a lot of different methods, a lot of different philosophies on DADs, and their owners!  So, consider this one story, one journey...maybe you will choose to take this path, or that, but, in the end, know that we are just one of many, and, we are doing what feels right for Caitie.  I hope you'll join us on our journey, follow along, stop in once in a while to find out what's going on, because I think it is going to be one heck of an adventure!!

THE BEGINNING...
So a few years back, when I first heard about DADs, I thought to myself, with goosebumps on my arms, "There is Caitie's graduation present right there...I want her to go to college with her own DAD!"  Now, realize, she was 9 at the time, but, I believe in planning ahead!!  ;)  (believing in planning ahead and always being able to do that, those are two different things!  Especially with D on the ride!)  So I read the stories as they came into view...astounding what these dogs can do!  They can detect when "their person" has high or low blood sugar, and, alert them to it..." incredible", I thought...

So, I researched a little bit more, and found the cost of these dogs is remarkable as well...$10, $20, $25,000 ... I understand the cost, the training...but, my dream suddenly became a bit out of reach...I've got two kids, one who is about to embark on a college adventure of her own, not to mention the every day bills, medical bills, etc. that comes with a family.  So, I watched from afar as I learned more and more about DADs.  Of course, the dream never left my mind.

THE MIDDLE OF THE BEGINNING...

A few years later, DADs popped up again as a local boy was being interviewed on the news about his DAD and the very generous donor who was stepping up to help this boy with the costs of getting a DAD.  The donor, so impressed with what these dogs can do, and, an animal lover himself, put his hope of helping to find 10 more dogs for people in the area out to the public.  You had to apply to become a candidate for this opportunity, so, I was on the computer, lickety-split, filling out the application.  Another big learning curve, another chance to dream...

A few days later we received a call from the company that had done the training for this boy and his dog.  That is where the real discovery began.  Caitie had just turned 13, and the interviewer asked about her life, how she manages her diabetes, etc.  This is where I learned about the first philosophy of DADs.

Philosophy #1:  24/7 DADs

This company trains DADs to be with their person 24/7, no exceptions.  The interviewer asked us to think long and hard about this...Caitie would be taking the dog to school with her, have to care for the dog at school, take the dog everywhere...all the time...except maybe the occasional date...down the road...wayyyy down the road  ;)  The interviewer mentioned that it was difficult to place dogs with 13 year old girls ... one girl had actually returned her dog, the teasing and spotlight were too much for her - kids can be mean - and when she was taking her dog to school, the kids started making fun of her for having to clean up the dog's "business" during the day.  The peer pressure and the outing were too much.  I thought about that a lot...  I shared that with Caitie, we had a heart to heart about what life would be like.  She'd have to explain, teach, educate, D would be out there, front and center, at least for a while...Caitie's response, I'll never forget it, "Welllll, I don't think we should completely discount the idea just because of that..."

So, we waited to hear if we were in the running for some support...the call never came and the subject faded as we learned more about the process, the life of DADs and I watched more closely as I learned of stories of those who had gone the DAD route.  We thought a lot more about the intricacies of having a DAD and what that would mean, how it would affect the every day... still... a story would come and I would think, "(sigh) but to have that companion, that safety net, for when she goes off on her own..."it still seemed like the right thing for Caitie.  Caitie still thought it would be the most awesomest thing ever!  Here is one of those times when I do believe everything happens for a reason and everything happens in good time, if it should.

Stay tuned for the next installment, "THE REAL BEGINNING"...coming as soon as I have another moment to write!

Saturday, August 24, 2013

Mom, I don't know where my pump is...

Yes, you read that right...a quote from my daughter this past week as we were getting ready for dinner!  What's going through your mind right now?  I wonder, is it the same that went through mine at that moment? Upon refection now, I think I had the right reaction "outside", but, I promise you inside, I was a little bit of a mess!

Lots of feelings, lots of talking to myself and trying to sort out just what was going on.

The day started out well enough.  I'm working full time now, a move we desperately needed to make not only to make ends meet, but to gain insurance for our kids, especially for Caitie's diabetes needs.  I go to work after I make breakfast for my dad, who we share a home with, too.  It is summer, so, the girls are sleeping in when they can, although, this week, my oldest is back to cross country practice in the morning, one sure sign that summer is almost over.  I let Caitie sleep in, no need to wake my slumbering teenager only for me to kiss her goodbye and head off to work.

Mornings are pretty routine most of the time.  I get up in the wee hours, to check Caitie, to get the coffee going, to have a moment to gather my thoughts before the house starts to stir.  I make breakfast, then I go in and check Caitie.  She's lying so still, every morning I hold my breath, frantic thoughts running through my mind each over the other, 'is she okay?' ' is she breathing?!' 'oh, Lord, please take care of my baby...' 'go test her' ... I find myself tiptoeing over to the bed and whispering, "Caitie, hon, are you okay?"  I kiss her on the forehead and catch her quiet breathing.  I smile, catch a tear, and sigh.  "Thank you," I whisper, and I kiss her forehead again.  I take the test kit and prick her finger, all while she sleeps.  I watch the meter count down and make my calculations and predictions.  She's okay.  She'll be okay for a few hours and I'll call and check on her.  I whisper to her that I'll be calling and place the phone by her bed.  I give her hand a squeeze and she nods in her sleep and I tiptoe back out of the room...off to work I go.

Yes, my father shares our home, and, he's home most of the time during the summer.  But, he has shared with me that the management of this disease is more than he can handle, and, I respect him for being honest.  Diabetes still scares him to death, and, I do understand that all too well.  Caitie is also 13 years old, having lived this life for nearly as many years.  She can manage very well on her own.  It is only the unknown moments that still scare me.  But I try Never to let her see that.  This girl is the best positive, proactive teenager I know with diabetes, and, we live the life that she can do anything, with just a little planning.  So, I've planned to call her in a couple of hours, just to make sure all is well and she is ready for another day.

This day, she is going to a birthday party for one of her friends -- a swimming party at a local pool.  Perfect timing for it!  The heat of the summer is here and it is a great way to spend a summer day!  My dad is going to give her a ride there and we've gone over the protocol for the day-bring your swim suit, a towel, sunscreen, detangler for your beautiful long hair that turns into a rat's nest with water... and, your test kit, extra strips, extra pump sets, your kit with all the other diabetes necessities, quick sugar, etc. etc.  Oh, and have fun!!!

She does, she has a great day with friends, home just before me as I drive home from work.  We've checked in through the Mom Network throughout the day and all went well, she was dropped off safe and sound.  I come in the house, and we start to chat about the party and how everyone is not looking forward to summer's end.  I move around the kitchen getting dinner ready-Dad's got to eat by 6-it is just his thing--and Caitie goes back to playing with the dog.  We are eating in shifts tonight due to schedules, late snacks at the pool and, the fact that it is leftover night and some people are not pleased with the menu.  :)

Just finishing up dinner, Caitie starts to get hungry.  She goes in the kitchen to fix a plate and then she pops her head around the corner.  Here it comes... "Mom, I don't know where my pump is!"  She says it with a straight face, and there's just a hint of a tremor in her voice.  I say what I'm assuming any parent would say at this point..."What?"  ...

(Now I should point out here, for those of you reading who aren't real familiar with an insulin pump,or insulin pump therapy, the pump is what gives my daughter her life sustaining insulin 24/7. It is what she is hooked up to every minute of the day (except when she's swimming or bathing) and it gives her a continuous drip of insulin to help her live.  When she swims, the exercise often plays the role of keeping her blood sugar in check so she often doesn't need to administer the normal insulin at this time...when she's swimming, and, sometimes, for some time after due to extended blood glucose balances.)

However, we are a few hours past the pool time and, several miles from the pool.  So, I ask again, "What did you say?"  "I can't find my pump!  I thought it was in my bag, but, I just looked and it isn't in there!"

So, I think, A.  What is your blood sugar?  If you haven't had your pump on all this time... B.  Where did you last have it?  and C.  Oh my gosh, did we get this thing on our homeowner's policy?!!  The reality is starting to set in...we can administer shots to get her what she needs, until we find the pump, but, that pump is several thousands of dollars, if it is gone, ... ... a lump forms in my throat.  The money is one thing, to be sure, but, I'm concerned for my daughter...she shows me the meter, she's 61.  Low!  Wow!  Never thought I'd be cheering a low!  We make a peanut butter sandwich, grab a juice box and I call the pool.

They're just about to leave for the night, but, can I hang on a second?  Sure... "we found something like a black belt thing...with a pocket...is that it?"  "Yes!  That's her belt that she keeps it in...is the pump in there???"  Silence.  "Hello?!"  "Oh, sorry, yeah, I was just checking, it's a blue square-ish thing?"  "Yes!  Thank You!  Can I please come and get it right now?!"

Relief.  We jump in the car, silently.  I'm still whirring with all of the what if's, Caitie is pale and quiet.  She wipes a few tears away.  I then gain perspective.  We have lived with diabetes for 13 years.  She has taken on the role of adult far too soon with so many serious things, so much responsibility when it comes to her health.  In 13 years we have had two incidents of a misplaced pump.  Two in 13 years, that is really not that bad!

(The first was at a waterpark playland 3 stories tall.  She went in with the pump and came out with the tubing and that was it...and, yes, those 3 stories had 3 different ball pits!  We miraculously found the pump, but, that is another story for another time!)

We got to the pool and we were reunited with The Pump.  Caitie's color returned to her face, a smile crept in and I gave the pool attendants a very healthy tip and a gigantic thank you.  They didn't get it--what their finding the pump meant, but, I tried to share how appreciative we were anyway.

I told this story to my boss the next day, characterizing it as "Do you want to hear about a Worst Nightmare Ever scenario for a diabetes mom?"  She listened and then told me to write about it--she said this is one of those "behind the scenes", "no one would ever know" moments.  The fact that my 13 year old wears a device that is keeping her alive, that it costs thousands of dollars we don't have, and, that we are lucky our insurance covers.  "Back in the day" when we first put Caitie on the pump, we were told it was a "luxury item".  It still makes my blood run hot when I think about it now.  A Luxury Item!  This device that keeps her alive!  Harumphf!  And, shame on an insurance company for judging care.  But I digress... :)

In the end, I guess this is what I want you to know, those of you blessed enough to read this without an attachment to diabetes...no day in the life is "just another day".  From the moment we wake up, all through the day, through the good, the bad, the misplaced moment in a teenager's life, this life is full of surprises and challenges.  Yes, just like you, ups, downs, all-arounds.

That night I tucked my baby in, I kissed her forehead, I told her I loved her, and I asked her to test her blood sugar.  She pricked her finger with a sigh, and recited the number after the beep.  One more squeeze and I turned off the light as I walked out the door.  I stopped in the doorway and turned around, "You have your pump on, right?  ;)"  Another teenage sigh, "Yes, Mommmm."

I've heard from many a mother's worry never goes away.  I also think a mother's duty never goes away, either.  As I lay down to go to sleep for a few hours before the next test, I thought to myself, should I be working?  Shouldn't I have been there to make sure she had her pump?  Guilt crept in.  Have I left too early, to leave her to all this disease is?  I decided, for better, worse, or for the simple fact that we are where we are, that this was a good lesson.  For all of us.  No real harm done.  And, I've heard growing pains are difficult and, yes, painful.  This was one of those, I think.  Live, and Learn.  I know my daughter will be checking her pump's whereabouts a little more often - at least for a little while!  And, I will be checking in a little more, too...trying to ask all the right questions.  Now on the list, yep, you got it, "Do you have your pump on?!"

Friday, June 14, 2013

And, another thing I've learned…

As I go along, trying my best to educate, to advocate, to support…I find myself learning and growing as well.  Type 1, Type 2…yes…I said them in the same sentence.  For a long time, I felt like a traitor, mentioning Type 1 and Type 2 in the same breath…ever understanding that the confusion about the two starts right there…putting them together.  It used to make me angry when people would "lump" them together.

I have worked very, very hard, to educate people on the difference of the two “Types” but they do have a few things in common.  The most obvious, but most often overlooked, is People.  Each person affected, either by Type 1 or Type 2 Diabetes, is a Person.  That person belongs to a family, and, another thing the two types have in common, is that neither wants their disease.

I'm going to warn you right now, I am going to try to educate you on Type 2 Diabetes.  You all know very well the cornerstones of Type 1.  It is an auto-immune disease.  Nothing and no one can prevent it from happening if they have the markers in their genes.

Some of you may stop reading, some of you may make harsh comments, but, I want to share what I have absorbed, and, of course, you can take it as you will.  I understand, compassion is sometimes hard to come by, when something so unjust, like diabetes, stepped into your child’s life, your life, un-welcomed, without reason or cause.  Compassion for someone else, who seemingly had a choice whether to have diabetes or not…

but, if you take a deeper dive into Type 2, you will see, many, many people have tried very, very hard, to avoid Type 2...they've gotten the warning from their doctor that they are pre-disposed, that they may be at risk, that they have the signs and symptoms...and then they work HARD.  Some, many, are overweight. ( I can tell you right now, I could stand to lose a few..).Some, many, do not eat healthy, good for you foods. ( I can tell you I grabbed a handful of Snickers bites yesterday for my lunch on the go)...Am I a Type 2?  Not everyone who has Type 2 is lazy, or overweight, or just one ethnicity.  Not everyone who has Type 2 "just let it happen". Atheletes, lawyers, doctors ...moms and dads, grandmas and grandpas... many have Type 2 Diabetes.  Your neighbor, your friend...Type 2 is an epidemic in this country.

No one wants to be sick.  To feel awful, to risk losing life or limb.  In the end…we are all still people…and I do not wish hardship on anyone, and I will try to help anyone who is willing to ask, or at least be open to the possibility of learning…whether you are Type 1 or Type 2, another thing we have in common is that there is a struggle each and every day.  I try not to judge in degrees of hardship anymore, I have learned that inside, no matter what the type, or illness, or disability, we should not quantify other people’s challenges.

That being said, I understand that my challenge is no greater than someone else’s, I know.  My daughter’s challenges and struggles are no greater than some others', either, but be sure, they are certainly NO LESS. Recently, on a few different occasions, I have had to explain what it is like to be a parent of a Type 1 child…I see it makes people uncomfortable when they get that glimpse behind the curtain…there is a lot of pain there, a lot of struggle, and, it would seem there is a fine line between sharing what is true, and looking like we are “complaining”…we’re called helicopter parents, over-steppers, micro-managers,  “those” parents…the words hurt…a lot.  We react, strongly, when our children are the focus of mis-information.  We are parents who, every day, run on little to no sleep, constantly planning and coordinating life-saving care and meals, trying our very best to balance letting our child be A CHILD, and, teaching them things many adults could not comprehend or handle, so that one day, they will be able to take care of themselves and keep themselves alive.  Someone recently referred to “us” as a “tight-knit community”.  Damn straight.  We rely on each other not to judge our messy houses or our undone laundry, to support.  We go to each other for guidance, to vent, and to laugh—yes, there is “diabetes humor” and we know we’re the only ones who really get it.  I've got their backs and I know they've got mine.  Thank God for that, thank God for them.

 As people, in general, when we are walking down the street, we cannot begin to comprehend what it is like to walk in the shoes of those we pass…we may think others have it better…or worse…but, in the end, we are all just trying to get by.  I will always want to help, and encourage.   Do I fight for the rights of my daughter, am I more sensitive to her plight?  Of course!  We live this every day, every night.  I know this burden well, so I can speak to it firsthand.  Do I want to one day “get the call”…”the Cure is here!”  YES.  I do.  Very much.  And so, I will go on doing what I can in the meantime, for my daughter, for all living with Type 1.  But, that doesn't mean that others still don’t need our help, service, support.  I will be there for them, too.

I am in no way a medical expert, but, from my perspective, I’d like to clarify some of the misconceptions. The two diseases are listed below (please feel free to share if you think it would help others to understand!):

Similarities:  People are affected.  In each Type, there is impaired glucose metabolism leading to elevated blood glucose.  (in English:  Both are related to blood sugar levels and how the body produces insulin.)
Differences:


Type 1 Diabetes
Type 2 Diabetes
Also Known As:
Juvenile Diabetes, Insulin Dependent Diabetes
Adult-Onset Diabetes, Non-Insulin Dependent Diabetes
Definition:
An Auto-Immune Disease where the Pancreas makes very little or, more commonly, NO LIFE SUSTAINING INSULIN
A Metabolic Disease Pancreas does not make enough insulin, or body doesn’t use insulin correctly.
Usual Age of Onset
Adolescence, but can happen older.  NO KNOWN CAUSE.  NOT RELATED TO ENVIRONMENTAL FACTORS such as diet or amount of exercise.
40-60 years, but can happen in youth with genetic and environmental factors of poor diet and exercise
Symptoms
Appear SUDDENLY (within days or weeks):  frequent urination; extreme thirst; elevated hunger; extreme weight loss; lethargic, moody; blurred vision.  *Nausea, vomiting requires IMMEDIATE ACTION.
**Elevated Blood Glucose
Can come on gradually, may not feel a change in symptoms at all.  Increased thirst, increased urination and hunger.  Tired, sick to stomach, loss of weight, infections that are hard to treat effectively, blurred vision, loss of feeling in hands or feet.
**Elevated Blood Glucose
Treatment
Requires Insulin injections to stay alive.  Daily Multiple Injections of insulin taken by syringe, pen, or pump. 
Healthy diet; exercise, weight-loss/maintenance.  Oral medications and/or injections may be necessary.
Cause/Preventable
 Genetic markers with onset trigger of virus or unknown factors./ Not preventable.
Genetic and environmental factors./ Preventable, delayed onset.
Complications
Hypo (low)
 or Hyper (high) glycemia (blood sugar) that can lead to coma, nephropathy, blindness, heart disease, stroke, neuropathy, amputation, can be fatal if goes untreated
Hypo (low)
 or Hyper (high) glycemia (blood sugar) that can lead to coma, nephropathy, blindness, heart disease, stroke, neuropathy, amputation, can be fatal if goes untreated
Total of “Diabetes” population
10-15%
85-90%
Additional Information:

Sunday, June 9, 2013

There’s been something I’ve wanted to write about for a while now…as the journey goes on, the learning never stops, the morphing into whatever I need to be at the time, that time just keeps ticking away…without a cure.

My daughter has had Type 1 Diabetes now for 13 years.  The “they should have it figured out in ten years” milestone has come and gone…then the “who told you that?” phase was short, moving into, finally, acceptance.   I sit and let the word resonate on my palate like a fine wine.  Then I cry.  For a moment, it seems that hope is lost.  Hope, is gone. 

No cure, no end in sight, night after night of praying and tending to the ghost of what might happen if I let my guard down.  More number crunching, more juice boxes bought for the “lifesaving shelf” (I should have bought stock in Juicy Juice!) , more number crunching, an eye on what the next best thing will be to make her life just that little bit more “normal”.  My emphasis switches from relying on hope to relying on the practical items that will get her through the day, make her life better, the practical of Living with Diabetes.  I hate it.  Is this what it is going to be?  Hearing day after day about another child passing away, another struggling with diagnosis and asking, “why?” … The day in and day out of working to make a difference…until, when, exactly?  Bitterness, exhaustion…defeat. 

But then…wait…what is that???  If I listen closely enough, I can hear the pitter patter of little feet in the back of my mind…as the steps grow louder and bolder, I recognize this old friend that has helped me time and time again…HOPE.  Oh…I have missed you…HOPE…HOPE!  Hope for a Cure, Hope for a better life, HOPE!

If there is one thing I’ve learned through this journey, it is that without my side-kick, Hope, I am truly lost.  And I will HOPE.


A short story to share the Footsteps of Hope:  We were fortunate enough to be able to include a glucose monitor in our toolbox of “the next best thing to make life better, a little more “normal”…if sticking another device into your child is acceptable to you as “normal” in this life we call diabetes!

We received our Dexcom on a Wednesday and decided to wait until Saturday to start so that we could both watch the video and learn together, and, not rush the process.  We were both a little concerned about the “plunger” – manual insertion – as the Minimed had a spring loaded device and that had hurt terribly.  Caitie decided to ice the spot while we watched the video of how to insert the sensor.  (2 minutes,tops!)  I helped with the first one and, being the first time, it was awkward and we didn’t hear the two clicks right away…but got it done.  Caitie said it did not hurt at all!

Caitie went to a friend’s house to hang out that evening while we were out with friends.  We picked her up and got home around midnight.  We looked at the CGM and it said 130 with an arrow down.  We tested and the meter said 141.  We discussed a snack, or, were we at the “bottom of the arrow” since her BG was 141.  Caitie said she didn’t feel like she was dropping.  I stayed up another ½ hour to check her again, to see where she was.  At that time the CGM said 140-something (I can’t remember right now!) and so I went to bed and she was asleep.

At 4am I heard an alarm and went in to check on her.  I don’t think I heard the alarm the first time, and, Caitie was sleeping right through it all.  I cleared the alarm and got her test kit.  The CGM said 48!
I tested and she was 52.  I grabbed two juice boxes and got her to drink them (still sleeping).  I waited 15 minutes and tested her again…51… got another juice box and had her drink that one … she finally started to rouse and was drowsy.  She gave me that teenage look like, “Why are you sticking that straw in my face?!”  Another 15 minutes or so she tested at 78.  I waited a little while longer and she finally was in a safe range.  I think that the CGM saved her life that night.  The very first night of wearing it.  If it wasn’t that, I certainly believe it saved her from having a seizure.  I got goosebumps.  As a parent, I was breathless.  This CGM is a step in the Hope that I have for a Cure…it is a step in the right direction…that there are people out there working to save my daughter.

I have been asked, recently, what I wish for my daughter…without hesitation but with tears immediate to my eyes, I whisper, “A Cure”.  I clear my throat, allowing my voice to strengthen, and I again say, to anyone who asks that question, “A Cure.”  Hope brings me closer to that Cure, Hope lifts me out of bed in the morning, through the challenges of each and every day, and Hope is there when I drift off to sleep.  Hope is what I share with my daughter.  How different life would be for all of us if … … …


And, so, I say, Hi, Hope.  Thank you for being beside me until that day comes.  Please don’t ever leave again.