Keep On Keepin' On

Keep on Keepin’ On

May 11, 2015

I think I’m beating a dead horse when I mention that in 2012 our lives changed forever when my baby Aiden was diagnosed, at age 7, with Type One Diabetes.  I don’t think I have ever been so devastated in my life. Manageable, but devastating nevertheless.  Just when I thought I’d caught my breath from that sucker punch, life kicked me when I was down by diagnosing my sweet Asa  5 months later.  First graders should never have to know or experience daily finger pricks and shots.

 

Obviously, I jumped right on the bandwagon to learn as much as possible and take as good care of my babies as possible.  I delved into all manners of Type One Diabetes reading and research so I could be the best substitute pancreas I could be.  I was thrown into a world of carb counting, insulin dosing, medical supplies, and continual worry on top of sleep deprivation.  Such is my life, and I’ll do it as long as it takes if it means my boys are healthy.

On top of being a pancreas, I’m still a Mommy, a wife, and a Nurse.  I have a job.  Granted, I shaved my hours down a bit (after I paid off two pediatric hospital bills) so I could focus more on my boys, but I still work hard.  I enjoy every shift taking care of my patients…my new mommies and new babies who deserve the best and healthiest start possible.  Further, I truly enjoy working “behind the scenes” to make our unit as highly efficient, safe and functional as possible.  I have been happy in my career for the last 18 years (wow…can’t believe it’s been so long) and loving my place of work for the last 13. Nursing is a great career that allows me the flexibility to be the kind of wife and Mommy I want to be (and helps support my Bon Jovi habit!).

Somewhere in there, I find time to mentor new families for JDRF, which is rewarding and depressing at the same time.  I love helping someone who is brand new navigate this crazy highway called Type One Diabetes.  However, I’m saddened to know that each time a family is sent to me, that means there is another child out there who has to live like mine do.  I’m left wondering how many out there are diagnosed who do not reach out for help. 

After a year of dealing with T1D and feeling like a crazy person, I wrote "Mommy Can't Fix It"  My primary goals in writing the book were to share our story and help others not feel so alone or crazy when faced with the lifelong illness of their innocent child.  It truly warms my heart when someone reaches out to me to tell me how it helped them or when I am recognized in the Diabetes circles because of my book.  Currently, I’m steadily selling copies, and the money goes into an account to be donated to our JDRF One Walk Team each year.  Two-fold benefit:  helping others and raising money!

Finally, I delve a lot of my time and energy into raising money for JDRF to find better treatments and a cure for Type One Diabetes.  I’d give my right arm if it meant my boys, and those like them, had a cure. I may have trouble typing or combing my hair if I did, but I would do it!  I really feel like it’s the most I can do.  I can’t cure my boys myself…I can’t fix it…but I can help those who can!  Crossing my fingers we’ll see a cure in my lifetime…in their lifetime.

Pancreas.  Mommy.  Wife.  Nurse.  It all adds up and is exhausting.  However, it’s what I signed up for.  Probably borderline perfectionist and admitted over-achiever, I want to do all of my jobs as well as I can.  It’s what gives me intrinsic worth and value.  Half-measure and failure are not options.

Lately, people at work are taking notice of what I do.  My patient care.  My committee work.  And now, my community service through the book, JDRF, and working Texas Lions Camp.  I NEVER expected to receive attention or awards for doing what I do.  Frankly, it’s just icing on the cake.  I’m humbled and flattered.  That I know of, I have been nominated for three local or regional awards through my employer.  I did not win Great 100.  Congratulations to all who did and deserved it!  I was a finalist for D/FW Hospital Council’s Employee of the Year.  I did not win that either; there were a lot of great and deserving folks in that room, too!

The Healthcare Heroes brochure and my photo

My Admin team along with Volunteer of the Year nominee Mr. Neal

As I rode to the D/FW Employee of the Year ceremony with one of my VPs, we talked about my work.  Summed up, I told him I was SO honored that what I do makes an impact.  I’m delighted that my family, friends, administration team and co-workers have taken notice.  I feel privileged to be a part of such an elite group of nominees.  I am humbled.  With that being said, the recognition is incredible, but that is not why I do what I do. 

Screen Saver at Work

I volunteer for JDRF to help others…help I wish I had had that first year.  I wrote the book (and this blog) for catharsis, sharing and to help others.  I worked at TLC to be with my boys (who keep re-attaching the cord I’ve cut many times) and to learn more about T1D from those living with it.  I raise money annually for JDRF One Walk so that I may somehow contribute to a cure for my boys.  They are the heart that beats in my chest, and I know they have SO much to offer this world.  I’ll do whatever it takes to keep them whole.  I am a good nurse because that is what I went to school for, and I love my patients.  I try to be a good leader among my peers so that we can all do our jobs well, and all patients are safe and cared for.  I work on committees and education to help advance nursing practice and give myself and my co-workers the best workplace possible.  Finally, I teach nursing students so they too will learn to love the career they are embarking upon.  

Wow, that sounds like a lot on paper, and I guess it is.  It’s all part of who I am and what makes me ME.  Win or lose the awards, I’ll keep doing what I’m doing because I believe in what I do.  I’ll keep on keepin’ on!

Thanks to each and every one who has donated to my team, purchased my book, and supported me personally or professionally!  Nothing is possible alone, and I could not have done what I do without support.

www2.jdrf.org/goto/FuseAATeam

For my husband, my children, my twin boys….

Rhonda

Mommy Trophy

Mommy Trophy

I don’t think there is a decent parent around who doesn’t question regularly if they are doing the right thing.  I often wonder if I’m being too hard?  Too easy?  Teaching the right lessons?  I wonder what issues will cause them to sit on the therapist’s couch. There are days I want to scream or crack myself over the head with a brick. Diabetes only complicates this already delicate issue.   I guess I have enough self-doubt because I there are no dress rehearsals, and I really want to do thing Mommy thing right!  At times, I get praise from strangers who notice how my children behave in public.  I get feedback from teachers regarding my sons’ good behavior at school.  (I guess they save it all for me).  My hubby reminds me I’m a good Mommy.  Yet, nothing speaks louder to me than the accolades from my kids.

Disclaimer:  I’m know they’re biased and are supposed to love me unconditionally. 

When my daughter was growing up, she made a poster in Elementary school about her hero.  Me.  So freakin’ cute and touching.

I have two step-children, who I consider mine.  Each of them have written English papers, unsolicited, unexpected about me and my role in their lives.   Parenting is thankless enough; step-parenting is even harder!  Chokes me up. 

At Open House last week, there was a display in the hallway of papers the 4^th grade children had written about their heroes.  Some had rock stars.  Some had athletes.  My Asa wrote about me.  Honestly, I couldn’t read it right then and there because I didn’t want to go to work with cry-face.  Asa is my tender-heart.  He’s a lot like I was as a child.  He wants everyone to be happy, all to be fair, and he’s a pleaser.  Asa, like his Mommy, also likes to write.

Since the paper was on display, I don’t think he would mind me sharing:

Paper's cover photo.  "You inspired me to work in a hospital"

10-year-old Asa (I’ll correct some mistakes and clarify as needed)

Do you have a hero? Someone you’d like to follow in their footsteps?  If you don’t, you need one but don’t copy their lifestyle because the world will become plain. To make the world a brighter place you should read this paper.

My mom is always helping others and here are three examples.  First, my mom is a nurse, someone who’s always helping others out. Second, she cares for others and brightens their day. Lastly, she’s always doing what someone else wants to instead of what she wants to do.

She’s always telling the truth and here’s how.  She always tells the truth no matter what. Next, she always stands up for her mistakes no matter how bad they are (not sure what egregious mistakes he means, lol).  Lastly, she’ll always say what she thinks of people.

Lastly, she’s always trying to have a good time.  She’s always trying to have terrific times and memories. Two of her ideas of a good time is relaxing or going out with her friends. Best, she likes to go to the park with my family and me on a nice day.

Now that you know some different ways to be kind, try to help the world be a brighter and happier place like she does.  But, don’t try to copy their lifestyle because everyone has their own way of living.  Now that you know some different ways to be kind, you should spread kindness.

Asa

Just when I am convinced I am doing it all wrong, I get little nuggets like this. It puts fuel in my Mommy tank that is often running on fumes.  I sure hope he’s this in love with me when he’s a teenager!

I don’t know about you, but his paper made my world a better place!  Maybe I’m a little sensitive to the issue because I really want to do well at this and raise honest productive members of society.  Maybe I’m super sensitive to what these twins say and do because I treasure each moment, knowing Diabetes could have already taken or could take them from me too soon.  Humbling.

I’ll continue to do my best and enjoy every minute that I can!

Rhonda

Fun Fours

Fun Fours

There's a fun little meme making its way around the DOC.  It has that old “slam book” feel about it.  I first saw it on Joanne'sblog. I thought I'd take part just to keep the creative juices flowing.

1. Four names people call me other than my real name. 

a)  Momma – I’m not Mom.  My mom is “mom”.  I’m Mommy or Momma.  It’s one of my favorite titles.

b)  Honda – If you ever say it to me, I may be forced to cut you (and probably unfriend you).  Something that came about when I was a baby because I rode on a Honda motorcycle around the trailer park (keeping it classy)..and it’s one letter off of my name.

c) Mrs. Fuselier – I know it’s technically true, but it usually weirds me out a little.  It sounds so formal and uptight, and formal I am not.  However, I’m required to have my nursing students address me as such.

d) Babuh – Easily one of my favorite things to hear.  It’s our name for each other, and it’s unique.  Copyright pending.

2. Four Jobs I’ve Had 

a) Cashier at Eckerd Drug.  For those of you who don’t know what Eckerd’s was, think CVS.  Pretty much same thing.  I made a whopping $3.18/hr.

b)  Phlebotomist.  I moved up in the world to a substantial $6.25/hr.  For five years, I jabbed needles into people to extract their blood.  I heard every vampire joke in the book.

c)  Nurse.  Since age 22.  I’ve done a few different roles in Nursing.  Babies.  Mommies.  Risk Management. Charge. It’s a rewarding career.  I’ve got stories that can keep you entertained all night.

d)  Nursing Instructor.  Most recent job.  I didn’t know if I’d like it, but I actually LOVED it!  It was so much fun to teach nursing students.  They challenged me to think.

3. Four Movies I’ve Watched More Than Once 

a) Top Gun.  Oh my, Tom Cruise.  The Beach volleyball scene.  The tighty-whitey scene.  Enough said.  Made my teenage hormones stir.

b)  Dirty Dancing.  Nobody puts Baby in a corner.  Teenage hormones again.

c) Footloose.  Probably would be so cheesy if I watched it today, but I sure did like that one!  Did I mention I had teenage hormones?

d)  Riding in Cars with Boys.  Such a good movie.  I could relate.

4. Four Books I’d Recommend 

a) The Kite Runner by Khaled Hosseini

b)  Decision Points by George W Bush

c)  Heroin Diaries by Nikki Sixx

d) Mommy Can’t Fix It (By Me) J

5. Four Places I’ve Lived 

a) Texas City, Texas

b) Arizona

c) Missouri

d) Fort Worth, TX (and other cities in TX)

6. Four Places I’ve Visited

a) New York City

b) Cancun, Mexico

c) Los Angeles, California

d)  St. Joseph, MO.  Trust me.  It’s as boring as it sounds and not nearly as exciting as the first three cities I mentioned.


7. Four Things I Prefer Not To Eat 

*This one was very hard because I love food and am NOT picky.*

a)  Licorice. Gag a maggot.

b)  Italian Sausage.  Just tastes like licorice burps to me.

c) Croutons.  Stale bread is a waste of calories.

d)  Dogs.  Maybe I shouldn’t judge, but it sounds appalling to me.

8. Four of my Favorite Foods
 a) Steak.  (Prime Rib, T-Bone, Ribeye, Filet Mignon).  Cow’s ok; dog, not so much.

b)  Mexican food.  I could eat my birth weight in chips and salsa.

c)  Italian.  Gotta love some good pasta, especially if artichokes are involved.

d)  Indian.  Much to my husband’s chagrin, I love me some curry (and garlic)!

9. Four TV Shows I Watch

a) Modern Family.  One of the wittiest and most real sitcoms on TV today.

b) Breaking Bad.  Easily one of the best, if not THE best, TV drama ever written.

c)  Sons of Anarchy.  Didn’t think I would like it, but we are marathoning this one like a Kenyan!

d)  Cougar Town.  Funny stuff.

10. Four Things I’m Looking Forward To This Year 

a)  Bon Jovi trip.  Need my fix.

b)  Girls’ Vacation (s).  We’re doing a lot of celebrating turning 40!

c)  My annual anniversary vacation with The Man!  It’s always a highlight of my year!

d)  JDRF One Walk.  The AA Team is back in action and hoping to keep their standing in the Top Five Family Teams.

11. Four Things I am Always Saying 

a)  Dag gum!

b)  Do your chores and homework?  Did you do your chores and homework?

c)  When’s your due date?

d)  I love you

Three Years Sweet and Strong

Third Diaversary:  Three Years Sweet and Strong

February 20, 2015

I can vividly remember the day (s) all my children were born, and I can tell each of them their birth stories.  I can vividly remember the day our lives were forever changed when the pediatrician called me and said, “You were right.  Get Aiden to the hospital right now!”  It’s Diabetes’ birth story. Even typing it, three years later, I still get chills and tears well up in my eyes. 

Three years ago today, Diabetes officially invaded our lives. I can recall vividly the fear, helplessness, despair, worry, and pain of that day.  It still makes me cry. Although it’s now routine, no two days are the same. … it’s sort of like my job in Labor & Delivery.  Most days are fine; some days are great; some days just plain SUCK!  I’ve learned a tremendous amount over the past three years, and I know I’m light years away from knowing nearly enough.

Three years ago today, we were completely lost and devastated.  In three years, we have had approximately 292 pump site changes, 8760 finger sticks, 1532 insulin shots, one million carbs counted, countless late and long nights, and an infinite amount of skin rashes.  Three years ago, I only knew the basics to keep my son alive.  Through research, reading, information-sharing and sheer trial-and-error, I know enough to teach Aiden to care for himself.  I know enough to give Mr. Diabetes one hell of a fight, but he still sucker punches me now and then and doesn’t play fair. Over this course of time, I have learned enough and am involved enough to be recognized and asked to help others. Three years ago, I would have laughed at you if you told me this is where I would be now.

This disease is crappy.  Each “diaversary”, I cry when he is out of my sight; I die a little inside to be reminded how long we’ve had to deal with this.  But in front of the kid, we’re positive.  We celebrate Aiden’s life with Diabetes. I’m so proud of my Aiden, so proud to be his Mommy, and so proud that I still get to hold my baby every day.  He has grown tremendously physically and emotionally, and he’s on top of his Diabetes care. I set a standard on year One, now a celebration is expected.  So, today we celebrate.  We’re going to celebrate that Aiden has not been re-hospitalized with complications. We’re going to celebrate that he has been so big and brave in accepting his diagnosis. We’re going to celebrate how much we’ve learned.  We’re going to celebrate that it’s not worse (although it could be so much better).  We’re going to celebrate that we live in a day and time where treatment is available and a cure is on the horizon. Aiden easily asks 176 questions per hours, but I am so thankful to be able to hear each and every one, because the alternative sucks!  And, through the tears, we’re going to celebrate that my baby is still alive to live a full life!

.

Rhonda  

Year One:  http://twotoosweet.blogspot.com/2013_02_01_archive.html and http://twotoosweet.blogspot.com/2013_08_01_archive.html

Year Two:  http://twotoosweet.blogspot.com/2014/02/two-years-sweet-and-strong.html

CAKE

Cake

February 1, 2015

Spoiler Alert:  I’m going to talk a bit about the movie, Cake.  I don’t think I’ll ruin anything, but you’ve been warned.  You can always return to read this after you’ve watched the movie, although I don’t think I’m going to take away from the movie with what I say.  Moving on….

So, yesterday, Memaw took the kiddos, and my hubby and I spent our much-coveted time alone watching a movie and having a big lunch.  He chose the last movie; this time, I chose CAKE.  I absolutely adore Jennifer Aniston.  Brad Pitt totally stepped down when he left her for Angelina Jolie, but I digress.  I think Jennifer Aniston is a great actress, and I was eager to see her in a serious role.  All I knew about the movie was that it was a story about a woman addicted to pain pills.

Beautiful Ms. Aniston as Claire Bennett in CAKE

At times, the movie was a bit slow, but I feel it was necessary to demonstrate the despondency of the main character’s life.  In the movie, Claire Bennett was a high-functioning lawyer with a husband and a child.  She experiences a tragic accident that left her scarred, in chronic pain, and addicted to pain pills.  To boot, her son was killed in the accident, which precipitated Claire’s fall.  Physical and emotional pain completely did her in.  In a moment, her life completely fell apart.  I knew watching, I was Claire, sans the tragic event that caused her spiral into darkness.  Only one degree of separation.

Now, wait..don’t stage an intervention or anything.  I’m not hooked on alcohol or pain pills.  I don’t have chronic pain.  More so, I could see how someone seemingly so put together and strong could be so easily devastatingly taken down.  I equate it to Jenga.

My solid sturdy life

Claire was all put together, but someone removed one critical Jenga block and made her entire world, her whole tower, come tumbling down. Like Claire’s life, my life is a pretty solid tower.  I have a good family, decent kids, great husband, and we comfortably take care of ourselves.  However, what’s built me up are critical blocks.  Misplacing one can shake the whole tower.  And, it’s happened to me at times in my life.  Five Bad D’s have been the culprits that have moved blocks and caused my whole tower, my whole life, to wobble. Death. Divorce. Depression.  Deceit.  Diabetes. 

One critical block remains in place

 Somehow, some way, each time, I’ve been able to make the shaking stop and re-solidified my tower. That one critical block was left in place.  I credit having a loving husband, supportive parents, great friends, soothing Bon Jovi, my kids…and probably just some sheer pig-headed stubbornness for bringing me up when I’ve been down.

In the most seemingly solid Jenga tower, there’s always ONE brick that makes the entire tower topple. As with most mothers, the hugest part of my existence surrounds protecting the health, life, and safety of my children.  It’s on my mind every minute of every day.  Keeping them safe and happy is paramount to my existence, and it’s the one critical Jenga block that holds this tower completely together.  If even one was taken from me, my holding block would be gone, and I would topple into a pile of rubble.  No longer would my life look like a solid tower, but instead would look like a pile of blocks, no resemblance to the tower it once was.  I put myself in her shoes, and suddenly, I could see how I could become Claire Bennett.

I did not judge Claire.  I saw myself.  If I was a betting woman, I would bet on the fact that I would fall apart, too.  Lying in bed.  Searching for a reason to exist.  Trying to numb the pain.

And, that, ladies and gentlemen, is one of the many reasons I fight so hard and do what I do to manage my boys’ Diabetes.  Mr. Diabetes is the primary enemy trying to knock that block out of place.  One wrong move, and He wins…and I am Claire.  So when I talk too much; I am too tired: I am too eager; Ask too much; I am too aggressive....I'm keeping my Jenga block in place.

Pushing to keep my block in place while Diabetes pushes back

As I watched the movie, watched her cope with her physical and emotional pain, I just cried.  Perfect one day, destroyed the next. Rubble.  A life in shambles. I can only imagine, and I hope I never have to know for sure.  I may appear strong, but even Super Mom has her Kryptonite. 

So, watch the movie.  Tell me what you think.  Please don’t say, “Well, you have other children to live for, blah blah blah”.  I’m aware of that.  My point: I don’t know that I would be any different than Claire, and that really struck a chord close to my heart and soul.  Next time you see someone self-medicating their pain, be sympathetic not judgmental.

Rhonda

No Finish Line

No Finish Line

January 26, 2015

I had big hopes this time last year.  I was going to get fit! Diabetes had taken all He was going to take from me in 2013!   I was going to get back on track and return to the shape I was when I was at my finest…late 2010!  (Late 2010 was about 14 months before Diabetes decided to crash the party).  It was time to take charge!

The road to hell is paved with good intentions, and that’s basically what happened to me.  I tried. I meant well.  Work stress.  Tired from managing Diabetes.  Other drama I don’t care to discuss. Getting and keeping people healthy is exhausting.  Fatigue and life got in the way! But, instead of shaping up and losing a bit of body fat, I found more.  15 pounds to be precise.  I’ve never been this heavy outside of pregnancy in my life!  In the grand scheme of things, I realize it’s not too bad, but for me, this is wicked fat!

So, again in 2015, I have a mission.  I want to lose what I found and get in shape for our fall 15^th anniversary trip!  It CAN be done!

I am working hard at making myself go to the gym.  I have my gym trips planned, and I got a treadmill for Christmas to get a few extra steps in.  I have a new puppy to walk.  Last week, I was doing some cardio at the gym, cursing my mother and Jesus while I climbed the never-ending stairs!  I was feeling quite sorry for myself, and I started thinking.  You know…this is bull!  Why can’t we work hard to get to a shape we’re happy with, press a button, and then it just stays there.  Why does it require constant work? 

As I continued the pity party, it dawned on me.  Working out is not really much different from managing Diabetes.  I can be in tip-top shape, but I still have to watch what I consume and make sure I’m changing up workouts and exercising regularly in order to maintain. 

Well, Mr. Diabetes requires the same perseverance.  It’s a marathon with no finish line.  Ever.  Every day, I have to watch what the boys eat.  Every day I have to consider and adjust insulin rates given their meal, growth, season, activity level, stress level, etc.  Each day I have to monitor them closely in my quest for the coveted Hemoglobin A1C in the 6’s.  What?  Why are you laughing?

Just like a number on the scale (or calipers) and how I feel tells me I’m doing great with my own body, that A1C tells me I’m doing good battling Mr. Diabetes and keeping a steady pace in the Diabetes marathon.  You see, I have to.  The only finish line is death, and I don’t plan to see that in my boys while I’m still breathing.  Working out, I’ll never see the finish line.  The only way I’ll see a finish line in either race is if I give up and quit.  Quitting my fitness regime yields bad health and perhaps obesity for me.  Not an option.  Giving up on the constant vigilance that Diabetes demands yields bad health, complications or even death for my boys.  Again, not an option.

So, pity party over.  This is what I have to do.  Nothing good comes easy.  I’m going to make myself get back to my very attainable goal weight and shape…and maintain. When I have a bad day, I’ll start again the next day.

I’m going to continue to work hard, learn more, and be diligent with my boys’ care in the quest to keep them healthy.  When we have a bad day, we’ll make adjustments and start over!  I'm going to love the journey to help them learn to care for themselves and raise $ for those who can expedite better treatments and a cure! And maybe one day, I’ll see that A1C in the 6’s.  *Stop snickering*

Such is my life.

Rhonda

Tip of the Iceberg

Tip of the Iceberg

November 25, 2014

Type One Diabetes is like an iceberg; people do not see what is going on beneath the surface just to stay afloat.

I was inspired by this photo.  First off, icebergs totally freak me out; Diabetes freaks me out at times, too, and I could not think of a more fitting analogy.  T1D does not look like much above the surface, but underneath is a massive complex disease that requires constant vigilance to stay afloat.  Faltering leads to the iceberg breaking or sinking.

10th birthday,  Oct 2014

What you see when you look at my cute boys is only the tip of the iceberg.  Two little boys who, from the outside, are seemingly perfect and healthy.  Two beautiful boys who are funny, witty, and smart.  Two little dudes who make good grades and are classroom leaders.  Two little men who want to be doctors when they grow up. Two little guys who do not have one functioning pancreatic beta cell between them.

What you see on the outside is only the tip of the iceberg.  They look so good because of what goes on underneath.  In order to keep the iceberg afloat, a tremendous amount of work, worry, blood, sweat and tears occurs under the surface.

Under the surface is a Dad who takes full duty when Mommy is away.  He handles insulin dosing, pump changes, and monitoring with a side of fatigue and worry.  He works hard to analyze the available medical coverage so we can obtain all the latest gadgets possible to keep the tip of this iceberg afloat and majestic.  Under it all is a Dad who loves his little clones and spends the majority of his annual bonus in healthcare spending and a chunk of his paycheck bi-monthly so we can take care of ourselves. 

Mommy and Daddy Pancreas at the JDRF One Walk, 2014

Under the surface is a Mother who is worn to her core with worry, analysis, late and long nights, and fear. She has to put her own care and needs on the back-burner for the sake of all of her kids and is aging exponentially form the unrelenting fatigue. Under it all is a Mommy who still gets choked up when she remembers the day she heard, “Get him to the hospital now!” and "You've got another one!".

Under the tip of that iceberg is a load of math, voodoo, science, sorcery, and luck.  Every morsel of food that is consumed must be measured and considered.  How many carbs does it contain? How many fat or protein grams? How will this impact his sugar now?  Later?  Does he need insulin for it?  How much? Every. Single. Bite.  Nothing gets zero consideration.

Yep, that's me..with bigger boobs, trying to mix the right potion to make it all go away

Beneath the exterior are the gadgets we use to help make their complicated little lives just a little easier. An insulin pump to deliver insulin constantly (basal) to keep his organs working AND when needed for food (bolus).  An insulin pump that has to be changed every two to three days and requires a biting STAB for insertion. A device that is taped to their terribly sensitive skin.

Asa, forgetting he has an insulin pump on his right arm, Dexcom on his left

Also attached to their sensitive skin is their Dexcom CGM (Continuous Glucose Monitor).  This is a tool only to help us monitor rising and falling glucose levels.  Synced with NightScout, it wakes us in the night to alert us if something is wrong…in addition to the several times per night we wake up on our own and look at the screen.  Dexcom is a tool only.  We still have to stay up at times.  We still have to use our brains to process all the information.

On a rare "quiet" night, we still wake up multiple times to check

Under the iceberg’s peak are two home glucose meter systems (complete with meter, alcohol prep pads, strips and lancets) that are used 4-10 times per day to poke a tiny hole in the tips of their fingers, draw out blood, and give us a glucose measurement for the moment…this moment only.  It changes minute to minute.

Below the surface are two tired parents, two humans functioning as someone else’s organ, two brains that have to put it all together.  Every meal. Every day.  24/7. No vacations or reprieves.  Someone is always thinking.  What is his sugar? What is he eating? How many carbs? Dose the insulin based on the preceding three questions.  Watch and wait. Unexpected and predicted changes happen daily because Mr. Diabetes does not play fair.  What works today may fail tomorrow. Levels are impacted by stress, activity, age of the pump site, age of the insulin, color of his underwear.  Some days are good and it all works.  Some days make zero sense.  Diabetes does not play by the rules; He runs his own agenda.  It’s baffling at times.

Under the surface are siblings who care and who have to be on the lookout for their baby brothers and grandparents who work hard to help. Beneath it all are school teachers, staff and nurses who have to step outside of their comfort zones, with fear, and help two little boys stay healthy and safe while maintaining a piece of their normalcy and childhood.

Under the surface are quarterly venipunctures and Endocrinologist visits, $ . Annual (and as-needed) visits to the Pediatrician and Ophthalmologist to monitor for problems and keep them healthy, $. Beneath it all is a Momma Bear who will lose her marbles if you bring your “simple cold” cooties around her vulnerable babies, because simple for you can mean pain, complications, and hospitalizations for them, $.

Under the surface, despite it all, is a Mommy Pancreas who is so proud of these tough smart little boys and who is so grateful to be able to hold them and hug them every day.  Below the surface is a Mommy who is grateful to watch them thrive and grow, listen to their corny jokes, and referee their fights.  Underneath it all is a Mommy who is both proud and saddened by how much they know about their disease already.  Under the surface is a Mommy who can’t fix it and who would give her life to keep this iceberg afloat so that all outsiders see is the tip… two beautiful, smart, funny and otherwise healthy boys.

Rhonda