Wednesday, May 14, 2014

Diabetes Blog Challenge: Jar of Hearts

Diabetes Blog Week Challenge

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

In keeping with last year’s song revision theme, I’ve chosen to dedicate this song (slightly modified) to Mr. Diabetes.  I don’t mean to cause anyone untoward shock, but I do listen to and enjoy other music besides Bon Jovi.  So, with no further delay….

Jar of Hearts

No I can’t take one more day with you
Cause all that’s waiting is regret
Don’t you know I’m not your fool anymore
You struck the ones I love the most
I’ve learned to live half awake
Now you wake me one more time

Who do you think you are
Running around leaving scars
Collecting your jar of sharps
Tearing lives apart
Can’t even catch a cold
Something small can take its toll
So don’t come jack with me
Who do you think you are?


I hear you’re striking all around
For someone’s baby you can down
But I have grown too strong
To fall prey to your arms

I’ve learned to live half asleep
Each night you wake me one more time


Who do you think you are?
Running around counting carbs
Killing those beta cells
And tearing fingers apart
We’re going to find a cure
Determination in our souls
Don’t look back at me
Who do you think you are?

It took so long to learn and feel right
Remembered to put the light back in our eyes
I wish I had missed your kiss
Cause you broke all of our hearts
And now you won’t leave
You won’t go back
You can’t take my boys back

So who do you think you are
Running around leaving scars
Collecting your jar of sharps
Tearing bank accounts apart
Little fingers pay the price
Lots of sticks that don’t feel nice
Please back away from me
Don’t come back at all
Who do you think you are?
Who do you think you are?


Monday, April 28, 2014

The Power Within

The Power Within

April 28, 2014

Through Diabetes networking, I’ve been introduced to Dr. Stephen Ponder.  He’s a leading Type One Diabetes expert, Endocrinologist, and a 49-year T1D survivor!  I follow him on Facebook and through his website “The Power Within”.   I enjoy the educational pieces he shares, and I enjoy seeing pictures of the oh-so-photogenic Rango! I have learned so much about refining and perfecting my boys’ care. I truly respect what he has to say as he shares research, empirical data and personal experience.  And, it works for him.  I think his Hemoglobin A1C is better than mine, and I have functioning beta cells!

Dr. Ponder is the Medical Director of the Texas Lions Camp for Diabetes.  This weekend, I was fortunate enough to attend the Advanced Diabetes Seminar with my mother, mother-in-law and my twin T1D sons.  My tailbone could’ve done without the stress of traveling, but I digress.

In his opening lecture, Kickin’ D’s Butt, Dr. Ponder talked about “Unleashing the Power Within”.  It resonated with me.  He spoke of letting go of certain negative emotions and embracing and cultivating others that will unleash the power within oneself to deal more effectively with this disease. Whether a parent caring for a child with Type One Diabetes or as a T1D patient, one needs to unleash the power within to Kick D’s Butt!

         Work to Let Go of…         Embrace/Cultivate….

  1. Judging                              Acceptance
  2. Feeling Defective/Broke       Normalcy
  3. Shame                              Openness
  4. Fearing the Future              Enjoying the Moment
  5. Isolation                              Teamwork
  6. Pity                                      Empowering/Supporting
  7. Insecurity/Denial              Self-Confidence


As most know, I wrote a book about my experience coping with the 2012 dual-diagnoses of my twin sons with Type One Diabetes, Mommy Can't Fix It .  As Dr. Ponder lectured, I realized that I have Unleashed the Power Within. The light bulb flickered on.  Without using his words or terminology precisely, my book details my journey on the road to coping and unleashing the power within.

I was fortunate enough to give Dr. Ponder a copy of my book, and he seemed genuinely proud to receive it.

Work to Let Go of….

When Aiden was diagnosed in February of 2012, I was overcome with confusing and negative emotions. I feared for his future, I felt isolated and I felt (and was) pretty pitiful.  I was catapulted into a foreign community with no knowledge or invitation.

“I lost all faith in my God, and his religion, too.  
I told the angels they could sing their song to someone new.  
I lost all trust in my friends.  
I watched my heart turn to stone. 
 I thought that I was left to walk this wicked world alone…”  

Fearing the Future: The minute Aiden’s T1D diagnosis was confirmed, all I could think about was how immediately his life span was shortened.  At any given time, with mismanagement, he could be taken from me.  The idea of burying my child (regardless of age) because of this craptastic disease was enough to make me puke!

Isolation:  Besides my husband, I felt completely alone after Aiden’s diagnosis.  Plenty of family and friends offered sympathy, but nobody could completely understand how I felt.  There was nobody to bounce my feelings off of and know they understood.  Nobody was available for questions (outside of the Endocrinology clinic).  And, until people were trained, there was nobody to provide any respite so my husband and I could nurture our relationship. Even then, time away was filled with trepidation and worry.  It was a dark and lonely time.  There wasn’t a ME to talk to ME.

When Asa was diagnosed five months later, I regressed in the progress I’d made emotionally.  I had to mourn all over again…for another child.

With time, I began to Embrace and Cultivate the Power Within for my boys.   I had to dust myself off.  I had to suck my gut in.  I had to foster and embrace my resiliency for the sake of my boys.  Life had knocked me down before, and I got back up and fought back.  I was knocked down and kicked again before I could get up, but I got back up..and the fight began.  Resilience.

“Tonight I dust myself off.  Tonight I suck my gut in. 
 I’ll face the night and I’ll pretend I’ve got something to believe in…”

Acceptance:  Type One Diabetes was in the genes.  I knew this when I married Jerry.  I knew it when we had children.  Hoped to dodge that bullet, but no such luck.  I accepted this disease and thanked my lucky stars it wasn’t much worse.  Diabetes sucks.  It requires diligence every day, every meal, every minute, but it’s doable.  Diabetes is a formidable foe, but my boys can live relatively normal lives. I still get to watch them grow and learn. I can hug them.  I can hear them laugh and I can giggle at Asa’s silly jokes. They can succeed in life.

Openness:  Being a semi-private person, this was a harder thing for me.  I fear being viewed as weak.  I put myself out there to write the book and reveal very difficult, hard, dark and private emotions. Not all of my emotions were logical or nice, but they were what they were.  But, I did it in the name of sharing our story, spreading awareness and helping others.  My purpose was to be the ME that I didn’t have so that the next mother who is unwillingly catapulted into this disease can feel a little less isolated and a little more “normal”.

In addition, I'll answer questions and talk to anyone who will listen.  I like to educate to reduce bias and ignorance.  I like to spread awareness so that more money can be raised for research.  I have had to step outside my comfort zone and be more open with family, friends, co-workers and complete strangers.

Teamwork:  Where would my life be without Jerry?  Our moms?  I don’t even want to imagine.  As I touched on in “Mommy Can’t Fix It”, I am so blessed to have an intelligent partner who is willing to learn about this disease and take on an uncomfortable role.  He’s hot, too, so that really helps! He’s fantastic.  We’re a team in this.  I’m the Pilot; he’s the Co-Pilot.  We don’t do everything precisely the same, but there is more than one way to skin a cat. We learn from each other.  We teach the boys.  Together, we attempt to Kick D’s Butt!

Empowering/Supporting:  Two of the single-most important moves I took to unleash my power within was to join the Type One Family Network (TOFN) on Facebook and participate in the JDRF Walk to Cure Diabetes. TOFN is a network of other local families dealing with Type One Diabetes either themselves, with their children, or both.  I was able to read posts about how people felt.  I saw questions asked and answered that I had never thought of.  I was able to network with people who “got it”.  Suddenly I wasn't alone. I was able to exhale.

Further, joining the JDRF Walk to Cure Diabetes was a great way for me to feel like I was having fun with my boys, networking with other families, and doing something to help those who are dedicated to finding a cure for Type One Diabetes.  I felt if I couldn’t fix it myself, I’d help those who could.  There was certainly a learning curve as fundraising and asking people for help and money were foreign concepts to me.  I’ve always been very independent.

In two years time, our team has grown and now I serve as a JDRF Mentor for new families.  We’re participating again this year in the JDRF One Walk.  THE AA TEAM hopes to do as well or better than last year!

Self-Confidence:  I like to think I’m a sorta smart gal.  I know my husband has gray matter between the ears.  My boys are wicked smart.  Diabetes sucks, but we got this.  I seek information.  I want to know more, do better, live stronger.  My goal is to keep my boys healthy and strong until they have to take the reins in managing their own disease.  If I know and do well, I can teach them the same and they can stay strong and healthy across their long and healthy lives.  They have a tough order to fill because I plan to live to be 100 and I have zero intention of burying any of my kids!  Diabetes is tough, and sometimes He lands a punch.  But, I can do this!

“Though I know I won’t win, I’ll take this one on the chin.  
We’ll raise a toast and I’ll pretend I have something to believe in”
Something to Believe In, Bon Jovi

So, if you’re reading this and you haven’t already, do what works for you to Unleash the Power Within.  It’s in there.  Let it out.

Mommy Pancreas signing off,
Rhonda

Saturday, April 12, 2014

Mommy Guilt



April 12, 2014

I don’t think I’m special in my strong belief that acceptable parents should not unload emotional baggage onto their children.  This point is one I am especially adamant about with my kids. I want them to be kids; they’ll have enough adult emotional crap to deal with when they reach adulthood.  They don’t need mine now!  If I am upset and the kids ask why, I tell them the emotion I am feeling (ie, “I am sad but it’s nothing to do with you”) and reassure them that I am ok.  I refuse to unload adult problems onto their tiny shoulders as kids have a great knack for personalizing a problem and blaming themselves.

When Aiden became ill, I bawled like a baby.  Blubbered.  Lots.  I had to pull myself together before we took him to the hospital.  I’m sure he noticed my bloated reddened eyes, but perhaps he was too lost in his own fear to acknowledge mine.  I put up a good front for him.  It was only a front.  I was a wreck on the inside. Further, when the well-meaning social work/counseling staff interviewed me in Aiden’s room, I told them everything was fine.  There was NO WAY I was discussing my conflicting, confusing, dark emotions with them in front of him!  All I needed was for him to already be so scared and now feel responsible for upsetting me, too! (By the way, that is something I gave the Endocrinologist feedback about, but I digress).

Now, to my point.  Santa brought the boys Kindle Fires for Christmas.  Their Kindles are linked to my Amazon account, thus any books I purchase or own can be seen by them on the Cloud.  They can choose to download to their specific devices to read.  (Had to clean up that list quickly, but I digress again!)

The twins know I have written a book.  They know it’s about Diabetes.  They have seen the cover and title, “Mommy Can't Fix It”.  They have heard me talk about it to people, so they have a general idea about it. Aiden has asked more than once to read it.  My book is on my Amazon Cloud drive.  Aiden noticed it again two days ago and asked again to read it.  But, I can’t.  I tell him “no” and that he is too young.

I’m afraid for them to read it, and I don’t know at what age it would be appropriate.  I own my emotions; I own my feelings.  I am not afraid to share or discuss them with people.  However, I am so fearful to allow them to read the book.  It is a heavy load to carry.

1. They are too young.  I HATED hearing those words from my parents when I was growing up, yet I say the same words to them.
2. I fear they would read about the raw emotions I felt that first year (and still feel sometimes) and would then feel responsible.
3. I do not EVER want them to think I resent them or am mad at them because they developed Type One Diabetes.  Ever.  It’s not their fault and it sucks.  We all just have to deal with it.
4. I do not want them to feel responsible for upsetting me at all.

Already Aiden feels bad that I have to stay up at night or get up frequently to check on them.  I do not act like it’s a big deal at all, but he feels bad and personalizes it.  Mommy, I wish you could hire someone to check on us so you can sleep?  Mommy, why don’t you make Daddy get up and check us?  I tell him it’s my job and I’m happy to make sure they are ok in the night.  I can always take a nap. What on Earth would he think if he read how emotionally wrecked I was!?!

Perhaps when they’re older and can separate themselves from the emotions I felt about their disease, then they can read it.  But, what’s the right age?  What will be the deciding factor when I finally say, “Ok. Go for it!” ?

What would you do?

Rhonda

Sunday, April 6, 2014

Twin Tales (Growing Older)

April 6, 2014

In the past when I blogged, I had two series.  One was "Jace-isms" which chronicled the genius things baby Jace said, and when the twins got older and likewise became so genius, I had a series called "Twin Tales".  I really wish I had been this wise to jot down the clever and funny things my older kids said and did, but I didn't.  We learn from our mistakes.  Now, I keep a running list of the silly and funny things these boys say because they are a constant source of amusement (especially Mr. Asa).  So, this is another edition of Twin Tales.

2/13/2013:  Jace was arguing with Aiden for some unknown asinine reason
Aiden: Oh, yeah, how do you know, Jace!?  You’re only like 2 months older than us!
Jace:  No, I’m not!  (To himself…May, June, July, August, September, October)…..I’m FIVE months older than you! (Never mind the year difference).  I guess I just breed like rabbits!

2/17/2013:  Aiden was being grouchy and disagreeable to whatever I said.
Aiden:  Jace, Will you get my werewolf jacket? (said with an attitude)
Me:  “Will you get my Werewolf jacket, PLEASE?!”
Aiden:  PPPLLLLEEEAAASSSEEEEE!  What IS IT with you and MANNERS?!

2/18/2013:  Jace, who is incredibly willful, to twin who was refusing to put on his seatbelt,… “Now you’re acting like me!”

3/9/2013:  Asa, “Wow, I’ve NEVER seen a white firetruck!  That’s like, the second time in my life!”

5/1/2013: Anytime a boy gets us alone, they talk incessantly.  While coming home from the doctor, Aiden asked, “How did you get Daddy to marry you?  Did you take him to Six Flags or something?”  (I took him for a ride, apparently)!

7/28/13 Was telling Asa about going to camp and how only boys slept in one cabin.  He said, “Why?  Is it mating season?”

7/29/13  Aiden, talking my ears off, started discussing what he’d like to be when he grows up.  He said, “I’m thinking maybe I can be a doctor, or an animal doctor…or I can just give up on those dreams and be a rock star!"  Way to dream big, son!

2/20/14 Asa:  When Daddy tooted, “There’s a beast in that man!”  (Ok, toot is a huge euphemism. It's more like an explosion!)

Asa:  When adults were laughing in conversation in the kitchen, he laughed right along.  As he giggled he said, “I don’t know why I am laughing but I’m laughing”…very Brick from Anchorman!

Aiden:  “I don’t like spicy foods; they make me gassy!”  As if he needed any help...he is his father's clone!

April 4, 2014
Aiden, squeezing lemon into glass, “Oops.  I just shot my seed in there!”

Sometimes I just have to laugh and walk away.  I can't even respond!

Saturday, April 5, 2014

If, Then

If, Then

April 5, 2014

If you indulge your children and they eat crappily, their sugars get high.

When their sugars get high, you get tense.

When you get tense, you lose sleep.

When you lose sleep, you NEED to sleep.

When you need to sleep, you get cranky.

When you get cranky, you drink too much wine.

When you drink too much wine, you have a new empty sharps container.

You don't have to indulge your children to get a new sharps container!  Indulge yourself instead! ;)

Rhonda

Friday, February 21, 2014

Hungry Trauma and Thorn in My Side

Hungry Trauma and that Thorn in My Side

February 21, 2014

I never cease to be amazed at the things that strike me as odd about Diabetes or the things that make me cry.  Most days, I feel like “This sucks, but I got this!”  Other days, I’m taken aback. My mind is constantly churning, trying to understand, do better, find solutions.

On Aiden’s Diaversary Eve (Wednesday night), we had Baked Potato Soup for dinner.  It was fabulous, if I do say so myself. Lots of carbs that I dosed for, a little lacking in protein.  I was wicked tired that evening given the crapola night Diabetes had handed me the night before.
Two Years Sweet and Strong
At 7:30 pm, just  prior to 8:00 pm bedtime, the boys were a respectable 96 and 130 each.  I cracked a smile!  Take that, Diabetes!  They each had a snack bag of nuts.

At 9:30 pm, I decided to check the boys a little earlier than I ordinarily do in hopes that I could go to bed.  Apparently, Diabetes saw that smile and felt my pride two hours earlier.  He rubbed my face in it!

Asa was on the bottom bunk.  Usually, when I grab his hand, he instinctively jerks back away from me or his hand is relaxed so I can pick a finger (or toe) to poke.  He's a fighter! This time, instead, he stirred and began muttering, “Hungry, hungry, hungry, hungry…”  It was the tiniest, quietest, quivery, most pathetic voice or thing I have heard in a long, long time.  As soon as he said it, I knew he must be low.  39.  I choked up.  I just wanted to hold him and tell him it would be ok, but that wasn’t going to help.  I had to intervene to save his life.

Under usual circumstances, a bedtime low would have me frustrated, cursing Diabetes under my breath.  But on this night, I was exhausted, and my emotions were raw due to the next day’s Diaversary.  After checking Aiden, too, (he was a whoppin’ 32), I ran downstairs to gather carbs.

I felt the tears welling up but I had to stave them off so I could intervene.  Each boy drank 4 ounces of chocolate milk, ate a few bites of a banana, and washed it down with half a juice box….all while asleep.  When I returned downstairs, the flood gates opened.

Diabetes won that night.  He got under my skin.  He got to me.  My baby’s sugar was so low, his brain was trying to send a message to his body.  His brain, desperately deprived of its only fuel source, glucose, was crying out for help.  “Hungry, hungry, hungry, hungry….”   Even while asleep, his body was begging for intervention, begging for what it needed to survive.

I cried to know his body was so desperate.  I cried to know I’ve been dealing with this for two solid years and I don’t know when it will end.  I cried because I was tired beyond belief, and now I had to stay up for at least an additional hour to make sure they were safe.  I cried because a little child should not have to beg for what his body needs to survive.  I cried in fear of what may have happened had I waited another hour to check, as I typically would do.  I cried because that was the saddest sound I think I’ve heard in ages.  “Hungry, hungry, hungry, hungry….”  I am crying writing this. I cried huge flowing tears.

The next day, I teared up again thinking about Aiden’s Diaversary, and I teared up several times as “Hungry, hungry, hungry, hungry…” echoed in my ears.  It was truly traumatic to me.  I’m glad his brain had the wherewithal to ask for what it needed, but I don’t think I ever want to hear those words uttered in that voice ever again.

“Hungry” was still echoing in my head today, almost 48 hours later.  Jamming my “therapy” CD, I heard a song I’ve heard a 100 times.  Except today, I heard it a little differently.  It was a great sentiment to how I feel about Diabetes and the way He treats me.  When I crack a smile, he rubs my face in it.  He’s a thorn in my side that just won’t quit.  Diabetes can test my faith, but He can’t take my pride, my boys.  For these boys, I’ll fight to the death.


Dedicated to you, Mr. Diabetes!

Thorn in My Side
Thorn in my side
You're always there
Just to remind me
That I still care

Thorn in my side
You won't let me go
Right there beside me
To let me know

I've been pushed around
Been knocked down
Lost a round or three
Life took a couple of things I loved
When I was too blind to see

But I'll survive
I gave up on luck but I'm still getting by
Yeah I'm going to be alright
You can test my faith
But you can't take my pride
Thorn in my side, thorn in my side

Thorn in my side
You just won't quit
Once in a while when I crack a smile
You rub my face in it

Thorn in my side
You won't let me run
God bless the fights
That I've lost and won

But I'll survive
I gave up on luck but I'm still getting by
Yeah I'm going to be alright
You can test my faith
But you can't take my pride
Thorn in my side, thorn in my side, thorn in my side
Thorn in my side, thorn in my side, thorn in my side

I've been pushed around
Been knocked down
Lost a round or three
Life took a couple of things I loved
When I was too blind to see

But I'll survive
I gave up on luck but I'm still getting by
Yeah I'm going to be alright
You can test my strength
But you can't take my pride

Thorn in my side, thorn in my side, thorn in my side
Thorn in my side, thorn in my side, thorn in my side

--The brilliance of BON JOVI (From The Circle)
Rhonda

Thursday, February 20, 2014

Two Years Sweet and Strong

Diaversary #2                                                                           February 20, 2014

After a pod failure on Tuesday….or failure to report his pod came off (thus delivering zero insulin into his body, lots into his backpack!), we had a crazy high…435.  I gave Mr. Aiden a shot to bring his sugar back under control, and I put a new pod on.  Two hours later, he was about 225.  Coming down, but I also anticipated a late post-Doritos-and-taco-salad high (yes, that’s a real phenomenon), so I gave him a small amount of additional insulin and went to bed.

I lay in bed pondering the meaning of life and going through the Diabetes equation in my head. 
(Current Glucose Level + Carbs on Board+ Insulin on Board divided by fat and protein content of latest meal multiplied by the day’s activity level and age and site of pod subtracted from the color of his underwear squared.  Divide that result by the phase of the moon…and presto)!!!
This happens every night….at the end, the result is what time I need to wake up to check them again.  The result varies.  Tuesday night, the result was 2 a.m on Wednesday morning.  Alarm set.

At 0200, I awoke to discover that I was well-advised to wake up at 2 a.m.  Asa was near perfect at 112, Aiden was 51.  So, he got to sleep-drink a juice box.  I lay down for 20 minutes and rechecked.  39.  WRONG direction.  So, he was privileged enough to sleep-drink about 20g worth of Carbohydrates in the form of Chocolate Milk.  Twenty minutes later, at almost 3 a.m., he scored a perfect 100.  Now, and only now, am I allowed to go back to sleep.

Except.  I can’t.  I’m awake enough now that sleep evades me.  I think out my upcoming trip; all the things I need to do before the trip to make sure my guys are ok without me; what I need to do today; stresses in my life; what’s right in my life (including the sexy warm man next to me)…and Good God…what may have happened has I not woken up at 2 a.m.  He skated in at 0600 on Wednesday morning with a respectable 112!  Perfect ending to year number 2.

Two years ago today, Diabetes officially invaded our lives. I can recall vividly the fear, helplessness, pain of that day.  It still makes me cry. Although it’s 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 two years, and I know I’m light years away from knowing nearly enough.

But here’s what I do know:

My baby is alive.  He is growing and thriving.  He is smart, passionate, and funny...the spitting image of his father!  His behavioral problems, stomach pain, visual disturbances and dehydration have been replaced by finger-sticks, insulin, pumps, appointments, and shots.   I know as long as we do our best, he can live an imperfectly ‘normal’ life.  I know one false move on my part could cost him his life.  That, my friends, is humbling and explains the newly sprouted (but recently covered) gray hairs.
Today, we celebrate his life.  We celebrate how brave and strong my Aiden is.  We celebrate that although the diagnosis sucks, it wasn’t worse.  I get to keep a modified version of my perfect baby!



Now, we learn and grow with him.  We Walk to Cure Diabetes every year.  I’ve written a book describing the emotional journey of the first year of diagnosis….times two
Mommy Can't Fix It

One can watch and support our journey on my new Facebook page at www.facebook.com/FuseA2Team. (Two Too Sweet).  Besides the day to day medical care and parenting combined, it’s what I can do.

I’ve battled the mourning and negative thoughts all day.  I’ve staved off tears at least three times.  Some good Bon Jovi infusions have helped with that.  But, now, he’s home..and we celebrate!

Pancreas out,
Rhonda