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,

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?


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?!”

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! ;)