Living with the Ghost

Livin’ with the Ghost

Any person who’s known me for longer than 10 minutes knows I love Bon Jovi.  The man, the music, the band…I love them all.  Mid-tour during the “What About Now” tour, one of JBJ’s best friends and 30-year bandmates, Richie Sambora, abruptly left the band with little public explanation.  This was the start of a tumultuous three years for JBJ.  His living hell. Richie left, leaving questions unanswered and the public and media speculating about a very private matter.  JBJ tried to fulfill a lifelong dream of owning an NFL team in his quest to buy the Buffalo Bills.  The Buffalo people were CRUEL to say the least, and the bid failed.  Further, he had issues with a record label to whom he had been loyal for 30 years.  Those things paired with more things I am not privy to know, JBJ had a rough time.  Too much!

But out of great pain comes great art. On November 4, Bon Jovi released their latest studio album “This House is Not For Sale” (THINFS).  I like all Bon Jovi albums, obviously, but I do actually like some more than others and some have to grow on me.  THINFS….I liked immediately.  It’s simply fantastic, back to their roots, including recording in their original studio.  It’s dark, it’s light, it rocks.  It’s a reflection of that three years of JBJ’s life.

I was so fortunate to attend a Runaway Tours trip to Toronto, Canada over my birthday.  So, dream come true, I was able to attend a live “Listening Party” on my actual birthday after a fun Q&A session and fan club party the prior night.   I really did like all the songs.  I liked the darkness, the energy, the healing.  I liked hearing Jon’s explanation as to how each song came to life. 

I have mentioned more than once in this blog, in person, to anyone who will hear me that Bon Jovi is my dope.  It’s the drug I need.  Bon Jovi has helped me through some of the darkest points in life and has been responsible for some fantastic life highlights!

JBJ, Tico and me in Toronto, 10/16/16

I instantly liked “Living with the Ghost”, and the more I hear it, the more I like it.  It may be my favorite cut of the album, and since they are all pretty great, that’s saying a lot!  But, here’s why.  That song is me. 

Presumably, the song is about his relationship with Richie.  And, his subsequent healing. Without going into too many impertinent details, I, too, had a friend devastate me in 2010 and had to sever a 16-year relationship.  I think it literally broke my heart and felt very much like a divorce.  Every time I hear “Living with the Ghost”, I’m taken back, therapeutically, to this time in my life. 

Overall, the song speaks to me as I imagine JBJ felt way worse than I did.  His lyrics capture my emotions so well.

Marry me to the blue sky
Bury me in that long last drop of hard rain
Meet me where they stop time
That's you to me on the shovel that's digging this grave
Till I can waltz on a moonbeam
Till I can find a way to return all tears into wine
I'll hitch my ride to a day dream
Can't unkiss the lips that love is leaving behind

I ain't living with the ghost
No future living in the past
I've seen that hate has done to hope
Tomorrow wasn't built to last
I ain't living with the ghost
How can I scream, I'm scared to breathe
I wrote each word, you gave the toast
But we were fire and gasoline
I ain't living with the ghost

I set my sails over wheat fields
Rode waves of amber let a new sun shine on my face
I dropped the sword, put down my shield
I left your scars for the stars guiding my way
I traded hurting for healing
I must admit that I was reeling now I'm feeling just fine
Traded nightmares for dreaming
Go tell your shadows that I got out alive

(Chorus)

Last night I had this dream
I saw a man wash his feet in the church holy water
He worked up to his knees
From his arms to his neck said I'm over in my head
He was crying trying to get some relief
Lord, I'm just trying to get some relief
I had this dream
That man was me

(Chorus)

Living with the Ghost

No matter if I am right or wrong about this song being about Richie, about his healing from his hard times, that’s what it means for me.

I have had some dark times in my life, and the most devastating was when my boys were diagnosed with a lifelong chronic disease.  A disease that can shorten their lives, threaten their lives, and requires constant time, money, energy and diligence to maintain.  Ironically, this devastating diagnosis was the trigger for healing for me regarding that failed relationship.  When I had to focus my energy on the lives of my baby boys, it was time to let go of that hurt and accelerate healing because I certainly did not have enough time and energy for both. 

I was in over my head, crying trying to get some relief.  I couldn’t even scream because I was scared to breathe. Diabetes caused me to Drop my sword, put down my shield and leave my scars for the stars guiding my way.  Having my boys ill meant I traded hurting for healing.  You see, I had to.  

Granted, their T1D diagnosis brought on a new level of pain and required healing, but my focus completely shifted.  T1D framed up my perspective and told me it was time to let go and not only focus on myself but my boys.  I still think about her sometimes, but Diabetes framed it all up and made me care so little about that anymore.  For all the garbage Diabetes dishes out, that was one little gift. 

The message to that former friend.  “I must admit I was reeling, now I’m feeling just fine.  I traded nightmares for dreaming, so go tell your shadows that I got out alive!”

There's no future living in the past. I heard this song, that song was me.  I’m not living with the ghost.

Rhonda

OOPS!!

Ooopppssss….  Guess I can check this one off the bucket list!

Over the weekend, I went to Toronto to see Bon Jovi (why else?!).  I was meeting other Bon Jovi friends there, including my main Bon Jovi buddy and roomie, Gennie.  They arrived a couple of hours before me because I had to wait to leave until after the JDRF One Walk.  Bags were packed.  I bolted straight from the 5K Walk to the airport and hopped on a plane to Toronto.

It was warm outside in TX but not too bad.  More than anything, the wind was doing quite a number on my hair!  I was sitting in the middle seat of the plane, which I usually dread, because one doesn’t know who will flank them.  I was most scared of Miss Bad Perfume or Mr. Huge Guy (or Mr/Ms Talk Nonstop or Mr/Ms Stinky.  Don’t hate.  We’ve all been there!) because with one I can’t breathe and the other I have to sit with my shoulders scrunched the entire flight, thus I can’t breathe.

Fortunately, neither sat by me.  At some point in the flight I realized I was the one not smelling so hot!!!!  So, I was THAT person!!  I was Mrs Stinky! Granted, I kept my arms down and it wasn’t overwhelming, but I guess I got hotter and sweatier than I thought on that walk.   All I could think about was getting off that plane and getting a shower.  I could NOT meet my friends tattered and smelly!

When I landed in Toronto, long story short, I texted Gennie.  She said they were meeting for dinner after a while, told me our room number (10295), and said the front desk had my name to give me a key.  They had just gotten to dinner when I arrived, so I stopped by the front desk to get a key, drop my stuff off, and God forbid, SHOWER before I went down to meet them!

I hustled my bag and my key up to 10295.  Key didn’t work. Tried three times.  At that point, I bothered to look inside the key envelope and verify the room number.  Oops.  10265.  Hmmph.  Must’ve misremembered Gennie’s text.

I scurried down the hall to 10265 and voila, it opened!  I rushed in the room, plopped my suitcase on the bed, and hurried to shower and join my friends.  Now, follow my thought process.

First thing I see are clothes in the closet.  Those could be Gennie’s.  I don’t memorize her wardrobe. Who cares?  Move on!

I run to charge my phone while I’m showering.  I see her white charger, and think “I’ll use hers”.  Iphone charger?  Since when did Gennie get an Iphone.  I thought she had a Samsung like me?  Oh well, dug my charger out and charged my phone. 

Plugged in my flat iron.  Noticed a small suitcase and some flip flops on the floor.  Those don’t look familiar; maybe someone bought them for her. 

I strip, rocket speed.  Butt naked. Grab out what I plan to wear.  I hustle to the bathroom.  Pads on the counter.  Clinique makeup bag.  Gennie must be on her period.  Wait?!  When did she start using Clinique? 

I grabbed a washrag and the hotel shower gel.  Hurriedly showered.  Jump out.  Put on more deodorant and lotion.  Brush my teeth.  There is NO Mary Kay in there! Where is her Mary Kay? (I have traveled with her enough to know what her toiletry bag looks like!)  

Hung my washrag nicely in the shower and my towel on the back of the door, next to Gennie’s swim top.  They went swimming already?

Got dressed.  Ran a brush through the windblown mess that was my hair.  Quickly ran the flat iron over it.  Kept looking around.  Something isn’t adding up.  At this point, in for a dime, in for a dollar.

I threw my stuff back in my suitcase and set everything nicely off to the side.  I grabbed my phone and plugged in my portable charger to refuel.  I bolted out of the room and took off to meet my friends downstairs.

Now, in the room, stuff wasn’t adding up, but I was too hurried and excited to really stop and think.  As I boarded the elevator and walked to Benihana, I began to ponder.  Surely that was Gennie’s room!  I looked at my texts from her, wondering if perhaps if one of us had gone dyslexic.  Did she type it wrong?  Did I read it wrong?  Verified the text. 10295.  Well, I just showered in 10265.

I arrived to meet my girls.  Squeezed in for dinner.  First thing I asked, “Gennie, you did tell me 10295, right?!  THAT’s our room?”  She confirms.  Our room is 10295.  “Well, guess what?!  I just showered in 10265.  That’s the key they gave me.  I just showered in a stranger’s room!”  Oh my, we laughed so hard, imagining all the possible scenarios!!  Stranger comes in when I am butt naked.  In the shower.  Leaving her room. 

I told them how things weren’t adding up and suddenly I felt the compelling need to go rescue my belongings!  After dinner, we headed straight up and gathered all my belongings out of 10265 and put them in their proper place in 10295.  The only thing I left behind were the dirty towel and washcloth and empty shower gel bottle.  If I had been thinking, I’d have grabbed those, too, but I just grabbed my luggage, carry on, toiletries and charger and ran to 10295!

Obviously, I’m honest, and I didn’t touch or bother any of the stranger’s property.  But I can only imagine what she thought when she came in and saw a dirty washcloth, used towel, and empty shower gel.  It’s like the case of Goldilocks.  I would have paid to be a fly on the wall.  Hilarious to me, probably not so funny to her.

Regardless, desperate times call for desperate measures.  I desperately needed a shower, and clearly I wasn’t above showering, inadvertently, in a stranger’s hotel room.  We spent the rest of the evening having a grand time visiting and getting ready for two nights of Bon Jovi!  It was a very funny start to a great birthday weekend!

Shower in a stranger’s hotel room.  Check that one off the bucket list!

Rhonda

Ripple Effect

Ripple Effect

September 3, 2016

I really believe that people come into our lives for specific purposes.  Some come for a moment, some a season, some for a lifetime.  Their purpose may be to guide you through, lead you to another, or make you stronger. 

When I entered college, straight out of high school, I was anything but the “traditional” fresh-out-of-high-school-now-entering-college student.  Yes, I was 18, but I was a mother, in a relationship, who worked. I was not your typical student.  Add getting married my freshman year….I have always been an old soul.  I did not relate well to those who really were traditional students, worrying about sororities and parties, living on campus.  I did not envy them or begrudge them; it just wasn’t where I was in life.

Once nursing school actually started, I found the majority of my classmates at TCU were “traditional” college students.  Young, straight out of high school, many with Daddy footing the bill.  I liked them all well, but I didn’t necessarily relate to them well.  We were in different realms of life. 

I met Genia as soon as nursing school began.  She was married, 5 or so years older, non-traditional.  She and I clicked pretty quickly.  We tried to align our schedules so we could be in the same clinical groups.  I picked her up nearly every morning and we rode to class together.  We studied.  We talked about life.  We complained about our bad marriages.  We laughed.  I never minded being her ride as the morning therapy sessions were a lifesaver.

Forever Frogs together!

Genia and I supported each other through nursing school.  Edited papers; studied for tests; helped with care plans. On my 21st birthday, she plopped a Tall-boy Coors Light on my desk at school and kept walking...like it was normal to have in class! :)  Nursing school is not for the faint-of-heart, and it was so great to have someone by my side. Maybe I was placed in her life, but really, I think she was placed in mine, to help me make it through.

TCU Graduation

Genia became pregnant our final semester of nursing school, and I became pregnant the summer after.  We had blonde-haired sons three months apart. We both got jobs, me in OB, her in Pediatrics, and we kept in touch for awhile.  Big surprise, we both got divorces, too.

I don’t remember the exact dates, but when Genia’s son was small, she developed breast cancer, at a young age, for the first time.  She defeated that beast and hoped to be a Mommy again with her new husband, but fate was cruel to her.  Instead, a few years later, she had to abandon those Mommy dreams because her cancer was hormone-based and resurfaced.  She had to have all the girl stuff removed and go through cancer treatments for the second time.  She won again!

Genia and I saw each other around town at kids’ ball games and such, but we really reconnected over social media 8 or so years ago.  Even though I didn’t see or speak to her regularly, her impact on my life was never forgotten or unappreciated.  After we reconnected, she re-introduced me to her sister Gennie.  Gennie and I became fast friends, bonding over our mutual love of Bon Jovi.  The three of us even went to a concert together.  Because of Genia, because of Gennie, so many of my dreams have come true.  Because of that connection from the early 1990s, I have met so many super-cool like-minded friends from around the world.  And, if I trace back the roots, it’s because Genia was in my life.

Have met so many cool folks because once upon a time, Genia was there!

Gennie, me and JBJ

Recently, after being initially dismissed by doctors, Genia was found to have Stage IV breast cancer, again.  Third time. In her lungs.  She’s 47.  When is enough enough?  So, she dropped her only son off at college and now is back in chemotherapy, FIGHTING, hoping to defeat cancer again and be present for her son’s amazing life!

Genia was that pebble, dropped into the middle of the pond of my life, and the ripples of that impact flowed outwards.  Genia, because of you, directly or indirectly, cool stuff has happened in my life.  You helped me survive nursing school.  You helped me survive that marriage.  We watched our sons grow up at the same time. You led me to Gennie, whose friendship has led me to some really cool (and very therapeutic times).  Genia came into my life for a reason, for a season.  God willing, that season will be long.  

You can help support Genia by purchasing a Booster T-shirt today!  TeamTimex

Rhonda

Love Your Spouse Challenge

Love-Your-Spouse Challenge

The latest “chain” letter on Facebook was the Love-Your-Spouse Challenge (#LoveYourSpouse) where beaming couples (usually the wife) posted the best-of-the-best photos in celebration of their love and marriage.  Admittedly, I enjoyed looking at the happy pretty faces in their perfect marriage photos.  Nobody tagged or challenged me.  I’m sure it was an innocent oversight (*heh hum*…clearing throat).  Doesn’t really matter.  Anyone who knows me knows I’m all about Jerry Fuselier (well, and JBJ, too, but Jerry is my real man).  I throw it out there enough.  I would have never remembered or had time to post a new picture every day for seven days anyways! I have an entire Facebook album dedicated to my man.  *Gag*

After it started dying down, I read a blog that was SO relatable (http://www.scarymommy.com/marriage-love-your-spouse/?utm_source=FBOnsite).  Building on what she says, marriage is not all blissful photos and happy moments.  The reality of marriage is that it’s a lot of work, fueled by dedication and commitment.  It’s not always sunshine and lollipops.  There are ups and downs, way too many, and hopefully you’re not both down at the same time.  So, I am going to list the top 7 real (or reality-sucks) pieces of our marriage.

7.  Fighting.  Thankfully, we don’t fight much, but when we do, it can be quite grand.  No matter who you live with, you’re going to fight at some point.  Your spouse is no different.  Whether it’s about the kids, chores, money, or who holds the remote, fighting is just part of the whole game.  Fight fair.  If you’ve ever fought with your spouse, congratulations.  You’re real.  If you haven’t, take yourself and your lies and move on.  In the end, we kiss and make-up.

10-years of marriage, 2010

6. Habits. I didn’t marry a perfect person.  Neither did he….although, I think he got pretty close ;)  There are days he flat unnerves me. He loves to play video games, ad naueseum.  I don’t know how he isn’t blind after looking at computer screens for so many hours per day! He sits on the throne until his legs are numb; I’ll never understand. I can’t sit still for too long. He can procrastinate with the best of them. I want everything just-so, right away.  He is Mr. Alternate Route and Over-Researcher (but it works for him).  I am sure I’m always a barrel of monkeys to live with, too. He’ll testify to that fact!  Truth is, I’m used to all the crap I don’t like about him. And, at the end of the day, I am cuddled up next to him in bed, grateful I have somebody to be annoyed with. 

Impromptu kiss, caught by my SIL in CA, 2007

5.  Tag Team.  With differing shifts, sometimes I only see him for minutes a day, if at all.  I give a full nurse-style report, usually accompanied by a list of a few things that need to be done, then hit the door.  Every day is not a picnic, frolicking in wildflowers. Most days revolve around work, taking care of the kids, taking care of the 8 animals in the house, cooking, cleaning, laundry, putting out fires.  Eventually, we re-sync our schedules where we are able to see each other, talk about whatever, and reconnect.  I think the absence makes us each a little fonder, so there’s an upside.

There's a lot of people to care for, so lots of teamwork

4. Baggage.  We each came into the marriage carrying along exes and two children.  Fortunately, only one ex caused undo drama and conflict.  Most of the time, we were on the same page regarding the said exes, but occasionally conflict (see #7) occurred because of the unnecessary pain and frustration of it all.   We are so fortunate now that the majority of those years are over.  Both of our sons (youngest from those first marriages) are 18 and graduated high school.  We only have to see exes occasionally and we are no longer legally bound to them in any way.  Our load is so much lighter. So, troublemakers can go suck on eggs, and we can move on with this new phase of our lives and relationship.

Our new family, 1999

2003

3. Netflix-and-Chill.  No, really.  When you’re this old, this tired, and been married this long, it’s a literal term.  No euphemisms. We have so much going on (see #5) that when we settle down for the evening, we really do watch Netflix (or DVR’d shows) and chill.  It’s part of our treasured “Adult Time”. On select good nights, our Netflix-and-Chill ends with the euphemized Netflix-and-Chill.

Beach Chill time

2.  Bodies.  Oh, we all see the perfect body photos online, and most probably wish they or their spouses looked similar to that “perfect specimen” photos.  Reality is, nobody looks like that, especially me.  Some things are too big; some are too small. Cellulite, stretch marks, and now a C-section scar to boot.  I’m taking stock in L’oreal to cover the gray! I’m quite the specimen.  Fortunately for me, Jerry is either going blind or has the best set of rose-colored glasses ever!  (Wait, see #6. Maybe he has gone blind!) He thinks I’m beautiful. 

Him…he knows his flaws.  I know his flaws.  I don’t have to air them all out.  But I will say, he’s one of the most gaseous creatures I have ever met.  He can make dogs evacuate a room, and they lick their own bums! Sometimes he snores a little and I want to plug his nose. And his dry feet…ugh!  But, I really don’t care. (Granted, he could take his gas to the bathroom and lotion his feet, and I wouldn’t complain).  When I look at him, I see that handsome devil I met and married.  I really don’t see what he’s lost and what he’s gained.  I just see my handsome Jerry.  He’s my Blonde Bear. My Babuh.

My young beau, 1999

My handsome groom, 2000

1.  Diabetes.  You know it had to register, right?  Our perfectly healthy and beautiful Jerry-clone twins (yes, they are little blonde bears who can clear a room, too!) got sick in 2012.  Diabetes has taken a toll on our lives. So much of our time, energy, worry, and MONEY go towards the best Diabetes care for these little boys. It’s all about keeping these guys alive and healthy, because they have SO much to offer in this world.  When Diabetes kicked me down emotionally, Jerry was always right there for me.  Holding me up. Diabetes has knocked us both down at times, but it didn’t knock us out.  Fortunately, we’ve never been down at the same time.  The other has always been up to pick up the slack and extend a hand.

They have the same face ;)

Our little "sweet" winners, June 2016

So, the reality of marriage is that sometimes ... wait…  oftentimes it’s hard.  There are no fairy tales here. Our life is mapped out on plain white copy paper, not glittery card stock. Yet, I am so fortunate, that even after 16 years of marriage, I still really do enjoy and adore this guy.  He is so funny, and I think he literally makes me laugh at something every day.  He is wicked smart… (I am sure he is smarter than me, but I’ll never admit that to his face).  He’s there to talk me off the ledge when life is getting me down. He’s there to privately call me out when I am not being cool.  Jerry is SO super-fabulous about letting me be myself and encouraging me when I want to try something new.  New job; back to school; write a book…he says “Go for it!”  When I need to take off just for respite and to be around females, he holds down the fort.  When I Runaway to see JBJ, he doesn’t care.  He knows I am coming home to him! Happy wife, happy life.  My favorite part of the day is my “adult time” every night when it’s just me and him.  We relax, talk, watch TV, and hold hands. 

Happy 40th birthday kiss

Despite fighting, bad habits, baggage, weird body stuff, and Diabetes, most days are good. Even on the days I want to slap the tar out of him, I cannot imagine my life without him.  All the work I put into myself, my family, my marriage is born out of devotion to him, commitment to our marriage, and sheer determination not to fail again. This marriage, and all the drama and work that it entails, is a choice I make every day.  We’re working towards a common goal:   Happy, healthy, independent children so we can be happy empty-nesters. 

Can and can't wait to grow them all up and see what they become!

In so many ways, he's the male form of me.  We're Thick As Thieves ( Thick as Thieves ). I love you, Jerry Fuselier (Yes, you’re kind of a big deal, so you don’t have to say it!).  

Our latest photo, 17 years in!

#LoveYourSpouse Challenge.

Rhonda

The Bright Side

The Bright Side

As I sat on a plane coming home from Washington, D.C., I thought about a lot of things.  Not only did I wonder if my house was clean and all the boys’ blood sugars were documented (so my OCD mind could relax and average them), but I also thought about this blog and how my life has changed since Diabetes, uninvited, barged in.

It is hard to pick what to mention first, so in no particular order.  And, since I’m a list person…

1.        Knowledge is power, and I have learned more than I ever cared to know about this disease.  I have learned more than I ever thought I would about Auto-Immunity.  Nursing school only skimmed the surface, that’s for sure (so if you encounter a nurse who doesn’t know much about T1D, don’t hate!)! Given that, there is SO much more to learn and the opportunity for understanding on a deeper level is probably beyond my IQ capabilities.

2.       My “Something to Believe In”.   Juvenile Diabetes Research Foundation. If you have talked to me for longer than five minutes, you know where are two things I can talk about until I am blue in the face:  Bon Jovi and JDRF!  .

WAIT!  WHAT WAS I TALKING ABOUT?!!!  

   When my boys were diagnosed, I was in the throws of running a lot of 5Ks. (That has changed for sure, as has my weight, but let’s not discuss that!)   Most 5Ks benefit some cause or another, so I combed JDRF’s site for more information (for knowledge) and seeking a 5K.  Instead I found the “Walk to Cure Diabetes”.   We gave it a shot in 2012 as Aiden’s Army (team selected and shirts printed before Asa was diagnosed). Our team was small and we only raised a little bit of money. Fundraising gave me a purpose.  It was my way to help those who could best help my boys.  Needless to say, one thing led to another, and my involvement with the now-monikered JDRF One Walk has grown.  We will participate for the fifth time this year as The AA Team.  Nope, not batteries, not American Airlines, and not that “anonymous” organization, but rather, Asa/Aiden team! (Bon Jovi, Something to Believe In)--sorry, couldn't help myself!  

7-YEAR-OLD Aiden, 2012, Aiden's Army

3.       Expounding on point #2, my involvement with the JDRF One Walk has landed me more volunteer opportunities with this great organization.  JDRF is the one organization focused solely on finding better treatments and a cure for Type One Diabetes.  80% of their budget is spent exclusively on their mission:  research, advocacy, education. 

a.       I currently serve as a JDRF Mentor.  This means, upon diagnosis, new families request a mentor. JDRF pairs up similar mentor-mentee families.  So, when given a new name, I reach out to that family and offer them whatever support works for them. Every time I see one of "my" families being active and involved, I feel like a winner!

b.      Last year, I was a JDRF One Walk Family Team Coach.  This means, they thought I was good enough to reach out to new teams and sophomore teams to help them out.   I made calls and sent emails to help those teams become successful in fundraising and more vested in JDRF.  The more we all work together, the more $ to help all of our kiddos!

c.       This year, I am the JDRF One Walk Family Team Chair.  This means, I lead all of the Family Team Coaches.  So, much of the same as point (b), but on a larger scale.

2015 The AA Team.  MY how we have grown!

4.       Further, I was SO blessed and fortunate (see last blog) to be able to represent my Greater-Fort Worth/Arlington JDRF Chapter, my boys, myself, my state, and all of our T1D folks in a trip to Washington, D.C. last month.  Never did I anticipate the invitation.  We were able to attend the JDRF One Conference and advocate on Capitol Hill for funding for the Special Diabetes Program and CGM Coverage for Medicare patients.  (You can, too, by contacting your Congresspersons and sending a simple email.  More info at www.jdrf.org/advocacy). If you had told me four years ago this is what I would be doing this year, I would have requested you submit to a drug screen.  It was such a fantastic opportunity, and I hope I made an impact with someone somewhere.

5.       The book, yo!  I almost forgot.  Self-professed Grammar and Spelling Nazi and lover of our language, I always wanted to write a book.  Once upon a time, I drafted a fiction book, got about halfway through and lost the time, ideas and interest to complete.  Maybe one day I will wander back to it.  As I have told the story 100 times, I was inspired to write “Mommy Can’t Fix It” after a friend of mine’s son was diagnosed with T1D about a year after Aiden was diagnosed.  She reached out to me a lot those first few months, and I was delighted to help her.  Every time she asked a question or vented how she felt, all I could do was answer her, reassure her, and remind her she was not crazy.  This led me to think.  I read several very good books about taking care of T1D, but not one mentioned the things I felt.  So, I wrote.  2012 was easily the darkest year of my life.  Beginning to write was cathartic and helped me to re-find myself and my focus.  The purpose of the book was to obviously share our story, but more so, to help some other Mommy or Daddy out there not feel alone, not feel crazy.  When I get a random email, Amazon review, new FB page Two Too Sweet “like” or blog comment, then I know my mission was accomplished.  If you do not have a copy yet, it is available on Amazon (Mommy Can't Fix It).  The proceeds I receive from the book I donate to our JDRF One Walk Team annually.  One day, I will get around to writing the follow-up book (which several have said I should do).  Title is in my head…..that’s a start!

6.       Finally, I have met some of the coolest people ever.  Ironically, without Diabetes, our paths may have never crossed.  If I tried to list them all here, I would surely forget someone.  So, in the interest of not hurting feelings or offending someone….you know who you are!  Through my Facebook parent group, Type One Family Network (what a Godsend and life-saver that group has been!); through Camp Aurora and Texas Lions Camp; through my local JDRF Chapter, JDRF conferences, JDRF One Walk,  JDRF Promise Ball, JDRF meetings, and Washington, D.C.; through the wonderful Endocrinology team at Cook Children’s Medical Center; through those who have reached out to me after reading “Mommy Can’t Fix It”; through those who have put new families in contact with me over social media because that “friend or friend of a friend” needed some help…the list goes on.  Without T1D’s intrusion, then I may never have been able to call you my friend!

There are way too many negatives in dealing with Type One Diabetes and in my quest to keep my boys alive and healthy.  Off the top of my head:  Lows; highs; the damned expense just to keep my boys healthy; the lost sleep; the time Diabetes steals from the other children; the worry; passing up career opportunities because my focus is to be my boys’ pancreas…..and on, and on, and on. 

But, *don’t tell Diabetes I said so or I will pay for my positivity later*, it is not all bad.  Even though I now live in a world where Yoo-Hoo or Skittles can save a life, I am a blessed and fortunate person.

Help us support JDRF by Walking with us on October 15 or making a tax-deductible donation today.  There is no gift too big or small as every dollar raised is a dollar closer to a cure! 

www2.jdrf.org/goto/FuseAATeam

It’s all for Asa & Aiden,

Rhonda

JDRF One Conference

JDRF One Conference

                At my primary job, we have been working hard to prep for our new long-awaited hospital tower to open in August. Given that, we have a vacation freeze for the majority of July and August as we will be working feverish overtime to put all the finishing touches on the tower and get everyone trained to the new place. Since “Educator” is one of my roles, I have the large primary responsibility to assure around 70 nurses are trained by Opening Day! So, since there is a freeze and we will be so busy, I planned two short vacation trips in June. Needless to say, the planned busy July and August inadvertently created a full and busy June.

            First, Kyle graduated high school on June 6. Two days later, we jet-setted for California to take the three youngest boys to Disneyland and to visit family in the LA area. Fortunately, Diabetes behaved fairly well, but that’s another blog.  We arrived home late on Sunday night, and I spent the next two days at an annual nursing conference…you know…back to that “Educator” role. I thought I would have a few days home after the conference to work, catch up on groceries & laundry, and refilling the hemorrhaging bank account before we leave again.  (This time, we’re boarding a ship to celebrate with the “big boys” on their planned and promised Graduation cruise)  *gasping for air*

            Plans set.  Busy June in order. Very few breaks. Then, a few weeks ago, I received an invitation from my local JDRF chapter to attend the JDRF One Conference in Washington, D.C. I have always wanted to go to D.C. To sweeten the deal, as part of the conference, we were to each take part in Capitol Hill visits with our Congressional representatives and Senators to lobby for support for the Special Diabetes Program and the Medicare CGM Coverage Act. 

            Anyone who knows me knows I can talk a blue streak about two things….Bon Jovi and Diabetes. So, Game On!  Jerry agreed to hold down the fort, and I took off to D.C. on Wednesday!  I was fortunate enough to fulfill a dream to see some of the historical US Monuments…White House, Washington Monument, WWII Memorial, Vietnam Veterans Memorial, Reflecting Pool, the Lincoln Memorial.  I was sweaty with that D.C. summer heat and humidity, but I was beyond excited to be there. I made it back in time to the hotel to clean up for meetings and dinners. Great research updates about the Artificial Pancreas, Smart Insulin, Prevention, Complications and Beta Cell Encapsulation. 

            On Thursday, we all loaded into taxis and rode to Capitol Hill. Representatives for JDRF, many like me who are volunteers, stormed the Hill to lobby for support for Diabetes funding. For my State and area, we visited the offices of John Cornyn, Kay Granger, Roger Williams, and Ted Cruz. At each Senator and Representative’s office, we spoke to their legal health aides, and let me assure you, I have never felt so OLD as we spoke to these bright and receptive aides who looked younger than my oldest child!

Meeting with Congressman Roger Williams

Ready to Storm Capitol Hill 

            Thursday afternoon, Thursday evening, and Friday were spent in more educational sessions and networking with other JDRF staff and volunteers for my state and other states. Since I had a couple more hours to kill, I turned the opposite direction from the hotel and explored a bit more of our Nation’s Capital. Lo and behold, I found the front of the White House!  I thought I was in the front on Wednesday, but I stand corrected.  It was surreal to stand in front of such a historical place that is recognizable around the entire world.

In FRONT of the White House

            Besides education, which I am all about, I think my favorite part of it all was meeting others like me who are passionate about their organization. We all have our own impactful stories…tear-jerkers…and I love to hear each one. I feel less alone when I hear others; I feel liberated when I am able to share our story.

            Also, I never dreamed in a million years I would lobby Congress for anything, so it was an exciting opportunity to go, learn the process, and speak up for my boys, my father-in-law, all other T1D patients, and represent myself, my family, Texas and JDRF.  Being a volunteer for JDRF has truly been the Band-Aid for my broken heart after my boys were diagnosed. Helping those who can help find better treatments and a cure for T1D because this Mommy can’t fix it alone.

            Volunteering for JDRF gives me meaning. Hosting our JDRF One Walk Team has been therapeutic as my boys can feel and SEE the camaraderie for them and all of those afflicted with T1D.  I will Captain the team, until the boys are ready to take over, so that we can raise vital $ to fund education and research, especially for my favorite project, Beta Cell Encapsulation.

ViaCyte Beta Cell Encapsulation device

I serve as a JDRF Mentor, helping new families to not feel so broken and alone upon diagnosis and steer them to resources and involvement that helped me feel hopeful and empowered when I was new to this battle.  Last year, I served as a Family Team Coach to help new and sophomore One Walk families become more successful and engaged.  I knew nothing year one and had to figure so much out; this type of help is vital to teams’ success.  Now, this year, I am Family Team Chair.  For some odd reason, my chapter thinks I am qualified to lead all the other Family Team Coaches as we all aid new and sophomore families through the One Walk process.  And, as I mentioned, now I have had the chance to volunteer to be an advocate on Capitol Hill and attend this conference!

            It is truly an honor to me, and I feel humbled and privileged to be asked to represent for my boys, all T1D patients, my local JDRF chapter, my state.  I guess all I can say is that this organization is the primary source of hope I have that one day my boys will be cured and/or they will have a fantastic treatment that minimizes the burden of their disease and reduces or eliminates all potential T1D-related complications.  Alone, all I can do is to be the Mommy Pancreas and make sure Diabetes doesn’t beat my Asa and Aiden.  Together, we can beat Diabetes!

            I do it all for them!

            Support us today as we help JDRF turn Type One into Type None.

            www2.jdrf.org/goto/FuseAATeam

Rhonda

Groundhog Day

Groundhog Day

“Caught in a blizzard I didn’t predict, trapped in a time warp.  Doomed to relive the same day over and over again until I get it right…”… or until there is a cure.

It’s 3 am.  I awake for the third time since 10 pm to an alarm.  One boy is 259, one is 59.  One gets carbs, one gets insulin.  Don’t mix them up.  Hair disheveled, face wrangled, I fumble up then back down the stairs.  Fall back into bed where sleep quickly retakes hold.

3:30 am.  Eyes pop open to glance at the monitor.  Need to assure the low sugar is rising.

4 am. Wake up to assure the low sugar is normal and steady and the high sugar is reducing. Attempting to think logically through the veil of chronic fatigue and the fog of waking up again.  All appears well.

5:45 am. Wake up for the day.  I have to shake off the cobwebs and pull myself together for the long day ahead before I wake up anyone else. Make sure sugars are acceptable for the next half an hour while I selfishly do something for me….you know, like take a shower and comb my hair.

6:10 am. Wake the twins up for school.  Check alcohol swabs, glucose tabs, strips and lancets in school kit.

6:30 am. Guinea pigs are fed. Teeth are brushed, hair combed, faces washed…maybe. They are 11 and find such hygiene optional at times. The noise factory arrives downstairs to check sugars, plan breakfast, dose insulin for breakfast, eat breakfast. “Don’t forget to update the Dexcom and write it down!”…lest your OCD mother has a fit because she MUST analyze the numbers regularly.

7:00 am. Bus arrives.  “Kits and Dexcoms!”  Assured they have them; most days they do.  Oh wait!  Forgot their water bottle. Run back for the water and an extra hug and kiss while the bus waits because you know, it’s imperative, and everyone else can wait.

7:00 am – 3 pm.  Plan dinner. Run errands. Work with burning bloodshot eyes. Frankly, I guess the red makes the green of my eyes “pop”.  Arrive home within minutes of the boys.

3:30 pm.  “Kits and Dexcoms”  The boys drop their school kits and Dexcoms on the kitchen counter. Mommy obsessively writes down sugars from the school day.  Scroll through Dexcom to see how they looked over the course of the school day.  What are their current sugars?  Intervene if necessary. Check alcohol swabs, strips, lancets in home Diabetes kits.  Move PDM to home kit and set school kit aside for the next day.  Homework, chores, piggy time.  Recreation….well, at least for them.  Me?....

4:00 pm. Brief gym session; cook; clean; bills; mail; dogs

5:00 pm. Call the boys for dinner.  “WASH your HANDS!”  Two purposes:  a)  Wash your hands before dinner, and b) Clean hands for a sugar check.  Check sugar.  Update Dexcoms.  Count dinner carbs and dose insulin.  Let’s eat!

5:10 pm.  Wait!  Seconds already?  I haven’t even finished making my own plate!  Of course.  Have more. Count carbs.  Dose insulin.

5:30 pm.  Clean kitchen.  “Can we take a walk?!”  Sure.  Bag packed with water and juice boxes, because we can’t just “take a walk” anymore.  Nothing is simple, not even a walk.  “Kits and Dexcoms, please!”  Ear falls off from all the chatter and incessant questions.  Stop at duck pond and drink a juice, hoping it will keep the sugars up.

Halfway home, juice wasn’t enough.  Sit on the sidewalk, looking half-crazy, eat candy and wait for the glucose level to rise to a safe level to continue our trek home.  Boy is feeling better.  Walk 20 feet before the next one says, “Wait, I’m low, too!” as Dexcom shows low with arrows dropping.  Same treatment, sit in front of a different stranger’s house.

6:15 pm.  Home. Showers.  Sugars stable. Soap is optional, they think.  Finish cleaning.  Prepare for tomorrow. Put on PJs while they shower.  Dexcoms still show stable sugars.  Finally I can relax, so I pour a big glass of water and hit the chair.

BBBEEEEEEEPPPPPPPPPPPP…..  The Pod shriek of death.  Fantastic.  Get back up.  Change insulin pump. No rest for the weary.

8:00 pm. Adult time for the man and me; reading time for the boys.

9:00 pm. Bed time.  Check sugars.  126, great!  82, great L.  That won’t last.  Give a couple of ounces of chocolate milk, hope that holds him for the night.  Brush teeth.  Kisses and hugs good night.

9:20 pm. Boards creek.  Someone is tip-toeing downstairs. “I feel low”.  Not the one who was 82. It’s Mr. 126.  Now he’s 92 and dropping.  Chocolate milk for him, too.   Try again to hang with the man and watch some TV.

10:20 pm. Dexcom sugars look good.  Going to bed.  Long day. More work tomorrow.

11:30 pm.  First alarm.  82 and chocolate milk didn’t hold.  Now 62. Yoo-hoo box it is.

12:00 am.  Midnight.  Glance at monitor.  One going up, the other steady. Back to sleep.

12:30 am.  Eyes pop open.  Still steady.  Doze back off.

It’s 3 am.  I awake for the third time since 10 pm to an alarm….

Groundhog Day.

Although activities may vary on a daily basis, this is pretty much how it goes.  Some days are better than others.  Mind you, I didn’t mention much about the hubby, the dogs, the other kids, all of whom demand and deserve their own level of time and attention.  This is just a glimpse of the demands of Diabetes.  I feel like I have three Full-time jobs at least. 

Don’t get me wrong.  I’m not feeling sorry for myself.  It is what it is because I have kids with Type One Diabetes.  Despite it all, I love my life and I am living a different version of “the dream”.  Rather, I feel sorry for my kids, and those like them, who have to live with and deal with this disease every day of their lives.  Unfortunately, not much will change for any of us until there is a cure. 

Support us today!
www2.jdrf.org/goto/FuseAATeam

Rhonda 

Four Years

Four-Year Diaversary

What a difference four years makes!

Aiden, age 7, upon admission to the hospital on Feb 20, 2012

Getting his special Build-A-Bear in the hospital

Four years stronger!  Age 11

I have had some bad days in my life, but I truthfully must say, Feb 20, 2012 was easily the worst day of my life. My suspicions were confirmed, and my baby's life and childhood were forever altered.  This stupid craptastic disease devastated his body, and we had to put the pieces back together. It was one thing that I couldn't fix.

Although a lot has changed in four years, nothing has.  We are all stronger, and we are all used to dealing with Diabetes.  However, there are still moments when I get choked up, times when I get mad, and days when I cry. No two days are the same, and just when you think the beast is tamed, he rears his head in another form, with another trick.

I sometimes feel like I'm living in a parallel universe.  There are times I don't remember a time without Diabetes; we just go with the very busy, very tedious flow.  Other times, I remember the innocence and care-free spirit like it was yesterday, and I weep.  Within and after a rough year, we took the bull by the horns.  We have learned as much as possible, and we continue to learn.  I wrote my book about our experience to share with other newly diagnosed families.  We participate with and volunteer for JDRF in multiple ways in order to support those who are working towards a cure. And, we live!  We make sure our boys have a good childhood, despite the presence of Diabetes, and we enjoy our time with them!

With all that being said, today we celebrate Aiden!  A cute stuffed puppy, a sappy card from Mommy, and a big fat cupcake to shove in Diabetes' face!  We celebrate the medical advances that have allowed us to keep our spunky, smart, silly baby with us.  We celebrate his fortitude in dealing with a very crappy disease that requires him to think like an adult WAY too often for his young 11 years.  We celebrate his strength in all he does.  We applaud how much he has learned in four years , and how well he understands and tries to manage his disease. He is an inspiration to many!

We love you, Aiden!

Rhonda