Up In Smoke

Up In Smoke...NOT the Cheech and Chong style. 

July 11, 2020

Holy cow!  I can't believe I haven't posted in over a year!  Time flies when you're having fun...I guess.

Frankly, working on a doctorate, working full-time, living in crazy pandemic times, and managing diabetes for two teenage boys leaves little time for extras.

Recently, we had a "household event" occur, and it got me thinking about the impact of Diabetes on our lives, even in states of crisis or emergency.

Two weeks ago, I lie in bed, contemplating my day as I cuddled my new grandson.  My husband was already awake and bustling about the house.  It smelled like he was using the self-clean feature on the oven again, and I couldn't figure out why he was doing that again since he'd done it the night before as he "seasoned" his mother's cast iron skillet. Before I could think too much about it, the smoke detectors alarmed.  I turned my head to look out my cracked bedroom door to see an orange glow coming down the hallway.  I sprang out of bed and noticed part of our kitchen completely engulfed in flames, from the stove top to the microwave and cabinets above.  I yelled for my husband (who was in our restroom), ran for the phone to call 9-1-1, and grabbed a diaper for the baby.  Jerry quickly let the dogs out while I ran to the bedroom, on the phone, and grabbed the baby.  Jerry yelled for our older son to evacuate out the front door, while we exited through the garage.  Upon exiting, Jerry realized the guinea pigs were still in the house, so I bolted under the layer of smoke to rescue our piggies.  (No time for judgment; just stating what happened).  We all stood in the front yard, waiting for the fire department, with messy hair wearing nothing but pajamas.

What had happened was... :  He wasn't using the self-clean feature on the stove.  He was heating oil in that cast iron skillet to "season" it.  He walked away to use the restroom, and for some reason, it ignited.  It only took a couple of minutes to do so much damage. 

I've sworn my whole life to NOT sleep naked with the rationale, "If a fire broke out, then I don't want to have to stop and get dressed.  I want to be able to run and at least have the clothes on my back!"  My husband is convinced I died in a house fire in a past life; I'm convinced he choked to death. I digress.   We all have our hauntings. I'd also always sworn that the first thing I'd grab in a house fire, once everyone was safe, were my pictures.

Diabetes changed that. Fortunately, my diabetic sons were not home at the time as they had spent the night with their grandmother and had a few days' worth of supplies with them. A smattering of supplies are housed in a kitchen cabinet, and more are housed in the adjoining dining room. The insulin is kept in an exterior refrigerator remote from the fire.  So, with everyone (and the dogs and piggies safe), my next thought was immediately towards those Diabetes supplies. I wanted to run in so bad and salvage the thousands of dollars worth of supplies, however I knew those were replaceable and that wasn't logical. How was I going to rapidly replace pumps, continuous glucose monitors, glucagon, all the little extras that make Diabetes life easier?  What hassle would it be for insurance to cover "duplicate" supplies?  How long would it all take?  How can I keep my boys alive and healthy in the meantime? It truly only takes 2-3 hours without insulin for their sugars to catapult into dangerously high levels.  

Next, I thought of the pictures and my laptop (with tons of pictures and doctoral work saved on it).  I fretted about the memorabilia I have displayed and stored in "The Bon Jovi room". The rest, in the grand scheme, was trivial.  It was a very hopeless and helpless feeling to stand outside, braless, not knowing the extent of the damage that was occurring inside. 

Fortunately, by the time the fire department arrived and took what felt like forever to gear up and go inside, the fire had self-contained and burned itself out.  However, the smoke damage permeated the entire house. In the grand scheme, we are incredibly blessed.  First, everyone is safe.  Second, all the diabetes supplies and insulin were safe. I had to wipe off the boxes but since all were sealed, all was ok. The smoke damage to the bedrooms was minimal, thus the Bon Jovi room was safe.

Due to the kitchen damage and smoke damage, we're displaced as our home is thoroughly cleaned and repaired.  And, I count my blessings.  Our boys, our grandbaby, our animals... we're all safe.  The rest is just a hassle!

Lesson:  Get a fire extinguisher.  Don't walk away from a pan on the stove, even for just a minute.

Support our team and our cause at www2.jdrf.org/goto/FuseAATeam

Rhonda

Say It to My Face!

It's been a while since I blogged.  This weekend, something happened that was so awesome so I had to not only embarrass myself but also had to share!

As you may or may not know, for quite a period of time, I have lectured to UTA Nursing students in their Pediatrics course about Type One Diabetes.   It's an interesting approach of viewing the disease from a nursing perspective and also as a parent.  One of the things I do at the end of my lecture is to show the student pictures of famous people living with Type One Diabetes.  The photos include politicians, activists, musicians, athletes, etc.  It's a demonstration of how this disease is part of life and does not define one's life.  It's meant to be an inspirational part of the lecture.

Well, I approach much of my life with humor, because if we don't laugh, we'll cry.  Right?

In the lecture, I show the picture of this fine gentleman.

After showing the picture, I amuse myself and the students by saying, "Anyone know who this is?"   I've never had anyone be able to identify him.  So, I answer for them, "Who cares?!!!  Just look at him!", which always gets some snickers.  After the requisite laughs, I reveal his name is Kris Freeman, and he is an Olympic cross-country skier.  Not the sport of my choice, mind you, given all that white junk on the ground, but he did not let T1D squelch his dreams of being an Olympian.

My thought:  He's from up north.  He's an Olympian.  I'll never see him in my life.  

Fast forward....

Yesterday, I was honored to volunteer at the JDRF Type One Nation Summit in Grapevine, TX.  Anyone want to take one guess who the Keynote Speaker was?

No other than the said gentleman above, Kris Freeman.  Wait, what?!!

I'm not afraid to embarrass myself at times, especially with such an awesome complimentary story.  I saw him walking around, freely talking to whomever, so I branched away briefly from my volunteer duties and spoke to him.

I told him about lecturing, using his picture, and my famous line in the lecture.  He gave me a big smile!  I admitted it was pretty embarrassing, as I never thought in 1 million years I'd meet him, but I wasn't afraid to embarrass myself to pay him a well-deserved compliment and share a funny story.  I thanked him for being an inspiration for all with Type One Diabetes as he did not let it define his life or squelch his dreams.  At the end of our chat, he told me, "There's an embarrassingly large number of shirtless pictures in my speech!"  I snagged a photo with him, smiled, gave him two thumbs up, and went back to my duties!

Lesson:  If you can't say it to someone's face, you should not say it!

Have a wonderful week!
Rhonda

Half Time

Half Time

I don't have a lot to say here as this just popped into my head.  Just wanted to share. Due to work and starting a Doctoral program, my time for leisure and blog has been limited.

The twins celebrated their 14th birthday on 10/21/18.  It's so hard to believe they're already in the throws of their teenage years.  I can't believe it's been this long, yet I can hardly remember a time without them nor can I imagine a life without them.  My youngest, my babies, aren't really babies anymore!

Since they were diagnosed with T1D at age 7, now 14, they've spent nearly half of their lives with T1D.  They are doing amazingly well, doing a ton of self-management.  At this point, we're just the bank to pay for it all and the supervisors.  Can't complain as the last two visits to the Endocrinologist have yielded record low Hgb A1C levels!  They've learned so much along the way and are meeting the challenge head-on, better than many adults!

We're thankful for all of the medical advances to promote healthy living and prolong the lives of those with Type One Diabetes.  It used to be a death sentence as little as 100 years ago!  (I guarantee if something happened to these boys, heck, or any of my kids, it would be the death of me!  Selfishly, I need them here for a long time because I plan to live to see 100!).

We're thankful for the technical advances that make life easier and keep the boys safe.  We're continuing to support JDRF and keeping our fingers crossed they will see a cure in their lifetimes and this disease will be prevented in future generations.

Half time. Half the time of their lives living with this craptastic disease.  Shortly, we'll have to say they have lived with T1D longer than not, and that's humbling.  One day, we'll be able to say they used to have T1D!

In the meantime, we celebrate their lives and health.  They are handsome, funny, and oh so smart!  They have so much to offer this world, and we refuse to let T1D stand in their way!

For my boys,
Rhonda

Perfect Storm

August 2, 2018

My boys were diagnosed with Type One Diabetes at age 7.  As crappy as this disease is, it's fairly easy to take the reigns and "control" when the child is young.  My goal, as their mother, educator, and substitute pancreas, was to have them fairly self-sufficient by middle school so managing lunch and their school day was predictable and routine.  Mission accomplished.

I'd been warned all along that once a T1D kid reaches his/her teenage years, things can go haywire.  Hormones, attitudes, sleeping in, wanting to eat junk food, peer pressure, wanting to fit in...all are fabulous set-ups for rebellion and wanting the whole thing to go away.  Preparing myself for how to deal with it, I have talked to parents of teen (or former teen) T1D kids and read books.   I braced myself for the teenage years which arrived last October.

First, this is NOT my first rodeo with a teenage child or a teenage boy.  These guys have five siblings who preceded them into their teenage years.  I am prepared to deal with lovely attitude and my newly discovered stupidity and ridiculousness that accompanies all children into their teenage years.

Foolishly, however, I truly felt we'd be well into the teenage years before the Diabetes rebellion began.  Instead, I think Aiden was 13 years and one day old when it started.

Aiden on his 13th birthday

It started with him lying about checking his glucose level.  Even though he was wearing a CGM, he still had to check at least twice per day.  He would say he checked.  He would refuse to write down his numbers on the clipboard (what I use to monitor trends and adjust insulin doses).  One weekend, when he returned from Memaw's house, he literally had not checked his sugar for the entire weekend.  He relied on the CGM, however, the technology is only as good as the information you give it.   He just was really tired of this after almost 6 years, and he, as a typical teenager, had better things to do. 

I fussed.  Nagged.  Griped.  It didn't change unless one of us stood over him and made him do the right thing.  We spent a couple of months just trying to get back the compliance of the sweet little boy we once had. 

Then, a perfect storm of events changed the tides.

First, that weekend sent me over the mental edge, and Aiden and I had a heart-to-heart.  I excused everyone else, and we drove in the car to pick up the older brother.  During that ride, I told Aiden how incredibly disappointed and scared I was as a result of his behavior.  In summary, I said, "I have dedicated my life to learning as much as possible about this disease so that I can teach you.  I volunteer my time and donate money to help those who can change this for you and Asa!   I have lost sleep, lost money, given up promotions, and shed many tears because of Diabetes.  I would do anything in the world to take it from you, but I can't.  It sucks!  I know it sucks!  But, that doesn't give you the right to hurt and endanger MY SON!  If you keep this up, you'll can lose limbs, go blind, have kidney failure and die at a young age, and I DO NOT want to bury ANY of my children!"   This was all through tear soaked blubbering.  I've always protected their emotions, but this time, he needed to hear it to reach him.

Next, apparently, a long time ago, I told the boys if they got their Hgb A1C levels under 7, they could stay home for the rest of the school day.  In January, Asa's A1C was under 7.  I was shocked!  Boy, they QUICKLY held me to my word.  Ok, Asa gets to stay home for the rest of the day.  Well, by proxy, Aiden thought HE should also get to stay home. Even though Aiden's A1C was the best we'd seen in awhile for him, it wasn't under 7.  Well, that wasn't the deal.  He pleaded. Begged.  Argued.  I took a very sulky Aiden back to school while Asa got to come home and play!  Aiden did NOT like that!  He was mad at me the rest of the day. 

Finally, twice per semester, I lecture to UTA's Pediatrics class for undergraduate nursing students.  I speak on the science, the nursing care, but also the parent perspective.  It's a well-received robust lecture.  In February, I had to take the boys with me to conduct that lecture.  They had a morning dental appointment, and we went straight from there to UTA.  They sat in the back of the room and listened to my hour-long lecture.  They knew I lectured, but I don't think they fully grasped what it involved...My knowledge, but also my heart, out in the open for a lecture hall full of students to see.

Aiden commented on our way out about how much he learned listening to me.  Those three things in short succession, something clicked with him.  All of a sudden, he decided to take his Diabetes care much more seriously. 

Aiden cut out junk and seconds.  He's eating more salad, fruits and vegetables.  He's choosing grilled over fried.  He's diligently counting his carbs and limiting carbs.  He'll choose a drink from Sonic over an ice cream.  He keeps his PDM (device to control his insulin pump) and CGM (device that reads his glucose level) close to the hip.  He treats when things start to get high to keep his numbers in range.  He requests his grandparents cook for them instead of taking them out to eat because he knows how restaurant food impacts him; when he does go to a restaurant, he makes wise choices. Asa has always been easier to manage, for multiple reasons, but he, too, jumped on board and followed suit.

In return, Aiden lost about 20 pounds.  I had to regularly decrease his insulin rates to prevent dangerous lows.   Since his diet was healthier and he was exercising more, his body required much less insulin.  Besides normal teenage angst, his attitude improved tremendously (off-kilter sugars impacts mood big time!).  I complimented him immensely and shifted the focus onto how he feels since his sugars are more steady.  He admitted he felt much better.


In May, at a return visit to the Endocrinologist, Aiden had a record low Hgb A1C of 6.8.  He dropped almost a half point.  Asa's, too, was even lower than last time!  If you don't know, an A1C in the 6's is near-normal, near non-diabetic.  And, every reduction in the A1C level is a big reduction in the risk of complications.  He nailed it.  And, he got to have a day off of school!

Boys at doctor's office, hearing word of record low Hgb A1C levels in May

Some kids are harder to reach than others, and it always baffles me what is the final key to get through those thick skulls.  We worried he would revert to being lazy about Diabetes once he got his day off of school, but he has stuck it out all summer.  He is SERIOUS and gets mad at me if I "interfere" with his dosing.  So, I guess, now, I'm just the supervisor.

I'm really proud of these boys, and I hope the remainder of their teen years are spent managing their craptastic disease with such fortitude.  It will help them succeed into the amazing adults they are destined to become!

Help us support JDRF today as they search to find better treatments and a cure for Type One Diabetes!  Maybe one day, they won't have to worry at all!
www2.jdrf.org/goto/FuseAATeam

Rhonda

Some a Chapter, Some a Page

Some a Chapter, Some a Page

April 27, 2018

On the first day of third grade, Melissa approached me and asked me to play.

My family had moved to a new part of town, new house, new school. Believe it or not, I was a pretty shy kid, but once I knew someone and gained comfort, I would come out of my shell and talk…A LOT (not too different from now).  Initially, very shy.  We played at recess and ate lunch together, and a friendship began.

For the next three years we were practically inseparable.  We rode bikes (without helmets *gasp*) all around our small town. We slept over at each other’s houses. We played with dolls and played outside. We started “clubs” that usually only lasted a day or so.  This was back in the day with only one house phone, no video games.  We had to use our imagination.  We began puberty together (isn’t that a great time in life?!)  We challenged each other, competitively, to exceed in school. Participated in Honors classes together.  Both were offered to skip a grade. Spooked each other playing the Ouija board. Irritated our older siblings with our mere presence.  Had slumber parties.  Figured out how to use a brush and curling iron. She gave me my first Cabbage Patch Doll for Christmas (which was a HUGE deal!).  Our other friends, twins Cassandra and Catrina, were essential parts of our friendship circle, but Melissa and I were truly best friends. 

Couple of really dorky pics of us as kids

At the end of fifth grade, the four of us all went our separate ways due to our family circumstances.  Melissa moved to Arizona to live with her father. The twins moved to Mansfield.  My family and I moved to Crowley.  Bigger house, better schools.  All different directions, all new adventures, but the bonds were formed.

The summer after Melissa moved, at age 12, I flew on an airplane for the first time to visit her in AZ for two weeks.  We paraded all over Tempe as we had done our little township outside of Fort Worth. Over the remaining course of our school years, we’d visit when she came back to TX to see her mother.  We wrote letters, and occasionally, we spoke on the phone.  You see, the efforts to stay in touch were much more difficult as there weren’t cell phones, social media, or email, and calls were long-distance.

During college, we visited at least once, I believe for my first wedding.  We had a great reunion, all four of us, in 2000 shortly after I married Jerry. It never ceases to amaze me how that childhood bond and friendship leads us to always picking right back up where we left off, as if we never missed a beat.   Social media has since helped keep the bond alive and the connection strong.  We can now more easily stay in touch and follow each other’s lives.

So, you had to know I’d throw Bon Jovi in here.  Side note, whenever Bon Jovi announces a tour, of course I plan for all the TX shows, but I also like to pick at least one other city to visit and see the show. This year, Bon Jovi played two shows in North Carolina, where my friend Melissa had recently moved.  It was the perfect storm.  Long story short, I reached out to her, we planned a girls’ weekend to visit and see Bon Jovi. She hasn’t seen a concert since college, and we hadn’t seen each other in a while, so she was very excited about all of it!

I snagged us some fan club presale tickets in row 6, thinking this would be pretty amazing for her.  Since I’m weird and obsessively curious, after I purchased those tickets, I just glanced to see if any better tickets were available.  I thought my vision had failed me when two front row seats for face value popped up.  Needless to say, I whipped those into my cart so fast!  I rolled the dice and bought them!  My only Front Row seat on this tour!  (The other set sold, so I wasn’t out that $).

The minute I secured the best tickets and my flight, Melissa’s super cool husband reserved us a hotel room in Charlotte near the venue so we could spend time together in her home with her family, but we could also spend time alone in Charlotte.

I arrived in NC around lunch on Friday.  Instantly, we reconnected.  It was like we’d just seen each other last week.  We picked right back up where we left off.  SO much to talk about, SO much to share.  Rarely was there a dull or silent moment.  The semi-amazing part is that despite spending so much of our lives in different states, having different life experiences, different parents, different schools, etc., we turned out to be so similar.

We are both nurses with the same graduate degree.  Spelling and grammar Nazis. We talked about husbands, kids, works, parents, siblings, old boyfriends, friends, parenting, life, religion.  You name it, we probably talked about it.  Almost everything was the same and we had the same or similar philosophies.  I guess we were onto something at age 8.

Once we arrived in Charlotte for the concert, we checked into the hotel where we ran into the opening band on the elevator.  (They waved at us from the stage!) We explored the Uptown area a bit before we returned to get ready for the show. I fixed my typical “rock star” hair and put on my new bright sequin shirt. (I got quite a few comments on that shirt!)  Melissa cleaned up like a super model, so beautiful.

She couldn’t believe our seats!  When the lights went down, the excitement soared!  She rocked out and jammed like a real well-trained groupie.  Never having seen Bon Jovi live before, she didn’t know what a treat she was in for!  I think she was dazzled not only by the quality of a Bon Jovi show but also amazed at the front row experience.  It’s something that is hardly matched, and I may have created a monster!  Facial expressions. Eye Contact.  Communication with the artists. Watching the on-stage communication between the musicians and the nuances of each person. The sweat…..those things you cannot see from far away.

  

Towards the end of the show, JBJ jumped off the stage, during Bad Medicine, and went to his left to shake hands with fans.  This isn’t a typical move from him.  Besides, singing immersed in the crowd to sing two ballads mid-show, he doesn’t often leave the stage, although he will lean to touch hands.  We did not know if he would come our way or not.  When he started walking our way, she had her camera ready.  I had my hands ready to shake his.  Instead, he locked eyes with me, and holding his mic in one hand, leaned in and gave me a hug and KISS!  ( Look at 1:40 on. It really happened!)Afterwards, he continued down the way to shake more hands.  We almost died!  After 30+ years of fandom, a dream come true! 

THAT KISS, YO!!!

DID THAT JUST HAPPEN?!!!!

Afterwards, we visited a local hotel bar just to wind down and recap and we encountered some band members there.  When Keyboardist David Bryan saw me, I said hello, and he commented on my shirt “being awesome” and said he saw it from his side of the stage (Opposite us!).  I think it’s my new lucky shirt.

Me with David Bryan and Phil X in Charlotte, NC

We settled into our room after a long eventful night.  The next day (ok really, it was the same day since we retired in the wee hours of the morning), we explored more of Charlotte on a comedy bus tour, then returned to her home. We spent the remainder of my time in NC enjoying her family.  Her husband is so kind, clever, and funny.  Her adorable boys are smart, charming, and well-behaved.  They were all truly a treasure to be around.  I didn’t want our time to end, but I couldn’t wait to share my adventures with my own husband and sons.  My entire weekend was amazing.

Comedy Bus Tour around Charlotte

I’m writing as I fly home.  I can’t wait to see her again!  North Carolina is beautiful this time of year, and it’s a great place with plenty of things to do within driving distance.  I know that now not only do I have a great girls’ weekend destination, but I have a guaranteed Bon Jovi buddy and tour stop in the future! 

I have now been to over 30 concerts before this trip, and Charlotte is my new Number ONE!  Great seats. Great set list. JBJ sang “Living with the Ghost” (Living With the Ghost). 35 years of friendship and 30 years of fandom collided perfectly. Got the set list, and our photo was on twitter at the end of the show (the girl said she chose us because of my shirt!).  JBJ had great energy.  Experienced it all with my first BFF…and oh yeah, THAT KISS! 

In my life, I’ve always had good luck with “Melissas”  She was the first.  Some people enter your lives and they are there for a page, a chapter, or the whole story.  Missing only the first few chapters, she’s a whole book person.

Once upon a time on the first day in third grade…..   the rest is history!   

Spring Back

January 29, 2018

Another freelance unedited blog here, so forgive any typos. Throwing this one out quickly before I have to head to a Leadership retreat.

Yesterday, I again had the pleasure to volunteer for JDRF to help at the North Texas Type One Nation Summit.  As I'm sure everyone knows, I do what I can to help this organization as they are the primary organization working to make life better for my boys.  If I can't fix it myself, I'm helping those who can.  So, we Walk; I coach other family teams (Family Team Coach and Family Team Chair for two years); I am an Outreach Volunteer (mentor); and, now I serve on the Board of Directors.  And, when I can, I just volunteer to help out.   I'm rambling now.

Anyway, yesterday, I helped out at the Summit at the beautiful Gaylord Texan Hotel Convention Center.  TONS of Pokestops there, by the way, but I digress!  My station was to work the JDRF Events table.  So, basically, in the vendor hall, I helped man (wo-man) the table and talk to anyone interested about upcoming JDRF Events...Gala, Walk, Ride, Kids Walk.

To my point...  A little family came up with a Dad, who did a lot of talking, very passionate, and a beautiful tall thin 13-year-old girl who was newly diagnosed.  I saw a quiet figure, presumably mom, standing next to Dad.  Dad was asking questions and somehow, we branched into a conversation about Continuous Glucose Monitors.  I pulled up my Dexcom Follow to show him how it worked and how you can get real-time information.  Shockingly, I got this reading....

...  Shocker.  I HAD to screen shot it.  But, that's not my point.

As I always do, I try to speak directly to the new T1D kids, too, to help them reduce their fears, answer their questions, talk to them on their level and meet them where they are, because ultimately, it's their disease and they have to learn to live with it.  I talked to Dad.  I talked to this beautiful girl.  I explained how some basic stuff worked, how it could fit into her dancing routine, and I encouraged her to live her life.

All of a sudden, I thought to look up at the quiet mom figure standing next to Dad.  I looked up into a slightly older version of this beautiful girl's face and saw bloodshot and red-rimmed eyes.  I nearly burst into tears myself.  Right there, in that moment, making eye contact with this woman, I was sprung back to 2012.  I recognized immediately in her my 2012 self.  A desperate, scared, mourning Mommy. Makes me tear up just writing it.  I wanted to jump over the table and hug her, which is huge for me because I'm not a big hugger.  Suddenly, what I was talking about with Dad and Daughter didn't matter anymore.  I needed to reach this Mommy.

I asked her if she was ok.  I looked her in the eyes and told her, "It's going to be ok".  Trust me, that's worthwhile to hear but hard to believe when your child is newly diagnosed.  Now, I am never at these events to sell or promote my book, but this time I wish I had one to hand to her.   So, instead, I looked her in the eyes and said, "I know where you are.  This sucks and it's hard.  Let me help you.  There are tons of books that teach you how to take care of Diabetes, but there's not much out there to tell you that what you're feeling right now is normal, and ok. I was where you are in 2012.  It will get better!".  I gave her this blog web address.  I gave her the title of my book to look up on Amazon. Mommy Can't Fix It

I encouraged the family to explore their devices and resources at the vendor tables.  When they walked away, I had to catch my breath.  My heart ached for that Mommy.  In my haste to reach her, I never got their names, and I regret that.

So, my hope is that she will read this blog and maybe reach out to me.  I want to help her; I want the help I didn't have when my boys were diagnosed and all this CRAP was brand new.  I want her to know it's ok to mourn.  I want her to know it's going to be ok, and her daughter can still follow her dreams.  I want to give her a hug.

My sweet T1D fellow Mommy, if you read this, message me.  If not, I hope that I helped her, even in some tiny way.  If I did, my day was a success.

Off to fix my hair before it sticks this way....

Rhonda

Newborn Baby

Newborn Baby

June 29.  THAT was my last blog?  Jeez.  Time flies when you're having fun.  I'm going rogue here and blogging free lance, which means, I didn't type-edit-save-edit-type-save-edit-publish first.  We'll see how it goes and how many mistakes you catch.

Last week we had a heck of a week.  I made some changes to their insulin rates and correction factors, so for two nights in a row, we chased lows down all night.  Imagine one of the loudest and most annoying sounds/beeps ever.  That's what we kept hearing all night.

When we silenced the alarm for one boy, the other one would sound.   One night, Jerry was up nursing the boys/Dexcom for about 3-4 hours.  However, he forgot to take his phone with him (which elicits said annoying sound) so it continued to wake me up.  Work doesn't care how Diabetes behaves, so he went to work with bloodshot eyes.

Jerry.  This may or may not be his actual photo that morning.

The next night, I took the hit.  I was up and down all night.  Needless to say, I crawled back into bed as soon as the boys were ready for school.  Fortunately, I had the day off and could sleep a few hours.

The third night, I had taken the boys out to eat, so instead of low, they were high.  I had to get up to correct their high sugars.  Lesson:  If you knew how hard your body worked to process a heavy meal, you'd never do it again.  Well, ok, maybe you would, but you'd think more about it!  What happens is their insulin dosing is fantastic and covers them for 4-6 hours, THEN the fat is processed and the glucose jumps through the roof.  I digress.  The point is, I was up and down trying to get their glucose levels to normal before morning.  I succeeded but I lost another night of sleep in the process.

I figured out the problem and the next few nights were ok.  Fortunately for Jerry as I had to work three nights in a row.  (See eyes above).

Last night, we were both super tired so we went to bed early.  I startled awake at 2 am, after a whopping 5 hours of sleep. I couldn't shut my brain off.  I wondered, "Why haven't I heard the Dexcom alarm?"   Instantly, I think negatively.  OMG, I bet they're not tracing (technology and wi-fi isn't perfect); clearly they're up there low and dying and I'm just laying here.  Wait, listen.  Do you here the devices alarming from the next room?  Nope.  Clearly they failed, too.  Finally, I look at my phone.  Both boys are normal and steady.  Shocker.  

But, then guess what?  It was just enough thought and full bladder to fully wake me up.  I tossed, I turned.  I contemplated the meaning of life.  I counted sheep.  Nothing worked.  I finally got out of bed at 4 am.  Ran an errand.  (Yes, I can do that at 4am since hospitals are open 24/7.  Fortunately my night shift gals were around to visit with).  Then, I headed to work.  A full day with students.  A job that doesn't care how Diabetes behaved or how much sleep I had. Put an extra shot of espresso in my Starbucks, please!   I have to take my bloodshot eyes and physical fatigue, put my best face forward and plow through the day, all the while plotting and planning how I can possibly get into bed by 6:30 pm without feeling like the most awful mother on the planet.

I think I've said it before, but having children with Diabetes is like having a perpetual newborn baby.  So many nights, we are up and down tending to low or high glucose levels. One boy, both boys.  Who knows?  Good food, bad food.  Pump failures. Even when all is well, we wake up to make sure all is well.  There's not a night that one or both of us aren't up at least once to assure the boys are ok.  It's exhausting.  It's like tending to that newborn baby.  Some nights they barely cry, some nights the cry all night, and when they don't cry, you panic and go make sure they're still breathing.  It's exhausting.  

Childhood should be simple, and Diabetes complicates it tremendously.  I work hard to make sure they can be kids and their lives, their childhoods, are as simple as possible.  The price:  Sleep.  The payoff:  Healthy, well-rested children.

In the meantime, life goes on and Diabetes doesn't care.  It won't be forever for me (although I am sure the worry will never cease), but it will be forever for them if we don't find a cure!

Until my next nap,

Rhonda