Friday, November 29, 2013

You Know You're a T1D Parent When...

November 29, 2013

Earlier this week, I was awakened in the wee hours of the morning by our power going out.  I chose to just doze back off thinking it would resume soon enough.  I had a warm man next to me; I'd be fine. When I got up around 9am, it still was not back on.  Now, in the past, I would have worried primarily about how I would cook for my kids with no power or I would worry about the meats thawing in the freezer.  And, I did still worry about those things…somewhat.  Since Diabetes has taken up residence in my house, however, my primary concern was…drum roll, please….INSULIN.  It HAS to be refrigerated.  Once at room temperature, it’s only good for 30 days.  If the power did not go on and the insulin thawed, then we would have a lot of wasted insulin.  There’s no way I could have used it all without sending the boys into a coma. As I cuddled with the boys to stay warm, I sent the text message alert to the older boys to NOT open the refrigerator for any reason so that all possible coolness would stay inside.

I called TXU in the morning, and put in our “Out of Service” claim in the morning.  When we returned home from lunch to still no power, I phoned again.  I spoke to someone and told them to prioritize us as I could not lose the insulin.  They were pretty unsympathetic. As the day progressed with still no return of power, I began to come up with alternate plans.  A) Put the insulin in a lunchbox and put it outside since it was only 38-degrees; B) Take the insulin to my parents’ house in their fridge; or, C) Put the insulin in a lunch box and put it in the freezer compartment.  I chose option C.  When the power resumed around 3:30pm (12 hours later), I exhaled and returned the insulin to its safe spot in the refrigerator. All the insulin was saved!

All that back story and rambling leads to this.  I obsessed about the insulin all day.  I knew we could stay warm (get a hotel worst case scenario); I knew I could feed the kids (special restaurant treat for lunch was a hit!); I knew I could easily (albeit very expensively) replace the meat that could’ve been ruined.  But, I was not willing to sacrifice hundreds of dollars worth of insulin.  I was not willing to risk the single medication that sustains my babies’ lives.   Not to mention, to go through the hassle of explaining why so much insulin was wasted and having it refilled would be more than my last nerve could stand.

All that back story and rambling leads to this:  I would have never stressed this much or thought this way if Diabetes wasn’t part of our lives.  And, I don’t think anyone except another D-parent understands my stress in this situation.  My wheels started turning.  Stressing about Insulin is a clear indication that I’m a Diabetes parent.  There are other scenarios, too, that only happen if Diabetes is riding shotgun in your life.  So, with the help of my TOFN friends…Letterman-style but not necessarily in a particular order….

20. You think any beeping sound you hear is an insulin pump failure alarm, and it causes you to cuss (whether out loud or under your breath..depending on the day).

19. You can drop a conversation (important or not) mid-paragraph/sentence/word (either in person or on the phone) to tend to a Diabetes-related issue, and  you will experience zero guilt for your perceived rudeness or abruptness.

18. You carry a D-bag everywhere you go, and the term “D-bag” isn’t the least bit offensive to you.

17. You have turned around or made huge detours, no matter how far from home or close to your destination you are, because you forgot the D-bag.

16. You have to explain to medical professionals (and strangers) the difference between Type One Diabetes and Type Two Diabetes.

15. People think you’re a physician when you discuss Type One Diabetes.

14. You consider “Recognizing a Low Glucose” a developmental milestone.

13. You go to the Pharmacy three times in one day and still do not have everything you need, and you still leave broke.

12. You check for the Carb Counts on the box of Milk Bones, only to realize you’re holding dog treats after you cannot find the Nutrition Facts label.

11. You invite the School Nurse to family functions.

10.  You never sleep all night, and six hours feels like a real treat!

9. You want to sucker punch someone who whines about how tired they are after one night of dealing with a sick kid or partying too much.

8. When your child misbehaves, you ask him/her loudly, in public, “Are you high?”   Using the same loud voice, you threaten to punish him or her if they are NOT high!

7.  People look at you like you’re crazy when you state “He’s been high all day” nonchalantly.

6. Your primary concern in a power outage or pending disaster (ie., fire, flood, storms, apocalypse, etc.) is your insulin stock and/or Diabetes supplies.

5. You make sure your child has candy with him/her at all times.

4. You go to the ER and order people around like your name is on the building (Harper Emergency Pavilion…how can we help you?)

3. You get excited when there is a “sighting in the wild” (randomly meet another T1D family) and you compare doctors, diagnoses, and supplies.

2. You find used test strips in random places…like in your hair after a nap or on your calf while grilling.

And, the Number One Way you know you’re a T1D parent….
1.        Your kid “shoots up” in a restaurant in front of police officers…and you proudly post it on Facebook.

Sunday, November 24, 2013

Bright Stars in a Dark Sky


I have mentioned in conversation multiple times, in my book, in blogs, etc. that 2012 was a very dark year for me.  Aiden was diagnosed with Type One Diabetes in February, and before I could pick myself up completely from that, his twin Asa was diagnosed also in August.  I was sucker punched in February, and then kicked in the heart before I was up off my knees.

I am not really a doom and gloom kind of gal, but truthfully, this was easily the darkest and hardest year of my life.  Being betrayed by a friend and going through a divorce doesn't hold a candle to having your babies diagnosed with a difficult chronic incurable disease.

Regardless, after discussing 2012 the other day, I began to rethink 2012.  It sucked, don't get me wrong, but it wasn't ALL bad.  Some really cool stuff happened in 2012.  These events were like bright stars in the dark sky that was 2012.

In April, I hosted my daughter's wedding shower.  I had a lot of fun planning this great party for her, and my "girls" helped me to embarrass her pretty well.  I did not (and still do not) want to let my baby go, but if I had to, I was going to do it with a bang!

Courtney's blanket I had made out of our 5K shirts

 Also in April, I was honored to be asked by one of my closest friends to be her Matron of Honor in her wedding.  I had always been the bride; never the bridesmaid.  I was elated to finally see her genuinely  happy. So, we had a cool Bachelorette party and a beautiful outdoor wedding.

Bachelorette party crew at Gloria's

Melissa and William's wedding with me and Best Man Stuart on April 29, 2012....Jon Bon Jovi's anniversary!

My two out-of-state nephews flew into town for Courtney's wedding. I always LOVE seeing them and spending time with them.  So, a couple of days before the ceremony, we had a family outing to Six Flags.  Diabetes helped make it a cool experience (albeit stressful) as we took advantage of the disability pass.  We had so much fun, and I was tickled to have my "babies" all together. We had even more fun after the wedding going to Rangers games and having XBox wars!

My offspring and me at Six Flags, June 2012

My two nephews and my niece at Six Flags, June 2012.  I SO love these guys!

In June, my daughter was married.  As I have mentioned before, Diabetes interfered with my level of involvement in the planning and paying for the wedding, but she still had a lovely ceremony.  So hard and so sad to let my baby go, but she was beautiful!

Jerry and me with Courtney at her wedding
At very end of September, I hosted a Surprise 40th birthday party for my husband a few days before his actual B-day.  He was in the dark the entire time until he saw his buddy's bucket head through the restaurant window.  We had such a good time celebrating him!  He is "decades" older than me now!
Surprise 4oth Birthday dinner

 Shortly after his birthday party, Jerry and I took our annual anniversary vacation to LA to visit his brother.  We had a great time taking a vacation as adults, away from kids, away from Diabetes.  We visited Universal Studios on one day, and we had a great time returning at night for the Haunted Houses!
Jerry and me with his brother and sister-in-law at Universal Studios, Oct 2012

 While we were on vacation, I willed my friend's twin babies to stay in the uterus so I could participate in her childbirth!  On my birthday, I planned to have lunch with her, take a nap, then have my birthday dinner with my family.  I stopped at the hospital for some task just before leaving for lunch.  Before I even left the hospital, she called me because she was being admitted to deliver her twins at 36 weeks gestation!  I grabbed some scrubs and clocked in to take care of her.  Yep, I had to WORK on my birthday!  But, it was so worth it.  While getting her ready for her C-section, she informed me that she and her husband had decided to give their newborn daughter my name as her middle name.  I teared up.  What an honor! I knew I was hilarious at 3 am, but I didn't know I meant that much to her.
Me holding newborn Duncan Stuart and Eiligh Rhonda after their birth 10/17/2012
Eiligh Rhonda and me on our birthday, 10/2013
There was only ONE thing missing in 2012.  But, truthfully, I spent so much money on hospital bills and medications that I would not have been able to afford my biggest it's just as well. But, I did miss him and could've used his "dope" dose....

 In 2012, I felt Diabetes had stolen my soul.  My heart was refilled by the light of these stars that shone through that dark sky.  Despite the darkness inside of me...Yes, I smiled.  Yes, I had fun.  2012 was not all bad!  Thanks to those who love me most who helped bring me light in my darkest time!  You know who you are, and I hope you know how much I love you, too!


Hidden Diabetes In Pictures


I was browsing through pictures last night, and of course, my mind started reeling.  I began to think about our life before Diabetes invaded.  I remember, but it's almost like another life ago...a movie I once saw...because Diabetes is so consuming.  And, I remember...
Approximately 28 weeks pregnant with the twins
I was so excited to be having twins, yet so very nervous.  I was already on "modified bedrest" by this point, and I did all I could to carry these babies as long as possible. Despite the discomfort, inconvenience and sometimes misery, I knew carrying them as long as possible was critical for their health and development.  I was willing to sacrifice everything for their well-being.

Hospital photo, about to have the twins at almost 36 weeks gestation.  I was elated to be a Mommy two!  I was already in love. My abdomen was the size of a 300-lb man!

Asa in the NICU.  5# 2 oz. I knew he was mine the minute I saw him because he looked like a shrunken Jerry lying in the bed.  Giant eyes, tiny nose, blonde.  I pointed him out before they told me which babies were mine.
Aiden after birth in the NICU.  He was 5-3 and ironically, had to stay longer in the NICU because of unstable blood sugars.  After scaring the life out of Jerry by not breathing right initially, he had lots to say by this point!
Ready to go home at 3 1/2 days old.  Scrawny but scrappy and healthy. How were we to know they were already laced with the genetic predispostion towards an autoimmune response.  They were wired for T1D. 
Age 3 weeks.  Growing with the good booby juice, still bald with giant eyes!
Age 3 months.  Asa in blue.  Not impressed with the photo session.
Age One.  They were so cute, and we had to work so hard to tell them apart even though we were assured they were fraternal.  At this age, we did a genetic test and found they were indeed identical. I thought it would be important for them to know medically, and little did I know how right I was!
18 months old.  There was no shortage of energy or mischief with this cute duo!

I teared up when I saw this picture.  Asa on the left looks JUST like Jerry's kid photos!  He couldn't deny them if he tried.  They were 3, and so full of life and energy.  
Fall, around age 4.  Little did we know Diabetes was lurking in a dark corner of their bodies wearing its Invisibility Cloak.  He was waiting for just the right cue to strike.
Momma's boys, age 5. I never cease to be amazed at how much they look like Jerry, like I had little to no genetic contribution, and how Aiden has such a similar personality as his Daddy.  They may look like Daddy, but Mommy is #1!
Spring of 2012, in First Grade.  Aiden was diagnosed right around this time. How could we have known the genetic Hurricane that was in full swing inside his tiny body.

We hoped Asa would dodge this genetic bullet but feared the inevitable because they are genetically the same.  The weather patterns were about to develop into that same storm.
Aiden, Feb 2012, in the hospital at diagnosis.  I never realized how thin and ill he looked because it happened so gradually.  He still had the energy to smile and all I could do was cry.
Five months later, Asa was in the same boat.  Seeing brother go through this and his trusted teddy bear, Vanilla, helped make the transition smoother

Two handsome boys on their 8th birthday, Oct 2012.  In another day and time, they may not have lived to see this day.
Crashing in the same bed, making night blood sugar checks even more tricky!
Their first Christmas with Diabetes, 2012.  Santa brought them pancreases.  What the real Santa wouldn't do to make that possible!
I cried a lot this day.  Aiden's One-year Diaversary.  One year living with this craptastic disease.  We celebrated his bravery, his strength and resolve with Ice Cream.  In your face, Diabetes!  Around this time, I started my book.  

Growing bigger and stronger by the day.  Summer 2013. Learning more and mastering more by the day, but we still know we are only co-directors of this show.  Diabetes has the top spot. Aiden has gained almost 20 pounds since diagnosis.

Celebrating Asa's One-Year Diaversary!  Ice Cream and a new toy for him, too!

So Happy that I still get to have my baby in my life.  I'll deal with whatever just to keep him. Asa is my silly-heart, and he often reminds me of myself when I was a child.  I love him so much.

Over a year in. And now, we're NINE!  Where has the time gone?

I feel nostalgic every time I see a little blonde-haired girl with pigtails and curls, and I wonder where all the time has gone. I can remember my daughter like that like it was yesterday. 

 I see platinum blonde little boys with blue eyes, and I am reminded how small my Kyle once was. He now is bigger and heavier than me.  

I look back at pictures of Jace, and I remember how elated we were to have our own baby.  Now, at age 10, he's as tall as my shoulder.  I remember when we thought he would be the last one.

And, when I look at my "baby" twins, I remember how I loved watching them grow together.  I love watching their bond.  And, I wish I could more clearly remember the times without Diabetes.  For the first 7 years of their lives, they lived shot-free.  Unless a cure is found, they'll live the majority of their life with this burden.  Humbling.

But, hey!  Weren't they stinkin' cute?


Monday, November 18, 2013

Cry Baby

Cry Baby


As I’ve mentioned before and as any D-parent has felt, today has been one of those emotional cry-baby days.  I’m not exactly sure why.  I cannot explain why sometimes a thought can pass through my head unscathed, and on another day, the same thought brings me to tears.  Fatigue and stress probably play a huge role, but those go hand-in-hand with Diabetes. Today was really no different.

On Mondays, Aiden has Runner’s Club after school.  Every Monday, I go to the school and either run with him or sit on the sidelines and wait for him.  The teacher who runs Runner’s Club has been trained by the school nurse as an Unlicensed Diabetes Care Assistant (or whatever they’re called), but when I met him, he looked like a deer in the headlights and seemed incredibly relieved when I told him I would be there most of the time.  It’s what Aiden wants to do; I want him to be able to do it; and, I want him to be safe and everyone comfortable.  So, on Mondays, we run.  Sideline pancreas, right here.

For whatever reason today, as he was participating in RC, I started thinking of upcoming things in the next couple of weeks.  As soon as Thanksgiving is over, it’s time to go have their A1Cs drawn.  The quarter after that….  That’s what got me.  The quarter after that…’s been TWO YEARS since Aiden’s diagnosis.  Two years.  Two. Freakin’. Years.  Two years of shots, insulin, highs, lows, meters, strips, appointments, pumps, A1Cs, glucose…you name it.  Two Years already?  Two Long Years.

Tears just started falling as I relived again how scared and helpless I felt those two years ago.  I watched him running with his peers, and I thought of how he could’ve been taken from me.  I thought of all that Diabetes demands. The sleep deprivation, the stress, the fact that I am the only parent who HAS to be there…because of Diabetes.  Then, I felt a little silly for crying again and tried to dab my eyes on my jacket.

When I got home, a glimpse in the mirror caused more tears.  I’m tired.  My eyes tell on me.  This is so draining for a parent, physically and mentally.  It’s aged me tremendously inside and out.  There is not enough make-up to hide the circles or disguise the fatigue.

Finally, the twins had their Third Grade Program.  They don’t like being in the spotlight, so I was so proud of how they participated whole-heartedly on their program.  Asa kept doing the wrong hand motions, the opposite direction of his classmates, which made Jace and me giggle.  Aiden was trying hard to sing along and not look embarrassed.  They were so danged cute.  And…the tears fell again.  Drip, drip, drip.  Again, so humbled by the thought that I could have lost them both.  Humbled by the thought that any major screw-up on my part could hurt them, and they’re still vulnerable. So proud of how much they have grown and how handsome they are.  Proud of how much they have accomplished despite Diabetes tagging along. Sick to my stomach to think we have dealt with this for almost two years.  I dabbed my tears with my jacket.  Even when they drive me nuts, I cannot imagine my life without any of my children.

When they are grown, perhaps they can know and will understand the emotional toll this disease takes on this Mommy. Right now, I do not think it’s fair to burden them with that.  They have enough to think about.  As we walked out, Aiden said, “Were you crying?  I saw you wipe your eyes on your jacket.”  Great.  I’m busted.  How do I explain?

Before I could respond, wise-guy Asa covered for me and said, “She was probably crying…Boo hoo, those are my babies, boo hoo!”  Yep.  You got it, son!  Close enough.

Now, as I type, the tears are falling again.  Quietly sliding down my face.  I want to talk about it, but it will only make it worse. I don’t want the boys to see me cry; I don’t want to appear weak to my husband or any of them.

Being a parent is challenging.  Managing Diabetes can be an ass-kicker. Put the two together and it’s more than Hercules can bear some days. We are doing well, but it is hard.  And, it makes this Mommy cry.  Still.  And, I think it is normal.  I hope it is okay.

Time to go wash that jacket.


Thursday, November 14, 2013

My Book

My Book

Just in time for World Diabetes Day!  11/14/13

I’ve always loved English, and I am a confessed Grammar Snob.  I’m not perfect, but I try.  I tell people all the time that I took AP English in high school and tested out of college English.  Thus, I’ve never taken any English beyond my high school years.  So, it’s not like I have a Master’s in it.  This stuff isn’t hard; it just requires attention to detail.

I’m already rambling.

Anyway, I have always wanted to write a book.  A few years back, I spent a bulk of my spare time trying to draft a fictional novel loosely based on real crazy characters.  I think I wrote 14 chapters or so before I lost steam.  My spare time became less bulky.  Regardless, I still wanted to write a book and say, “I’m a published author”.

As everyone knows, both of my twin sons were diagnosed with the craptastic Type One Diabetes in 2012, five months apart.  To say 2012 sucked (in that regard) is an understatement.  Between that, working overtime, and my baby girl getting married, I was an emotional wreck inside.

Aiden’s 1-year Diabetes Anniversary (Diaversary) was in February.  In January, I really started struggling emotionally all over again.  I was having flashbacks of the pain and anguish I felt on that fateful February day. I was getting angry at the whole situation again.  I really felt myself sinking all over again.

 Around the same time, an old friend of mine contacted me about her son’s symptoms.  He was screaming, “I have Type One Diabetes”.  The same day she messaged me, he was in the hospital with this craptastic diagnosis.  Needless to say, I received a lot of messages from her.  I welcomed them all.  Messages with questions, messages with feelings.  This, too, catapulted me back to that February (and August) day.
I was so happy to help my friend, J.  I was glad I could be there for her for two reasons: 1) She was there for me when I was on bedrest with my twins.  She helped take care of me and my kids, and for that, I’m forever grateful. And 2) I really wished I had had someone to bounce questions and feelings off of when Aiden was first diagnosed.  Besides my husband, I was pretty much alone.  Knowing I couldn't fix it was a tough pill to swallow!

(Later, I was introduced to TOFN, and let me tell you, hearing people speak your language and validate your feelings is very therapeutic.  That group was the lifeline I needed!)

Reliving all those still-raw emotions and helping my friend sparked the idea for my book.  I had the idea that if I could help at least one person not feel crazy or alone, then I had won.  I made an outline of my chapter ideas and things I wanted to include, and I began to write.  It was cathartic and therapeutic.  Frankly, it helped me re-process all of the conflicting, sad, and confusing emotions I had surrounding my boys’ diagnoses and their upcoming Diaversaries.  The book gave me something to focus on, and it really helped in the Acceptance phase of grief.

I showed my work to my equally grammar-snobby friend, Melissa, when it was still pretty raw.  She said, “You’ve got good bones; now you need some meat on those bones.”  I thanked her for the back-handed compliment, and I assured her I did not need to gain any weight.  OOHH, the book.  She was talking about the content.  I see. 

After I put the said meat on the said bones, I had my husband read it.  He’d already read some of the preliminary stuff.  If my husband is anything, he’s honest.  Sometimes brutally so.  He pulled no punches with me.  He told me what needed to be fixed, added to or changed.  I stuck my lower lip out, but I did it, and I think it made the book better. Since this is sort of a horror story, I think he expected it to be very much like Stephen King, but I’m totally less nerdy and creepy than SK is!

After investigating my options, I chose to do self-publishing.  I did not want to have to pitch for an agent, and delay getting the book out any longer than necessary. When I finally finished, I spent a couple of weeks working with Createspace to upload the files and create the book covers.

Melissa helped me again with a great cover idea.  She’s honest, too, but not quite as brutal, and she helped me make it fantastic.  When my step-son helped me shoot the photograph, with no provocation he said, “Wow!  That’s really freakin’ emotional!  WHAT are you doing?”  That was the affirmation I needed that the cover photo elicited the response I was looking for.  After I explained about the book cover, he was so proud to be a part of the process!

Several times, I had to go fix or add “one little thing” then resubmit to Createspace.  Finally, yesterday, the proof was near-perfect.  I think there was a problem with one line space, but I refused to keep splitting hairs.  I submitted it for publishing on Amazon and Kindle.  I’m sure I could still pick it apart today and add more, but I had to put the brakes on somewhere!

A few hours later, I typed my book title in an Amazon search, and voila….there’s my book!  I was tickled!  How cool is that?!  Now, I need to get the word out there.  I want others to read it.  I want the Endocrinologists and CDEs to read and give to newly diagnosed families, because I really could’ve used such help when I walked away from Cook Children’s three days after admission.

I don’t want to be assaulted or coddled, but I do welcome feedback from my D-friends! 

Here’s the link below!  Please share! It’s paperback through Amazon or on Kindle.  It will be more widely available later.  A portion of all proceeds will go to our JDRF Walk to Cure Diabetes Team!