Different

When I called Mimi from the hospital that Sunday morning to tell her Saul’s diagnosis she said “Courtney, don’t you treat that boy any different now, you treat him just like you did before… don’t go spoiling him just cause he’s sick.” I sincerely agreed and promised I would do my best.

Saul turned 18 months two days ago. A whole year and a half old. The definitive mark of “toddlerhood.” The time when I start explaining his age in years instead of months. The stage of potty-training.  The start of terrible twos. Physically, mentally and emotionally he is no longer a baby.

I guess it all started about a week ago. Tired of getting up 5 and 6 times throughout the night I started picking Saul up out of his crib and putting him in bed with me.  My early morning fog brain was operating at its most simplistic level and thinking through the long term consequences of my actions at the moment was not on the register.

[numbers ok. must get sleep. stick bop bop (paci) in mouth. must get sleep. sure climb on top of me and close your eyes. must get sleep. must get sleep.]

That was Monday night, then Tuesday… then Wednesday… then Thursday… and as I lay in bed last night with a 20+ lb little boy on my chest I realized… ummm…. this is not good.

I decided last night I wasn’t going to cave. I was going to stand strong. Let him CIO. And that worked the first time… and the second… and then I failed. I kept thinking what would that crazy English nanny say to me right now in the midst of my weakness? I tried pumping myself up… “You can do it… Courtney… you can do it… just put your earplugs in.”

But as I lay there listening to him wail and do the death-scream-cry at the top of his lungs… I kept thinking…. What if it’s his numbers? Did I give him too much insulin? What if his lantus isn’t working? Is he too high?

Fortunately (or maybe “un” in my case – in terms of making myself feel better) his nightly waking then sleeping with me is not being caused by his diabetes- it’s the habit we’ve created.

And… like that… We go back to performing our nightly routine. The picking him up, the squeezing hands around my neck, the nuzzling his head under my shoulder blade the quite murmurs of “mom mom mom mom mom mom” as I gently lay down with him and run my fingers through his sweet hair while softly rubbing his back.

And I think to myself… am I giving in to the diabetes? Am I letting it win? Am I treating him different?

I woke up this morning like every other morning this week… to the sweetest smiles and hugs and a “bop bop” shoved in my mouth.  I took the paci out, rolled over and looking him in the eyes I presented Saul with his first “big boy dilemma.” “Buddy you got a choice… either you sleep in your own bed at night like a big boy or you gotta give up the bop bop like a big boy…  one or other has got to happen… so what’s it gonna be?”

We made it 6 hours paci-free.  

Diabetes complicates everything. Sure raising kids is tough… even the best ones test your patience and drive you to your wits end… but raising a diabetic kid is even tougher.  It’s constant man on man defense with the big D. And yeah… I’ve been checking him… each night… a good 8 or 9 times just to be sure… to be safe.

I know deep down that an 18 month old should sleep in their own bed. I know it looks ridiculous to see a toddler walking around with a paci in their mouth. But I also know that this little boy is getting ready to face some serious obstacles in the coming days… ones that even grown adults need comforting mechanisms for (Jennifer told us yesterday he is the youngest she has ever worked with- her next youngest was put on the pump at 4).

I have no doubt that Saul will do fine. He’s a tough booger even if he does need his Mommy to go to sleep. And when it comes right down to it… I just hid all the bop bops… I didn’t throw them away J

Epiphany

Upon the arrival of yesterday’s Medtronic Christmas extravaganza I broke out with … “the times they are a changing” ….. actually, more appropriately, I “2012 Dylan” and thought to myself “the times they have a changed.”

While I sit here typing this post I am simultaneously texting both Saul’s pediatrician & our Medtronic pump trainer while checking emails from UK ped’s dept & our diabetes educator… this my friends, is medical care in the 21^st century…. and quite frankly…. I love it.

It shouldn’t come as any surprise that I generally “write about” what I know about- so naturally my thought process has turned to something in which I’m very passionate.

I quickly came to the realization yesterday that

1.       Saul is very fortunate.

2.       There are a lot of folks out there that are a lot less fortunate because they lack 2 crucial resources: education & technology.

Up until this point (aside from general “tune ups”) we’ve had limited personal encounters with those in the medical profession- so I guess it’s come as a shock to actually see this “health care revolution” first hand.

I’ve thought a great deal about people diagnosed with T1 in other countries- especially children- and the unfortunate hand they’ve been dealt. This is also true of kids here in our own country- the most industrialized in the world- whether or not you’re a supporter of universal healthcare--- I dare say there is anyone out there that would argue that children should be punished for situations out of their control (say… parents income and educational level?)

The divergence into the medical profession only strengthens the belief I have in my own.  Like universal healthcare and “stem cell research” (another topic I will take on at a later time) there are endless debates in the realm of education.  Reforms, curriculum, testing… we’ve all heard the arguments (those of us in the trenches … well… we live it on a daily basis) and of course, unlike medical debates, everyone seems to “chime in” when it comes to staking their claim about “school” because everyone has “experienced” school at some point in their life (which of course gives justification for their opinion).

Educational theories may come and go in popularity as quickly as the politicians who endorse them…  and I won’t lie- I have definitely had my fair share of educational “flip-flopping” (especially once the reality of “trench life” hit and I no longer had the comfort of a college classroom) BUT… there is one philosophy I have always held on to… one idea that I know is true… one belief that keeps me in this profession when I often question “what am I doing?” and “why am I doing it?” …. and I think yesterday was the pinnacle of that realization.

It was always hard to explain to high school students exactly why education matters. Sure- I could acknowledge their examples “my parents are fine without a degree” and I could relate to their “act on impulse” attitudes because I too (though it’s getting further and further away from me) was 17 once… but, like many secondary teachers I was often disheartened by apathy and indifference.

{I just imagined myself standing in front of a 3^rd period U.S. History class saying… “GUYS!!!… look… if you end up with diabetes you gotta be able to read… okay??? You gotta have serious technology skills to work your insulin pump… and glucose monitor… and track all your data using software programs…. Okay?!?! You have to be able to do basic math… if you can’t carb count… you’ll be sick all the time… Alright?!?!? So… go to the library and check out a book!!! Like RIGHT NOW… Finish writing that paper for Mr. Williams…. TONIGHT!!!!…. Stay with Mrs. Creteau afterschool today for Math tutoring… I’m SERIOUS… DO IT!!!”} 

{excuse me while I recover from my laughter}

Number 1. I will publically admit I am a product of my mother… because that was some serious channeling of Ann Grimes.

Number 2. I didn’t really talk like that… and plus I NEVER talked about my personal life because I was always too busy teaching Core Content. Ha.

Number 3. I guarantee you in 30 years EH Sebulsky will publically admit she is a product of HER mother… because seriously… did you see my FB status yesterday?

Sure. There are tons of examples of people surviving… thriving with T1 who might be uneducated, poor and lacking resources.  Please don’t think I’m making judgment calls on people lacking college degrees. I mean… a few weeks ago I was the one crying to Sebulsky that because we are poor… Saul will miss out on the latest and greatest treatments because we won’t be able to afford it...

I guess my point is… most of us take education for granted- I know I do… but at some point you may have an epiphany and realize that being able to read, write, problem solve and work technology might actually mean life or death or the lengthening thereof.

Christmas in March!!!!

Good things to come!!!! Here's a preview! Stay tuned!!! Saul couldn't wait for his "special delievery" to arrive. The 3 of us were so excited you would have thought it was Christmas morning around here!!!

Harper insisted on "posing" by Saul's "special delievery" so Daddy could see his boxes!!!

1st delievery.... more to arrive later today!!!! Let the learning begin!

Winning the game

It’s the small successes in life.

Next week will mark 2 months post diagnosis. In this relatively short period of time …..……

I am now capable of handling hypoglycemic episodes with ease and feel confident that if needed I could administer a dose of glucagon without having a nervous breakdown or anxiety attack… something that was not possible 2 months ago.

I am the queen of carb counting… you name a food… I’ll give you the carbs in 10 seconds flat.

I can successfully do nightly blood glucose checks with Saul still asleep.

I can successfully do ONE nightly blood glucose check with Saul still asleep.

I have mastered injecting insulin in the stomach… by myself… without the help of EH holding Saul’s hands over his head while I sit on his legs.

I impressed Medtronic sales reps and insurance handlers with the knowledge I’ve gained from 2 months of research on T1 & insulin pump therapy.

You know I used to hear stay at home Moms say things like “staying at home is the most rewarding job there is” and I would secretly chuckle and think they were missing out… now I realize they are right and I was wrong.

Playing the Game

I have been thinking about this analogy for several days and it probably deserves its own post…  but I’m gonna throw it out now just because.

I imagine myself managing Saul’s chronic illness like I’m playing a video game… granted… and Sebulsky & Jay (my brother) will tell you this… I’m a TERRIBLE video game player, quite possibly the world’s worst. HOWEVER… I seem to have some success with the diabetes analogy.

I pretend that I’m working my way through levels and in order to gain points I’ve got to always keep his blood sugar in range. Whenever he goes low or high I lose points- when he has a hypoglycemic episode I “lose” one of the extra lives I’ve built up. The key to me winning is not only carb counting but also problem solving the things I know will cause him to drop or go high… things like…. exercise, stress, fruit gummies (haha.. NO SERIOUSLY…) It’s a constant balancing act… it’s constant strategy… I guess cause I’m competitive or maybe cause I’m a weirdo thinking about it in these terms makes sense to me… God help him if I had to actually save his life by PLAYING a video game….

So that’s a quick post.

I’ll leave you with some pics. I’d write a better post but I’m too busy dressing up as a fairy princess, building train tracks, and pretending to be a giant squid.

This is sweet.

NOT a low-carb snack...btw.

This is sweeter.

Gettin some "sweets" from my sweet boy.

Pucker Up

Sweet Solly with his Super Powers

EH and I are working on a story...

Once upon a time in a land far, far away there lived a little boy who had magical powers.

He was born during a time when many people were bitter and sour, angry and hateful, when people argued over silly things and often only thought of themselves. Before he was born his Mom and Dad sometimes wondered if they should bring a tiny, sweet boy into such an unpleasant world, but seeing as they really wanted a baby they decided it would be best.

At first everyone thought the little boy was like all other little boys… he played, and laughed and jumped and climbed but deep down his Mom and Dad knew there was something special about him. He was different from other kids.

Soon after the little boy turned one a terrible thing happened. He suddenly became very ill. He was rushed to the hospital and the doctor there looked at him and said…. “I think I know what’s wrong… I’m afraid I have to tell you… this boy is… too sweet.” He’s got too much sugar in him… his blood is like syrup… it’s making him very ill and we’ve got to work fast to get the sweetness out of him before it kills him.”

The boys Mom and Dad cried. They were so sad. How could it be? How could there be such a sweet boy at a time when everyone else was so bitter and harsh?

The doctor sent the little boy home and told his Mom and Dad the treatment… they had to remove the sweetness from him. So they took the little boy home to rest and worked hard to take care of him.

People from everywhere started hearing the story of this sweet little boy.  They started calling… and asking questions and wanting to know things like… how did it happen? How did he get so sweet? Is he still sweet? Can he still eat sweets?

As the little boys Mom and Dad talked about him and his sweetness and showed pictures of him and his sweetness an amazing thing started to happen.

It was then that the sweet little boy’s magical powers took hold. Almost immediately his sweetness had an incredible effect on individuals. People he’d never met, folks he’d only seen maybe once or twice… started feeling just a wee bit sweeter themselves. This pleasant, lovable, amazing little boy was using his “sweet powers” to make others become just a tiny bit kinder… a wee bit nicer.

At first his Mom refused to believe it. How could her itty bitty little boy have such a big effect on so many people…. But day after day she received calls and messages, notes and stories.  She saw the effect of his magical sweet powers and could not resist… she started to smile more, and she noticed others smiling more. 

And just like that people everywhere started doing nice things and nicer things… random acts of kindness… all because of one sweet boy.

EH is working on the accompanying pictures.... to be posted soon. haha.

 

Pumped up on something… excitement?, nervousness?, anger? rage?

Step 1: The initial creation of da… da… da… da…. DARTH SAUL

Sebulsky and I survived our “introductory” course training on insulin pumps today at UK Children’s Clinic.

I have spent nearly every waking hour researching insulin pumps and reaching out to my “FB support team” for tips, suggestions and what I like to consider “pre-consultation” advice. I posted a few videos on FB about insulin pumps because I’ve had quite a few folks ask me how it will work. We are currently lined up with Medtronic.  For the consumer report lovers out there check the link below.

http://forecast.diabetes.org/files/images/v65n01_Insulin_Pumps.pdf

I personally like the idea of the Omni-pod but we’ve been advised to not go that route because of Saul’s age and situation. After seeing it today I can understand how it might be beneficial for  young adults/adults but would be difficult to use on a toddler… looks like Medtronic it is.

A few things I expected to hear today (and heard)

You still have to do all the work (aka… be a pancreas….. arrrrgggghhh…. every time I hear those words I get angry and want to kick some pancreas.) -By doing all the work that means still gotta carb count, and give doses

It will make your life easier

It will give you better control of your blood sugar

It’s going to be difficult with a toddler (yanking out the tubing, changing insertion sets, sleeping situation, diapers)

Things I didn’t expect to hear (and heard)

It’s going to be very expensive (devices average $6,000 dollars… get ready for the insurance company)

You must keep the device for 4 years (like all technology… there will be upgrades but you are basically locked into a 4 year agreement once you choose a company’s pump)

Don’t “ask” your insurance company if they will approve an insulin pump. Let UK Children’s Clinic “fight” the battle then ask questions later.

Oh… and

I brought the most commonly used devices to the training day… the ones your insurance company will generally agree too.

So… that’s about it for now… gotta pause on the momentum till paper work is faxed, contacts called, insurance approves, etc. etc. I kinda jumped the gun and contacted Medtronic last week… ironically the guy emailed today during our class… I replied with “how can we expedite this process?” I’ve yet to receive a response. Heather our diabetes educator assured me it would be at least 3 weeks before we are trained on the Medtronic pump… so in the meantime… I will continue to read, research and rant.

I’ve yet to actually publish that post I wrote about my dealings with and feelings towards Humana. Maybe it’s because I know I’ll have more to add… maybe it’s that I feel guilty for complaining when I’m actually appreciative of having insurance… I know lots of people who aren’t so lucky. Maybe I just know the post is offensive and deep down I’m afraid I might actually… you… know… “offend” someone.  

I had the post on my mind as I was sitting in the Rite Aide parking lot yesterday (during one of my now weekly visits). Curious… I googled “most expensive chronic illnesses”- guess which one always makes the list?

I’m not sure I can put into words ----- or that you even want to hear the words I have to say---- after reading quotes from Forbes, the CDC and major news companies. 

After all the personal effort I’d put forth into “getting over” the diagnosis and “moving on” with treatments I found myself fevered, fuming and furious… ready to pick up the advocate banner and start waving in everyone’s face… shouting facts and statistics and screaming to anyone who would listen.  

My 17 month old son has a chronic disease that WAS NOT PREVENTABLE.  He will have to deal with this for the rest of his life… pay for it (literally) for the rest of his life.

Seriously… can’t they just come up with another name for Type 2 Diabetes… you know the kind you get that CAN BE PREVENTED…. like when you EAT BETTER FOODS… and LOSE WEIGHT…. The kind you get when you’re an adult and have lived over half your life enjoying  a diet of krispy kremes, twinkies and moon pies… things that my sweet boy will have to avoid.

I cringe every. single. time.  someone tells me they understand what it’s like… you know cause they know someone with diabetes… a grandmother. uncle. their 65 year old Dad.

 I mean… Seriously? Seriously? So you take Metformin, drink diet cokes and check your blood sugar once a day.. Yeah. Sure. Lay it on me… you’re an expert.

My problem with diabetes is that it’s become “common enough” (thanks in large part to Type 2 diabetics) to be passed off as “ahh… not that big a deal”…… that is unless…. you’re the pancreas of a child whose diabetic and YOU deal with the minute by minute management of a sneaky disease that doesn’t always make sense and doesn't always make you look “sick.”

And here I am worried about that offensive post against Humana and I’ve done gone on a tirade over Type 2 diabetics (there goes a portion of my viewing audience)*sigh*

I diverge.  While I could focus on some of my “still suppressed  anger “ I will instead leave you with the best part of my day.  Hearing these three words from parents of kids who’ve all been diagnosed over a year "It Get's Better."

The instant comradely I felt towards these total strangers was… well… strange… but oh so comforting as I watched them give insulin injections with ease and openly express the same genuine fears and concerns for their elementary school age kids that I have for my 17 month old baby.

I won’t lie. I’m still a little upset… I still have the occasional “outburst of anger” but I’m having fewer and fewer "moments of rage" and more and more “flashes of faith” and trusting that “it’ll get better” makes it all A-okay... especially when the advice comes from a sweet 10 year old girl sitting across the table who "know's what it's like."

Pictures! (Just a little Friday "happy")

Lot's has been happening around these parts... so many stories to post... yet so little time. Saul had an "excellent" apt this Wednesday with Dr. Irene who has given us "the go ahead" for an insulin pump. Jeff & I will start the training next week. As the kids nap I've been researching. I'm nervous... excited... and anxious. It will be several intense weeks of learning and adjusting but I'm (we're) ready for the next challenge in this journey.

In case my work friends are wondering... (that is... if they still even remember me... Courtney Grimes?? former librarian???) I've been spending most days pretty much like this....

and occasionally this.... (yeah be jealous of my sweet blue sweats)

But hey... I know I know... ya'll don't want to see pics of me... so I'll give you what you want. 

Little Buddy with that dag on pacifier... This is right before a low... so he's not looking his best... but notice his nicely cut hair... compliments of "Mama Grimes Hair Salon"

We've been investigating.......

and doing a little gardening....

Enjoying afternoon picnic lunches...

"This is the life!"



Ooooorrrrrr.... so it might seem. It's not all rosy... nights are back to being rough... Yesterday was marked with all-day "high's" which meant lotsa BG & ketone checks... 6:30 last night I opened a pack of syringes to give his dinner bolus and "CRAP!!! THEY GAVE ME WRONG NEEEEDDDLLLEESS!" Every time Solly leaves the house he drops... last night we hit a low of 43 (this was after freak out trip to Rite Aide for new RX). But... let's focus on the "good stuff" the "memory makers" the moments that are supposed to last a life time I've captured in my mind.







Are you looking for love? (No Spoilers)

I have had, have, and will continue to have, relationships with books… and by relationships…  I mean deep, passionate, love affairs akin to that you experience with another human being.

There are those novels like “To Kill A Mockingbird” which I consider to be my partner for life-a book for which I named my first born…. “East of Eden” my guidance and parental support…. “Life of Pi” and “The Alchemist” my spiritual awakenings….  my lists are endless.

As you can see I categorize those which make “the cut” into special files.  I start with this explanation because I’ve spent the past 48 hours contemplating which mental folder to use for my latest read.

It’s become a running joke with Jeff and Mom (I allow them their chuckles) to make fun of me whenever I say “It’s my favorite” or “It’s in my top 10.” Apparently I have difficulty making cuts and I tend to change the criteria for getting cut on a pretty consistent basis.

Typically my all time favorite books are based on the length of time it takes me to read them… a mathematical equation created by my own brilliant mind…

E=(book) X p(#of pages) /time +(c) (creativity of title) -# of symbols =

okay… I give up. (This is why I majored in Liberal Arts not Math or Science which I do know as a fact … equates to a life of poverty… doesn’t take a math genius to figure that one out).

Sure “East of Eden” took longer than a week (that sucka is a chunk…. and I soaked in every single word and phrase… reading and then re-reading… so my equation doesn’t really work for this one). But generally books that I love I’ve read in days… the good ones…  in hours.

Which brings me to my latest love affair from one of my favorite authors-- John Green’s “The Fault in Our Stars.” I think I beat my all time reading record with this book. I’m pretty sure I read it in minutes… though ironically I’ve spent hours contemplating its contents. -I forgot to factor that in my equation….  What I like to call “the reflection factor” how long I spend thinking about the substance of a book.

Okay while I am a librarian, I am by no means a literary critic… so you can take this post for what it’s worth.  I will say however, this book has risen to the ranks of top 10 and I would currently classify it as my all time favorite love story…. Oh and by the way… I hate love stories… purposely do not read them… don’t offer me any of that Nicholas Sparks crap… just. can’t. do. it. This book is different.

For those of you unfamiliar with John Green – he writes Young Adult Fiction. I (pre)dreaded that class when finishing my LMS degree… who knew it would end up being my favorite and offer up a string of new relationships.

“The Fault in Our Stars” is more than a love story… it’s a “life” story. Tackling terminal illness, loyalty of love, the meaning of life… the concept of death… it’s pretty heavy stuff… deep… reflective, contemplative “stuff” yet it’s written for young adults…. for today’s youth… in the grittiest, most realistic, tragic sense.

I’ll admit… I cried…. a lot. I cried because (though I’m not dying from cancer)… I relate to Hazel Lancaster- even if I’m pretty sure I view myself as Augustus Waters… or maybe I long to be him and recognize deep down I’m really more of a Hazel. I know I’m an experience away from being Peter Van Houten… and maybe most  prophetic… I now experience the unconditional, unwavering love, loyalty and suffering that parents like Mrs. and Mr. Lancaster undergo.

If I’ve sparked your curiosity… good go get the book. If you need “real evidence” read reviews- they’ve all been positive.  I promise you … no matter what equation you use for determining whether a book is “good” or “bad,” no matter whether or not it makes your top 10 list…. the book will make you think… and really isn’t that what reading a good book should be all about?