Sometimes I wonder.

During a daily twitter check, I stumbled across a girls you-tube video about non-diabetics supporting those with diabetes. She looks to be in her mid-twenties and she offers advice (I'll paraphrase) "don't nag" "ask how to help" "be patient." I gave it a re-tweet and "liked" on Facebook and now I'm sitting here thinking about what she said.

I've actually been thinking alot this morning... mainly about the future - Saul's - and... mine.

I thought to myself... man... I wouldn't want to be his pre-school or Kindergarten teacher. I mean... come on... if you think those folks have it easy... well... go observe some classrooms. I keep thinking... if his BG doesn't get regulated and it seriously continues to be a 24-7 managment of highs and lows what in the world are we going to do with him? Where will we send him? I'm not going to send him to a classroom with 26 other 5 year olds. What if he's like his Dad... and just "deals with things" never tells the teacher when he's feeling high or low cause he doesn't want to bother anybody or get in trouble. What happens when other people (lots of other people) witness his crazy personality changes... "hulking out" at high numbers and slipping into a quiet lethargic state during lows.

Will he be proud to show off his pump and monitor to all the kids on the playground. Will he be embarrassed and hide his pump and tubing so no one sees. Will he be sneaky and sometimes use diabetes as a means to go to the bathrrom or sneak candy who shouldn't eat?

How much should I be involved? Do I let him advocate for himself starting at a young age? Should I stay on him constantly about taking care of himself. Should I expect daily reports when I'm away from him?

I'm not a coddler. In so many ways I'm a hands-off kinda Mom... but how do I balance supporting him- teaching him- loving him without letting the "Big D" get in the way of a normal mom-son parenting realationship.

The "rough patch" that started about a week or so ago continues. The 24 hour My Sentry reading is ridiculous. I can't help but feel guilty like it's my fault... like maybe I'm not counting carbs correctly... maybe I'm waiting to late to bolus... and I can't help but wonder... will he ever feel guilty? Feel guilty for eating one too many cupcakes... feel guilty for being "difficult"... feel guilty for causing others to worry, stay up late, needing help... or worse... will anyone else ever worry? Will his teachers care.... or be frustreated that they have to deal with him... dread getting "that one."

How do I raise him to let the guilt go... to just accept it and move on. How do I raise him to laugh things off and find the humor in the cards we are dealt? Maybe I need to start with myself.

2.5 years and still counting

15 months + 11 months + 4 months = 30 months = 2 and a ½ years (and counting….)

My friend Stephany wrote a comment on FB yesterday “thanks for the pump.”

I read it twice before I figured out she wasn’t talking “insulin.”

I laughed and thought to myself… my life has been nothing but pumps since the day Harper entered this world.

I always knew I would breastfeed. All the women in my life did it… women I worked with and worked for... I always wanted to do it… for me… for the kids…

And, I also knew, that as a working Mom, pumping would become part of my daily routine.

-          The daily 4 am alarm. Locking myself in the wiring closet at work. Hiding in bathroom stalls at conferences. Pumping and dumping. The special car adaptor that could possibly have been the greatest purchase of my life. Having to get up and leave in the middle of dinners-movies-conversations. The never-ever-ever-ending “EerrKk”  “EerrKk” “EerrKk” “EerrKk.”

I’ve learned a lot of lessons about life, myself, sacrifice, heartache, and joy in the 2 and ½ years I’ve dealt with pumps –breast and now insulin.

Possibly… the most poignant is that both are life-saving devices… which assist/ed in accuracy, efficiency and delivery…  yet… they are still just devices.

It takes commitment, time, sacrifice and experience… It takes an operator. A button-pusher. A controller. A human. It takes someone who is willing to step up to the plate and do the job… day in… and day out... even when you don't really want too...  

It takes love.

I include a disclosure.

I would never say breast is better than bottle or injections are better than pumps.  I know… because I’ve experienced it all. We each face different obstacles and challenges and in the end we all must find peace and happiness in the choices we make – what works for us – what’s best for us. All of us-mothers (and fathers) out there who love our children more than ourselves sacrifice in some way in the name of love.

Making the Grade

So I jokingly mentioned this on FB the other day… and sorry to all you other little T-1 kiddos out there…

but… 

Saul Sebulsky is Dr. Irene’s favorite patient. I know, because she said so…. like at least 3 times… and told him to keep it on the DL so the other kids don’t get jealous.

I have to say… I can’t blame her. Saul rocked the UK Ped’s Endo office Wednesday morning. Other than a tiny crying fit when attempting blood pressure he was pretty much the greatest, most hilarious little dude ever. He charmed “Bob” the med school student with his causal nod when asked “Is it okay for me to listen to your chest?” then had everyone in the room in tears laughing when Bob placed the stethoscope to his chest and Saul with a grin says “Ahhh…. Coooool.”  By the time we left he also had the nurse wrapped around his little finger.  He nearly passed out from excitement shouting  “CAAAAARRRRRSSSSS!!!!!” in her ear as he pointed to the Mater sticker on her ID badge while she was taking vitals. And then… as if in a final “show em up… these other kids ain’t got crap on me” gesture he really blew Dr. Irene 5 kisses and gave her an air high 5 when she told him bye.

I know you think I’m kidding… but I swear… all accounts are accurate. Ask Sebulsky.

It’s no wonder he left with extra stickers and a toy. I left thinking… dag on… we got all these folks fooled.

All in all the entire experience was quiet pleasant. I had psyched myself up for weeks stressing over A1C and yo-yo-ing BG levels. When Dr. Irene told me his A1C had actually decreased I nearly let “holy &#%@” slip out. Needless to say, she was extremely pleased with progress and his overall growth and development.

I’m not sure if she sensed my need for feedback, remembered my life as a former teacher, or was generally just pleased… but she wrote a big ole A+ on his discharge papers and provided me with plenty of positive praise.

I tried to suppress the smile that was splitting my face in half...  tried to minimize the ultimate feeling of joy and success as we walked out the door… reminded myself… this  is only the 2^nd of what will be a lifetime of A1C’s… so don’t get all cocky… and don’t take these numbers to heart…

But the truth is - it’s hard not too.

It’s hard to ever know for sure that he’s really okay. It’s difficult when you don’t feel like you’ve got things under control- even if you really do. And even though I force myself to not think about the crazy stuff… like the effects this has on cognitive development, amputations, or kidney dialysis… It all creeps up when we go in for A1C checks.

The first thing I’d always do when receiving a syllabus in college was look at the grade breakdown. I’d whip out a calculator and figure out exactly what percent I’d have to make on specific assignments to get an A or B (okay… sometimes a C as an undergrad). When possible I’d always try to “stack” grades… like try to earn as many points on easy assignments in case I’d do poorly on future assignments or difficult exams.

I wish got a syllabus with diabetes. I wish I knew the breakdown of grades for when Saul is an adult. I like to think that I’m stacking as many points as possible now… while he’s young… while I attempt to control him so that when difficult times come… he’ll still pass and be okay.

I tried explaining this to him over lunch today… but it’s often difficult to hold a discussion of this nature with a 20 month old. I think he mighta got what I was saying cause I did get an air high 5 and “ah cool” in response.

Little Buddy waiting on Dr. Irene

Stickers & toy for Saul. A+ for Grimes & Sebulsky

Will absence make my heart grow fonder?

This post makes about as much sense as a 3 am hypoglycemic episode.

No surprise there is a direct correlation between Saul’s fluctuating BG numbers and my unpredictable emotional outbursts. Yesterday we were flying high… today I’m slumping by. I have an animated adjective to match every rising and falling BG level.

Writing is my insulin. I’ll inject you with my words.

Sadness. Disappointment. Frustration. Judged. Poor. Incapable. Wish-washy.  Embarrassed. Let-down. Left-out. Upset. Relieved. Blessed. Happy. Appreciative. Excited. Nervous. Anxious. Curious. Hopeful. Doubtful. Wondering. Optimistic.

I confronted my apprehensions today and finally communicated my intent. “I’m requesting a year’s leave of absence” and as I said it… I felt myself melting into a puddle of emotional gloop, questioning myself immediately even though the decision had been made a week ago.

The fear of reality hit hard once the announcement was made.

Maybe it’s self absorption… maybe it’s a coping mechanism… maybe it’s neither… but I feel like surely someone out there might care or understand the emotional mess I find myself in.

Jeff say’s people expect it- they figure I’ll stay home with Saul for a little while longer till he’s a little older - a little more stable… a little bit better at communicating.

It still feels weird.

It’s hard shifting identities… it’s even more of a challenge adjusting to life on a one salary income.

But….

This decision might just be the best decision we’ve ever made and this year could turn out to be the best year of our lives. A one-year-to-date-follow-up-post will prove me right or wrong… either way I know this much… I’ll be spending each and every day with my sweet boy and for that opportunity I’m thankful.

The title says it all.

No Sebulsky here means crutch is gone... and forced to learn on my own. Yuck. I'm the one with the shirt that reads "DOES NOT FOLLOW DIRECTIONS WELL" (especially when it comes to stupid technical manuals)



Sorry for the re-print only pic I have of new CGM and this was right after insertion before transmitter was on. It's not as bad as it looks. Well... I'm not the one with the cannula in my stomach...



What I should be doing instead of this.

Underwhelmed by me Overwhelmed

I could post the title and call it a day.

I blame Christian Grey, lack of sleep, EH’s sneaky attempt to hide candy through the house, my lack of good parenting for the past 2 days (again… Mr. Grey), dealing with CGM, dealing with CGM setting off alarms every blessed second, Saul’s BG’s on a roller coaster of ridiculous high’s and lows like I’ve not seen in weeks which in turn sets off the stupid CGM alarm seriously… EVERY BLESSED SECOND (again… EH & the candy stash to blame? Mr. Grey taking my attention away from locating unknown candy stash?), endless to-do lists, learning MySentry, handling my feelings of ultimate guilt for not being in the library the last week of school, crying over poor Saul’s marred body – his sad looking butt covered in bruises and raised spots- the tips of his fingers dotted in dark brown spots from the 20 some BG checks a day, mentally beating myself up when I don’t have the house spotless and dinner prepared on time each night like clockwork, the laundry, the dishes, the Doctors apts, the constant Pharmacy refill calls….

See I told you this post was underwhelming.

Blah.

Ha.

I promise something better... something funnier…. something picture-ery soon.

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.

Living a life in increments of minutes

I guess Jeff said it best the other day.  “We are living in increments of minutes” “It’s like our life revolves around 15 minutes.”

So many people have called/text/messaged/FB’d/asking “How is Saul?” and “Is Saul feeling better?” I reply with the same exact response every time “We had a few really rough weeks… but he seems to be doing better.”

The truth is… when most folks see him or see the most recent pictures of him they say “Saul looks great” or “Looks like he’s feeling a whole lot better” and it’s true. He is starting to “look” and “act” like our old Saul the problem… and what I don’t say… is that it’s a full time, 24 hour, non-stop mission to keep him “looking and feeling good.”

We literally are living minute by minute.  In a matter of what seems like seconds his blood sugar will spike or plummet by the hundreds… and when it does… it’s bad.  If he runs too much… it drops… if he doesn’t eat all of a snack… it drops… if we give him one too many carbs… it spikes. 

It is a constant chore of monitoring behavior, environment, food intake, activities and most importantly his glucose levels.  It’s a job I’m not sure anyone is qualified to do… yet… someone has too. Right now that someone is me... well (lest I not give credit where credit is due… Mom and Jeff… especially Mom) have had equal share in the responsibilities.

Last night I went out to eat with some good friends…. It was a breath of fresh air getting out of the house and away from everything for just a little while. It really made me miss work, long to see folks and chat about “stuff.” As Kim was driving me home I thought to myself… It won’t be long before I’m back in the groove… back to the same ole same ole routine of planning, and meetings, ordering… books and kids… and then…  in a matter of minutes…  I left the bliss of “fresh air” and walked back into reality… back to living a life in increments of minutes… facing a stressed Mom, frustrated Jeff… wild Harper and sick Saul… BG levels… spiking… 418.

*sigh* “It was fun while it lasted.”

Both Jeff and Mom will read this then confront me with “you don’t think we can take care of him the way you can or you think it was our fault” and that’s not what I’m saying… I observe the daily struggle of handling his ups and downs… but I’m not sure the rest of the world does… or that they understand what we’ve been doing every minute of every day since January 28^th.

The hardest part of diabetes is not the continuous insulin injections or glucose checks- it’s the monotonous day to day - night to night battle of “monitoring.” Life is now a regimented routine of checks, counts, scales and data analysis- any and all factors can affect the ultimate outcome… including me going out for a few hours with friends.

The dreaded post... coming clean about things.

The dreaded post. The post I’ve had in my head since the day we came home from the hospital. The post I’ve held off writing because…

A.      I’ve been up to my eyeballs in puke and poop the past 48 hours.

B.      I’ve made no definite decision.

C.      I’m actually somewhat embarrassed to complain about my 1^st world problem to the internet - especially when I know I’ll have folks comment things like “so sorry” and “understand” when really they want to type things like “suck it up” and “just deal.”

Honestly, the thought of staying home with Saul never crossed my mind. Naively, I assumed I’d be back to work, “back in the swing of things” and *ahem* “back to normal” by this point and time. I’m not really sure what I expected… I guess that everything would be the same as before with the exception of a few glucose checks and insulin shots.  

Except. Here. I. Am.  

I vastly underestimated the amount of work this whole process was/is going to be. Currently it’s a full time job. Sadly… it’s a job I’m sharing with Mom right now because she has selflessly offered to “do whatever” “for “however long.”

I am using all of my sick and emergency days to get me to Feb. 22^nd at which point and time I will have to decide whether or not to take FMLA … and how much… 2 weeks?… 4 weeks?… 12 weeks?

I hear the clock ticking. I feel the pressure of unfinished jobs at work.  I look at the calendar and realize that March 1^st will be here soon – another book fair, Title 1 night, all the program review work, SBDM meetings…. and then… all together I stop thinking, because that minute of thought is over…  and I’m now dealing with a screaming, inconsolable 16 month old baby… frantically trying to problem solve and “just deal.” “Is he too high? Is he too low? Did I give him too much insulin? Did you measure out the carbs or did I?” “Did you throw away that package??? It had all the information on it!” “Harper did you give that to him? Where did he get that?”…………  And that’s just what a matter of 5 minutes is like…….

I can’t even imagine being capable of functioning at work – had I gone this week. On average I am getting about 2-3 hours of sleep each night, some nights better … other nights (like last) worse than when he was an infant… hanging out on top of the dryer… while I cried my eyeballs out in the other room begging him to PPPLLLEEEEAAAAASSSEEEEEEEE juussstttt gggggooooo ttttoooooo sssssslllllleeeeeepppppp!!!!!!!!!!

I get up at least 2 times a night to do glucose checks. He’s been getting up nearly every hour on the hour to just cry… and cry… and cry some more and his only comfort comes in the form of his arms wrapped around my neck with his head nestled into my shoulder while I… walk, rock, sit or lay. It’s an honor… yet exhausting.

See the thing is… I’m in a state of ultimate guilt. I think nearly every single woman who’s ever had a baby and then gone back to work 6… 12… 18… 150 weeks later… has felt this exact same feeling and asked herself these exact same questions.

Should I stay home?

Should I go back to work?

Isn’t my child my responsibility?

Can a babysitter do it as good as me?

Am I missing the best years of my kids’ lives?

Can I afford to not work?

Are the sacrifices of staying at home… worth it?

Will I miss out on job opportunities?

The thing is… I like my job. The thing is… I like my kids.

I like having (even what little it may be) contact with other adults and professionals, and you know… the whole “getting paid part” isn’t half bad either. Sure I’ve got a couple leads on possible childcare scenarios for Saul. Sure… Mom could theoretically stay until I finish in May… but would those choices be best for Saul? If I were to stay home what about Harper? Would the sacrifices she’d have to make be fair? No more ballet? Forget about pre-school next year. No more weekend trips or spring break vacation… blah and blah and more blah to deal with.

And so my internal war continues to wage, I realize I’m not going to come off the battle field without wounds, injuries and heartbreak.

I seek comfort in knowing, however, that whichever side wins, I’ll at least have other soldiers to help me through… folks who’ve fought the same fight… who are fighting the same fight… and can help me adjust to the aftermath.  

Post Script. 5 minutes before I went to push the publish button for this post- I suffered my first “freak-out” and jumped the gun by calling the Doctor on call. Saul’s numbers kept dropping… even after we did the 15-15 rule… every little choke on a sip of juice freaked me out… any minute I was ready to bust out the glucagon and call 911… luckily we got it up and I settled down and even managed to get a few chuckles out as we watched Saul do a little “happy dance.” Caffeine is the equivalent of crack to a 16 month old.