Bizarre. Intuition? Thank you ole Bop.

So I just woke up from a good deep sleep.... I'm lying in bed and suddenly get this gut-wrenching feeling that Saul's ridiculously extra-long 23 inch tubing is tangled and kinked. As I am getting out of bed to check... he starts crying.

I heard his pump before I saw it (never a good sign... especially when CGM is not involved).

By the time I reached the crib Saul was cursing his bop bop. A sight I won't too soon forget... frantically scouring the sheets with one hand while banging his pillow in frustration with the other.

I loathe that pacifier. I don't hide my hate for Bop bop. I secretly plot the end of his existence on a daily basis... and still.... we continue to be locked together in a tarnished love hate relationship.

But...

I can't help but think....

Maybe. Just maybe... our mutual love for sweet little buddy allowed him to take the plunge... propelled him on this dangerous journey... enabled him to leave the comfort and security of home... helped him to navigate through the giant sea of sheets and blankets and then finally gave him the courage to dive from the edge of the crib cliff... a for sure end... to forever be lost behind the dangling bed skirt.... never to be found... trapped behind the floor length curtains....




I'm back in bed. Low reservoir... 0.00 units of insulin left. Site changed. Saul changed. The screams and cries are over.... I should close my eyes... sleep a little before the dreaded 3:00 a.m BG check....

I just can't get that ole bop bop outta my head...


Thank you over-rated, cheap plastic pacifying device once again for coming to my rescue at a time of need... I suppose I'll continue our relationship a bit longer...

But.....

You're outta here come Oct 1.

Re-D-fine

If ten years ago you would have told me, that one day I’d be sitting here…  as a stay at home mom… sporting a mini-van…  and finding absolute joy in activities like steam mopping, buying new laundry detergent,  and caulking my sink – I would have slapped you in the face, called you a liar and burst into laughter.  

Never say never… right? If. I. only. had. a. dollar. every. single. time.  my mother has used that phrase.

It’s not that I am going to miss my specific job and title so much… as it is the idea of actually working. The getting up, getting ready, getting dressed…  that kinda stuff. Not that I won’t actually be working… never, ever, ever (even with glorious summer days “off” spent with my kids) EVER…. did I anticipate staying at home being SO.MUCH.WORK.  Most days it feels like it’s twice as much as when I was working outside the home. And I know… that just brought a chuckle, a snide whispered under the breath comment, possibly even a mouthed foul word or two from all my friends who continue to fight on two fronts… continue to balance that heavy load of “your job” vs. “your family.”

It’s going to be different… it’s already different…. but a good kinda different. 

Discussing difficult D’s

Doctors and counselors will tell you there is a process to grieving- a step by step method that allows one the ability to mentally and emotionally “let go.”

There are some things I remember from 5 years ago that are as plain as day. The dark, deep days of endless depression, the hours of crying, the sadness in Jeff’s eyes, the physical pain, the rage, envy and hatred I secretly felt towards any woman (who by my standard) was incapable of caring for one child – let alone the 3 or 4 I would see them dragging into a store, the knot in my stomach that would tighten when I’d glance at a magazine cover of celebrity pregnancies, the unexplainable sadness and awkward silence that would fill the room when a diaper commercial would be sandwiched between episodes of Days of Our Lives and the Nightly News.  

Each of us at some point in our lives will be faced with (an) insurmountable obstacle(s) to overcome.  Tonight I am reminded of my own personal struggle because tomorrow will be the 5 year mark. 

I’ve only shared my story with women who’ve experienced similar losses. While there are some things I remember… a lot of what happened during those days is marred with confusion, blame, misunderstanding and my attempt to blank things out as they occurred.

It was my first pregnancy. I didn’t know about that whole “don’t say anything till the second trimester” My Dr. refused to do a DNC. I was 30. I ended up in the emergency room. I should have sought counseling. I questioned God. It was the most physically painful experience of my life. I will forever be grateful it happened in the summer. My two Aunts and Mom came and spent a week with me- they painted my house and re-decorated… and although I sometimes look at the wall color and pictures and think…  "hmm…” it also reminds me of the love of family. I blamed myself. Sweet Daisy girl was by my side. I spent a week on the couch watching episodes of LOST in complete darkness. I shut Jeff out. I laid in bed at night scouring countless websites. I developed anxiety. I felt regret. I hated anyone and everyone who said “it’s in God’s hands” “it was meant to be” “things happen for a reason.” I promised to always remember.

Hardly anyone (except Jeff) would have ever guessed I was traumatized by the experience. In public, with family, around friends I refused to show any sign of sadness, anger, frustration or regret... though inside I was grieving.

I realize now that most anyone and everyone ended up being right.

And although I am fortunate to be blessed with two healthy, smart, hilarious, awesome kids – tomorrow I will take a minute… I will step away from them- away from the toys, the singing, the playing, the incessant noise and I will sit in silence- alone – if only for a minute… to grieve the loss of one of two miscarriages I’ve experienced… both very different… but equally sad.

I will remember. I will let go. I will move on.

Traveling D Style: Our first "BIG" Trip since diagnosis

The planning prelude was, for me, the most difficult part of the process. Because this was our my first big trip with Saul away from home... and Dr.’s - I spent a great deal of time preparing for every possible glitch and malfunction.

Loaded. I {heart} the mini-van for many reasons. I have enough space to live out of the back of the sucka for a good month or two. BTW- 4 huggies boxes used as "carriers" during this trip. On my to do list is covering them with paper or fabric... recycling at its finest. lol.

Those of you who know me well- know I have never been “a planner.” Organization, efficiency and preparedness really never entered my vocabulary until Saul’s diagnosis (ironic that I would end up in a profession known for these coveted skills…lol).

I started by making lists which included most importantly *diabetic medical supplies and insulin as well emergency 15-carb items for treating lows (Elmo juices, skittles and of course Glucagon), low-carb snacks that could take heat and travel well (bags upon bags of pork rinds, peanuts, peanut butter, gold-fish) and of course clothing, swimming gear, car-ride toy & book bins, along with all the other random items we might need... bikes... helmets... snowsuits...  

These were "emergency" (not necessarily diabetic emergency... lol) snacks that rode up front with me.

I made sure to check-and double check all prescriptions to make sure we had enough to last and wouldn’t run out over the course of a possible 10-15 day stay.

I also planned for the absolute worst which would be a pump malfunction in which case we would have to go back to insulin injections. I made sure we took enough humalog AND lantus (long-lasting insulin) which he ONLY uses if injecting… just in case.

All of Saul's diabetic "stuff"

Because insulin must be refrigerated… especially during heat waves and long distances in the car I used my old Medela breast milk storage cooler which worked wonders. Luckily our mini-van has a built in cooler that’s come in handy quite a few times when traveling with refrigerated medications.

Good ole Medela breastmilk cooler bag for insulin. Nothing like a repurposed item.

*I also checked to see what hospitals would be covered by our insurance if, in case we did have an emergency that would warrant their use.  Knowing our luck and the Grimes curse… I knew it would come in handy… which in fact –unfortunately- it did.

Poor Litte Buddy leaving Urgent Care

I physically carry the kids insurance and social security cards with me at all times (I also have them in picture form on my I-phone) in case I would ever need them.

Due to all the frustrations we’ve had using the CGM I decided Saul would NOT wear it during the trip (though I packed it and all the supplies – including the MySentry) just in case I changed my mind or his BG levels started trending.

An hour before we left for WV I got an email from UK with the biggest changes to date- which worried me a little since Dr. Irene changed his basal rates, insulin to carb ratios AND target range… any little tweak or minor adjustment can really “shake things up” so the idea of that possibility - coupled with a 4.5 hour drive by myself - AND during a crazy heat wave of 100 degree weather – was a bit frightening.

My parents farm is (what I consider to be) “a pretty remote” locale – a fur piece - from major groceries, hospitals and pharmacies... so making sure we were fully prepared (especially with the number of power outages experienced in that area) was crucial.

Traveling with young ones (whether or not they have medical issues) can be difficult. Schedules are wacky, sleeping arrangements are different, car rides are looooooonnnng and often boring (even when you’re equipped with DVD’s, CD’s, I-Pads, toys and books) so of course I had my fair share of all that. 

I tried to stick to our routine eating schedule as much as possible –knowing that verging from it could really throw off Saul’s numbers. I made sure to pack enough food with me at all times he’d have something substantial to tide him over.

Speaking of food... this pic was from our special Bob Evans dinner with Grandma. Saul ate pancakes, eggs, sausage AND birthday cake and still had great numbers.... and that was with me "guessing" carbs.

Overall, the trip was a major success and allowed me to “overcome” the fear of traveling solo –long distance with him.

Sure- we ended up at the local Urgent Care with burns to all 10 finger pads from a freakishly hot plastic slide at the playground..............

The pictures just don't do it justice. They looked awful... and he was pitiful... and it meant we had to do all BG checks on the toes... which he HATES.

Sure he had a few readings in the 400-500s from being dehydrated from the heat (all of the 15 min he spent in it)...........

Saul (like most everyone else in the world) does NOT enjoy a heat index of 108

And sure…. We had our share of the dreaded lows… with one hypo episode (nothing a few packs of skittles didn’t cure)................

Skittles... my new best friend.

Overall, however, despite a few minor "obstacles" I’d give our trip a 10 out of 10 rating.... and I think Saul would agree.

If you'd like to see lots and lots of pictures from our trip - check out Sebulsky's flickr site and please ignore the TERRIBLE pictures of me at the Clay Center and the fact that I'm bascially wearing the same thing every day. lol.

Country Roads take me

I'd like to say its gotten easier, less difficult and more routine- but if I did I'd be lying. Unfortunately, for me, each geographical transition becomes more and more emotionally exhausting as the years go by.

So many others have written about their own shared experience (much more eloquently than I ever could) that I dare attempt to even expose my scarred and scattered thoughts into simple sentence form.

I've rehearsed different analogies in my head... relived AP Human Geography lectures I'd given to High School seniors about the cultural and geographical impact of "place." Yet I still find I'm at a loss for words and understanding when trying to untangle from the emotional web I get caught in when "going home."

Sometimes I liken my relationship with this "place" to that of an ex-friend... distant, past, "over" yet still somehow strangely connected on a weirdly removed level.

How & why do people fall in and out of love with "a place?"

When my life is in sync I'm satisfied with the miles between us but when things get tough I always long for home.

There have been times throughout this trip when I'd feel that I truly have "gotten above my raising" but there've also been times I've felt so amongst my "kin" it makes me question why I'd ever want to leave.

The realization that my kids are not and will not be "West Virginian" is what probably hurts the most. I tell myself that maybe kids their age in WV won't hold on to a sense of place and people the way all other generations of West Virginians have... but deep down inside I know they will.... we always do... it's what happens when you're born and raised in this wild and wonderful "place."

I'll pack up the kids tomorrow and drive back to Central Kentucky... back home... to bluegrass and horses and bourbon and leave behind my beloved mountains and all their precious contents... including family.

And even though I'm hours away... one state away... you can count the counties away... I'll leave behind a life to return to another and question the validity of both for the entire 2 hours I'm driving in the car.

I'll blame. I'll justify. I'll accept. I'll leave.

And then I will miss...

It's what all of us WV expatriates do.

Don't worry... you got this girl.

I have written and re-written and written and re-written this post at least 8 times.

I type. I Read. I Delete. The thing is... when I see the words on the screen they look so permanent... so damaging… and so not how I want the story to end.

Some people call it serendipity, some folks call it coincidence… maybe it was just chance…

But during one of the 8 times I was in writing-rewriting mode, I stumbled across this read on another blog.

In some ways- reading this article only complicated my thoughts. It’s part of the reason why I’ve resisted writing about her, and the recent changes in behavior and attitude… dare I use the word “regression.”

It's just that... she’s always been “so good” “so bright” and “so easy” (I suppose I often take all that for granted).

On the flip side however, she's also always been “independent” “stubborn” and “strong-minded.” It's not like I didn’t see these difficult days ahead.

But really... if 4 is like this… then how will we I ever survive 14?

Parenting a diabetic toddler is challenging… but at least there are guidelines, management tools and support groups.  I got nothing when it comes to Harper.

At my wits end today… I escaped to the bathroom for a few glorious seconds of uninterrupted quiet. I thought to myself… how in the world did I end up with this complex, zealous, CRAZY- awesome but exhausting kid?

Then I looked in the mirror.

(The “awesome” comes from Dad… for everything else I’ll accept responsibility).