Live Everyday Amid Purpose

Taking a great leap of faith forward

I am just pretentious enough to think people out there actually read these things and will “get” the cleverness of this title. Ha. Amuse me. Please! I am desperately attempting to find ways of balancing the constant background drone and content of the Disney Channel.  

Because of my (previous) hatred of the month I’d never given much thought to the uniqueness of Feb. 29^th. It’s always been just a day I’ve lived through (well lived through every four years that is). Today, however, is different. Today I find myself pondering the significance that one day can have.

Life is changed not in years but in small increments of time. minutes- hours- days.

“You have cancer.”

“I do!”

“He’s gone…..”

“It’s a girl!!”

Sure I’d like to believe that given recent circumstances I could tell everyone that I’m going to spend the rest of my life appreciating these minutes… the small things… enjoying life… living each day to its fullest… but come on- I know myself too well. 

No doubt I go through periods of proclaiming change… but like most folks… while sincere, it’s short-lived. Cliché and tired yet still true… I rarely take time to “stop and smell the flowers.” I’m too busy… bills to pay, kids to feed, meetings to make…. I’m too busy…. We’re all too busy….. “leaping” not “living.”

This Feb 29^th I challenge myself and you as well to “live” not “leap.” Live today… if only just today… doing something. fun. amazing. inspiring. Do something for someone else…. someone you love… or better yet… someone you don’t…..  Hey, this day won’t happen again for another 4 years- might as well make it count.

Kill you or make you stronger?

That which does not…. *YEAH RIGHT!*

I gotta say… it’s getting down right ridiculous up in this joint.  While my “coping” skills have vastly improved in the near 1 month post verdict (in large part thanks to "Kangaroo Juice" (EH's name for my nightly "wine dose" of cheap Yellow Tail)…. Saul’s BG levels in fact, have not. Unfortunately to put his levels in modern-everyday slang “they suck.”

Our first outing since diagnosis, which I decided to expose to the world via Face book was… well… umm… not good. Thank God Jeff and I managed in our 20 minute stay to order long-awaited, deliciously hot and steaming, over-priced Starbucks beverages before all hell broke loose… otherwise… those in the Lexington area might have ended up watching me later on Lex 18.

 *!*!*! Breaking News*!*!*!*! Crazy lady armed with BD syringes and lancing device holds up Hamburg Barnes & Noble Starbucks chick... embarrassed husband waits patiently with lethargic toddler strung across his back. 

I won’t lie… it was a little scary (not the aforementioned hypothetical) but Saul’s actual hypoglycemic episode. Looking back (though I’m sure it will sound ridiculous to some) – I wish I’d videoed the whole thing. I think I may start doing this - less for dramatic “show” and more for medical documentation. 

Needless to say, my confidence in returning to work has been slightly shaken these past few days.  The wee teeny tiny bit of self-assurance I developed the previous week (in my ability to care for him) has also been crushed.  I spent hours this morning while Saul was napping analyzing his data… When are his highs? When are his lows? Is he playing too hard after dinner? Did I forget a nighttime snack? Did I give him too many carbs? Is there something wrong with his Humalog? Am I not administering the shots right? What’s the best injection site… arm? leg? butt?

I have become obsessed with finding an answer to an ever changing question. Death by diabetic obsession… not the way I thought I’d leave this world.

<Meanwhile>

In the midst of my "strength training” this morning while phoning UK, texting our Ped, researching Lantus and problem solving how to use our latest ketone monitor.... I got a phone call from Mom.

It pretty much went like this.

 Mom: “Hey”

Me: “Hey”

Mom: “How is everything”

Me: “.......Sigh…... Umm… we’re okay… I’m trying to get in touch with UK.”

Mom: “.......Weeeellllll…...... I was in the bathroom and Harper was playing in the living room…... and…...... weeeeeeelllllllll…..... we’ve been playing with beads…..... and....….w-”

*Interruption by Me*

Me: “Yeah.... what's wrong?”

Mom: “Well… I think I’m going to have to take her somewhere… like to a Dr...... cause she just came in and told me she's got one stuck up her nose.... A red one.... She says she only has a red one.... I’ve tried to find it but it’s up there preeettttty far….... She swears there’s only one.”

Me: “Is she breathing?”

Mom: “Oh yeah”

Me: “Ahhhh… let’s just leave it there. Tell her to put another one in the other nostril to even out her breathing.”

Okay… Okay you’re right…. that last part was added for dramatic effect…. for audience appreciation... ya'll need a little humor.

Anyway… what was I saying?  "That which does not kill you…"

Half an hour after phoning Humana to find out the closest in-network Urgent Treatment Center in the Huntington WV-Tri-state area..... and.... interrupting Jeff at work..... while....... adding a new tab to my 500 existing Google search tabs... (this time Googling) “what to do when kid shoves crap up their nose”............................. I get a pic from Mom.

With a message.

“Got it out”

 If I’d had more than 2 hours of sleep last night I might have slightly been concerned about the primitive tools blatantly lying by that bad bead…. Alas… I figured if Mom had to carve a bit of the nostril out with a butter knife or poke the bead down the back of her throat with that ball point pen... we'd at least have a pretty good story to share at the next family reunion.

Post script.

No. worries. Mom got her to sneeze it out... no nostrils were hurt in the production of the event.

P.S.S.

I asked Mom to put Harper on the phone after all of the shenanigans. I asked “Why?!?!?! … Why did you stick that bead up your nose!?!?!?” Her reply: “Cause I wanted too.” I asked... “Harper WHY?!?!?! Why would you do that?!?!?!” The response I got in a tone I'm not sure I appreciated..... “MOOOOMMM!!!!! I WAS TRYING TO DO AN EXPERIMENT!!!!”

"That which does not kill you.... Right?"

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.

“Prayed for” A Love Story: Part I

What’s in a name?

I dreamt about you long before you ever made your presence known… before you were a speck, a blob, a wiggly squiggle, my baby boy, my little buddy… my little man. I prayed for you. I wanted you. I asked God for you… (hence the explanation of your name).

When I saw you there for the first time on the ultrasound monitor I crossed both sets of fingers and quietly rubbed my belly under the white paper smock for good luck… for both of us. This same ritualistic routine was performed in the exact same way.  at the exact same time. each.  and. every. time they waved the “magic wand” across my stomach for you to appear on the screen before me.

It was almost this time two years ago that I made a pact with you and with God. I silently prayed … or maybe I promised…  “please God please give me this child. Give me this child as he is - and I promise God I will love him, take care of him and watch over him.” It was the same contract I agreed to two years prior when your sister was still growing in my belly.

Our first 16 months together have sometimes been tough.   During the first few months you didn’t always feel good.  Sometimes I would get frustrated and your Dad would come home to find us both crying … I would be discouraged because I couldn’t help you… but despite my frustration I would always remind myself of our silent pact and my promise.

A few weeks ago you got really sick at Mimi’s house. You were only 15 months old.  We ended up staying at a hospital that is just for kids. You really liked the toys and all the buttons on the bed- but that was about it. Your Dad and I were very sad.  Joey your nurse came into our room and held my hands. She told me it was okay to cry and that I would be sad then mad and that it would be okay. I pretended like everything was fine but when Daddy went out for coffee  and you were taking a nap I locked myself in the bathroom and cried in a towel because I didn’t want anyone to see me upset… especially you.  

If and when you ever decide to finally start talking you’ll get a time out for saying “stupid”… unless it’s in reference to your pancreas. He quit working which is why you got sick… I’m still pretty angry about it. But when I get mad I remind myself of our silent pact and my promise.

You’re going to be okay. We’re going to be okay. You have diabetes and will have it for the rest of your life. It will be a description for you, but it will not define you. It will make life very difficult at times and provide unique challenges for you to overcome. You will succeed and always rise to the occasion. You will not use your “stupid” pancreas or diabetes as a crutch or an excuse.

We will be frustrated, angry, and upset together… and it will be during these times that I remind myself of the silent pact and my promise. I will tell you “your story” the story of how I wanted you… how I prayed for you… asked God for you… the story of why your name is Saul.

Sheeew. Enough of that depressing crap already. I mean... seriously.

Okay where did Courtney Grimes go? And who has been writing these god-awful depressing posts?

Seriously.

Okay… I think I’m back. Maybe. At least for now.  Minus the melancholy.  Because…. *drum roll* we’ve had 2 great days of prrreettttyy good numbers (a little too high here… a little too low there) but overall Saul is starting to “act” like typical Saul again - which makes me breathe a deep, deep sigh of relief (at least for the time being)…. Nights are still... "a little rough"- I’m not gonna lie. But hey…  let’s deal with one issue at a time.

Valentine’s Day was a huge hit at our house. It seems as if my new changed attitude has allowed me to enjoy not just one day of “lovin” but I do believe we’re going on three days of “surprises and treats” from special friends and family.

Our good friend Avery sent Saul a totally awesome fireman’s coat along with a pretty cool firetruck book. She sent Harper two of MY favorite books (Ladybug girl) which are now EH's fave's. Mrs. Nancy sent some rockin stickers (a huge HIT with Harper) “How DID SHE KNOW these are my FAVORITE CANDIES TOOOOOOO!!!!!” Grandma surprised us with a big ole package of V day goodies including a “BALL BALL BALL BALL” (Saul’s new favorite toy). Then today the world’s largest edible arrangement arrived packed with fruit, fruit and more fruit topped with balloons, and even had a box of “special chocolate dipped & covered fruits.” Thanks Papaw!

As if all that weren’t enough! The mother-load of goodness hit around 2:30 pm with a nearly 3 tub drop off of the absolute most adorable kids clothes ever.  I am still a bit overwhelmed and awe-struck by the cuteness of these clothes- nothing like my kiddos getting hand-me-downs to pull me out of the ultimate depressive slump.

Dare I say at the moment... maybe Dr. Irene was right after all....

Instead of some long winded saga full of drama and despair-  I leave you today with a few photographic takes of “normalcy."

Insomnia, FEAR and twitter. a random post.

What do insomnia, fear and twitter have in common? I’m not really sure but here’s my post for the day.

Insomnia and I are best friends. We just met about two weeks ago. He comes around 11 pm and refuses to leave my side till waking hours- say around 6-7 a.m. I guess I’m thankful for the company especially during Saul’s “night checks” but I’d much rather be hanging around my old friend sleep…. She was a much better influence on me and I liked her a whole lot better.

I guess really it’s my own fault. I know that I’m summoning him each night as I lie in bed and allow my mind to drift to “fears.” I’ve only got two but they consume every single ounce of me. Insomnia brings them out… makes them worse… won’t allow me to let go of them. During the day I’m usually okay because my attention is pulled in 50 directions.  At night, however… in silence… when insomnia comes… when there’s no one asking me to fill Sippy cups or play dress up or turn on Mickey… I lay there thinking, worrying, dreading… fearing.

2 things.

1.       Every single time I see those dreaded numbers. Those numbers below 70. Those numbers like… 65… 59… My adrenaline starts pumping, I want to throw up. I want to cry. I am so angry. I start freaking out.  There he lies lethargic, shaking, refusing to be held, touched, consoled and all I can do is wait… and pray that they go above 70 in 15 min. The wait is agony.  It’s 15 of the longest minutes of my life each and every time. And… each time his numbers drop I know it’ll be “this time.”  I watch for any possible signs- eyes fluttering, shallow breathing… I know that any second he’ll go unconscious... won't be able to swallow… It’ll be this time I have to use the glucagon… this time that I call 911… this time that I’ll have to hold him and wait… wait for the ambulance to come while he slowly slips away.

2.       In a thousand years I never would have put Type 1 diabetes and “neurodevelopmental  disorder” together in the same sentence. Sure I immediately worried about his eyes, kidneys and nerves… I have seen firsthand the damage that diabetes can do to a body.  But diabetes effecting brain development? His cognitive ability? Whoever stops to think about the relationship their stupid pancreas has on their ability to learn.

I can’t escape seeing the connection everywhere … in everything I read… every medical research article “The relationship between hypoglycemia and possible neuropsychologic impairment is of far greater concern for the very young child than for older children and adolescents. Many reports describe subtle neuropsychologic or intellectual impairments.”  I’m constantly inundated with the fear and frustration that I’ll have no control over a disease that will greatly impede his future opportunities. I want to scream at someone... I"M TRYING TO CONTROL HIS LEVELS.... BUT... BUT... BUT... NOTHING I DO SEEMS TO HELP... AND... AND.... AND... HE'S LOSING PRECIOUS BRAIN CELLS........ *sigh*slump*

On a lighter note… after reading  thisiscaleb.wordpress.com I feel so much better about turning to social media for assistance throughout this whole process. I was going through old posts on this blog and found a story from Lorraine who was recounting a trip with her 3 kids (one of which is diabetic) to the ballpark. She got there gave him a hotdog and couldn’t find the carb count in Calorie King… after a somewhat unsuccessful Google attempt she turned to twitter…. And was instantaneously hit with a thousand replies but even more important perhaps… she had the feeling of support that she wasn’t doing “this” alone.  

Mount Saint Harper

Saul’s diagnosis has been hard on everyone in the family… and for different reasons. Jeff has overcome a lifelong fear of needles. I have quickly relearned basic math skills.  I’m still not sure how Mom is handling the day to day…  it appears she’s channeling her stress, aggression, fear and frustration into cleaning every inch of my house… which for me is turning out to be pretty sweet.

Harper on the other hand… is having a really difficult time.

It was easy when Saul first came home because she had missed him while he was in the hospital.  Once he was home however, she quickly realized life had changed. In many ways her small three year old world has been turned upside down.

We used to let both kids wander the house with Sippy cups drinking at their leisure, till their hearts (or bladders) were content- we no longer do this.

We used to allow both kids to “graze” typical toddler/preschool eating behaviors- we’re trying to stop this.

We used to let Harper to eat at her “special table” while the rest of us sat at the dining room table- she can’t do this anymore.

We used allow Harper to “be excused” before the rest of us were finished eating- she has to stay at the table now.  

On weekend mornings we used to get up, hang out, cuddle in bed, cuddle on the couch. On regular school days we used to get up watch Mickey, get dressed… now it’s a rushed, regimented routine of glucose checks, weighing food, feeding Saul, giving insulin.

Last night was the catalyst… Mount Saint Harper erupted… it was disruptive. violent. and damaging. She took most of it out on me screaming that she didn’t like me. that she wanted to throw me in the trash.  she wanted me to just leave. Mom tried talking to her. Jeff tried talking to her- nothing seemed to work. Fed up and stressed out I eventually forced her to bed… tears and all. As I attempted to tuck in flying arms and legs she said “Mommy I just wish you loved me like you love Saul.”

The past two weeks for me has been nothing but pure survival. In all my frantic rushing, and fixing, and checking, and stressing I totally forgot about Harper. Sure I tried to talk to her and explain what was happening, and sure she could repeat everything back to me.… but what I hadn’t allowed her to do was vent… to express her emotions… to talk about her feelings, fears, and frustrations with all this.

Thank goodness we as parents are allowed to make mistakes and fix the errors of our ways. Thank goodness today was a new day.