Fall(ing)

Sure. We started the morning like this.

But we got those blood sugars up enough for some mid-morning shenanigans - as evidenced below.

 

 

I'll take falling leaves over falling blood sugars any day. 

 

 

Diabetes Jekyll and Hyde

If you don’t suffer from some kind of neurosis prior to a T-1 diagnosis you certainly will after.

“But he looks great”

“He doesn’t look sick”

“You’d never know anything was wrong with him”

“He must be doing a lot better”

I’ll admit, I was probably the most naïve of all of us when it came to understanding Saul’s diagnosis. I know I’ve already discussed it- but when we were told Saul was “diabetic” I was like “uh. okay,” and kinda shrugged my shoulders.

My initial gut reaction was “God, it’s not that bad.” I still remember thinking “well… no more sweets” and “so he has to take shots… I can give shots” and there are tons of people walking around who are diabetic… (I mean… granted they’re all OLD)… but really, “What’s the big deal?”

I know that so many of you out there think the same thing… and feel the same way… because seriously… sometimes those same thoughts still creep up.

.… and sometimes I hear/and am part of conversations that go like this…

(speaker): “you know (so and so) is diabetic and they’ve had it for years….  and they’ve never had any complications. They live like a normal life and are fine. I don’t know why you get so upset about Saul having diabetes.”

(speaker): “yeah, we have all kinds of diabetic kids at our school so it’s no big deal, they just go to the nurse a lot.”

(speaker): “they have a pump and you’d never know it. They never make a big deal about any of the stuff you ever talk about.”

(speaker): “why do you make such a big deal about diabetes… so he can’t have candy and sweets-it’s not like it’s the end of the world.”

(speaker): “yeah our cat is diabetic. We have to give him shots. How cool is that that- our cat and your kid.”

 

Do I want Saul to walk around sick all the time- teetering between ketoacidosis and hypoglycemia? Do I want him to live a life of surviving one coma to the next…  one seizure after another?…. Do I want to constantly blog from ambulances and hospital rooms… just so I can prove to myself and the world that living with Type 1 diabetes is in fact, a life-threatening, inescapable disease that we all must learn to manage and control?

Counting every carb in every bite of food that enters his mouth, calculating doses of insulin and giving injections, waking up 3 and 4 times in the middle of the night EVERY night to check blood sugar levels… these things are easy in comparison to attempting to explain Type 1 diabetes in a toddler and how it effects that individual and their loved ones.

Several events have transpired since that “Debbie- Downer- Walking- Dead” post.

I had a thoughtful (albeit unfinished) conversation with my guru Ashley. I pondered similar thoughts outlined by Type 1 blogger Kerri over at Six Until Me. I spent several days this week suffering through “sick day management” while I myself was sick. I’ve dealt with a few too many hypo episodes following this last change in Saul’s insulin regiment.  

 

I know Type 1 Diabetes doesn’t have to be a death sentence…

But it also doesn’t mean settling.  

 

November is Diabetes Awareness Month.  I feel compelled to advocate. Not just for Saul, but for everyone out there affected by this crazy disease – whether they look sick or not.

You can help Saul and others by educating yourself- something I wish I’d done before January 27^th. 

How to survive the Zombie Apocalypse... or... everyday life.

“You realize, Courtney, Saul will never survive the Zombie Apocalypse. There’s no way we can ever keep him alive.  I think he might make it for a few days… but that would be pushing it.”

About a month or so after Saul’s diagnosis – and several weeks into blogging, I asked Sebulsky to write a “guest post.” I thought it would be clever- and funny, if he wrote about one of his obsessions, and how his carefully thought out, detail- oriented plans, would work now that our lives included a chronically ill toddler- one that is reliant upon a synthetic medication- in order to stay alive.

I remember plain as day – the two of us- sitting there across from each other in our recliners- following that Sunday episode of Walking Dead- when we both came to the realization that “hypothetically speaking…. Saul would be a goner.”

It was early into his diagnosis. We were still on insulin injections. We were averaging 15-20 BG checks a day. I was still angry. I left the conversation… and my recliner. I went to the bathroom to cry.

I cried because I wouldn’t be able to save my son from becoming a zombie.

 

 

Saul has been doing really well lately.  Sure- we’ve had a few highs and lows (a donut AND a biscuit in ONE DAY… HELLO!…. 2 hours of running outside non-stop without pump suspension or temp basal… WHATDA YA EXPECT?).

 

It’s when things are somewhat normal, when levels are good, and we’re just chugging along… smiling and happy…. That’s when I say to myself… “Yeah… but he’ll never survive the Zombie Apocalypse.”

I know. I know. It’s stupid.  

#1. While Jeff likes to talk about it… a lot…. I don’t really believe it will happen… but then again you never know.

#2. What is up with my pessimism? Why can’t I just enjoy the moment for what it is- soak in the “good times” and not anticipate the “what if’s?.”

Maybe it’s because

We live in a culture of fear… fear which we cannot escape. TV shows, movies, news… we’re surrounded by it.  We’re overwhelmed by a constant reminder that at any moment our lives could be rocked by (fill in the blank) _____________________ (a natural disaster, a terrorist attack, an apocalypse, a crashing economy, a widespread plague).

 

There is no possible way I can prepare Saul for all the future obstacles he may face in life- with or without diabetes – and believe me… I’ve thought of nearly all of them.

-          Trapped in an elevator (okay… so actually trapped anywhere… for any amount of time… without insulin or treatments for lows)

-          Driving

-          Traveling- (to remote locations…it’s sometimes like being trapped)

-          Forgetting medical supplies

-          College (any and everything related to college…. I worry about college… yep… everything about college… let’s not talk about college… he’ll have an artificial pancreas by then… right? Right.)

I could go on and on and on… stupid, ridiculous “self-created” situations and events…. “he would die on a stranded island” (but wouldn’t most of us?) “he won’t be able to live in space” (but would he want to?)

on… and… on… and on….

Or, I could just stop living in fear.

I can teach him (and everyone around him) how to treat and manage his condition. I can teach him to advocate. I can teach him to problem-solve. I can teach him to prepare and plan and be responsible.

I could just stop fearing diabetes and the “what could happen” because of it.

 

It seems like the most logical action.

 

So why can’t I just do it? 

Oh you know... Just a Monday Ramble.

I’m not sure if it was Mabel’s passing, crappy weather, or just a stint of the “blah’s” whatever the case- last week can best be summed up as “ugh.” I ended Friday night in the fetal position on the recliner… okay okay… not really… but the thought was tempting.

I had zero energy. Zero creativity.  I had 2 nights of sleeping through Saul’s 3 a.m. BG checks. Friday morning Saul was in DKA. I don’t have it confirmed by a medical professional- but I also don’t need the confirmation because I saw it with my own eyes.

According to the MySentry he ran in the 400 for at least 6 hours… whatever the cause - (kinked tubing? old insulin?) who knows… I nearly passed out when his ketone check was 3.3.

He was a beast. Oh… friends… when he’s high… he’s such a beast. And now that he’s learning to verbalize (which is what I've been wanting all along) … I find dealing with his highs and lows way more emotional (for me) -  instead of just screaming or crying… He actually uses angry, hateful words…. On Friday morning as I was attempting to pump fluids and insulin in him - he was swatting at me screaming “NO MOMMY! NO MOMMY!”  

It was all I could do... to keep myself from envisioning a “future me” wrangling a “future” 17 year old man-boy to the ground and forcing him to comply to my treatment demands… “Oh you’re gonna get this insulin punk… whether you want it or not … cause… “ I’M YOUR MAMA… and you don’t MESS WITH YOUR MAMA!!!!”””

I know it’s difficult when you’re diabetic and you go through these hypo and hyper episodes… I’ve heard/read about and witnessed (not just with Solly) so many T1’s not being fully aware of the behaviors they are exhibiting during highs and lows…. It still doesn’t make it any easier for me. During 2 of Saul’s “hyper” episodes last week I bolused a correction of insulin gave him fluids and then left him lying by himself in his crib… because that’s what he was demanding. Every offer to hold him, carry him, cuddle him, move him to the couch, recliner to watch TV or sit quietly was met with “NOOOOO!!!!” “ME BED!!!!!!!!” “NO MOMMY!!! NO MOMMY!!!” So I would patiently wait outside his bedroom door for Bruce Banner to make his appearance again and for The Hulk to disappear so that we could once again resume our daily lives.

I won’t lie… I would much rather treat lows than highs…. Even though the lows are scarier… a bit more dangerous… def. more urgent… treating highs is just flat out exhausting.

Our house continues to seem quieter with Mabel’s absence. 

While I know Saul’s DAD is not pet and will not be a pet… it has given us all something to look forward to, think about and anticipate.  Sebulsky and I have been trying to out-do each other on the clever scale… thinking up names for our DAD. Most service dogs are given “special names” sometimes related to their line of work. A lot of the great ones have already been used…. “Siren” “Radar” “Meter” “BG” “Tracker.” Jeff came up with one that we both really loved… but Saul has trouble saying it… so we put it on a “maybe” list. However- out of the blue this afternoon - I thought up the bestest name ever. Sebulsky has since confirmed that I am currently in 1^st place and we do, indeed have a “winner.” Since the boys are sleeping I can’t get Saul to practice saying it… so we’ll have to wait and see how it comes out of little Sollys mouth first before declaring success. Meanwhile, Harper insists on calling the dog “Leslie.” I’m not sure where she heard that name- or why she likes it… but she’s renamed all her stuffed animals that, and the random 3 hour pet turtle we kept in the yard a few weeks ago, and she anticipates naming her “future bird” Leslie… All I can think about is that crazy white-haired guy who used to make those stupid movies with O.J. Simpson… wasn’t his name Leslie?

Oh… and back to Harper… Saul (much to Sebulsky’s dismay and disapproval) calls her “Sissy” actually it’s more like “Tissy” which I think is cute… Jeff… not so much so. During Saul’s last site change (after the 2^nd change out in 24 hours) he started crying and then demanding “NO TISSY DO IT” “TISSY DO IT” when it came to inserting the needle. I asked Harper if she wanted to try and she said… “ah… I better just hold his hand.” Which she did… and then wiped the little drops of blood from his old site with a tissue, then gave his 25 hugs and kisses, then sat with him on the couch and watched and episode of “Little Einstein’s” she’s seen 35 times. While she is a bit rotten, a little mischievous, a lot manipulative and way to smart for her own good…. Most of the time she’s a pretty good “Tissy.”

 

I’ve officially rambled way more than publically allowed.

So… here’s to a better week…

I hope we can all find more laughter than tears and more smiles than frowns.

 

 

 

Eulogy

We were driving behind Mom and Dad on the way to the farm. I was reading the Herald Dispatch – Jeff was behind the wheel. I saw the ad- “AKC Basset Hound puppies 8 weeks old.” I begged. I pleaded. I promised. “We’re ready for this Sebulsky- I know we are.”

Jeff and I were 2 years into our relationship. That was 11 years ago.

We turned off the Hal Greer exit. Mom and Dad kept driving.

We turned around and drove straight to see you. I had already made up my mind. We were bringing home a baby basset hound puppy.

Your Mom and Dad were there. Just as fat, smelly and loveable as you…. And all those sweet, pudgy, rollie-pollie brothers and sisters of yours. I picked you out. We couldn’t take you home right away but we did come back and get you 2 weeks later. You rode home wrapped in a towel on my lap. I kissed you a thousand times in those 20 minutes.

Mabel was put to sleep a week ago today. October 4th, 2012. She was put to sleep on the Feast of Saint Francis of Assisi. I like to think that was no coincidence.

 

Our Mabel girl – the crazy, annoying, loud, smelly dog who I thought would live forever. Mabel- the dog with 9 lives. She escaped death on so many occasions Jeff and I eventually quit keeping count. Mabel- she taught us patience. She made us laugh... and cry... and scream... and occasionally yell explisitives.

Whether you loved her or hated her (and I know some of you fall into the latter category) you can not deny that she entertained you. Our family has so many hilarious- sometimes - disturbing memories of her. Whether it was her first "real" brush with death on July 4th at 10 weeks old eating rat poison at the farm- or her last "big adventure" when she went missing for nearly 24 hours only to be discovered at 2:30 a.m. stuck in our neighbors window well (on what happened to be one of the hottest days on record for the Central KY region).

Oh resilient Mabel... how many times did she brave Boone Ave? Our fat, old, basset hound with no eyes, waddling along the road- crossing un-godly traffic to get to the High School- no doubt in search of kids and food... her two favorite things. There was the time she got her head stuck in between porch rails- the time she ate the antique glass Christmas bulbs- the time she ate all our special Christmas Day monkey bread- the time she got attacked by the Curry dogs- the time she walked up Rt.152 with a slice of Ginos pizza in her mouth- the time (this summer) my best friend Lisa and I "rescued" her from the pound... so many stories- so many memories- so much love for one, crazy, stinky, hound dog who barked incessantly and covered our lives in hair and dog drool for years.

 

Our house has been eerily quiet since her passing. Sure we have Broni and Daisy as pets and that does help ease a bit of the loss. But they too, are grieving her absence.

 

I got the call from the vet’s office yesterday… “your package is ready for pick-up.” I now have the difficult task of bringing her remains (which we had cremated) home. I’m pretty sure she’d liked to have been buried at the farm- or maybe Ritter Park- or possibly GRC (where she often frequented).

 

Pets (especially ones like Mabel) aren’t always easy. They require a lot of effort- time- patience- love.

 

I firmly believe every kid should have the opportunity to experience life with a pet and I’m thankful ours got to with Mabel. Kids learn the responsibility of caring for another living creature. They learn empathy.

 

Jeff and I haven’t really talked much about Mabel’s passing. We each are finding closure in our own way.

 

I am comforted by Harper’s simple and optimistic explanation… “God wanted her in heaven so he could give her new eyeballs… that way she’ll see me when I get there.”

 

New Years Eve 2008 Mabel partying like a rockstar

Found this gem on my brothers flickr site.... it is a rarity.

Family photo 2006 or 2007?

Mabel: aka... the devil. The halloween costume she wore for years

After her first surgery... we called her "left eye lopez"

The "younger version"

Mabel in black and white

Her favorite pastime...

RIP Mabel girl. You will not be forgotten.

 

 

 

 

 

 

 

T1P

“How many times were you up last night?

“4”

“Yeah… me too… no... wait…. 5… I forgot that 4:30 check… to make sure her high came down.”

 

“Have you ever treated with quick sticks?”

 

“Grape juice works better than orange?

 

“I pack carb counts on post it notes in my son’s lunchbox”

 

“Powerade Zero… lots and lots of Powerade Zero.”

 

“How do you get your kid to hold still for CGM insertions?”

 

“Give me your list of top 10 low carb snacks”

If you’re a parent of a T1 kid and you meet other parents of T1 kids… the above is typically types of conversations that are shared. It’s fairly fascinating (or maybe it’s just the inner sociologist in me that finds it fascinating) that over the course of 9 months I have connected with so many T1 parents and each and every time the “meeting” follows a similar pattern.

There’s a ritual that occurs upon encountering (whether virtually or in person) other T1 parents. First, comes a huge sigh of relief, a  “wow… someone else like me.” Suddenly things like socio-economic status, race, gender, geography and political affiliations (if only for a short- temporary time) no longer matter. Whatever differences might set your family apart – might limit your encounter in any other situation are gone- you have one shared common identity… you are members of a community… the diabetic community.

Once contact is made with other T1 parents the questions/stories start.

“Pump or injections?”

“Humalog or Novolog?”

“Diagnosis Date/Diagnosis story

“Medtronic CGM or Dexcom?”

“How long have you been off work to care for your kid?”

“How do you handle school?”

“What’s in your 504?”

“A1C comparisons”

And then.… there’s always the scary story, either one from personal experience or one they’ve heard about (seizures, DKA, amputations).

Next the conversations take a turn towards tips/advice/suggestions… The “have you tried…” “Use this app.”  “Check this site.”  

As the shared commiserating comes to an end and the verbal exchange reaches closure and interesting thing happens.  In my short 9 month experience thus far this has proven to be the case each and every time.

Inevitably someone ends the discussion with

“Diabetes sucks”

“No one understands… I didn’t understand…..”

“I never knew it would be this bad…”

Which is followed by…

“It gets easier… it’s still difficult…. but it gets easier”

And after this one of us will say….

“Caring for a chronically ill child is hard, so emotionally and mentally exhausting…. But Thank God my child has Diabetes and not something far worse.”

Or

“It was so difficult to listen to the Doctor diagnosis our kid with a lifelong chronic illness… but could you imagine if it had been cancer?”

 

 

 

 

Some day’s diabetes takes over our family… but some days it doesn’t. Some nights I get 4 hours of sleep…but some nights I get a little more. I thank God every single day for what I have. I thank God every single day that with modern medicine, technology and education Jeff and I are capable of learning how to care for, manage and treat an unpredictable –crazy- chronic illness in a typical- unpredictable- crazy 2 year old toddler. I thank God that I get to stick him, and poke him multiple times a day to keep him alive and well. There are so many other mothers and fathers who would trade places with me in a heartbeat…. who would give anything to only have to wake up 4-5 times at night, who would love to know that by sticking their child 15 times a day with a needle it would save their life… parents who can’t say “my son will have a relatively healthy- normal childhood.” 

While I sometimes seek solace in cries of frustration and anger- I remind myself of others… my heart aches for mothers grieving as they watch their toddlers die of life threatening diseases. T1 parents keep it all in perspective. I keep it all in perspective. We should all just try to keep things in perspective.

Shew Wee... is it Friday yet?

What. A. Week. AND IT'S ONLY WEDNESDAY (it is Wednesday... right?)

Sunday: We recovered from the absolute madness of Saturday and Evans Orchard. We all took naps (well Mawmaw who never naps) didn't take one... but I'm pretty sure the rest of us did. I did. And really... that was all that mattered. Sunday night we took the kids to Gattitown for Diabetes Education Night which was sponsored through the company Animas. We were one of two families there. We got some sweet free diabetes swag. Harper scored 15 dinosaurs, and two stuffed animals. This girl is either super lucky or really, really, good at playing "carnival" games. Jeff swears the latter is true. Either way... she had a total blast... and... well... Saul ran around like a crazy TWO YEAR OLD... screaming "No" at everyone and everything. Pictures can be viewed here.

Monday: I did an observation of Harper's Montessori classroom in the morning. It was incredible. I was amazed.. It made me miss my kiddos at school. I am blown away by the progress Harper has made in just a short two months. She is already reading simple words, spelling and mastering so many skills. Her ability to focus and concentrate on work is fascinating to watch in the Montessori setting. I hugged Ms. Watt (her teacher) and told her I was grateful- I would have kissed her but I thought that might have crossed the line. From one teacher to another I will forever be appreciative that Harper's first introduction to "school" was in a caring, rigorous learning environment, with a teacher who encourages her to be an independent, well-rounded, life-long learner. *Can I also give a heart-felt-shout-out-virtual-hug and kiss to Grandma & Pap... without them... Harper would not be having this experience.

Tuesday: Saul had his 2 year checkup. Prepared for the inevitable meltdowns... a possible "hulk out" high or a "lethargic low" I packed as much "crap" as I could fit in my book bag purse…it entertained him about half the time we were there... the other half of the Dr's apt was spent with me repeating "no" and chasing him around as he attempted to pull off the tegaderm on his leg site. Stats: 30 some inches tall? 27 some lbs? (I think?) not really sure about percentiles and all that jazz... just know we got a clean bill of health and are growing and gaining weight beautifully... normally... like any kid... like a kid who wasn't diagnosed with diabetes at age 15 months. I have quickly learned that growing and gaining weight is critical for young children with an early T1 diagnosis. So far... 9 months in to diagnosis... we're doing great.

The girls had and eventful Tuesday afternoon- filled with a trip to the library for new books AND meeting a not-so-friendly, overly-feisty, fast and furious "turtle" that came to visit the Grimes-Sebulsky house for a few hours. Folks... it's the little things in life. lol. Seriously.

Now that I've bombarded you with 500 links... I'll leave you with a few pictures.

 

We've had some random breakfast guests lately

Solly & I enjoying a ride.

Little Solly looking not so "little"

Scored "D" swag

 

Girls making Saul bday cupcakes

The boys enjoying aforementioned cupcakes 

Harper's 2-hour pet "Leslie"
 

EH & MD posing with "Leslie"

 

A quilt in progress by one of Harper's classmates. 5 year olds in EH's class are sewing individual 9 piece quilts. I love it!

 

One of the books we checked out at the library yesterday. Preparing our kiddos for our future DAD!!!

 

Oh... yeah... have you heard!?!?! Solly is on his way to getting a diabetic alert dog? Keep up to date here and here. Thank you to everyone who has donated and spread the word! Keep the donations rolling. Lil buddy says "Tank Tu!" 

Hey Ya'll! Let's get a dog for Saul!

Well...after weeks of hem-hawing and stressing... I We finally just put it out there. I reluctantly hit "publish" and "post" and "like this page" and well... now there's no turning back.... grammatical errors and all... out there for the world to see... and despite my stressin and frettin and fussin the entire Grimes-Sebulsky household is SO excited to start the process of Saul acquiring his DAD.

After researching for quite some time, contacting a number of various diabetic alert dog agencies across the US and weighing all Saul's options we decided that helping Saul to acquire a DAD would be a life-changing- life-saving investment like no other.

If you are in the market for a diabetic alert dog, if you are looking for an incredible organization to support, if you happen to have a few extra dollars just burning in your pocket.... I urge you to check out Warren Retrievers and Guardian Angel Service Dogs and make a donation on Saul Sebulsky's behalf.

We chose this organization based on a number of recommendations.  They are reputable. They are legitimate. They are concerned... and... after speaking directly with Dan Warren on the phone I knew this non-profit agency was our "perfect match."

Saul will acquire his DAD in approximately 6 months. We have already started the countdown and the arduous task of thinking up the perfect "diabetic" name for Saul's 4-legged friend. I am currently looking for children’s books on service dogs and talking to Harper about "service dogs" versus "family dogs" versus "therapy dogs" so that she can better (advocate for) and explain our DAD to others.

So... without furthur adieu check out the site.

Spread the word.

Let's get a dog for Saul ya'll!