I promise to catch up... one of these days... here's a start.

I promise I will start blogging about this journey soon. It's been so crazy lately that I just haven't had time to sit and type. I do want to share a moment from last night. First off, I don't want anyone to be fooled that this transition hasn’t had its challenges.  Like most everyone I tend to show the “all rainbows and butterflies” side of the story on social media. The fact is… ADA is only 17 weeks old and still learning. She’s doing amazing and has such incredible potential and is/(will be) a fantastic service dog. As she continues to “hone in” on her skills and we (humans and ADA) begin to understand each other a little better “alerts” will become clearer to us (humans).

With that said… Last night in typical fashion our house got CRAZY. The kids were wild. ADA was wild. Jeff and I were reaching our limits of sanity. I thought ADA was feeding off the kids. She was “bouncy” and “running” and refused to settle. Jeff even came in and said… “She’s like Tigger… she won’t stop jumping.” I took her out- I tried to walk her- eventually she calmed down… and laid down. At the beginning of the “crazy” I had glanced over at the MySentry… and saw he was 190. I remember thinking… okay… he’s fine.

Now… had I done – what I was supposed to do- I would have realized that ADA was not just “acting out” but actually trying to “alert.” When I finally realized…. almost 35 min later (which happened to be when I glanced over at the MySentry and saw 90 two arrows down) I checked him and he was 55.

I can’t explain it. I don’t fully understand the science behind it… and I know we’re in the process of “perfecting” it. But I can say… ADA is pretty amazing… and we are so thankful to have her in our family and taking care of Saul.

A Dog For Saul Website

Ch-ch-ch-ch-Changes

They're not always bad.

 

(changes)

 

They're difficult.

 

They're necessary.

 

 

They're inevitable.

 

(sometimes)

 

 

I could attempt to explain what led us to enduring a 7.5 hour apt at Cincinnati Children’s Hospital last Friday (one that involved a series of thorough hour long + appointments with a Social Worker, Pediatric Endocrinologist, Nurse/Diabetes Educator and Dietician) oh… and agreeing that the 1.5 hour or so drive both ways… was “totally no big deal” ............... but instead… I’ll just say… my devastation over our Ped Endo at UK leaving coupled with this brought on the change.

 

 

And it was great.

And it was worth it.

 

 

Having been fully informed about the length of our initial apt, Jeff and I decided to drive up on Thursday so we could spend the day with Saul at the Aquarium and hang out in Cincinnati. We thought the alone time with Saul might be nice.. and we were right. We had a wonderful "mini-vacation." Because it’s possibly the only one I’ll get this Summer – I took full advantage of all hotel amenities and was living it up at Embassy Suites.

Cincinnati Children’s is amazing. I will try not to compare our experiences with UK Children’s (mainly because I have friends and contacts at UK) but it’s hard not too… The Pediatric Endocrinology Dept/Clinic at Cin is so much bigger and better staffed (granted… bigger is NOT always better) so quality of care will be determined as we progress through this journey. The striking difference however, is the approach to treatment. There is something to be said about the unique (and it is, believe me, “different” than what we’ve been accustomed too) method that is used.

 

From the beginning of the process I was told the Clinic institutes a 4 team approach. You are followed by a Pediatric Endocrinologist (there are a number of them-  and the Clinic encourages you to find someone who "clicks" and is the "right fit" for you). Many of Dr's specialize in a specific Diabetes/Endocrinology “area” so you have options in terms of who you see. Because this was our “initial visit” they automatically scheduled Saul with someone - and in the end- we were very pleased- so we agreed to follow up with her for our next apt.

 

Other than the wait (which I had mentally and emotionally prepared for) I was most concerned about meeting the Dr. I loved Saul’s former Ped Endo and had very high expectations… I’m happy to say they were exceeded at this first visit. Our Dr. was so thorough- so detailed and so great at communicating and explaining that Jeff and I seriously walked away saying… “Wow. That was awesome.” She also had good bed-side manner – suggested we take a half an hour lunch break between appointments and even walked us to the hospital cafeteria. Needless to say… I felt a huge burden lifted.

 

We – literally WE (the Dr. and I – Jeff was wrangling Saul during most apt’s…lol) sat and reviewed Saul’s data which they uploaded from Carelink. WE sat and discussed his A1C which upon finding out was an 8.4 nearly caused me to melt down. My memory is fuzzy- but I’m pretty sure she had to scrape me off the floor and hold me up for a good minute and a half… I was prepared for a “higher” one… but NOT prepared for an “above 8.”

 

 

The Dr. on the other hand was totally okay with it- and said it was great. She showed me the print off where 8.5 and below is the “target.” She said, “I understand you are shooting for perfection- but you have to realize you are doing a great job and you won’t always get perfect A1C’s.”

 

 

We both agreed that our first and most important “target goal” was to start “smoothing out” those peaks and plummets in blood sugar levels. Saul’s been on quite the roller coaster for the past month or so- and appears to be extremely sensitive to insulin corrections – so WE made a number of adjustments to bolusing and left his basal rates alone for the time being.

 

She also ordered blood work to test for Celiac and a few other “type 1 related” diseases and issues. She also talked about the varying types of diabetes “within Type 1” and wants to try and find out “exactly what we’re dealing with, to know how to go about a treatment plan for managing his care.”

 

 

*Because... side note (not all Type 1 Diabetics are the same) I have to keep telling myself this over and over and over and over when I listen to someone say... "Well so and so's kid... has so much better control... so and so's kid NEVER has lows... so and so's kid never had to deal with any of this stuff."

*Because... (second side note) I take it all so personally- as a reflection of my performance as a Mom and a Type 1 caregiver... I know... I need to get over it. Already.

 

Jeff and I were equally impressed with the other specialists we saw during our visit. I felt like I easily bonded with both the DE and dietician (who I think I cracked up a good 65% of the time). The Clinic encourages you (like with your Dr) to find “someone you click with” in terms of the other team members and I will def. follow up with them next time.

 

In general- most of what was reviewed and discussed – I already knew- but am happy to have walked away with a way more detailed “step by step” instruction guide on “sick day management” and treating ketones.

 

Oh... and we also now treat at 80 as opposed to 70.

 

All 4 specialists encouraged communication and all 4 took pride in the fact the Clinic offers so much support through communication (because of the number of staff and resources).

 

They have a 24 phone line.

They return same day calls.

Nurses rotate taking calls all day.

 

I was told twice by the D.E. “You have a Type 1 two year old. You are a priority. If you need to speak to someone regarding a high or low episode you tell them… I have a two year old. You will be made a priority.”

 

I was also told by the D.E. “If you ever- talk to someone on the phone who comes off as rude you ask to speak to their direct supervisor. You are dealing with a Children’s Hospital. You have a child with an illness. You deserve excellent care.”

 

So. At the moment. For right now. Despite the drive. I’m sold.

 

Oh… and they have a pretty awesome Fire truck in the waiting room which kept Saul entertained for hours… literally. So I think he's sold as well.

I'll leave you with a few documented photos of our adventure!

 

Excited for a trip to the Aquarium!

 

 

Entertained everyone by his constant yelling of "Yee haw Froggy"

Mesmorized

 

 

Always my favorite part of visiting the Aquarium

 

Wanted to "get closer and closer and closer"

LOVED the sharks- his favorite

 

 

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Penguin watching

Coulda played with this thing for hours

Ackward. Eating tuna while at the aquarium?

We begged and pleaded... just come lay down and take a nap... he's saying... "let's go on an adventure!"

Swim time

This kid LOVES swimming and kept yelling "I'm a swim-teamer"

Saul and I had the entire pool to ourselves... and it was fabulous!

Pumped

Annnnddd.... then the next day... lol. He was actually in a great mood all day... just making faces here!

LOVED wearing the backpack... which was pretty adorable

 

 

He kept checking himself out in the reflection saying "I just like Dora"

 

 

He's two- and he knows all the routine... lol.. he seriously is a pro.

 

E2 Will always be easy to remember

This might just be my favorite pic of him from the whole trip

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He was so so so so so so good for HOURS... and HOURS as we met with all the different folks. I planned ahead and got 5 little "dollar store" gifts for him to un wrap through out the day... to try and keep him busy and "good" LOL... which he totally was

Ended the day with blood work at 4:15- He's just like EH and has to "watch" the entire process

Still smiling... still wearing that backpack... enjoying a "treat" for being so good after 7 and a half hours!

This was 2 minutes after I buckled him in - wiped - out-

Kryptonite

You were “Super Robot Guy” again this evening (you have been for days). I guess the transformation occurred while Sis and I were at Gymnastics. You’re the only Super hero I know that stops mid-mission to give kisses. 

Tonight’s been rough. I guess it started once you shed your “Super Robot Guy” attire. If I had super powers I’d protect you from what just happened. I’d fight that stupid Lex- Luther- pancreas of yours and show him whose boss. He’s done nothing but plot your demise since he quit functioning over a year ago.

Everyone is hard to love sometimes… even super heroes. I had to remind myself of this tonight when the incident occurred… that it’s not really you… you’re not really in control… it’s the diabetes… and I’m sorry I couldn’t stop it from happening. I’m sorry your bloodsugars were so high that it made you sick. I’m sorry that during hyperglycemic episodes you are altered from a strong, kind-hearted hero to an angry, wrathful fit-throwing villain.

I know you won’t remember screaming. You will forget yelling at Daddy telling him to “just leave” “just go away.” I won’t make you feel bad for hitting and swatting me… for shouting “NO MOMMY… NO TOUCH…NO TOUCH ME… NO KISS ME… NO TOUCH ME” and shattering my heart into a million pieces because other than giving you insulin it’s my only means of comforting you. “

When you wake up in a few hours- you’ll ask if you can be “Super Robot Guy” and you know of course, I’ll say yes. You’ll run around the house pretending to be “super strong” and “super tough.” We will play the game we play every single day - “Super Robot Guy” saves “Super Mommy”and when we do, I’ll try not to think about what happened… how I couldn’t save you from getting sick tonight… how I can’t always shield you from the highs and lows that seem to hit you from all angles outta nowhere and for no reason.

I’ll tie my cape a little tighter tomorrow… and maybe for a few hours I’ll pretend to fight criminals instead of diabetes. 

Adventures in Babysitting

“But I SWEAR…. I’m GREAT with KIDS! They love me… kids LOVE me.”

 

I had this dream the other night where I was sitting in an interview and I found myself passionately arguing the above phrase to folks who appeared to be my apparent (and what I considered to be *in a desperately hopeful/please God give me this job/It’s what I was destined to do/I need money… please… the money) future employers.

Sure… I woke up and immediately started dissecting.

*Is it a sign?

*Am I re-defining myself?

*Missing my kiddos at school?

*Am I having single-income nightmares?

 

Flash forward to this morning.

You know… a typical morning filled with this.

 

And this.

 

Wonderful moments of learning, growth & development that I get to witness in not just my child- but another as well… doubly blessed.

And then.

 

I go to the bathroom.

 

For 2 seconds.

 

Make that 3… cause I stupidly decided to “tidy up” (aka hang up a towel).

 

I hear Saul… “Uh-oh Mommy…. Uh-oh.”

 

I open the door and find that Saul is now sporting (a failed mind you) purple paint goatee.

 

I walk into the kitchen and find Trip wedged between the table and chair helping himself to a bag of pretzels (oh… and also adorned in some warrior-like face paint) (and… now sporting some lovely dyed purple hair).

 

 I see this… which will no doubt cause a meltdown of epic proportions when discovered by Harper… and before you think… or say it… she will find out. She’s that kid.

 

I see this (though I’m sure you’ll agree with me that the spilled paint is small fries in comparison to the amount of dog hair on that slip cover- so yeah… maybe that was a good thing).

 

And best yet…

There’s my poor, sweet Daisy girl.

Head hung low, tail tucked… embarrassed to be associated with the culprits… clearly a victim in this case.

 

Me: “Boy’s… WHO DID IT?”

Trip: “Sauce.” (aka Saul)

Saul: in a quiet, sad tone “meeeeee…….”

Me: “Trip did you have any part in this?”

Trip: “I’s eattin Mommy… I’s eattin.”

Saul: “is meeee… Mommy… is meeeee”

 

Ah… if only we retained our innocence and ability to accept and admit fault throughout adulthood.

 

But really… I swear… I’m great with kids… really… I am…

I gotta laugh to keep from crying

I went through the Rite Aid drive through to pick up 3 RX’s for Saul - and to ask about ordering  test strips for our newly acquired meter. The girl who was checking me out was new (because I’m there every other week… I pretty much know everybody… and even if the tech’s don’t recognize me… they seem to “know Saul”).

All 4 kids were with me- and being pacified by Bubble Guppies, so I had the rare opportunity to actually “watch” everyone in the Pharmacy -scrambling to wait on folks – answering  phones and grabbing medications to hand out.  Any other day I’d be yelling at EH to put her gum back in her mouth or fumbling with buttons to turn up music for Saul… but- because I had my full attention on “people watching” I was able to witness the genuine look of sheer shock and terror as the tech rang up my bill.

Tech: “Oh. Oh. My. Um. It’s 656 dollars for your 3 scripts.”

Me: “Got it.”

Tech: “Huh? I’m so sorry.”

Me: “Oh it’s okay… I got this (hands over insurance credit-card thingy)… I’ve got insurance.”

Tech: “It’s like you didn’t even blink an eye. That really stressed me out.”

Me: “Ah… whataya gonna do? He’s gotta have insulin to live.”

She shook her head in agreement and sent the med’s my way.

I waved to a few folks who recognized me – who were working inside and mouthed “see ya in a few days!”

I chuckled as I pulled off and thought… I wish I’d gotten a picture of that ladies face to show Sebulsky.

 

 

Believe me… medical costs around here are no laughing matter. I feel like we’re up to our eyeballs in medical bills for Saul… and the funny thing is… they just keep on coming… cause we gotta keep on ordering … cause he’s gotta keep on using…  to keep on living.

I beg you... please read.

* Disclaimer- I am not a Dr. or a CDE... just a Type 1 mom with a Type 1 toddler.

When you have Type 1 you must constantly balance/manage/control your blood sugar levels. Your Endocrinologist gives you a "range" in which you must attempt to stay within. You (or someone) must take on this responsibility and perform the duties of a pancreas by controlling the amount of blood sugar in your body at all times. If you get out of range... blood sugars rise too high (hyperglycemia)- (consistently high blood sugars lead to long-term complications- damage to kidneys, eyes, heart, amputations) or if blood sugars drop too low (hypoglycemia) you will die.
 

Before I had a toddler with Type 1... and even in the hospital at diagnosis, I honestly thought... "ah... it's just diabetes." I know that so many of you out there think this as well... I'm ashamed to admit that I taught students (both sweet elementary babies and high school young adults) who were Type 1 and I never really gave much thought to how I would handle a hypoglycemic episode if it happened in class. I didn't think Type 1 was a big deal, because I didn’t know. Because I watched my Granddad live with Type 2 and thought that Type 1 and Type 2 were basically the same. Because I thought diabetes was about "sugar free foods" and "weight loss" about "finger sticks" and "insulin injections” not about having to save someone’s life in an emergency situation.


Saul has now had 3 “serious” hypoglycemic episodes. Because of the severity of the circumstances I feel the need to advocate and educate about hypoglycemia and what you do if you find yourself having to assist in a hypoglycemic episode.  


I can only speak for Saul- and how they have occurred thus far.


All of Saul’s “serious” hypos have taken place during “sleep.” 1- during his nap (you may recall that post- our first ambulance experience) and 2- during the wee hours of the morning (this post).

 
While Saul does wear a Continuous Glucose Monitor (a device with a cannula that stays in his skin and measures the amount of blood sugar in the interstitial fluid) the technology is not 100% accurate. The CGM is linked to his Insulin Pump (a device that is inserted – it has a steel needle which stays in place and provides both “long lasting insulin” (basal) as well as the insulin used to cover the carbohydrates he eats (bolus). The insulin pump must be operated by a human. Both the CGM and pump are just technological tools to help ease the difficulty in keeping a Type 1 “in range.” While I am appreciative and thankful for today’s medical advances and our family’s ability to acquire them…they are not fail proof… and they will not prevent death.

 
Managing Saul’s Type 1 is extremely difficult because of his age. His eating patterns, communication, growth, development, etc, etc, etc, only complicate controlling his blood sugar levels- therefore he is more prone to instability and at a greater risk for experiencing both hyper and hypoglycemia.

 
I will save hyperglycemia for a later post and focus efforts on hypos for this discussion.

 
There are numerous sites with hypoglycemic information and education out there. Here are two as starting points. 


Hypoglycemia Information
 
Hypoglycemia Information


The lowest hypo we have recorded for Saul has been a BG of 35.  Ironically he appeared “hypo-unaware” at the time. He was talking and playing and “acting” like normal Saul.  When he suddenly “fell down” I thought to myself “hmm… strange” and just happened to check him. His CGM read 110 at the time. We attempt to keep Saul between 100-200 (though he often runs higher). We “treat” at 70. So seeing a 110 on the MySentry (a large screen that shows CGM reading at all time) would “typically” be no cause for alarm.

 
During Saul’s severe hypo episodes (the 3 really bad ones) he exhibited the following symptoms.

• Heart palpitations/fast/pounding heart rate
• Sweating
• Acting aggressive (hitting, swatting)
• Convulsing
• Shaking/trembling
• Uncontrolled shouting/screaming  (it’s hard to describe this… but he did it both in terror “Stop” “Stop” and once it kind of went parallel with the aggression… or at least that’s how it seemed at the time)
• Dilated pupils
• Mental confusion/disoriented
• Seizures

 
Saul has never lost consciousness or gone into a coma.

 
We have not used glucagon (yet). Glucagon is a hormone secreted by the pancreas that raises blood glucose levels. Because a Type 1’s pancreas can no longer produce or secrete glucagon an injectable form is used in cases of severe hypoglycemia (when someone is unconscious). Glucagon should be carried at all times by Type 1 individuals. Saul’s glucagon is in a red case and must be mixed before injecting. We have been instructed by our Ped Endo to use glucagon if Saul has another terrible episode.

 
If you are ever with him (or any other Type 1) and you see hypoglycemic signs (again… Saul’s often hypo-unaware at this point so he cannot “tell you” how he feels you must watch for the symptoms and check his BG level)

 
You should follow these steps.

1.      Check BG with glucose meter.

2.      If 70 or below - treat the low with 15 grams of a fast acting carb (juice, skittles, cake gel, glucose gel or even table sugar if that’s all you’ve got).

3.      Wait 15 min and re-check BG level if still below 70, treat with another 15 carbs and re-check in 15 min.  

4.      If he is unable to swallow you can rub cake gel/glucose gel in his mouth

5.      If he’s unconscious you must administer glucagon.

Really- Saul’s hypos have been so bad we should have used glucagon… he choked and aspirated on juice during 2 of his hypos- which adds danger to an already dangerous situation. Also… skittles would be a really bad choice for treating a severe hypo.

 

We have been lucky so far to be able to get Saul out of his hypos fairly quickly. Obviously, preventing them is the ultimate goal- however, we’ve learned first- hand that even under the closest watch hypo’s can occur.

 

 I saw this on FB yesterday:

 "Type 1 diabetes is a continuous balancing act. Imagine trying to manually control your temperature or heart rate all day, every day. It must respond and change throughout the day, but not too high or too low or you die. That's exactly what people with Type 1 are doing with their blood sugar"

 

Type 1 is truly an on-going balancing act. It’s easy to forget that sometimes folks walking the tightrope might need a hand, or a net.

Which came first...

“I just want to pet you”

Not something you typically hear (or want too-  for that matter) from those in the medical profession… like… say… your child’s pediatric endocrinologist.

(I won’t lie… sometimes I wonder who’s crazier… I guess that’s why I like her so much).

That… and… well… she gives great hugs.  

I saw this shirt today on Pinterest.

 

It made me chuckle.

It’s no surprise to anyone who knows me- or who has lived with me, that I might just have a “touch” of anxiety. Accepting the position as Saul’s full-time pancreas has in no way helped this pre-existing condition. In fact, as you might have guessed it’s only worsened the situation.

It kinda all hit on Wednesday at our 3 month A1C checkup when the apt seemed to be more about me and the state of my mental health than Saul.

“You guys are doing everything right.”

-          “But the seizures… they were so… bad”

“He’s a typical type 1 toddler”

-          “But his numbers are all over the place”

“It’s really hard at this age… but you’re doing beautifully”

-          “But food… food is awful… it’s a huge issue in our house”

“You have to start getting sleep. You need to sleep. If we have to run him high we will…. You need sleep.”

-          “But the lows… THE LOWS!!!”

“You have to see that you guys are doing all you can do, it get’s easier… it will get easier.”

 

*sigh*

A1C – 7.9 (great, thumbs up, keep it up)

Weight – 28 lbs (growing… that’s good)

Height- Can’t remember… (but growing… that’s good)

Blood pressure- don’t remember… (but fine… no worries)

Development- right on track

Attitude- typical crazy 2 year toddler (diabetic or not) as evidenced by the screamed NO’s and light-switch temper tantrum.

*sigh*

It’s not endless finger sticks, not blood, not injecting harpoon needles into thin skin, untangling pump tubing…

Right now. At this very moment… it’s the toll diabetes is taking on my mental health. It’s the crazy nature of the beast…. That you can try and try for perfect BG’s and never get them… you can go to sleep one night with excellent BG’s and wake up the next morning to a hypo seizure… it’s the constant worry (no matter how much I try to not think about) of future complications… eyes, amputations, kidney dialysis…

I put Saul down for a nap today and I gave him a cuddle and a squeeze.

Me: “Saul you okay?”

Saul: “Uh-Huh”

Me: “You feeling okay?”

Saul: “Uh-Huh”

Me: “Is Mommy okay?

Saul: “No. Mommy crrrraaaazzzzy”

Yep. That just about sums it up.

 

Oh 2013... I'm not going down without a fight.

As many of you know, 2012 was somewhat of a "difficult" year for the Grimes-Sebulsky family.

 

Not just my immediate family- but my extended family also faced a number of medical difficulties -including my Aunt's diagnosis and battle with breast cancer.

 

I had have high hopes for 2013... I'm working on my attitude and showing more gratitude. I'm trying to focus on positives and give back to all those who have given to me- because if 2012 taught me anything... it's that I was blessed to have received love, support, clothes, time, food, money, help and prayers. 2013 will be my year of reciprocation.

 

And... though the past two mornings have been extremely difficult for our family. I refuse to let diabetes take total control of our lives in 2013.

 

Saul has experienced two- severe hypoglycemic seizure-like episodes two mornings in a row.

 

I can only pray that none of my family or close friends ever witness what takes place- their hearts would break into a million pieces to see him suffering and so out of control. I feel for all the mothers and fathers of epileptic children who endure way more than what we have witnessed.

 

The first episode took place New Year’s Day. Jeff was asleep in our bedroom- EH and I asleep in the guest bedroom- Saul had gone to sleep in his bed. Jeff was the one who actually woke me up- yelling "Get in here! Come Quick!" Apparently he had heard Saul cry out... he looked in his bed, looked to see if he was with me, and was running through the house ... he found Saul lying face-down in the playroom- totally out of it.

 

Jeff and I both think lil Buddy was trying to treat his low by getting to his emergency juice on the back porch... but didn't make it. We didn’t use glucagon on him- got him up and able to drink juice- an hour later he was back to dino- dancing, car zooming and driving EH crazy.

 

This morning- (for me) - has been the worst episode to date. Jeff and I both rushed in to his bedroom to find him (either coming out of a little seizure like episode or getting ready to go into one). He was shaking uncontrollably, pupils fully dilated- he was out of it- but breathing, I held him while Jeff poured the juice down. Again- we didn't use glucagon... after 2 juices he stopped shaking and stopped crying out. After 1/4 cup of lucky charm marshmallows he was talking and laughing.

 

Because Jeff was here with me and we were dealing with it together... I think I was more upset and allowed myself to get more worked up and scared. I know this is ridiculous... but in the moment, when he has little to- no control over his body, and he sucks down a 15 carb juice in 15 seconds... I want to see immediate action... and well... it didn't happen this morning... and I just want control. I want to control him and control his body and his brain and well... I guess I should be more focused on my own actions and behaviors during a crisis situation.

 

I'm so curious how others handle seeing/witnessing/assisting hypo episodes. For the 3 (bad ones) he's had so far... I've held him and just repeated over and over "it's okay. it's okay. it's okay. it's okay."

The worst, and what sticks with me like some PTS experience is his crying/shouting/screaming out randomly "I'm SCARED!" and "STOP!" "STOP!" He's so terrified in the moment and it’s like he knows what’s happening, but doesn’t understand it- or how to stop it (not that he can) and it's so awful to watch him be frightened and not be able to help him.

 

But. You know what... He came out of it. He's okay. Daddy went to work. EH woke up. We've played dinos and cars and Let's go Fishin, and Hungry Hungry Hippos. We've watched Daniel Tiger and My Little Pony (yeah... I know... it's sad... he loves it). We've chased Daisy around the house, we've made 5 million messes, we've had a great day- despite diabetes trying to ruin it for us. We move on... We have fun. We live. That's how it's gonna be 2013... so get used to it.

Fa. la. la. la. laaaaa.... enough is enough.

Possible Blog Post Titles/Topics

 

Hospital Vacation:  

It was kinda like a special night away from home... except I spent it with a sick kid, slept on 5 inches of a bed, and wore puke-covered clothes for 10 hours straight.

 

The Feral Third:

Taken from a text I sent my friend Wayne, with regard to the thought of a "hypothetical" third Grimes-Sebulsky child... "Um. Yeah. At this point… it would be raised by wolves... or Harper... I’m not sure which would be worse..."

 

If you want him come and get him....

Taken from another text I sent out to close friends and family after debating whether or not to leave one of two -hysterical, fit-throwing children in the buggy at the store. "If anyone wants Saul... he'll be at the Hamburg Target, up front near the checkout... he's the obnoxious, screaming toddler in the middle of the meltdown… be prepared… it’s worse than Chernobyl… and he’s all yours for the taking." Apparently Mom was not amused.

 

35. 103. 101.

(No... those are not lucky lottery numbers). Last Sunday when I was the only "functioning" human in our house... I had a toddler with a BG of 35, a preschooler with a temperature of 103 and an out-of- commission-fevered husband whose temp checked in at 101.

 

WWJD?

Load up the sick, drop them off at the ER, and then quickly drive away or open a bottle of wine, partake of the entire contents, surrounded by the sick and needy.

 

2013

You will be better. I will be better. We will all be better in 2013.  

To blog or not to blog....

Each and every time I flirt with the idea of returning to work, Saul’s diabetes jumps out of nowhere  and screams “FOOLED YOU!”

*sigh*

I'll save that discussion for another post... I’m currently dealing with another bout of illness and round-the-clock –sick- care- management which means... I say to myself… “how could I ever work a full-time job when I gotta deal with this?”

I spent November contemplating my role as a caregiver, Saul’s Type 1 diagnosis, and whether or not diabetes (or my discussion of it) was worthy of a blog.  

I kept asking myself…

Aren’t there far more important and pressing issues to be discussed in the world?

Shouldn’t I just stop talking about diabetes all together?

Am I doing more damage by constantly droning on about a Type 1 toddler?

I say “I’m not gonna let T1 define him… but by constantly talking about it… am I not doing just that?

 

 

A mother of a non-T1 kid made a comment to me not too long ago. She was telling me about a lady she knew who had a T1 child. She mentioned something along the lines of “you’d never know her kid had diabetes, or that anything was wrong or different about him.” “She does such a great job of taking care of him that it’s like there’s nothing wrong with him and nobody knows.”

 

Because I overanalyze everything- my first thought was….

1.       I do a terrible job of taking care of Saul… because I’m always talking about what’s wrong with him, and everybody knows.

2.       I gotta stop blogging about diabetes… it’s like it’s all I ever talk about…

 

So I purposely decided to try and not blog about Saul and T1.

Which worked for a while…..

But ya know… it’s hard not to think about it,  write about it, let it define me, or my career, or keep Saul from doing everything he should, would and could be doing at any given moment.  

 

Diabetes is always here. It never leaves. From the moment he wakes up till the moment he goes to sleep it’s constantly checking, entering, measuring, counting, deciding, injecting, problem-solving, back-tracking, planning, extracting, worrying.

It’s a full time job…. and that’s on a good day…. a regular day… a day when he’s not sick.

 

I’m not naive. I know things could be worse. I know it’s not about me and shouldn’t be about me and maybe blogging about it all isn’t what’s best…. But sometimes I feel like it’s my only outlet.

Maybe someday Saul will look back and appreciate it… or maybe he’ll wanna kill me… either way… he won’t be able to deny…. he is a pretty entertaining character to follow.