Something Different For Everyone

"Bridget that will not cure it!"

I was mascara-ing my lashes with the oscillating-wanded Lancome black inky goodness and thought I heard some "scuttle-butt" from my two little trolls.

"It is worth a try Joe..." Bridget's response to Joe's outburst was heard over the mascara wand vibrations.

At this point, I was then "lashed-out" and ready for my day. I came out of the master bedroom to find out what was going on. Joe looked plussed. I asked Joe what he was upset about. He responded that Bridget thinks she can cure diabetes. He was not in like mind and he didn't seem amused that "the cure" was being taken on by his 9 year old sister. This is big shit! The cure. I am sure it was a little insulting to Joe that his sister thinks she can figure it out when world-renowned researchers are left empty-handed. To think his ass has been a giant (he got my butt genes) pin cushion for the past 4 years...not to mention his calloused fingers... the lows... the highs... the restrictions... the stares... the regimen... the routine... the neverending-ness of it all has been going on and on and on... and his sister now has the answer! His 9 year old sister has it all "figured out" between reading Harry Potter books and watching Phineas and Ferb! I guess he must have felt jipped somewhat.

Then...

Bridget kindly takes over the conversation (she got my gabby genes) to speak her "peace". She emphatically stated that she thought that microscopic analysis of the melted snow from Joe's boot would hold the answers that we were seeking. She went on to explain that maybe the scientists had it all wrong. "The cure" is perhaps different for each person with diabetes. What if diabetes could be cured by what people love? Joe loves to ice skate. Snow and ice should cure Joe. "Cure it, diabetes, with what they, the persons with diabetes, enjoy and love the most" is Bridget's current hypothesis. Pure. Beautiful. Deep. I get it.

And, again...

No, I am not making this shit up. She even stained the melted boot snow with Methylene Blue!

We have TWO days to fill up the Diabetes Research Institute's "Be Part Of The Cure" banner. Joe is on the right side of the "U" (about mid way up).


A day-in-the-life of the dreaming of, the supporting of, and the talking of the elusive cure.

Related Links:

Magic (Joe's wish from Santa...a CURE)

Envision The Positive (my view on "hope")

Even on CHRISTMAS

A couple of notes:

A special "Thanks" to the Houston Family for the Ornapod. It will grace our tree yearly as a reminder that we are not alone even on Christmas. Not sure why I decided to pound out this post this morning. I think it is to highlight how "d" is part of everything, everyday. Managing it does not take a "break"....even on Christmas. I wrote the "d" management parts in red (a Christmas-y and blood-y color). I am a bit twisted.

And now...the post:

My eye lids were heavy. I was patiently waiting. I was sitting and watching TV. It was Christmas Eve. The children were tucked in their beds. They were ready for slumber to ensue; knowing that when they woke Santa would have come and gone.

8pm - Joe's blood glucose is 323, a correction dose of insulin is given.

Joe is asleep. This doesn't surprise me. Just as Joe attacks his days with gusto, he sleeps with equal vigor and tenacity. Bridget is belting out Christmas Carols while laying in her bed; her eyes sparkle and dance in the dim lit glow from the lights on her mini-Christmas tree. She is excited and having a difficult time falling to sleep.

So, I wait.

By 9pm Bridget is now asleep. I am able to unleash my Santa-fury, as Dave "stands guard" watching TV. I am setting up Beyblades...I am displaying a mannequin doll head with make-up and hair accessories, damn she looks a little creepy. Gloves, candies, Japanese erasers, lottery tickets, whacky beads, Phineas and Ferb Silly Bandz, etc... etc... are stuffed into stockings. Oscar gets a retractable leash. Shit, I didn't get anything for the cat, Max. I'll have Dave scrounge him up a can of tuna or something.

I am done.

10pm - Joe's blood glucose is 190, I let Dave know that he should check him in an hour. I am afraid that Joe will continue to drop from the correction dose of insulin that I gave two hours ago.

Santa goes to bed.

11pm - Dave checks Joe's blood sugar. It is 99 and 8 grams of carbs are dispensed.

2:30am - A "Happy Christmas Eve or Merry Christmas Daddy... I am not sure which it is...what time is it" in a lispy-Joe-voice is heard, as Dave goes in for the night check. Joe's blood glucose is 59. 15 grams of carbs are given. Dave lets Joe know it is Christmas.

Joe doesn't go back to bed. I can hear pages of books being turned as he reads for the next few hours. We had a pact that no one was heading downstairs until 6am. To Joe's credit, he played and read in his room quietly for 3 hours. Impressive.

6am - Joe's blood sugar is 118. No one is heading downstairs to the basement to appreciate the "bounty" until a blood sugar is obtained and coffee is brewing!

Stockings are undone. Beyblades are battling. Freaky mannequin head doll is now made up to look like a cheap Ho. Yes, this coming from the gal who dons teal eyeshadow.

8:50am - Joe's blood sugar is 148. Dave prepped eggs, hash browns, bacon and assembled breakfast burritos. Joe's food is measured, carb counted, and he is bolused with insulin to cover the meal.

The house now becomes a massive assembly zone. The Galaxy Marble Mania takes over. Joe has two Lego projects going on at once. The mannequin doll head now gets an equally interesting hair-do to accompany her make-up job.

11am - Joe wants a sugar cookie snack. Fine. It is Christmas after-all! Blood glucose is 223. Sugar cookie is consumed. Insulin is bolused.

Bridget is now sewing, practicing her back-stitch. She hasn't broken out her new sewing machine yet...but, get ready Haitian Children! Non-stapled pillows are headed your way! Joe continues to leave a path of destruction in his wake, as every new item must be opened and assembled at a break-neck pace. Dave continues to assemble Joe's Galaxy Marble Mania from hell. The body-less, headed mannequin doll is still hanging in the living room creeping me out.

1pm - Joe's blood sugar is 170.

Joe heads outside in candy-cane stripped PJs with a coat, boots, and a sock monkey hat pulled tightly over his head. He is wielding a hammer in one hand and a sack of geodes in another. He is ready to crack open the rock cavities to view the crystal-draped interiors.

Dave continues to curse at the Galaxy Marble Mania.

4pm - Joe's blood sugar is 60. 20 grams of carbohydrates are given, as we are heading out to play hockey.

Dave just finished the Marble Run. He celebrates with a beer. Bridget is making chocolate candies with her new "Chocolate Factory".

Joe and I head outside.

We skate. Joe wears goalie pads and wants me to take shots on him. He is not happy if I don't take advantage of rebounds. He scolds me, as he states he wants me to "challenge" him. It was a blast. An hour later I head in to prepare my portion of the dinner. Dave is grilling Tri-tip. I make spicey pasta, asparagus, crescent rolls, and a salad.

5:30 - Joe's pre dinner blood glucose is 63. I have him boost with 1/2 a sugar cookie as dinner is still about 10 minutes out. We sit, we do a combined grace/toast and we eat. Pasta is measured. Milk is measured. The crescent roll is carb counted. The carbs are added. The pump is programed to bolus. A combo bolus is used to handle the pasta. Desert is eaten...another sugar cookie. The pump is programed. More insulin is dispensed.

We watched Santa Buddies as a family. The children are a bit tearful at the end of the movie. In part I believe due to the movie's message and in part because the day, Christmas, is over. I explain that every day can and should be like Christmas. To live life in such a way that your heart feels "good" in response to your actions and reactions. Bridget remains tearful.

8pm - Joe's blood sugar is 294. A correction dose of insulin is programed into his pump. Insulin is delivered.

Joe is fast asleep. Bridget is still crying. She and I fall asleep in my bed together holding hands.

11pm - Joe's blood sugar is 295. A correction dose of insulin is programed into his pump. Insulin is delivered. An alarm clock is set for 2 am ... for the next blood sugar check.

Christmas is over.

Diabetes is not.

Hour to hour, meal to meal, activity to activity, blood sugars are checked, sugar is dispensed, carbohydrates are counted, insulin is administered. This cycle is repeated in two to three hour increments...day after day...week after week...month after month...year after year... Until a cure is found.

A day-in-the-life of parenting a child with Type 1 Diabetes...even on Christmas.

Related Link:

Magic

Goalie Pads, Ice Skates, Fire, And A Low Joe Don't Mix

As I was slipping and sliding trying to help Joe sit down, I realized this was not an "ideal" situation. You know, the scenario mentioned in my title. Apparently I should have added that I, too, was on ice skates to really give you the full picture of the precariousness.

Joe had a rough day Sunday. Well "numbers-wise" it was rough. It was a day we had been looking forward to for weeks. It was a day that we had been waiting for. You know those days where you don't have to go anywhere, or do anything? It was a day where we, The Maher family, could hang out in our backyard and skate and sled and listen to Christmas music ... and ... I could carry Joe's heavy carcass laden with goalie pads ...and...I could lug a blade footed noodle legged low Joe across the ice, out of the rink, across yet more ice while still supporting his dead weight, by a fire pit, solo...with skates on.

An hour before, as I looked out the kitchen window I saw skate blades facing up. Jow was splayed out on the rink like an elongated starfish. The white texted "Maher" and number "8" on Joe's Red Wing jersey were facing skyward. Joe was facing ice-ward. Joe was low. He had been having some behavior issues on the ice and when Dave checked his number, a "61" was revealed on the One Touch screen. Sugar was dispensed. We continued to skate and play.

Did I recheck that "61" 15 minutes after we treated? You know, like the "Rule of 15s" states? Ah, I'd like to say "yes", but ... no, I didn't. We were skating. Joe was the goal keeper. I was taking shots on him. I lost track of time. We were having fun. Hell, he should have been OK...right? Dave just gave him 20 grams of sugar.

Then...

No ascending and descending in octaves "mmmooOOOMMM I FEEL LLLoooowwww!" The voice that we all know, that Joe is low "low voice".

No verbalization of the low. All of a sudden he sits on the ice and says "I cannot skate any more". Huge red flags go up and alarms go off when Joe says he cannot run, skate, sled, bounce, careen, bike, scooter, boogie board down water slides, skateboard with cones attached to his appendages. He is low...he is low NOW and he is dropping.

So...

I don't know why I didn't just leave him on the ice, but I decided to lug him to a chair...I lugged the cinder-block outfitted in ice skates and hockey gear with goalie pads across the ice, out of the rink, by the fire, and positioned him in a chair while wearing skates myself. I guess in my idiotic thought process, I felt he should be "comfortable" while low. Apparently being cold, laying down on the ice while low was not an option. There was no more sugar left in my coat pockets. I knocked on the kitchen window giving Dave the "thumbs down" signal, the one we use for "Joe is low" when we are not within audible range of one another. Dave ran out with sugar and then grabbed the glucometer.

5-4-3-2-1 and a "51" resulted...

Joe was shaking. His head was down, supported by his quivering hands. It was an ugly low. The type that, thankfully, doesn't happen too often. But when it does, you are reminded that this disease will have you down on your knees begging for mercy time and time again.

Joe and Bridget Skating...

Bridget Sledding...

A day-in-the-life of family fun, never to be let be by "D".

Joe's First VLOG

My heart is full today, full of pride, full of joy, full of life, full of gratitude. I wanted to share my thoughts on my feelings with Joe on our drive to school, after Bridget was dropped off. These days, in spite of the tremendous labor and attention to detail that managing Type 1 entails, I am grateful. I am grateful that Joe has "d" instead of other conditions that would physically prohibit his involvement in all that he loves to do. Over the weekend I was in awe of this puck shooting, blade on ice striding, snow-ball producing, sled careening, endurance of an ultra marathoner machine named "Joe", my son.

I was trying to figure out on my 7 mile run today...in 38 degree weather... in the rain ... how to write this post creatively, but not too "commercially". I share about this product in particular because it literally made Joe's life with diabetes better. It has enabled Joe to engage in all that he does with the vigor of Fabio on Viagra (oops...slightly inappropriate...and the use of Fabio may be dating me a bit).

Many of you, like Wendy from Candy Hearts , have tried them. Sarah from Sugabetic, yep, she did it too. Joe has been doing it. Nate from Houston We Have A Problem, oh heck yeah, he sports one. Oh and what about Justice from Justice's Misbehaving Pancreas? He too, has been wearing his proud. TallyGear, TallyGear, TallyGear!!! (in chanty, perky voice)

You see...

Donna, TallyGear's co-founder, has done it again, she has improved upon a phenomenal product by collaborating with my sister, Tara the ultra marathoner. The Tummietote now has a "sporty" sister. No worries, the original is still available, but for those athletes out there...or those active (ahhemm...throat clear here) children that are cruising up and down sled hills, bombarding soccer balls down green, grassy fields, or lighting rinks on fire with your blades of glory ... this is another sleeker, non-torso climbing option for you.

The TallyGear SPORT Belt

Joe, sporting the SPORT Belt with TWO clear windowed pockets, one for his pump and one for his Continuous Glucometer Receiver

Joe WEIGHS-IN on the Sport Belt!

I LOVE HIS VOICE! HATE mine! And...NO...he didn't learn his dance moves from me.

Tara, or ULTARA as she is now known, is having a TallyGear Giveaway that just got even better...go check it out at Mommy's A Runner! You have until December 16th to enter. Good Luck.


To double your chances of receiving quality goods for "F" "R" Double "E" head over to TallyGear's current Giveaway. It lasts until December 17th.

Or go to Tallygear.com to order pump packs, sport belts, and/or headbands.

********

New to BETA BUDDIES?


Well, here is a little background on Donna and Tallygear and our love of the product.


It took us 4, yes F-O-U-R long years to find a pump pack that fit Joe's needs as an ACTIVE little boy. Every time Joe would run, jump, careen, skip, play soccer, participate in baseball it would break my heart a little to watch his damn pump and pack bounce and jiggle up and down as he was out living life to the fullest. Though he never complained, the "pump jiggling" bothered Joe. I am happy to report this is a NON-ISSUE any longer.Why?Because Tallygear is on the job.


Tallygear was started up by a mom just like us. The company is named after her daughter Tally who was diagnosed with type 1 three years ago (click here for her story). See the following written by Donna (Tally's mom and co-founder of TallyGear) to understand why this woman and company are so near and dear to my heart:

"When Tally first got her pump pack I did buy from 2 other
companies...they were the web belted ones and they were cutting in to her sides
and jumping on trampoline was a disaster (holding that freaking pack while she
jumped.... as I cried).....next step a trip to Walmart to buy a spandex shirt I
knew I could come up with something ...I just didn't know where it would all
take me......you now know how that all worked out... ...a.k.a.Tallygear. Almost
2 years ago now...."

What is different about these packs you may wonder. Well let me tell you...because I have tried the whole INSULIN PUMP PACK GAMUT in 4 years SEARCHING for the PERFECT PACK. First off you can order XS, S, M, or L. For those of us with young children with "d" you know how difficult it can be to find a pack that fits appropriately. Secondly, this pack STRETCHES 4 (that's right FOUR)ways. This keeps Joe's pump secure and flat against his body. There is NO MORE BOUNCY pump/pack action as Joe runs and plays. Also, the price for these packs is REASONABLE! I have hit the pump pack JACKPOT. For CGM users and/or people who want to bolus but don't want to remove the pump or CGM from the pouch, a CLEAR WINDOW can be sewn into the pockets.

A day-in-the-life of sharing about our friend Donna.

Pickle Jars on Scooters! Stapled Pillows for the Haitians!!! Oh MY!!!

Her plans are big-hearted. Her heart runneth over with love, emotion, and the desire to help others. She is sweet. She is sensitive. She is animated. She can hit a pitch with her piercing screech that makes me want to birth a porcupine (thanks Elizabeth from Pieces Of My Life for a term I wish I came up with) rather than listen to it for one second longer.

Her ideas fly off of her tongue in rapid succession...one after another... barely a breath in between... her ideas to help Cure Diabetes... her ideas to help the Haitian children... her ideas to provide food to the hungry... her ideas to comfort children in the hospital. She is Bridget. She is my daughter. She is my first born. She is Joe's sister.

Sherry from Jenna's Pet Monkey and Alexis from Justice's Misbehaving Pancreas declared November 28th "Special Sib of a D Kid Day"! I am a little "tardy to the party" on this one. I apologize. I have some great Bridget posts and I am always wanting to share more about this amazing creature that has graced my life since August 8, 2001.

The Staple Story...

Her dreams and goals and desires are huge! Help the Haitian kids! Sure she is on it. Never mind that her idea, a good and kind-hearted one, had some flaws. She wanted to ship over a bunch of homemade pillows. She had started making them with 12inch squares of fabric that she stuffed and then proceeded...unbeknownst to me... to staple them together. Yes, I said "staple". So, great plan. However, the mechanics of the plan... you know, the "staple part", not so much. When she proudly displayed her finished "stapled" pillow product to me, I had to stifle my laughter. Can you just imagine those poor children laying their sweet heads down on these small staple-laden pillows? OUCH. Or, I was envisioning the Haitian kids waking up from their restful night with pillows hanging from their heads, as the staples would most likely become entangled in their hair while they slumbered. So, let's just say a sewing machine is on Bridget's wish list for Christmas this year.

Then there is the Pickle Jar on the Scooter incident...

How to even begin ... how has this life affected her? changed her? She is a willing participant in Joe's care, always desiring to learn more: how to check Joe's blood sugar number, how to bolus, how to carb count. She takes notes on his numbers, transcribes the "Diabetes" section of the World Book Encyclopedia into her polka dot notebook, and diligently studies the Calorie King. She once taped a glass pickle jar to her scooter and went door-to-door, again...unbeknownst to me, collecting money from neighbors for diabetes research...a sign asking "Please help us find a cure for Type 1" secured to her handle bars. I explained that a glass jar taped to the scooter that was cruising up and down the 'hood, over uneven cement pavement, was perhaps a dangerous choice for obvious reasons So, that ended that round of fundraising for her. This was no matter. You see, she has a whole list of back-up ideas and plans: selling tattoos, a lemonade stand, coins for a cure, cans for a cure...and on...and on.

This disease has had an impact on each of us...perhaps on Bridget most of all. The guilt weighs on me as a parent, it is heavy, it takes its toll. It hurts to be unable to shield her from the unfairness of the attention Joe receives with the day-in, day-out, hour-to-hour care and vigilance that type 1 demands of us...demands of us as a family. I know it is what it is. This is our journey, our story and it is meant to be. I hope we, as our story unfolds, as it progresses, and in the end...are the better for it...especially Bridget.

A day-in-the-life of celebrating my girl!

Other Bridget Posts:

GUILT

The Unsung Hero

BLINK (The No D Day Post)

Life's NOT FAIR...Suck It Up!

"Life's not fair...Suck it up".

Ah, yeah, this is sometimes my "parenting tactic" when dealing with sibling squabbles and whatnot with Bridget and Joe. Not very original I know. And, perhaps it is a little too cut and dry. I think I use it because it is true and sometimes it is the easiest way to convey "Knock off the bickering"... "I am done with you two bickering" ... "If there is more bickering, I'll give you a real reason to bicker about" ... and so on.

Let me preface the remainder of this post with: I have it good. I live a charmed life. I do. I can pick and choose when and if I am going to work a nursing shift at the schools. I am available to my children 24/7. I live in a comfortable home. I have the time to exercise daily. I have the time to cook healthy, homemade meals for my family. I have it good. My children have it good. My husband has it good. Joe's diabetes is managed to the best of our capability. He is "teched-out". He has access to the latest and most advanced tools in the industry. We are definitely the diabetes "haves". I am thankful for this.

So...

Why do I still cry?

I am fortunate... My family is fortunate... Joe is well cared for...

Why was I sitting rink-side two nights ago with tears sliding down my cheeks? You know the tears where they are literally flowing and you are unable to talk for fear that you may start sobbing. So... I sat, tears flowing. So... I sat, trying to regain composure; dabbing my eyes while trying not to smear my teal eyeshadow...no worries on the mascara; it was waterproof. So... I sat crying like a big fucking baby ... I was sitting between two "Hockey Dads". Poor guys.

I know I have touched on this in a couple of posts over the past month or two. I feel I am hitting a new phase of dealing with diabetes in my life and, more importantly, in Joe's life. You see, the "Numbers Game" doesn't throw me much anymore. Sure, the almost "passing out" from a low in the furniture store between the handsome chest of drawers and the king-sized bed display plussed me a bit. Joe crying in misery while waiting for a 38 to rise makes me take pause and cry and blog and cry some more. And damn if a week or two straight of highs doesn't feel like someone is poking hot ram rods into my eyeballs and shakes my confidence to the core. These things (the "numbers") I study. I tweak. I study. I tweak some more. I wait. I watch. If I am lucky they work themselves out in a week, or two, or three.

The phase, this new phase of "d" in our lives is I am realizing ... just now mind you ... that everything in Joe's life is gonna be a bit of challenge. Wait, let me re-phrase that. I am becoming aware that Joe is going to have to work harder than most of his peers in his daily life. I am just now seeing how his numbers are affecting his performance physically and intellectually. I think when he was younger it didn't matter as much. He wasn't taking spelling "assessments" (politically correct term for TEST). He wasn't playing hockey four times a week. He was just being a preschooler, a little boy, a kid playing. Now it seems things are changing a bit and this reality is there rubbing me the wrong way. It is grating on me a bit. It makes me sad. I feel like he is starting out life behind the "8-ball". And. Again. I am left with some uncomfortable emotions. Jealousy is one of them. Jealous of all the kids around Joe that have every physiological advantage to be present in the moment mentally and physically. That isn't always the case for Joe. It never will be.

It isn't fair!

WAH ... !!!

I know, follow my own words of wisdom... "Life isn't fair... Suck it UP"! And I am, "sucking it up" that is. It isn't as easy as I make it sound when yelling it at my kids. Meri's post yesterday helped "snap" me out of my funk. I am gonna keep trucking along with Joe riding the highs and the lows, while ensuring he lives his life to the fullest. The big picture? What about it? I cannot just stand back and take in the big picture of diabetes in Joe's life right now. It is too daunting.

A day-in-the-life of being a BABY... WAH... WAH.