Wednesday, December 29, 2010

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")

Sunday, December 26, 2010

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:

Tuesday, December 21, 2010

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...

video


Bridget Sledding...

video


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

Monday, December 13, 2010

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!

video


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.

Saturday, December 4, 2010

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:

Wednesday, December 1, 2010

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.

Friday, November 5, 2010

MAGIC



The end of a medical condition.


To be healed.


The elusive CURE.


Joe was going through his "Santa wish list" the other morning while I was driving him to school. Many of his wish items weren't a surprise to me. Balls, pucks, sticks, nets, another marble run set, books, etc. came rattling off his tongue. He was contemplating how Santa made all of the toys, how he obtained plastic, how he assembled them. He then started talking about Santa's "magic" and how Santa can "magically" obtain those "hard to get items" or those items you thought were spatially impossible to load on the sleigh, or cram through the chimney, or to position in your home.

As Joe is just yammering on and on and on about Santa, I am listening. I am trying to take note of any items that are "must haves" from Santa. To be honest, I am also thinking a "for f*ck-sake it is the day after Halloween dude and already we are moving onto Christmas?". My profane thought feed sequence was then abruptly stopped, when I heard Joe continue to talk about Santa's "magic" and his biggest "wish" was for a CURE. And. He thought maybe, just maybe, Santa could pull that off. A CURE.

*Gulp*


*Big Swallow*


In the four years since Joe has had Type 1 I have always been very cautious in this territory. The "Cure Territory" is dangerous I think. Have we participated in JDRF WALKS? Sure, absolutely, whole-heartedly. My husband has chaired two of them. Our family has volunteered our time to help organize three of them. We have assembled large teams. We have raised, thanks to our friends and family, tens of thousands of dollars over the years to help "fund a CURE". I have always been careful in what I say around Joe during the fundraising, the letter writing, the Walk Kick-Off Luncheon, and in general about a CURE. You see, I have never wanted him to think there is anything "wrong" with him per see. I have never wanted him to think something about him must be changed or fixed to make him "right". I have never wanted him to count on a CURE in his lifetime. I don't want him to be disappointed.

My hope flickers like a candle in the wind. Sometimes it burns strong when the wind lets up a bit, but for the most part it is a slow, barely visible burn. I have posted on my hope for a CURE. Here is part of what I had to say...


....I think "hope" means different things to each of us. It is a personal thing
to choose to have hope, what one is going to have hope for, and if they are
satisfied with the journey of having hope.

For one to have hope they need to be able to envision positive outcomes and
they can even see the pathways in which what is "hoped for" is achieved. Many
persons with diabetes have said to me that they have been "promised" a cure for
years. "A cure is just 5, 10, 15 years away". Years and decades come and go, yet still "the cure" eludes medical researchers.

I look at the path of hope and the path to a cure as a "stairway". You
need to have your footing on each step to progress to the top, to your
destination. With each discovery regarding type 1 treatment, with each finding
of a new technology, with each failed "cure" scratched off the list of what
researchers are currently working on we take a "step" up the "stairway" of hope;
up the "stairway" toward a cure....


So, back to my dear Joe. He is practical. He is mature in many ways beyond his years. I think in his heart of hearts he knows there is no way that even Santa can muster up a CURE. But, together, someday, sometime, maybe not in my lifetime, possibly not in Joe's lifetime, but in future generations perhaps the elusive CURE will be found. In the meantime, we must all work our way up the "stairway" one step at a time. Research must be funded; potential CURES investigated; failed theories crossed off the list; new hypotheses studied; more trials conducted. Each trial, each tribulation, each setback is a step in the right direction.

So, after I visited Karen's Bitter-Sweet yesterday I asked Joe's permission to place his picture and his story on the Diabetes Research Institute's Banner for a CURE. Joe was "in" on that action.

Here is the photo with what Joe wanted me to type.. Go check it out.


A day-in-the-life of working and hoping our way up the "stairway" to a CURE. To "magic".

Monday, November 1, 2010

"Mom, I OVER-DID MYSELF"...


It seems, no matter how hard I try to convince myself and others that we can live like "everyone" else... we cannot. It doesn't make me sad any longer. I don't even know why I try, honestly, to pretend that type 1 doesn't change things for us. It does. It is a fact. It is what "it" is.

While watching Joe gyrate like and electrocuted squid during a game of "Freeze Dance" at a Halloween Party Saturday night, my son's vigor for life reminded me of myself. To the Maher side of the family, it resembled my "mexican jumping bean on crack" dance at Megan and Santiago's wedding this past summer. Joe lives life to the fullest. He immerses himself thoroughly into anything that looks particularly "physical" , "dangerous", or "mischievious".

Parties tend to be difficult for Joe from a blood sugar management standpoint. Not only does he partake in foods that he would not normally consume, but the activity component comes into play as well (an 80% reduction in his basal insulin AND extended boluses are frequently utilized). The said Halloween Party was no exception. Joe consumed about a cup of apple cider, a doughnut, a cookie, and half of a cupcake and then proceded to dance his little heart out. AND. I don't just mean move around a little here when I say "dance". Every hair follicle, eye lash, phlange, cell, and...well you get the picture, was involved in Joe's uniquely constructed gift of movement.

He became sweaty. This is Joe's "norm". After hockey - sweaty. After PE - sweaty. After recess - sweaty. Sleeping - sweaty. Dancing - sweaty. This is not a reliable indicator of a low for Joe. However, the sweat-laden Joe came over to the clown glasses-donning witch, otherwise known as me, to let me know we should do a blood sugar check. He was 113, with a hell-a-lot of IOB (Insulin On Board - based on the time and quantity of the last insulin bolus, the pump software keeps track of the insulin remaining in the bloodstream). No problem, more cider for Joe. Joe resumes with the dancing. I continue to watch Darth Vader and the crew enjoy themselves by spazzing out to the beat then "freezing" as silence took hold.

Fast Forward 20 minutes, give or take ----> -----> ----------> ------------------->

Joe is splayed out on the dining room floor, head in my lap, pale, pasty, sweaty, limp. His blood glucose is a mere 61. Not a shocking low by any means. I guess the 15 grams of juice he consumed 20 minutes prior helped alleviate a larger drop. I am now, once again, a fucking life sized "witch" PEZ dispenser pumping out glucose tabs like the Duggars produce children. Nausea then clouds the picture. Joe is gonna "blow" according to his body language and his complaints. Good friends scurried for barf buckets. Barf bucket cradled, I am hoping the puke-fluke fades. I am not wanting to break-out the "icing to the gums rub technique" or any "Glucagon Mini Dosing" for the party-goers. Luckily the nauseousness subsided. Joe felt well enough to walk to the car. We headed home.

As I tucked the Evil War Lord...ahemm Darth...Vader... Joe into bed. He states in his slightly lisp-kissed sweet voice, "Mom, I over-did myself tonight". I explained to him that I knew how he felt. Vigorous dancing with a full stomach can make mommy feel like "death ate a cracker". Furthermore, I cannot even imagine how a low thrown into that nasty, crap-on-a-stick feeling compounds the symptoms.

The night then delivered highs (up to 403) that would correct and then would skyrocket. Joe woke in the high 380s, with large ketones, before hockey practice early on Halloween morning. More insulin was given, water was pushed, and Ketones were minimal with-in an hour... Joe still wasn't feeling right and only lasted about 15 minutes on the ice before we packed-up and headed home. I don't know if he was fighting something or if it was the continued carnage from the party.

I am beginning to realize that Joe is going to have to work just a "bit" harder for all he wants to "squeeze" out of life. Whether it be fun events, physical challenges, or intellectual hurdles ... life isn't just gonna open up for Joe to just live it. He, and we, are gonna have to work that much harder to reap the rewards. Unfortunately, at times like this I am left with some uncomfortable emotions to deal with. Once again, I find myself feeling a little bitter at the unfairness of it all. For Joe. It isn't a gracious quality. I find comfort that Joe seems to take it in stride and I hope I will continue to learn from the example he sets.





A day-in-the-life of LIVING with type 1.

Wednesday, October 20, 2010

The Hidden Truth


And,

Once again we are left with the raw, unsettling reality.




Sadness doesn't begin to describe ...

A heavy heart doesn't "cut it"...

A deep sigh isn't enough to even budge the weight...

Type 1 Diabetes took another young life last night. It could be any of us really. Any of us could be this grieving family today. This could be our reality. It is scary. It is sad. It is unthinkable.

I know I usually try to keep it "light" on BETA BUDDIES. I try to add a little comedy to our days and our sleepless nights. I know that I may offend some. Please understand that I am trying to make managing diabetes a little more bearable for us all. Because, no matter how much I "sugar coat" it, no matter how many "for fuck-sakes" are typed to be "muttered with exhalation", and no matter how simple I make it sound or how upbeat I try to be... this is the painful truth.

Type 1 diabetes is difficult, at best, to manage. It is not a beast to be "controlled". It can kill. The medication used to treat type 1 Diabetes is insulin. Insulin is a hormone. Insulin is deadly if too large of a dose is given. Insulin can cause seizures, coma, and even death. Insulin is the only treatment for type 1 diabetes. Without insulin, persons with type 1 diabetes would die.

Diabetes affects EVERY organ system in a persons body. These people look totally "normal" from the outside, while this disease wreaks havoc on their vasculature and organs.


The "invisibilities" of this disease are like a double-edged sword. On the one hand, I am thankful for Joe's "normal-ness" in his appearance. His ability to run, jump, skate, bike, scooter, gallop, skip, and careen astounds us all. I am thankful for it; truly I am. On the other hand, what is difficult; what sucks; what is painful is that the very thing I am grateful for is the very thing that detracts on why a cure is so desperately needed. It takes away from all that is done "behind the scenes", hourly, to ensure Joe's safety and wellbeing. The hidden sequella of it all can lull you into a false sense of comfort. It can lull the public into the inaccurate perception that we "have it under control".


We don't.


The news of the death of this child could be about The Mahers...about Joe. It could be about any person with type 1 diabetes and their family. That is the cold hard truth. That will remain the cold hard truth until a cure is found.

Diabetes is deadly. Diabetes kills. Diabetes increases morbidity and mortality.

A day-in-the-life of mourning one of our own.

Links:

Monday, September 27, 2010

WELCOME TO MARS!

NaBloPoMo: Day 27 (Just.3.More.Days!)

Have you ever been curious about what each of our homes look like? What does Meri's new house look like? Hell, is she even unpacked yet? Where does Heidi blog from? Where is Joanne curling up to catch this season's Amazing Race?



I am curious, I bet you are too.

So, today, for a lack of much to say due to my compressed and ischemic creative brain cells slowly necrotizing from the mucous influx and extreme "eyeball-popping" pressure after a pitiful attempt to do "Plough" during Yoga X, I am going to show you around our home.



The Maher's New (to us) Home



The Mudroom (10' by 18' of pure awesomeness)




There is so much space in this puppy that I decided to add a kid's craft/science center.


WTF? Seriously look at the nasty water.



Ah, yeah a jawbone from a cow? moose? We don't know. Any thoughts?


Joe made a snow globe out of a baby jar, and scrumpled up tin foil....hmmm.


The Kitchen



Grand Central


Grand Central with Joe's Log...the orange highlighter is HIGHS/blue is LOWS.



Our Family Contract...Note: the "no whacking with a shovel" - Joe's idea.



Laminated Allowance Expectations




Where all the "Blogging Magic" happens. AND where "Pancake Ass" takes place from the long blogging hours I have put in this month.



Dining Room



Cute Broom Closet

Let's open it and see what is inside...

Oh look, it's a sharps container! What home is complete without one?



Oh and in pantry #2 we have more "d" supplies!



My favorite painting. Bridget thinks the blond girl looks possessed.



My favorite family photo...


The T.V. Room


The Screened-In Porch



More treasures... remember all of the boxes of rocks I moved?




Saw this guy as I was taking pix...couldn't resist. Funny how Lego people cannot look violent even with a machine gun in their hand. Why is that anyway?



More of Joe's creations.



Home Theater (in the basement)



More "d" supplies



And a few more....



A day-in-the-life of the Maher's (pronounced "Mars") at home. Thanks for dropping by!

Saturday, September 25, 2010

THE MAN, BEHIND THE WOMAN, BEHIND "THE BUDDIES"

NaBloPoMo: Day 25
Special thanks to Misty's MeMe post, Cindy's candidness, and Renata's gracious post for giving me the courage to post on my husband and our relationship with "d" in the mix.


Nyquil, Ibuprofen, Afrin, Advair, and Xopenex are my best friends. Well, I take that back, my husband is my best friend. He manned the house, kids, dinner and movie night while I was medicated and sedated for the previous 13 hours. My drug-induced medicinally-crafted sense of wellbeing has me upright and ready to post this morning. I have decided to share with you, today, about my other half. Not necessarily my better half, come on, you guys knew I wouldn't give him that much credit. I am your vain Portuguese Princess after all. I think with Dave and I, the sum of our halves equals a pretty spectacular, synergistic whole.

Our complements are by far too numerous to list here, but off the top of my Nyquil infused, fogged brain here we go: I am flamboyant, he is reserved. I am a laborious work-horse, he knows when to "take it easy". I am emotional, he is even-keeled. I am a social butterfly, he tends to keep his social circle tight. I hate to shop, he is my grocery store and Costco monkey boy. I like things tidy, he is somewhat of a slob. I am carefree with the children, he is a little uptight. He keeps tabs on the family finances, I could not be bothered with such mundane details. I am the full-time pancreas, he will step in when needed. He sits with the children to teach them "important" life lessons, I am more the "day-to-day" manager of the crew. He is 110% about anything he feels passionate about, I am more like 85% about everything. I would do anything for our family, he would do anything for our family...

and he does...

This man works 50+ hours a week to provide for his family. He leaves the house with a smile on his face, a positive attitude, always looking to make it a good day. He picks-up the night time blood glucose checks on the weekend to give me a break and will often take over during the week if my work schedule fills-up. He loves to laugh, he loves computer games, he loves beer, pizza, and hockey. He rarely complains...only if it is hot... I won't go into his hyperhydrosis issue. He recognizes when he needs to change, to improve upon something and he does. He is open to criticism. He actually welcomes it and he utilizes it to improve upon himself. After my Food Rage with the Shrimp Guy in the Buffet line post (a good one, by the way), Dave stepped it up, and has learned to take Joe out to eat without me! He makes me feel loved, accepted, and adored. He loves me unconditionally even when the "Bitch Switch" is ON. He has been loving me for over half of my life now. We met in 1990 as freshmen in college and have been together since (sans one tiny break-up). I would not be who I am today without the love and support of this man.

When we were discharged from the hospital after Joe's diagnosis, a nurse gave me a book. This book had nothing to do with the pathophysiology of Type 1, it had nothing to do with the rigorous management that this newly diagnosed condition required, it had nothing to do with the latest and greatest research. It was a book about how parenting a child with type 1 can affect your marriage.

Huh?

Funny, at the time that baffled me.

I was somewhat prepared to lance, poke, expel blood, read meters, measure and weigh food, and inject my son with insulin, but I was not prepared for strain on my marriage. The thought had not even crossed my over-loaded, fact-burdened mind. There it was. In black and white, the day-in and out strain on a couple managing type 1 in their child causes rifts, strain, separation, resentment, the list could run on and on I am sure.

While I read this book, 2 days after diagnosis, I would think "not us", "heck no", "Dave and I are a team to the end", "this book is talking about other people", "we are as solid as they come". And we are, we were, we will be... "solid", "durable", "dependable". Have we stumbled? Sure. Have there been times where I felt resentful? Hell, yes. Have there been times where I have kicked him out of his peaceful slumber to do the night check because I cannot lift my weary head? Absolutely.

For the first couple of years after diagnosis the previous question and answer session would not have occurred. BUT, like water seeps and wears and carves the rock of this earth, diabetes seeps into everything, marrs relationships, ebbs into our interpersonal connections, especially marriage. I like to think this is normal; that Dave and I are like many of you. We carry on, we balance busy lives in addition to the daily rigors of "d", and that perhaps we will emerge a more loving, caring, cohesive team through it all.

"D" minutely seeping, carving, transforming everything, everyday, during my day-in-the-life parenting a child with type 1 diabetes.

Wednesday, September 22, 2010

JOE's CHOICE WEDNESDAY: Bacon and Cabbage Savage!

NaBloPoMo: Day 22

WHAT?!

You people haven't seen "Onion Goggles" before?


OK, It is hard to add humor to bacon and cabbage, so I had to show you a pic of me in my onion goggles (thanks Sunshine Grandma).


Last week our visit to to CSA, Bread and Roses Farm, produced a head of what I believe to be Napa cabbage. On my drive home I was trying to figure out dinner and what I could come up with using our newly acquired farm fresh produce. A mental checklist started to materialize:

Bacon - check
Cabbage - check
Onion - check
Garlic - check
Diced Stewed Tomatoes - ohhh I hoped

As luck would have it, the diced stewed tomatoes were a "check".

Ingredients: As above...although, I guess I should add how much and what to do to the ingredients before frying them up, like a pissed off Killer T-Cell hot after our children's insulin producing and secreting beta cells.

Bacon (1/2 a package)- chopped up in like 1 inch pieces
Napa or Asian Cabbage (1/2 head) - chopped thin
Yellow, or what have-you onion (about 1/2 medium bulb) - diced
Garlic (4 cloves) - minced
Diced Stewed Tomatoes - one 15 oz. can

Directions: Cut up bacon into about 1 inch chunks and fry, stirring occasionally.

Once the bacon is cooked and crisp, add in the onion and garlic, fry until the onions soften.


Now add in the can of diced, stewed tomatoes and the chopped cabbage. Cover. Cook on medium until the cabbage becomes limp (like a beta cell defunct pancreas).





Serve in a bowl with hearty bread. This flax bread recipe goes well with this hodgepodge of a goulash.



Joe loved, loved, loved this recipe. He told me that I have the best "imagination" ever to come up with it on the fly. I actually just tweaked my friend Susy's recipe which is essentially the same ingredients, but it uses ground turkey or beef for the meat source.

Nutritional Information: SWAG it baby (thanks Lorraine). I carb counted it at about 6g/cup, which worked well with Joe's current dinner ratio.

A day-in-the-life living as a bacon and cabbage savage.