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".