Some Ding Dang Blunt Honesty

What he was expressing isn't emoted often. It's rare for him to complain about t1d.  He truly just goes about his day-in-the-life of teenager-hood like a teenager-y boy in a teenager-ish manner.

Being a Teenager

About a week, or so, ago...

Perhaps it was because he does most of his care now.  Maybe it coulda been because he was being a typical 14 year old boy.  And it most definitely could have been because I scheduled his annual lab draw, a flu shot, his Endocrine appointment, and a 504 meeting all on the same day.  I forget - it's alot....type 1, it's management, and the crap that accompanies it.

He was slumped over and apparently taking a "nap" during our 10 minute drive to his Endo appointment.

I was definitely resembling a chatty, perky, 40-something-year-old, mom-type as I rattled off questions with a brisk tongue; trying to engage in some sort of meaningful conversation with my boy.

He hardly responded to me, as in I mean there were moans, groans, and single syllable words used.  I think I was  annoying him.

'Joe aren't you happy you get today off of school?'

A ..'For sucky reasons' was mumbled.

'It's not so bad.' An attempt to encourage him to be more positive was made.

Joe then sat up straight and and then set me straight.  'I get to go get my blood drawn, get a flu shot and see a doctor about a disease that I don't want....I then get to go sit in a conference room ... with a bunch of my teachers ... and discuss the disease that I don't want.  It's the worst.'

'I can think of worse things.' I then mentioned something about death, death of loved ones, and maybe squeaked in the death of his beloved dogs all being way worse than his day with the disease that he doesn't want.

His response...'it's the worst that I've experienced in my life, so far.'

Good point.  I wish I'd keep my mouth shut sometimes.  As we chiseled our way through the diabetes "to do" list, his attitude improved. His A1C - 6.9.  He had some insight into his 504 Plan and discussed it with his team.  He was back to "the Joe" I typically see.

Blunt honesty about his day-in-the-life.

The Game

5:18 am - no signal on his CGM.

I should check him.  If he is high, there is plenty of time to correct; a little over 5 hours.  I was careful not to wake him. He needs his sleep; especially today.  I lifted his ring finger and pressed the lancing device firm to his finger tip, hoping to avoid the need for multiple pokes to get a blood drop.  He was 386.  Not a great number.  I corrected and plodded out of his room and down the stairs.

Was the ringing tinnitus?  Or his POD?  I went to the bottom of the stairway and didn't hear anything, so assumed it was me and my aging ears.

5:38 am - Joe came down the stairs.  The ringing was his POD; it failed. The beeping from the POD woke him.  He's up.  It's game day.  It's State Championship game day.  I hate diabetes.

Joe changed his POD.  We bolused for the portion of the correction not given, due to the failure.  Joe ate; bolused for that too.

Around 8am - BG remained 386; a correction was given.  There was still 3 hours until game time.

9:30-ish am - BG 156. Two juice boxes (44grams CHO) were chugged in the car en route to the rink.

10:10 - BG 171.  Skittles (a fistful) was consumed.

10:50 - BG 263.  A good place to be for Joe to play the game.

All this work.  *sigh*

All this work...he endures daily.

He went down in the first eight minutes or so of the game.  His hip had been an issue the prior week.  It popped while he was skating and he went down.  The game was paused, while he removed himself from the ice.  He hobbled off the ice, off the bench, and into the locker room.  When I got to him...tears.  He was removing his pads; they were forcefully chucked into his bag.  Win or lose, more than anything else... he wanted to be playing with his team.  He watched the remainder of the game from the bench.  His team was the Runner Up for the State of VT; they lost the state championship 2-1.

I wish I didn't feel like this.  I wish I could just write that we've got this.  I wish I could say we are warriors and nothing gets us down.  Frankly, I'm disappointed for him.  And.  I feel a bit bitter.  He endures enough...just to get to the stupid game.  Sorry.

His blood sugar after the game, after all those carbs and then not skating...126.  Nice.

Kinda pissed off about the day-in-the-life.

No Boluses

Last night...

In our kitchen...after dinner...Joe with a smidge of a smudge of Ranch Dressing on his cute chin...

Somewhat outta the blue...

Joe:  "So I would die without Insulin?"

Me:  "Yeah...not immediately ... but eventually..."

* (uhhh ... ...  would it take days?  weeks?  I hope he doesn't ask.. please don't ask...please don't ask) *

Joe:  "So, before Insulin was invented people with Type 1 Diabetes died?"

* (thank you ... ... not asking... not asking) *

Me:  "Yes, they would."

* (I will not go into the uplifting "Death By Starvation, Dehydration, and Acid-ation" talk right now) *

Joe:  "Gosh, I just want Diabetes to be CURED."

Me:  "Can you even begin to imagine? A CURE?"

Joe:  With eyes wide and a smile tweaking his lips "No boluses, only checking!!"

It is here where my heart broke a bit.  I am not sure if it is the way his face lit up when he said it or if it was the fact that taking away just one portion of the care was a CURE to Joe. 

Conversations with Joe during our day-in-the-life of living with Type 1 Diabetes.

Our Parenting Conversations Are Different

Six years almost.  Six years since Joe has been diagnosed.  It is strange how a certain acceptance has developed.  As I send him out on his bike, on in-line skates, on foot into our community, as I tuck him into bed at night, as I drop him off at school ... a teeny-tiny part of my heart and my brain is always aware and somewhat prepared for the possibility that I may not see him again. 

The kids were out in the 'hood playing with their friends.  Joe was squirting a hose into a gaggle of girls squealing their protests.  I was prepping dinner by laying out the leftovers on the kitchen island.  Dave walked in from his day of work.

This was last evening.

Me:  "Good day?"

Dave: "Yeah..."

*Or I think he said "yeah".  I was only half listening.*

Me:  "Kids had a good first day of school...Bridget loves middle school ... Joe said his day was boring...blah...blah...blah."

*pause*

Me: "A child died last night.  Seven year old.  Diagnosed at two.  Low or Dead In Bed.  Parents slept through a night check alarm. Found him in the morning."

Dave: "Can you imagine?"

Then, we went there.  We went to a place we haven't gone.  Actually, it is something I had not thought about; one of us blaming the other for a missed night check and a gone Joe.  We are human.  We need sleep.  This family is facing our worst fear; the death of their child.  The night check ... done or not ... may or may not have prevented this death.  The thought of struggling with "the blame" and "the guilt" while dealing with "the grief" is overwhelming.

Me:  "We would not blame one another... would we?"

Dave:  "How could you not 'go there' ?"

Me:  "I guess you are right ..."

A day-in-the-life conversation between my husband and I, as we parent a child with Type 1 Diabetes.

His Pancreating Ways R Driving Me Cray Cray!

"Owww...HARhumph .... MOM!!!  You are talking way too loud!"

Joe and I were on the phone the other day.  He has a new Tracfone.  Dave and I had bought it for Joe as a safety-net as he undertakes all of his various endeavors before and after school, while playing with his pals in the 'hood, and all of Joe's what not.

Joe was calling me from his friend's house.  He and his friend were about to eat a snack.  Our plan was that he was going to call me with a blood sugar number and a carb count and an activity report to calculate how much of an insulin bolus to give.

Back to the convo....

Me:  "Joe, I don't know what you are talking about.  I am talking "normal"." (using an extra calm and soft, soothing voice ... yes, I have one of those)

Joe:  "Oh...I put it on speaker...oops...gonna keep it there though.  My ear is sweaty."

***Ewww****

Joe:  "We are gonna eat a snack."

Me:  "How many carbs?"

Joe:  "29"

Me:  "What was your number?"

Joe:  "Huh?"

*seriously?...how many years have we been doing this?...eye-roll...no sigh...trying to be somewhat of a good parent and pancreas all at the same time... which, by-the-way, is not easy*

Me: "Ah...did you check a number?"

Joe: "No."

Me:  "JOE, check a number."

Joe:  "OK"

*muffled voices, screams, laughter...he is having a good time*

Joe:  "101"

Me:  "What is the snack?"

Joe:  "A Popsicle-y thing."

Me:  "Is it all Popsicle? OR is there some ice cream involved with it?" (If it were all Popsicle, I would only have him cover 10 grams max.  Between the activity level and the glycemic index, Joe tends to drop like a rock when I fully cover Popsicles, juice, and the like)

Joe:  "It is like an Oreo Ice Cream Bar."

Me:  "OK...bolus for 20 of the 29 grams."

Joe:  "Bye Mom"

**********

Not sure what is going on with Joe these days.

We have been doing "Diabetes" for roughly six years now.  The last month or two have proven to be a bit difficult as Joe's independence with diabetes and "life" in general is expanding.  He meanders the 'hood on his bike visiting friends and looking for "work".  He started a Lawn Care business with his friend (his motto is "We put the CARE in Lawn Care" ... catchy).  The playdate, mentioned above, is the fifth home that he has ever gone to without me, his portable pancreas, in tow.  It is the first place that I did not train the parents in preparation for his stay.  I am becoming more and more comfortable with letting loose a bit.  He always travels with sugar. He has the phone.  He is with a friend. We always discuss, double discuss, and triple discuss our "plan" regarding blood sugars and diabetes management.

We are running into some issues though... 

1)  He isn't checking his blood sugar before he eats.

2)  I am getting frustrated. 

3)   I am sighing...out loud...sometimes. 

4)  He says he forgets.  Once he is reminded, he does it without complaint. 

5)  AND.  I catch him free-basing crackers, chips, and snack-like items when we are out with friends. 

Burnout?  I dunno.  Is he really "forgetting" to check?  It is his routine, has been for years.  I think he is he is a bit sick and tired of the never-ending-ness of it all.  I know I am.  Frankly, I am looking forward someone else supervising his "pancreating ways"  when he starts school tomorrow.  And, yes, I feel some guilt over those feelings.  Joe won't get a break.  Ever.

Joe's pancreating driving me nuts in my day-in-the-life.

Wanted A Bit More..

I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.

Yesterday...

Mid-spread of the peanut butter on Joe's sandwich...

I stopped dead in my tracks...and did an about face to Joe.

I had been busily preparing breakfasts, lunches, Joe's Daily Diabetes Log, and micromanaging my trolls (my children, I can call them that) hygienic needs prior to our departure for school. Amidst the scuttlebutt, I was discussing next year with Joe. I was lamenting our "good-bye" to his current School Nurse. I was planning out our "care-plan" for next year. I said something like "...and next year we will run it the same...all your care in the classroom...except for lunch."

Shifting his weight, Joe seemed to struggle with the information he was going to share with me.

"Ahhhhhhh...Mom, none of my care is being done in my classroom."

"What? ... For how long Joe?"

"For months."

*a disheartened ----*

As many of you know, I had worked diligently at the beginning of the school year to get more of Joe's care transitioned to the classroom. We had a plan in place. I thought it was being followed. I was under the impression Joe was not missing as much classroom time and I was under the impression that his days seemed more "normal" and "acceptable" to him. In fostering this plan, I had really backed off on my presence in the school. I drop off The Woodchuck to his classroom daily, but that is it. I had not met with the School regarding Joe's care in quite awhile. Things seemed to be going smoothly; I had become complacent.

Perhaps this issue doesn't seem like a big deal to many of you. Perhaps it seems trivial. It's not. It takes knowing the day-in-and-out of diabetes management intimately to truly "get it". During the school day, Joe requires a minimum of three blood sugar checks a day. On a Physical Education day, he requires four blood sugar checks. If he is experiencing lows, he could need many more checks. Each of these checks requires him to go to the Health Office. Many of these checks requires some sort of action: insulin dosing or sugar administration. If Joe is low he must stay in the Health Office for 15 minutes until his blood sugar is re-checked to ensure it is in a safe range. The long and the short of the previously written is that he misses a ton of classroom time.

Let's look at the psycho-social-emotional aspect of this. He misses instruction. He has been made fun of by his peers for not knowing what to do on assignments due to his missing key directions. He misses socializing during snack time. He may arrive to the lunch room late and have to socially navigate his seating arrangement after his peers have settled into their spots. This has been his arrangement for Kindergarten, for First Grade, for Second Grade, and now...apparently...for Third Grade too.

I discussed my concerns with the Principal and the School Nurse. I stated we can continue with the current arrangement as there is only 9 weeks of school left. I did impart this message upon them: I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He was ready for more independence. I wanted to nurture this. I wanted to foster it. I wanted to facilitate a learning environment that wasn't dictated by his diabetes care. My hope is that in the future the psycho-social-emotional aspect of a student's care is considered. Joe is oh,oh so much more than "diabetes".

Joe is an intelligent, independent child. He has an excellent grasp of his diabetes care and I was hoping to foster his growth and development by stream-lining his care in the school this year. I am not unhappy with the school. I feel that Joe is safe there. I feel he is cared for: the blood sugars are checked, the boluses for snack and lunch and highs are given, the lows are treated. I guess I was just hoping for a bit more.

Joe's day-in-the-life managing Type 1 in School.

It Was A Bad One

Trying to "harness" Joe's exuberant energy level is an impossible task. I know this. I don't even know why I tried. I expended more energy yelling at him while I was trying to run and keep up with him. I should have just saved myself and only focused on the running part. He is what he is and it is one of the things I love most about him.

"Walking LEGS Joe!"

and...

"Joe WAIT!"

and...

"Joe SLOW DOWN!"

and...

"JOE STOP!"

.... were repeated over and over and over again yesterday on the Snake Mountain Field Trip. It rained. The trail was wet and muddied. Leaves camouflaged rocks and roots that inhabited the path. My eyes were always glued to Joe who seemed to go into stealth mode and would suddenly be like 80 feet ahead of me. I fell a couple of times. It rained. I got eaten alive by mosquitoes. No really...it was all good. Seriously.

I digress...back to the story...

While hiking, my friend said she had never seen me like this. She had never seen me so anxious about Joe. Odd how I am fine with him playing hockey, skating up and down ramps at skate parks, and careening down slip and slides while standing on boogie boards, but a damn hike in the woods sends me over the edge.

Let me explain.

I am afraid of losing my diabetic kid in the woods. I am afraid he will get lost. I am afraid he'll go low. I am afraid no one will be there to help him and he will die. Alone. It is that simple.

*******

The hike started at a Tasmanian-like pace. Joe was working the trail with vigor. He and his friend were chatting incessantly. I was keeping up while hanging and talking with a good friend. Joe seemed fine ... for awhile. We had boosted him with 20 grams of carbs on the bus and decreased his basal by 30%.

About 10 minutes into the hike, Joe was 180 and double downing on Dexter. He drank a juice and continued on at a generous pace for a bit. Then he took another look at Dexter. I could tell he was starting to feel "off". Whenever he starts peeking at Dexter frequently like this, he is in for some massive blood sugar swings... 140, still double downing. I performed my heroics as a life-sized human Pez Dispenser and doled out a couple of Starbursts and changed the basal reduction to a negative 60%. I suggested a "break" from hiking until the arrows stop plummeting. No. Joe will hear none of it. We continued on with our friends.

A few minutes later...

"Mom...my legs don't work."

Here we go. It will be a bad one.

Joe sat on the side of the trail. His blood sugar was 50. Dexter was showing a 40 and double-downing. He was dropping fast. We were in the middle of the woods in B.F.E. I encouraged our friends to move on. I didn't want to ruin their hike. Joe was chomping down Starbursts. I was kneeling beside him. As far as my eye could see, the trail was then uninhabited. I felt a teensy-tiny bit uneasy as Joe was pasty and his CGM was still showing a 40 with double arrows down.

Joe's voice snapped me out of my unease.

"Mom, you may need to carry me down the mountain. I cannot make it up."

This angered me.  Not at Joe. But at the disease; at the low. You see, my son ... my Joe ... is not a quitter. He would not back down from a hike. It isn't in his nature. The low was clouding his judgement and making him feel so weak that he was considering giving up.

"Joe, I know you feel bad now. Let's ride out the low. We are hiking this mountain. Has mom ever let you down before? You will feel differently in a couple of minutes Buddy. Hang in there."

With the pep-talk complete and a few more minutes under our belt and some good friends coming up along the path, we continued on our way up Snake Mountain. Joe made his way to the front of the pack and was with the first group that emerged from the woods; from the hike. Due to his speedy-hiking, I got the "added bonus" of sitting on the bus an extra 40 minutes waiting for the rest of the Third Graders to finish the hike. Yay me (in a "Livin' the Dream" ~ like voice).

A day-in-the-life of Type 1 Diabetes and Joe on Snake Mountain.

F-I-V-E!

This morning at 5:34 am....

I enter Joe's room and turn on the lamp. I place the test strip into the glucometer. I lance and then squeeze Joe's finger tip to create a blood bubble. The blood wicks up the strip. 5-4-3-2-1. A 234 is revealed on the screen. I bolus to correct.

Joe wakes. "Is it morning Mom?"

"It is early buddy...go back to bed. Happy five years of living with diabetes."

Joe smiles a bit. "Gee, thanks Mom. Happy five years of having a diabetic kid."

A day-in-the-life of celebrating Joe's spirit and his enduring strength.

The Phone...

About a week ago a good friend asked me if it helps knowing adults with Type 1? She wondered if knowing adults that have had diabetes since they were pre-schoolers gave me hope for Joe's future.

I don't really think that far ahead.

I suppose, I take it day-by-day.

It is hard to describe. When I send him off on his bike as I follow on foot, I wonder if I will find him in the street crumpled from a low. I am relieved when I find him pedalling with intense vigor. When he is left in the car recovering from a low as I run into grab Bridget from an activity, I wonder what I will see when I return to our van. I am relieved when I find Joe with his eyes open and his skin taking on color. When I call into the house, I pause and wait for a response. I am relieved when the lisp-kissed, nasally voiced Joe calls out. Always, in the back of my mind...in the periphery of my conscious, I half expect no response ... eyes closed ... pale integument ... scrumpled...crumpled ... in-need-of-immediate-assistance Joe.

**********

So, Joe has been giving camp a bit more thought than I knew about.

Last night, Joe's phone came.

Last night as he came up the stairs, Joe said "I feel low". He then headed into the bathroom. I stopped him. I told him to check a number first. I reminded him that he must "react" to a low feeling immediately. If he puts it off he could become too low to know what to do to help himself.

I don't know if it was the arrival of the phone and what it represents that initiated his response.

Perhaps it was the blood sugar of 63...and my reminder of the sequela of untreated lows.

Joe curled his long, lanky body up in my lap last night and cried in my arms. He cried because he is scared. He is scared to go to camp without me. He is scared to manage diabetes without "help". I explained that I will be around the rink quite a bit and we will figure this out as we go. I re-iterated that he is never alone. His family, his friends, his community envelope him in love and in support and in certitude.

I then did what any Temporary Head Pancreata In Charge would do ... I quizzed the shit outta him.

Me: "What do you do when you eat?"

Joe: "I look at the carbs."

Me: "What else? What else has to happen when you eat? Let me know everything that you do..." I wanted to make sure he knew the sequence of what needs to take place without me in the midst reminding him.

Joe: Right on the money with, "Check a number ... count the carbs ... bolus."

Me: "What if you are low?"

Joe: "I take 3 sugars or drink a juice."

Me: "What do you need to do 15 minutes or so after taking sugar?"

Joe: "Check a number to make sure I have come up."

Me: "Right."

Mentally and physically preparing Joe for his day-in-the-life at Hockey Camp with Type 1 Diabetes in tow. 8 years old seems so young to me right now.

The ONLY Day-In-The-Life He Knows

It is 3:30 am.

I am up.

I am up for the day.

Sometimes my urge to write something down is so strong that I cannot go back to sleep after the 3am blood sugar check. This occurrence is relatively frequent, hence the "diarrhea" of my fingers.

The posted photo...the one that looks like a "great-now-I-gotta-make-up-the-grams-of-that-jelly-smeared-all-over-his-face" photo was what had me up and shuffling through a heap of old pictures that I have shoved half-haphazardly in a box. It is perfect for today's post on so many levels. It was taken "pre-diabetes", so no worries on the "carb-making-up". It was toast and jelly; the same thing Joe was munching on yesterday when he stated without emotion ... when he stated, matter-of-factly, that he hated diabetes. He continued on, void of emotion, that he hated everything about it. This picture represents a time before "D". Joe was two. Joe does not remember this picture. Joe does not remember a life where that jelly would not have to be "made-up" for in carb grams.

I help organize our JDRF Walk Kick-Off Luncheon each year.

This year, during the luncheon, we are going to be sharing how our "stories" are powerful tools in raising awareness about type 1 diabetes and ultimately, through the telling of our stories, the importance of a less laborious and rigorous treatment regimen and the need for a cure will be appreciated by the general public.

I asked Joe if he would like to talk at the luncheon about his life with diabetes.

His answer was, "What would I say? ..... I don't know what it is like."

I followed up with, "What do you mean Joe? How do you not know what living with diabetes is like? You have had it for four and a half years..."

*pause*

"Mom, I know no different..."

*WoW*

*my spawn is "deep"*

My response was something like, "So, you don't feel like you can talk about life with diabetes because you don't know how it differs from a life without diabetes ... you don't remember what it is like to not have it?"

"Yes, exactly..." in a lightly kissed, lisp-y, nasally Joe voice.

Well, fuck-stix. (Is that a sentence? noun (x), finite verb (x) complete thought (x)).

I have thought about this very topic over the years. At diagnosis, people were even so bold as to state "... blah...blah...blahbitty...blah.... at least he will know no different". Yes, true. He won't...He knows no different. He does not know what it is like to sit down with a box of crackers or a sleeve of cookies. He does not know what it is like to eat a meal without piercing his finger with a needle beforehand. He does not know what it is like to play a sport without frequent blood sugar monitoring. He does not know what it is like to not fear a low. The list is infinite. The list is life-encompassing. The list is somewhat sad.

Not sure how I feel about all of this... yet.

A day-in-the-life of knowing nothing else for his day-in-the-life.

You Have NO Choice, You HAVE To...

Rough night ~

Several insulin correction doses through the night at two hour increments, a site failure, and subsequently a whole site "change-out" at 1am...another correction, a ketone check, a water re-fill, and a "tuck-in" of Joe, after the previously mentioned rendezvous between a needle and his ass cheek was our night last night. This is the reality of some of our nights. Most likely, our night sounds familiar to many of you. You live this. I live this. Our families live this. Live this way.

I may not know your diagnosis story. Your grief steps and stages may differ from mine. Your grieving timeline may have been quick. Or, it may have been tedious and long. Possibly, it oscillates back and forth on a grief-like pendulum, as I believe mine does.

What I do know, what I can tell you, is that it does get easier. I cannot tell you when. I cannot tell you how, but it does. Time helps. Living through it, although painful, helps. Family helps. Friends, they help.

Your circumstances in this life are, most likely, different than mine. Your support systems, your financial status, your vices vary from mine.

That is OK.

This is no matter.

What I can tell you is that you will make it through. When times seem bleak, your drive and determination to care for your child will see you to the next blood glucose number, to the next site change, to the next meal to carb count. You have no choice. It is your lot in life. You will do it. You will do it for your child. You will do it for you.

I am not sure if you are able to check a blood sugar, or give an injection, or insert a pump site without your child wincing or tearing-up. I know we still endure that here, sometimes... over four years into type 1 in our lives.

This I know. Sadly, it becomes easier to see the winces, to experience the cries, and to carry-on with business as usual. It is what must be done. There is no choice. You will do it. You have to.

How many tears have you shed since your child's diagnosis? This I do not know. I am sure it differs for us all, just as the grieving process does.

What I do know is that there will be rough patches no matter how much experience you have with managing diabetes in your child's life. You will be challenged. You will falter. You will learn. You will carry-on. You have no choice. You have to.

The instability of your child's blood sugar numbers, the "no rhyme, nor reason", the frustrations may visit you frequently, or ocassionally, or rarely. I don't know what you are currently enduring. I don't know your unique situation. I am unsure of the struggles you are facing presently.

What I do know. What I can tell you with certainty...especially those of you with young, young children with diabetes...is that the numbers will even out a bit. The variances will become less extreme. The lability will stagnate. You will sustain without yielding. It may be years of managing challenging numbers. It will knock you to your knees begging for mercy. It will challenge your mental and physical well being. However, you can do this. You will do this. You will do it for you. You will endure it for the love of your child.

And...

Perhaps that is why so many of us struggle. There was no choice. We do not have a choice. Our children do not have a choice. It just "is". So we do.

And...

I am thankful for the opportunity to be able to.

A day-in-the-life of hope.

Always

As many of you know, my 7 year old son Joe has been living with type 1 diabetes for over 4 years now. He has been living with the rigorous daily regimen that "d" demands of him for over half of his short, sweet life.

Over the years I have been left to wonder when will Type 1 Diabetes in my son's life stop breaking, chiseling away at, wearing on, and weighing down my heart.


When will I stop grieving?

Will I always be one string of non-euglycemic numbers away from a minor melt-down?

I believe I still mourn the loss of Joe's beta cell function because he cannot just sit and eat crackers out of a box or cookies off of a plate "mindlessly". Carbs must be counted. The pump must be programed. Insulin must be delivered. Food must then be consumed. Not eating, once the insulin is administered, is not an option. Sadness ensues as I witness the wince cross Joe's face while I insert needles into his flesh for pump site changes and CGM insertions. The sadness comes not from the pain that I am causing him, but from his attempt to hide his discomfort and pain from me. He, in essence, is trying to protect my emotions by hiding his. And, again, grief weighs on my heart a bit more as Bridget and Joe put aside much of their chore money to "fund" a CURE, as Joe states "I just want diabetes to end". The heaviness in my chest stems from my lack of faith in a CURE for Joe. Sad. True.

Our journey of managing blood sugars from meal-to-meal is exhausting. Managing diabetes from activity-to-activity requires thoughtful planning and critical thinking. Tweaking pump settings and bolusing insulin from blood glucose number-to-blood glucose number demands continuous attention to detail. Diabetes care never ceases as it is with us every night, through our days, during holidays, during illnesses. It is with us every trip to the store, to the park, to the gas station. It is with us while we are driving. Our journey of delicately balancing judicious diabetes management in a young, growing, active child, while considering the psychosocial impact that this kind of tedious, rigorous, never-ending care demands of us ... that type 1 management demands of Joe ...will always demand of Joe is essentially unexplainable. However, I do try, here on Beta Buddies. I believe my flits (word? I dunno) with grief and sadness stem from the "never-ending-ness" of the care and the isolation that results from this sort of life. It is difficult to explain the routine, the regimen, the tweaking, the boosting, the sleepless nights to those that do not live it. At times, I feel alone....

At times, not only do I feel alone, but I feel there is a part of me missing. The part of me that used to be a good friend, that was a kind neighbor, that had the energy to be a thoughtful human being. You see, there are times that there is absolutely nothing left of me to give. I am spent. I am caught up in the numbers. I am tangled up in the psycho-social web of diabetes land mines. The sad thing is, many people don't get that the impact of 24/7/365 meticulousness and care can fuck with you. It saps your energy. It leaves you feeling depleted. There is rarely a break or reprieve. What gets to me the most is that I am only here to help shoulder the weight of "D" care for the short-term. It is Joe who will endure the enormity of it all for his lifetime.

For the most part .... I find I am fine. I have my chin up, with a smile plastered on my face. I suck it up, with a smile plastered on my face. I can "take it in the ass at the arts"...again, with a smile plastered on my face.

At times ... I still struggle... Tears. Isolation. Frustration.

Always ... Lora, Meri, and Donna, I "get it." Type 1 in our children's lives is a constant. It is not going away. Ever.

From the "Irony Of Time" ...

'Seconds, minutes, hours, days, weeks, months, seasons and years, funny how the "measures" of time all blur and meld together as one long stream. During them, you can suffer the most monumentally painful events in your life. Each minute seems an hour. Each hour seems a day. Each day a week. Each week a month...and so on. Four years ago today one dip of a stick into my son's urine changed my life, upheaved my family's life. It was one of those "clock stopping" moments. The type 1 diagnosis and it's sequella froze me in "time" for a bit. No matter how hard I tried to deny "It", no matter how hard I tried to ward "It" off, no matter how much I wanted to tell "It" to "go to hell" and to leave me, my family, and my baby Joe alone, "It" was there. "It" was going nowhere. Time had stopped. I was "stuck". "It" wasn't necessarily "d". I believe "It" to have been "grief".'

A day-in-the-life of understanding.

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.

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".

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.

Hallie posted the other day on the "invisibilities" of type 1 diabetes.

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:

The Painful Truth of My Nights

Tomorrow Isn't Always There

Children With Diabetes: Dead In Bed Syndrome

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.

THE IRONY OF TIME

NaBloPoMo: Day 18

Preface: Tonight as the bath water drained, this post started to grow, evolve and progress. You see, this is the post out of all the posts from my month-long challenge that I care the most about. (*quiet, yet deep breath with long exhalation*). If you have taken the time to read nothing else of mine this month, please, this is the post I want you all to read. This is the post that defines the history of type 1 diabetes in my life to date. Forgive me if it rambles a bit. This is the post that will mark my 7 year old son Joe's 4th year with type 1 diabetes. He has been living the rigorous daily regimen that "d" demands for over half of his short, sweet life.

THE IRONY OF TIME

Seconds, minutes, hours, days, weeks, months, seasons and years, funny how the "measures" of time all blur and meld together as one long stream. During them, you can suffer the most monumentally painful events in your life. Each minute seems an hour. Each hour seems a day. Each day a week. Each week a month...and so on. Four years ago today one dip of a stick into my son's urine changed my life, upheaved my family's life. It was one of those "clock stopping" moments. The type 1 diagnosis and it's sequella froze me in "time" for a bit. No matter how hard I tried to deny "It", no matter how hard I tried to ward "It" off, no matter how much I wanted to tell "It" to "go to hell" and to leave me, my family, and my baby Joe alone, "It" was there. "It" was going nowhere. Time had stopped. I was "stuck". "It" wasn't necessarily "d". I believe "It" to have been "grief".

Stuck in a grief-filled, stressful time, my family was forced to slowly live and thrive with our "new normal". There is absolutely nothing "normal" about having to measure every morsel of food your three year old child consumes. There is nothing "normal" about lancing your precious preschoolers chubby finger tips 8-12 times a day. There is nothing "normal" about holding your child down to give them multiple injections daily so that they can live a long and "healthy" life. There is nothing, and I mean nothing "normal" about the "new normal". It just is. It just was...4 years ago today.

Seconds, minutes, hours, days, weeks, months, and years soothe, heal, dilute and ultimately anesthetize the pain. As with all hurts in this life, I have found, once again, time to be an old friend. In a traumatic moment time stands still and the pain is unrelenting, the loneliness isolating, the grief smothering. Curious how as hours, days, months, and years pass, the pain, the loneliness, and the grief ebb into the nooks of the periphery of one's consciousness; and then, they slowly dissipate into the subconsciousness without even a second thought. Gone without notice.

Now, my family's existence seems to be catapulting through time; the years are becoming months, the months days, the days hours, the hours minutes, the minutes seconds. Time is careening by in scenery "flashes" or "snippets". Pulsing. Racing. Rushing. The warmth of summer is giving way to cool autumn evenings. The start of school will soon transition into the holiday season. The holiday season will give in to the brittle freeze of January. The bitter chill of winter will break way to budding tree leaves and blooming tulips welcoming spring and a new growing season. And so, the cycle continues. Life goes on. Sometimes Joe's diagnosis seems like it was just yesterday, with me "stuck" in time. Thankfully, for the most part, however, our prediagnosis-existence seems like it was a lifetime ago.

A lifetime ago.

You see....

Solace has been found through the anesthetic balm of time.

Reflecting on 4 years of a day-in-the-life of parenting a child with type 1 diabetes.

MORE THAN JUST STUFFING

NaBloPoMo: Day 16
As I followed the trail of stuffing that traversed down the stairs and into our kitchen, my thought feed was as follows: "Is it the bald eagle with the talons that Oscar loves to chew on? Is it the calico kitty cat with the tattered whiskers? Or Is it the jingly ball?" ... that I believe to be a baby toy that Oscar has a strong affection towards.

I arrive at the carnage. No. It is not the bald eagle. It is not the kitty cat. It is not the ball that jingles. It is LuLu, the polar bear. As I attempt to clean up the mess of gnawed up eyes, cotton entrails, and a globeless, eyeless LuLu, my mind takes me back. It takes me to a time when LuLu had diabetes.

You would not know it to look at her. Would you?

It was about 3 and a 1/2 years ago. It seems to be a lifetime ago. A time when Joe was a chubby faced pre-schooler. A time when Thomas the Tank Engine had a permanent set-up on our coffee table. A dark time for me. A time I have stuffed into the recesses of my mind, hoping to forget. It was a painful time.

LuLu wore a insulin pump that I had fashioned out of a an Animas printout. I had laminated it and tied it around LuLu's waist. LuLu wore a set in her bum and the tubing was attached to the pump printout. LuLu had her paws pricked for blood sugar checks. LuLu received multiple shots daily. LuLu's care was diligently documented in a log for studying and tweaking of insulin doses. LuLu was a "Show-and-Tell" prop on a few occasions. Joe, Bridget, and I would use LuLu's pump "set-up" to show friends what the set looked like and to discuss the regimen of diabetes management.

(Heavy Sigh)...

It is funny how time passes, dulls, and anesthetizes.

We are approaching Joe's 4th year with type 1 this Saturday. I have been acutely aware of my emotions while reading Houston We Have a Problem's blog as they close in on Nate's first anniversary of living with diabetes. I am also struck by the fact that this week is Invisible Chronic Illness Awareness Week. Karen from Bitter-sweet posted beautifully on What You Think You See. You would never know the war that raged in LuLu's body for a time AND you cannot see the battle that we have with "d" daily to minimize the damage that high blood sugars inflict on Joe's organs while we stave off dangerous, and potentially deadly, lows.

R.I.P. LuLu.

One could not imagine, by looking at us, what our day-in-the-life entails.

DO NOT PITY THE PORTUGUESE PRINCESS NOR HER SON... WOMAN!

About the title: (I am 1/2 Portuguese...and liked the way all the "P's" flowed together).

So I saw HER.

I saw HER tonight once we arrived at soccer. Who? Saw who? You are most likely questioning.

The lady who PITIES Joe and I.

I haven't talked about it too much, but boy have I given it some thought. It has weighed heavily on my mind intermittently over the past few weeks. This incident needed some "processing" before I could put finger tips to keyboard.

In the (almost) four years since Joe has had type 1, I have not experienced an event like this:

• Three weeks ago this woman witnessed me checking Joe's blood sugar after his game/before the "DREADED" team snack. She then commented (within earshot of Joe and I) to another woman standing next to her..."THAT is so SAD...". Even worse, was then her son (Joe's team mate) was asking her "what is so sad mom?" (she was avoiding answering him) he again asks while raising his voice and tugging on her shirt-tail "what, what...what is so sad?" She then whispers to him to 'be quiet' and that she will tell him in the car.
  

WOW...

Speechless...(which for me is RARE)

... and again WoWie, WoW, WoW... (thanks Junie B. Jones)... REALLY?

OK, so after I was stunned from the above verbage from this lady...that Joe's and my situation was "SAD". I began to really think about it. What do I want people to think? say? do? I mean REALLY???... Is there anything that people can say, feel, and/or do that will be "OK" or "acceptable" to me? Prior to this I haven't given it much thought. Well I can start off by saying I certainly DO NOT want pity. On the other hand, I don't want people to "blow off" the enormity of the disease.

In watching Joe day-in and day-out deal with the rigors of his routine with grace (most of the time). Here is what I WANT...Here is what I HOPE... people think (if they even give it a second thought) when they see my son, Joe, dealing with the likes of "D".

I want them to see his BRAVERY (this kid took a needle to his "A"-double-"S" for a site change while flying on an AIRPLANE mind you). I want them to understand that he is a HERO. I want them to "get" a 400 point blood sugar drop during hockey practice must feel like shit, but he still manages to skate well and have a good attitude. I want them to understand that he is AMAZING; the kid can add up 17g+17g+6g+10g+3grams of carbohydrate (for his Fluffernutter and milk for lunch), in his 7year old brain. I want them to know that he lives each day to the FULLEST...with GUSTO. I want them to know that he is a kid with HEART. I want them to take notice that HE DOESN'T FEEL SORRY FOR HIMSELF. He takes each day in STRIDE inspite of having a "Woodchuck #2 toting, carb calculating, needle wielding, insulin dispensing, lunatic pancreas on legs" following him around asking him if "his number feels OK." How he hasn't become "neurotic" after that last mouthful of a sentence I do not know, but he hasn't. He is SIMPLY JOE.

I WANT people to be in AWE of him. I WANT people to ADMIRE the courage and tenacity that he displays daily...heck HOURLY. I WANT that for Joe... I want that for me.

I DO NOT WANT TO BE PITIED ... I want to INSPIRE. Anyone who knows me knows that. There you have it... some more crazy-ass ramblings from a mom who hopes to do right by her AMAZING HERO of a son, JOE...who lives each day to the MAX hand-in-hand with "D".

Post Edit: I am not a confrontational person. Joe only has one more soccer game with his current team. I am hoping that I can show this woman what a day-in-the-life is like with finesse and tact.