Sense Of Purpose

I "worked" thirty minutes yesterday.  That was the amount of time I was scheduled, so that is what I had worked.  It seems crazy to think about it, but that is the definition of government inefficiency.

My sense of purpose used to be tied to going to an office everyday.  Granted, there were some days (especially in the last year or so), that felt like that was a reach...but...  I would still get up everyday, get showered, make the kids breakfast and go to work.

Now, I make the kids breakfast, drop them off at school, then maybe "work", maybe go do physical therapy exercises, maybe do this, maybe do homework.  The possibilities are endless.

My days are, as Forest Gump would say, "like a box of chocolates.  You're never sure what you're going to get."

It is interesting and exciting, but it's also terrifying.  What is my sense of purpose if I'm not going to an office to do work?

Yesterday, I dropped the kids at school, then came home to work on a scholarship application.  Then I worked for thirty minutes in Cumberland, RI.  Then I made my way to a doctor's appointment in Warwick, RI.  Following the doctor's appointment, it was off for a quick bite for lunch.  Then there was a late lunch meeting for a potential job opportunity in Providence, RI.  Then off to Mansfield, MA to pick up some stuff for another job.  Then off to a 6pm meeting in Wellsley, MA for volunteer work with the JDRF.

My sense of purpose was not showing up to an office to get work done.  My sense of purpose was to try to make a difference in small ways.  I applied for a scholarship to hopefully reduce some of the financial burden for school.  I went to the doctor to make sure to try to keep myself healthy to be able to be around (a long time) for my kids.  I read the family read called "The Crossover" while I had a quick bite as I had been overdue finishing it.  I had a late lunch meeting to discuss how I could make a difference for an organization that I think does some really cool work.  While in Mansfield, I picked up stuff for a co-worker too...to save her a trip.  Then when I went to Wellsley, I kept thinking about my son, my niece, our friend's child, our friend and all the other people that have to deal with T1D...24/7.

While in Wellsley, I was reminded of something my son had said shortly after diagnosis.  "My Mommy and Daddy are going to do whatever they can to raise lots of money so no other kids will ever have to get this disease."

Then, I was reminded of my sense of purpose.

Tidal

It was a miserable rainy day, but I had a hall pass for the day.  I was out with one of my closest friends to a beer/punk music festival.  Combining two of my favorite things...beer an music was a genius idea.  Until we heard the weather forecast.  That said, nothing was going to ruin the day.  We were out, without any worries of the world at home or work.  We were going to drink beer and listen to music.

Until the phone call came.  I had spoken to my mother earlier in the day, so I didn't know why she was calling.  She sounded off, so I knew something bad was coming next.  She told me that my sister was bringing my niece down to the local hospital as she has been diagnosed with Type One Diabetes.  I felt as though the wind was knocked out of me all over again.  All of the feelings from diagnosis day for my eldest came rushing back.  I would never wish this upon anyone else...most especially family that I love very much.

The clouds hung over the day bringing a lot of rain, but this news would hang a heavier cloud over my soul.  As much fun as I would have during the day, there was a lingering sense of doom about what my sister's family would be going through.

In my writing practicum class last year, I had to do a piece of writing that was personal.  I wrote the piece below.  I have shared it with very few people, but it seems incredibly important now as families that go through this, need to know that all of these feelings are normal and real and appropriate.

So, here it is...Tidal:

The edges of my vision looked like the sun peeking through an eclipse.  The grains of sand wrapped around the contours of my spine.  The heat, usually so unwelcome and the darkness, so contrary to the day…felt like home.  The sounds of the rhythmic drum faded away as did the voices of the children and the ocean crashing.  I lay in peace and surrender.  No thoughts of work.  No thoughts of the fear of returning to another year of school.  No thoughts of family finances.  Most importantly, there were no thoughts of the meaning of the day.

This day, August 27^th stands in familial infamy.  It was four years ago that I had received that call from Missy.  It was tough to understand what she was saying.  There were tears and the shortness of breath that you get when the world seems to be closing in on you.  I don’t even remember the words, but I remember hearing the words get caught in her throat, then get muffled as they bounced between the strands of blonde hair on the way to the receiver.  It was the fear that we had both had for days.  Parental intuition, with a healthy dose of Google…it all made for a dangerous cocktail in 2013. 

We had been down this road for a week.  We were all exhausted.  It seems as parents, the failure to sleep train our two boys had come back to haunt us as every time he had to get up to go to the bathroom…one of us had to snuggle into bed with him until he went back to sleep.  He was getting up six to ten times a night, which meant we were getting up three to five times a night each.  We had cut off all water after dinner as it had seemed as though the excessive drinking might have been contributing to the excessive urination.  It hadn’t made a difference though.  This was the third time.  Thankfully, it was midnight and I hadn’t gotten to sleep yet.  I was nestled in close, almost hanging off of his twin sized bed.  There was silence.  Until there wasn’t:

Daddy?

Yes buddy.

Is it almost morning?

(Concerned) No.  In about six hours.  Get some sleep.  (Pausing) Why do you ask?

(Groaning) I’m sooo thirsty.

He eventually drifted off to sleep and I slowly tiptoed away, hearing every creak like an orchestra on our hardwood floor.  When I was free and clear, I got into bed and reached for my Kindle.  Google.  Search.  Excessive thirst and excessive urination.  Enter.  Type One Diabetes is the first thing that appears.

We both knew what had been coming, but there was the hope that it was just a miscellaneous infection.  It was the hope that you have as a kid that your parent won’t find the note from the teacher buried in your backpack…but they always do.  It felt like a hurricane.  You knew it was coming, but you weren’t sure of the impact and all you could do was hunker down.

We spent seventy two hours trying to understand how life would be different for everyone in the family with a child that has a busted pancreas.  The doctors and nurses and educators would use the door of the room like a revolving door in a department store.  It was a blur of colorful hospital scrubs.  Every time someone entered, we sat at attention and listened…and asked questions…and got overwhelmed.  It was the panic as the peaceful wave in the ocean that you were going to ride, somehow crashed on top of you. 

Your job as a parent is to keep your child happy and healthy, but suddenly it had become a lot more difficult.  You now have to, without prior medical training, calculate and dose your child with insulin.  Insulin had overnight become the life blood of your child.  Without it, they will die.  It’s said that children are like bees and dogs, they can smell fear.  This six year old child smelt it like the chum in the water in front of a shark.  He knew that you have no training and absolutely no idea what you are doing.

The tears rolled.  They moved like the senior walkers in a mall prior to open.  Slower than expected, but still with a purpose.  I tried to cover it up, but I wept…uncontrollably.  Head in hand, in a hallway that reeked of alcohol.  Suddenly those blurs in scrubs came into focus and asked if I was ok.  I wasn’t.  I mourned for our previous life.  It was a life that had dropped dead suddenly, in a doctor’s office with a urine specimen on a desk.

They tell you it gets better.  It doesn’t.  It gets easier.  The new normal becomes the only normal.  The life that died is replaced by a new one.  One filled with love.  One filled with hope.  It’s a life that has calluses on its feet from having walked over thousands of little needles that are at first shocking and painful, but in the end just make your skin tougher. 

The heat becomes unwelcome again and begins to irritate my eyes.  The burning makes the tears roll down my cheek.  I reach to push them away with the back of a callused hand and they move in a circle, having taken a lap or two.  The grains of sand start to shift and move.  No longer wrapped around my spine, I am suddenly surrounded.  Sand, salt water, children, heat and noise.  There is no peace.  There is no tranquility.  And happiness is not a destination, it is a series of moments.

It's Been A Long Time...

It's been a long time since I sat down at this laptop to write a blog post.  I had made it a point to try to write every day or so, but that didn't work...

I would say life gets in the way (and it does), but that is ultimately just an excuse.

This has been a massive year of transition for me.  For the last two plus years, I have been living on this tightrope.  I have tiptoed between the career I have and the career I want to have.

Let's backtrack for a moment.  I have been a marketing professional for over twenty years.  I started just out of college working in the music industry.  When the bottom fell out of that industry I was laid off (along with 999 people - over the course of two days).  I jumped around after that doing some customer service work, some non-profit work, bounced at clubs, etc. until I landed with a family-owned restaurant and hospitality company.

I stayed there for over eleven years.  I liked the work, enjoyed most of the people I worked with...but didn't love it.  I didn't have a passion for it.  I have an underlying need to make a difference in the world around me, but I didn't feel as though I was able to do anything in this job.

I had tried to get another job...with more money and more responsibility, but I kept coming up as number two.  I would make it through lengthy interview processes and hundreds of resumes, then be the number two choice.  That happened five times in two years.  It was a tough pill to swallow, but it helped me get to a realization.  If I was going to advance my career, being a marketing generalist wasn't enough.  I needed to look to get additional education.

Then I thought to myself...I have another twenty plus years in the workforce.  Do I want to continue to do marketing or do I want to do something else?  I decided that I wanted to do something else.  After a lot of soul searching, I decided I wanted to be an Elementary School Teacher.

Yes, the vacation time and summers' off played into the decision (as my oldest son, is a Type One Diabetic), but the biggest factor was feeling like I wanted to make a difference and be a change in the world.

So, I started (close to three years ago) the process of looking into schools, applying to programs taking standardized tests and getting into a classroom (which I hadn't done in over twenty years).  Needless to say, I got through all of the hurdles and found myself in August of 2016 in a classroom at Rhode Island College.  I was terrified, but excited all at the same time.

Two years later, I found myself an Elizabeth Carr Scholarship Recipient, with a 4.0 GPA, needing some flexibility in my schedule at work to finish up my coursework.  I am two-thirds of the way through the program.  I needed work to be able to flex my hours so I can take a summer course, two practicums in the fall...then I would need to change jobs before the spring semester, as I would be Student Teaching (Monday through Friday during the whole semester) in the Spring. 

Last year I was pushed by work to take vacation days whenever I had practicum classes.  In 2017, I used fourteen of my twenty vacation days to go to school.  They were not very flexible.

So, a few weeks ago, the moment of truth happened...I gave my two weeks notice.  I decided that the life and career I wanted was more important that the career I had.  There was an attempt to keep me on, but at the end of the day, I needed the flexibility to do what I needed to do to complete my journey.

It is scary and exciting knowing that I am on my way, all in, towards being what I want to be when I grow up.

My three year journey continues...living the "gig economy" life and working on finishing what I started.
 

Paris

Paris.  I have a love/hate relationship with the city...  I think it is a beautiful city, but when I visited (admittedly close to 20 years ago) the people were so RUDE.  I have been to other European countries (even some that didn't speak English - as their main language), but no one was nearly as rude as the citizens of France.

That being said, the events of last month in Paris hit me hard.  I felt the attacks the most I had felt terrorism since 9/11 (I grew up in New York...so that REALLY hit close to home).  The stories about the Bataclan Theater bring me to tears.  I grew up in clubs (figuratively, not literally) seeing rock bands.  By my count, I've been to 800 concerts.  At least 200 of those were in clubs.  When I worked in the music industry, I was in clubs sometimes 4 times a week.  I spent time with radio station and record store employees, tour managers, merchandise guys, road crews, bands, etc.  These were my people...  Spending time with a lot of these people, we were all very much alike.  Not the most popular people in school, never really finding a "place in the world"...and suddenly in the world of music it all made sense.  Music is a huge part of who I am.  For me to go to a club to see live music is a night out.  No big deal...  For the 89 people that died at the Bataclan, they probably felt the same way...it was a night out to see the Eagles Of Death Metal.  It probably never crossed their minds that they may not make it home that night...

Here is the definition of Terrorism:

1. the use of violence and threats to intimidate or coerce, especially for political purposes.

2. the state of fear and submission produced by terrorism or terrorization.
3. a terroristic method of governing or of resisting a government.

ISIS was trying to create fear.  They were trying to get people out of their normal routines...to think about being scared.

The family was down in NY for the Thanksgiving holiday (we alternate years).  I was able to get tickets to the Macy's Thanksgiving Day Parade for the family and was looking forward to going.  My initial excitement was tempered with the response from my wife of "Maybe this isn't a good year to go."  I hadn't even thought of NOT going.  We had gotten married less than a month after 9/11.  Due to fears of my wife and her family, we changed our Honeymoon plans.  I had always regretted that... Not just because we lost a boat load of dough, but because we did exactly what the terrorists wanted. We acted scared.  We changed our lives.  I wasn't going to let that happen again...

"This is a once in a lifetime opportunity.  The boys will absolutely love it.  It will be special." I told my wife.  She agreed and was ok with going...even, eventually, looking forward to it.  I told her we should take the LIRR into Penn Station, then walk the block to Macy's.  It will be super easy...

Wednesday night before Thanksgiving, I went to see Andrew McMahon in the Wilderness at The Paramount in Huntington, NY.  My brother works security there and got me on the guest list.  It was a blast.  The music was great.  I bumped into an old friend.  I spent time with my baby bro.

You know what?  I never once thought about the Bataclan or those 89 people, until...my mom started texting me and pleading me to drive to the parade (she had been at home with my wife).  That was followed by a 12:30am text from my wife to drive to the parade.  I caved in...and agreed.  If it would make her feel less anxious about going into a large group of people in a major city, then so be it...

You know what happened...  We had a great time...and got stuck in 2 hrs. worth of traffic coming home...

I believe in being cautious.  I believe in knowing what is happening in your surroundings.  I don't believe in being scared.  Life is too short.

I will continue to live and breathe music.  It's part of my soul.  I won't let anyone...especially terrorists, take that away from me.

Sports

I sit on my couch watching a football game.  It doesn't matter what game it is because "my team" (the Jets) already played this week.  I'm just watching for the sake of watching (also due to Fantasy Sports implications, but that's another story).

It got me to thinking...why do I like sports so much?

It's not a simple answer and it comes from a lot of places...

Part 1 - Dad.  My Dad loves sports.  He was never the most patient Dad in the world while growing up.  He doesn't relate well to young kids (as he is very logical...and kids are not).  He was usually pretty short with me as a kid, but he always had a lot more patience when he was discussing sports.  Watching the Mets or the Jets was always a time for us to bond.  He would explain strategy and get upset when the Manager or Coach didn't do what he thought they should.  It was our time.  All these years later, the easiest (and most frequent) conversations with my Dad revolve around sports...

Part 2 - Friends.  I didn't have much of a place growing up.  I didn't know where I fit.  I was always the square peg in the round hole...except when I was playing sports.  Baseball, Soccer, Basketball...it didn't matter.  I wasn't the best athlete, but I had pretty good genes and I was pretty smart.  These traits were helpful when it came to playing (and not embarrassing myself).  On the field I made friends.  A few of them are friends for life.  I always felt like I had a place while playing sports.

Part 3 - Drama.  The thrill of victory.  The agony of defeat.  All that stuff...  If you are truly invested, then you feel it when your team wins or loses.  My heart was broken recently when the New York Mets lost the World Series (in shocking fashion) to the Kansas City Royals.  I was in attendance.  It was the second time I had been to a World Series (the other was in 2000) and it was the second time I saw another team clinch the Championship on "our" field.  It sucks.  I spent the next few days having "I'm sorry" conversations with my friends...

You know what?  As much as it stings...it doesn't matter in the grand scheme of things.  I still had to wake up the next day.  Still had to go to work.  Still had to make sure The Attack was ok...and his BG was good.

There is nothing more sobering than to walk out of CitiField after the Mets lost the World Series and see a BG of over 300 on my Pebble Watch.

Sports.  You have so much meaning in my life.  You are fun while you last.  Your significance ends when the game ends.

There are more important things to worry about. 

Rollercoaster

Not The Attack's...but could be...

So come a little closer

There is something I can tell yeah

You are such a roller coaster

- Bleachers "Rollercoaster"

Sure the song is about a girl (or a guy - if that's what you like), but it sort of represents life with diabetes.  It's a rollercoaster.  Up and down.  Peaks and valleys.

I have a greeting for the few people in my office that I like and have a sense of humor.  It's a middle finger salute.  My way of saying..."Hey, you're number one in my book!"  With diabetes, some days I just want to stick out my finger in the angriest of ways.  I try not to hate...but I HATE this disease.

This morning The Attack woke up and jumped into bed with me.  We had an early morning cat nap before I needed to get up and get ready.  While in bed, we got a call from Nana (his Grandmother on the other side).  She was asking if he wanted a little DD for breakfast.  He wanted a bagel...I said no.  Not so much because I am from New York and have massive disdain for the rolls that pass for bagels at DD, but because I knew his BG would go through the roof with a bagel...  "Why don't you get a bacon, egg and cheese on an English Muffin?" I asked. "That sounds good.  That's what I'll have."

I immediately grabbed the Kindle and looked up the carb count for the sandwich.  32g.  Seemed a little high, but then again it is Dunkin Donuts.  He also wanted milk (12g) and a squeezy yogurt (10 g).  54 g. for breakfast.  Not great, but not terrible.  I pre-bolused  him for 25 min. (the regular breakfast routine so that the "bell curve" works in reverse for us).  He was at 200 when I bolused him...about 160 or so when I left for work around 7:30am.

I drove to work, listening to Howard Stern as I normally do...when I began noticing alerts on my watch (we have Pebble Watches linked to Dexcom Follow).  Before I knew it, his BG was 150 double arrows down, 125 double arrows down, 100 double arrows down...then 78 double arrows down.

I called Missy to see if she saw this.  Thankfully she was still at home, as The Attack had already left with his Uncle for Theater...  She rushed over to the school (less than .5 miles from the house) and treated.

The PDM was 62 when checking and his CGM bottomed out around 48...with over 5 units of insulin on board.  The Attack didn't start feeling the drop until juice box #2.  60 g of uncovered carbs later and he was out of the woods.

His 8 1/2 year old body sustained the impact of his BG bottoming out.  He was shaky, sweaty, out of sorts...and now had to start his school day.

This all comes on the heels of a 504 meeting at his school with the Principal, his Teacher and the School Nurse.  The Principal was receptive to what we were looking for - except she did reference someone as "severely diabetic" (which aggravates me - you either are or you aren't). The Teacher is fantastic and goes out of her way to be helpful.  The Nurse...just doesn't get it. Comments like "I don't think the CGM helps him.  He needs to be able to feel his highs and lows." piss me off.  He's 8 1/2.  He doesn't know his body well enough yet.  If we have the technology to make his life easier, we should do everything in our power to use it.  He doesn't need to learn a life lesson...he needs to live!

He's now at 302 on the CGM.

Diabetes sucks.  It's a battle every minute of every day and it is exhausting.  It is a rollercoaster and I just want to take The Attack and the rest of the family off of it...but we can't.

This is our 24/7.

Getting Old

I'm getting old.  It's one of those things that doesn't happen overnight (it's a long process), but when you begin to realize it...boy does it suck...

I started to really feel it this year during Baseball season.  I'm a coach for the Boys' Little League team.  For some reason, I ended up with the job of working with the Pitchers, so I spent large amounts of time in a "Crouching Catcher" (not Crouching Tiger or Hidden Dragon) position. Needless to say, the next day (after a practice - or sometimes game) would be rough.  Lower back and knees would be achy and everything would feel dull.

All of my old injuries would come back to haunt me...  The rotator cuff that I should have surgically repaired, but don't want to go through the rehab for.  The arthritic knees that creek when I crouch.  It's all bad news.

Some of this could potentially get better if I did some exercise, except...I HATE exercise.  I feel like a hamster on a wheel working out.  It's boring to me.  I played sports my whole life.  Soccer, basketball, baseball, etc.  I love playing sports and being competitive.  I love being on a team.  The being united for a common goal, friendships, etc.  It's great.  Running on a treadmill...it sucks!

We recently had the last practice for our U10 soccer team.  At the end, all of the kids played a huge scrimmage (with no rules).  In the midst of the game, they asked all of the coaches to come play.  I did...dressed in slacks, a button down shirt and dress shoes.  It was not a good idea.  I ran around, but soon felt like I was in some sort of shape...just not a good shape.  Circle, triangle, maybe even an octagon (but whatever it was, it wasn't good).  I had two opportunities to score...and I did on both. But, the first goal game with a price.  Dress shoes do not have good traction, so when I let loose to shoot, I wiped out and landed right on my ass.  It was not a good look.

As I was sucking wind, I kept looking at my Pebble watch.  The Attack's BG is updated on my watch. It drifted from 180 to 68 in a short period of time...  Next thing I knew, we were both sitting on the bench.  I was sucking wind and he was sucking apple juice from a box.  2 juice boxes, apple crisp and some chicken soup later...his BG stuck around 150 all night.

That night I took Aleve and went to bed.  I woke up with a little less aches and pains.  That night The Attack went to bed with some extra carbs on board to offset the extra insulin on board.  He woke up...and still had T1D.

My aches and pains may recede, but his T1D won't ever...until we find a cure.