To Tell...Or Not To Tell...That's the Question...

More than three years since diagnosis...we are still experiencing "firsts."  J has never hidden diabetes (kind of hard to do with a DAD and an outspoken Mom) He openly talks with, educates others, and isn't afraid to do diabetes, front and center.

Today was different.  Today was new.  And I am not sure if I like it.  He had the opportunity to do some spring cleaning help for a near by family.  I spoke to the mom, found out what he would be doing, all the right stuff -- but I didn't mention diabetes.  On the way over to the house, I asked J if he wanted me to explain anything to the family..if he needed to stop and treat a low..they would understand why, etc..he calmly answered me with, "No, I will take care of it."

Gulp.  I stuttered out a wimpy, "Okay."  I took a deep breath, and realized this was a growing moment.  No, he wasn't hiding diabetes.  He was taking a step closer to independence and owning it.  My caveat explanation here is he can do it.  He is super uber responsible and able to do it.  He attacked diabetes             with a preemptive strike from the time he awoke this moring, in an effort to get his numbers in line for the day.  (He will be doing a lot of manual labor, something that will drive blood sugar numbers low.  Lows are bad.  Lows on step-stools or power tools, extra bad.)  My mom moment...Letting go...so he can prove it to himself..that he can win a round of  "I am bigger and stronger than diabetes."

As he gathered up his things...I almost couldn't contain myself.  He was not in ear shot.  I sooo wanted to say something..give the family a heads up...but I didn't.  Instead I have her number on speed dial.  I am watching his numbers remotely on Nighscout and I am letting him live with diabetes.

This scenario is not how I would have written this script.  Truth be known, I still don't like it...but it is doable.  Diabetes is trial by error, baptism by fire, and living on the edge all the time.

This is J's disease...and today is his day to how it who is boss.  I know he will be fine.  Prayer and good thoughts for his OCD, Type A controlling momma would be most appreciated.

Normal is way overrated...

Life is busy.  Life with diabetes is non stop.  Non stop thinking. Non stopping counting, dosing, corrections, figuring.  Sometimes, non stop worry.

Imagine the desire to build a wall and protect those we love from anything and everything -- including diabetes.  Alas, you can run, but you can't hide..diabetes is here to stay for awhile.

Recently, we returned to Orlando, "the scene of the crime." The place we heard the words, "Your son has type 1 diabetes."  We heard a whirl of other things, ICU, insulin, shots, DKA and who knows what else.  This return trip was different.  It wasn't planned to be anything, yet it was.  For J, it was filled with flashback memories of things and places that he had little recollection of.  For me, it was a moment of remember when...

J is three years down the diagnosis road.  He has a DAD (diabetic alert dog) named Reno.  He uses an insulin pump, a CGM (continuous glucose monitor) and we Nightscout 24/7. He is healthy and overall, normal teenager happy.

This trip, without knowing or trying, became about embracing the new normal. Defining boundaries. Living by our mantra, "He may have diabetes, but it does not have him."  So without much hesitation, a split second decision (almost so I wouldn't change my mind) I suggested something I had fought for 2.5 years.   I suggested he went off the pump for part of the trip.  Something I didn't want, was kind of terrified of, yet was ready to conquer.  An hour later, a call to the MD...and the pump was off...yet so was the CGM (Accckkk!!!!)  Without the CGM, there went Nightscout and the Pebble watch.

You know what?  After I caught my breath (might have been hyperventilating), it was okay.  It was as close to normal as he had been in a long time.  Nothing attached.  No technology.  No constant stream of information.  This was old school diabetes management -- and we were doing it, and it was really okay.

For a brief (felt like forever) two days, checked his blood sugar more routinely (Remember no CGM either), and did shots of Lantus.  We used a system called untethered insulin management, where he actually reattached his pump to deliver insulin instead of bolus shots.  This system worked, and worked well for him. Perfect?  No, but what system is?  Would I do it again?  In a heartbeat.  Why?  Because we are fighters, and diabetes won't win.  Not at home. school or vacation.

Normal is over-rated anyways.