Wednesday, August 3, 2011

I haven't blogged since when?????

No way!!!!  It is not possible that it has been three months since I last posted on here....
Well, for those of you that thought I had fallen off the face of the earth - it ain't so.  My mind may have, but I have been here all along.
So... being 10 minutes past my bedtime I'll do the super-duper coles notes (x18 = cliff notes) on the last 92 days.

Had a beautiful day for Jonathan's Journey's Second Annual Carwash and netted a nice take for JDRF

Walk day was awesome.  Sunny, not too hot, great turn out and best walk day total in local JDRF history.

Jonathan's A1c at his July check-up was down to 7.7% (clinic's target for his age is 8.0%)

The mentor program is off the ground and the outreach group is retooling for a September relaunch.

I finished tonight my first draft for the school policies talk at the Back To School event on the 31st.

Ok, I'll admit it.  I got in a real funk in the spring.  I don't know exactly why, but it was almost worse the the months post-Dx.  Whatever the cause though, the fog seems to have lifted somewhat.  Almost 2 years under our belts and some new changes coming up, maybe I cleared that hump.  Who knows.  Anyhoo, things are pretty good and for the most part really routine.  In the case of T1D though... I'll take boring any day!!!

Tuesday, May 3, 2011

Delusion, a chimera in my brain, a fancy, my ignis fatuus

"Normal is what everyone else is and you are not." Dr. Soran - ST:Generations 
    I was told shortly after Jonathan was first diagnosed that we would "find a new normal".  At the time, I thought that meant that we would integrate Diabetes into our lives and eventually the wound it opened would heal around it and it would just become a part of us.  In a way I guess that's kind of what happened, but I think it went a little beyond that.
   Yesterday, as I was approaching the verge of a mini-mental collapse over a bunch of BS at work, I sat down with someone to talk and they were surprised about how stressed out I was over the matters at hand.  They said, "well, I'm sure things at home aren't helping either."  I knew they were referring to dealing with my son's Type 1 and at first I was about to dismiss the notion that it could be a major contributor, but then it suddenly hit me - my little boy's life hangs in the balance of decisions I make every day, he's basically on life support and that which keeps him alive could kill him.  We've barely had a solid night's sleep in 20 months and there are many more nights to come...  And then it smacked me like a ton of bricks, somehow, some way, this had become "OK".  And I thought to myself "WTF!?!?!?!"  This is NOT OK.  This is not what a 5yr old should have to live with, this is not how a family is supposed to be managing their lives, this is totally wrong.

  I think what happened is (and I don't want to give it up, but I think I'll have to change my approach) in all my efforts to make life an normal as possible for Jonathan and the rest of the family, and trying to assure people that things are under control and all is well, I somehow tricked myself into downplaying just how perilous and damning this thing can be.

   Then, just last night, after a day of phenomenal numbers (like non-diabetic numbers), Jonathan was a little high at 10pm (13.5 / 243), so I pushed his buttons and didn't really give it a second thought.  At 2:30 this morning I did my nightly shuffle into his room to find 2.9 (52).  Oh $#!^!  3/4 of a cup of milk and 40 minutes later he was 5.9 (106) - 5.7 at 6am, and 5.9 at breakfast.  So what the heck would have happened if I hadn't done my nightly rounds?  I shudder to think, especially after a Princess' recent horror.  I've never questioned a 13.5 before, that's not totally unusual, and normally a wonky reading is over 20 and that needs to be re-checked.

   This morning I got another one.  Part of my morning routine is to check the mail, weather, and updates on my phone before moving on to get ready, and there it was on the top of my news feed:
"In my house the "medicine" that could save you, could kill you.  In my house juice boxes save lives. In my house parents never sleep.  In my house our days are measured in numbers.  In my house my child must be an adult.  In my house we dread bedtime.  In my house blood is shed every day.  In my house this is the norm.  Type 1 lives in my house."
    So despite my self-administered delusion, the fact of the matter is, there's aren't seven days a week - there are 3 days in a set.  A 2am walk to the washroom isn't something that will happen after 40 - it will be routine for the next 20.  As surely as there are 365 days in a year (occasionally 366) - there will be 3300+ bloody fingers, 122+ set changes, 4+ clinics / A1c tests, and 31,536,000+ chances to do it wrong.
   I guess "normal" is we make it, but the truth is my head has been in the sand lately, and while ignorance can be bliss it can become hell.  While living life somewhere in between I'm reminded that it's important to keep the truth in mind.

Sunday, March 27, 2011

John and Jonathan

   Jonathan and I had the opportunity to do something pretty cool recently - we met John Chick of the NFL's Indianapolis Colts.  John is a defensive end who, with the CFL's Saskatchewan Roughriders,won the 2009 Grey Cup championship and was named the CFL's Most Outstanding Defensive Player for that same year.  It takes a lot of hard work and dedication to become a professional athlete, but it's all the sweeter when Type 1 Diabetes doesn't stop you.

  John was diagnosed at the age of 14 while already playing football in eighth grade.  In an instant it seemed to most like that was the end of his dreams of becoming a professional football player - not to John though.  Managing his diabetes with multiple daily injections, he continued playing and received a scholarship to Utah State University.

   In his freshman year his blood sugar dipped too low while driving after a practice and he rear-ended a stopped car at about 70km/hr (~45mph) totaling both vehicles in the incident; fortunately there were no serious injuries.  He considered this a huge eye-opener and decided that MDI was not reliable enough and it was time to switch to the pump.  Although the linked video might be considered somewhat misleading in how "automatically" the pump maintains blood sugar, he did find it to be a huge improvement over shots.

   John wears his pump all the time, even when playing, and in six years on it has never broken one despite the physicality of his profession.  He spoke to us in a very matter-of-fact way about how Type 1 has been a part of his life, but never a defining or limiting factor.  He talked about the importance of being positive and believing in ones self, but also how important it is to stay on top of this disease and make sure that it doesn't get an upper hand.

   He also emphasized that just as important as it is to not let Diabetes limit you, don't limit yourself, don't settle.  Yes he is a CFL champion and an NFL player, but being on the team - being on the practice roster - isn't enough, he wants to be the best.  As a 28 year old husband, father of four children under the age of 5, and one of the top athletes in his sport, he knows that there is still more to do and he has no doubts about doing it, diabetic or otherwise.

Pause the audio player and press play below:

   I don't think Jonathan really took in a lot of the detail of what John talked about, but sitting there and watching him stare up at this 6'4", 260ish pound guy I'm pretty sure he got the hint that diabetes doesn't mean the end of a journey, you just have to bring it along with you and bend it's will to your own.