A Moment to Celebrate in a Journey Unfinished

    Last night was a good night.  I came home so wound up I didn't think I would be going to sleep.  My nervousness had been building all day as I counted the hours until I would take my turn in front of the school board with our good friend Nicole.  I rushed through my morning routine to listen to her interview on the radio.  I cursed the satellite company because they don't carry the channel that her televised interview was on....  I could NEVER be a mother of 6, let alone keep up that pace (she rocks!).

   As much as I feel uncomfortable with public speaking, I couldn't keep silent on this.  School was our first and biggest issue beyond diagnosis.  The issues with some of the schools gnaw at me incessantly.  So, when I saw the opportunity to work with a great group of people and fight for change, I didn't think twice and I've never looked back.  Change is necessary and must happen.... and last night the big wheels moved a little bit in the right direction as the school board trustees passed an amended motion to have administration create a consistent policy for students with chronic illnesses.

   I kinda expected that a stand-alone policy on Diabetes wasn't going to be the case and we'd end up as a chapter in a larger policy covering many diseases, but in a way I'm glad.  Working with Sue and Mark and Jan and Nicole has been, and continues to be, a great experience and if our work can help open doors for others, then I say all the better!

   I'll admit, I haven't been around that long.  This fight has been going on and off and on again for quite some time, so in the grand scheme of things I'm a little piece in a huge puzzle, but I am so thrilled and proud to be that small piece knowing that we are moving forward to better situations for our children and their friends and classmates who need this fight fought.

   Administration has until January 2011 to draft a policy for debate and voting.  Yes, there is still a possibility that this could get dragged out for God knows how long, or worse yet shelved.  There is a lot of work still to do in the coming months.  Our supporters are growing and we will need them just as much as we move forward and have our say in the policy and promote and support it in January.

   One of the first things I learned about dealing with D, and turned out to be a valuable life lesson in general - celebrate your victories, and then build on them.  I could never adequately put into words the respect, gratitude, and appreciation I have for those who came before us in this fight as well as the same for those who are with us in it now; what I can do is use every means at my disposal to continue the fight and help ensure that we only gain ground.

Last night's speech to the board:

   Good evening and thank you for this opportunity to address you.

   I have a 5 year old son who was diagnosed with Type 1 Diabetes 16 days before his first day of Junior Kindergarten.  It changed his life forever and we now battle a disease that is 24/7 and potentially fatal.

   Still in shock over the diagnosis, we were shocked again by how ill-prepared and unable the school appeared to be to support a young student with Type 1 Diabetes.  Jonathan turned 4 on his first day of JK.  Diabetes management and self-advocacy were (and still are) far beyond his ability. 

   During the first week as I met with the teachers and the principal and tried numerous times to contact administrators, it not only felt as if I was the first parent with the first Type 1 child in a primary grade, but worse, it seemed as if he was not going to be able to attend school at all.  We value the Catholic education system and the important role it plays in the development of a child; denying him his Kindergarten years was not an option we favoured. 

   Fortunately, after much persistence and determination throughout the first months, we were able to cobble together a care strategy for Jonathan.  This was a daunting task, that at first seemed impossible and in retrospect had a level of difficulty that shouldn't have been necessary.  We had to do this in isolation and with no apparent precedent.  We not only had to invent the wheel, but engineer the machine.

   Despite the roadblocks created by policy and apparently unwritten rules, we have been blessed with a principal and teachers who work with us as much as possible, within the limitations imposed upon them, to help ensure his safety and scholastic success. Our achievement, even with it's shortcomings, is not common and without standards in place, not only does every family have to take on this feat alone, even maintaining the level of support some have achieved is threatened by things as common as teacher and principal changes.

   There are upwards of 240 individuals of school age in one Windsor clinic alone, with an average of 29 new diagnoses per year of age 16 and younger.  Since this topic was last visited here, 2 more students have been diagnosed within that clinic.  This also does not include children receiving care outside of Windsor nor those grandfathered into the endocrinologists private practices.  Type 1 Diabetes is the #1 chronic illness among children.  This is not going away anytime soon.

   We are not asking that teachers and staff become medical professionals however, we are asking for standards and consistency as it pertains to the daily needs of students with Type 1 Diabetes, including:

- Clearly defined roles and responsibilities for parents, students, teachers, staff, and administration.

- Mandatory diabetes education of all school personnel who will be in contact with the student.

- Definition of the needs and rights of the students as well as anti-discrimination guidelines.

- A template for student specific care plans that would be developed by the student’s parents and executed by school personnel.

   There is no need to wait for a tragedy to prompt legislation as was the case in "Sabrina's Law".  We are fully aware today of the risks, and the appropriate steps necessary to mitigate those risks.  A policy, fostering a consistent and focused approach, would not only help facilitate a smooth transition, but would also eliminate the way each student is subject to the arbitrary decisions of individual schools.  With educated teachers and staff and a care plan in place, school personnel will be far better equipped to support the student’s needs.

   To delay or dismiss this would be an unconscionable violation of our faith and values.  Implementing a policy to better address the needs of the students is a small measure of work that could very well save lives, the lives of our children, our students; the lives that we claim have an importance second to none.

Today's article in the local paper:

***WARNING: There is a huge error that Nicole is working on getting a retraction printed - she was grossly misquoted.  I debated on posting this link, but I think it is a good reminder that no matter how many times we repeat ourselves and try to get the message across, there is enough ignorance* (for lack of a better term) that bad information can still get out and we need to keep sending the same messages to help people become properly informed.

*I use the word "ignorance" reluctantly because this guy is a good reporter and did well to get our story to print right away, but made a critical mistake because he misunderstood.

Catholic board to craft health issues policy

    Thank you to all those who support us, and thank you to all those who inspire us.

The Princess

   I'll admit it, I have a great deal of guilt about this.  I racked my brain for the last 24 hours to think of something, anything interesting in my life that has nothing to do with Diabetes.  Me?  Well, not so interesting.  My work?  Yeah, no, this would be a 3 day b!*@# fest.  It took me almost 24 hours to figure out what to write about.  Here comes the kick in the head.  It's Alexandra.  I have a beautiful six year old daughter that is my princess, one of my few true loves, and it took me a whole day to realize how little time I spend talking about her.

   On December 10th, 2003, I took my wife to the hospital for the first steps of having labor induced.  The following day we went back for the big deal.  I remember sitting in the room finally cracking the book she bought for me "So, You're Going to be a Dad".  It was a fairly calm event in the beginning.  The nurse's name was Grace Kelly (yeah, how could I forget that).

   Shortly after 5pm she was having an emergency C.  There was meconium in the womb and she was not dilating past 4cm.  We actually bumped another mother out of the OR, which may not be a big deal on any other day, but this was the grand opening day of the new ward at the hospital and the closing of the maternity ward at the other hospital.  Alexandra was officially the first baby born after the big change.

   After a big fight - Alex vs. the OBGYN (she scooted to the top, not wanting to come out, first proof of superior intelligence) I remember, and will never forget, the nurse handing her to me.  I cried as I fell in love in a way I never had before and never before imagined possible.  She was the most beautiful little person I had ever seen.  It was a perfect moment.  It's a moment I can't help but get choked up over every time I think about it.  If I were Robin Williams in Hook, this would be my happy thought to fly.

   I know everyone says their little baby is the most beautiful and special - everyone's right - but Alex was our little bundle of beautiful perfection.

   She has grown and changed quite a bit over the years.  She is smart and goofy.  She can get her b!*@# on, and she can give you that look that will make your heart melt.  I've tried extra hard in the last 13 months, 1 week and 2 days to make sure that she gets some extra special attention.  Unfortunately, the matter of fact is that Jonathan often needs a little extra.  I try to, each week, make some special time for just her and I to do something.  Usually it's Sunday mass and then brunch, but with recent changes Jonathan can now more easily join in odd hour meals so he's joining us at church.

   Alex is in grade 2 now.  She is quite popular and has many friends (she's doing way better than I did anyway).  She's not perfect; a little better than the average student, but she's bright and full of life and her teachers are quite pleased with her progress.  She says she wants to be a dentist when she grows up.  I'm sure that may change a dozen times before high school.  Really, it doesn't matter to me what she chooses as a profession as long as she's happy, secure, and has a full life - God willing some grandchildren for us so I can have some sense of payback.

   I love my little girl more than life itself.  She is one of the most precious gifts I have ever received, and I will love her for ever.

Here is my Princess:

There may have been more air in my head than in the line

   Yikes!  28.7 (517)!  That was the call from Latchkey at 9am this morning as I was in the middle of a conference call with a customer and our plant (not to mention the pesky sales guy that was motioning to me through the window because he needed something for another client).  My first thought: #*@&!, another kink.  My second thought: Latchkey can pump - go for it and call me back in an hour!

   10:10 Latchkey: "He's 7.7 (139)."  Me: "Did he have his snack yet?"  Latchkey: "Yes, at 9:30.  We're going outside to play now."  Me: "Ok, that's a much better number."......  After I hung up the phone my math thingy started working.... 28.7-7.7=21.... 21/1hour.... #*@&!.....  Wuife IMs me: "You probably should have had them test again to confirm the high."....  #*@&! And in the car we go.......

   I get to the school at 10:20 (it's only about a 15 minute drive from the office).  I test him again - 7.4.... Phew!  I pull out his pump to double check settings (I did a quick-draw battery change this morning right after breakfast).  All is as it should be.  Then I notice at about a palm-width outside the reservoir there is an air bubble about 1 1/4" long.  #*@&!  Then I look along the line and see about a half dozen ones along the way.... #*@&!  #*@&!  #*@&!  So now I wonder if it was a bad reading or he wasn't getting insulin... I give my head a shake and look at the math again 21 / 1hour....  Bad reading.  I disconnect, pull the reservoir, tap the air that wasn't there a day and a half ago out of the reservoir, rewind, prime out the air, reconnect.... stopping short of a fixed prime... Phew!

   I put him all back together and make my notes.  It's only been about 15 minutes, but I test him again... 6.9.  OK, he's pretty much flattened out, no need to give carbs.  I ask them to test again at 11 and call me.  On my way back to the office I call the clinic to let them know what happened and get caught up on their feedback from the weekend and yesterday.  Mary suggests to me to give him a little something.  I take that beautiful and correct piece of advice and stick it in the back of my head thinking if he goes south again at 11:00 (just 15 minutes away now) that I'll do that, but I've fallen for this trick again and bounced him right back up.  We chat for a while, schedule the pump changeover for Friday, and ponder the mechanics of the body of a child and how insulin works - thinking of the steep drop and then trailing out into the low 7's high 6's.

   I get back to the office and a few minutes later the phone rings... 6.7.  Booyah!  Great number and the nurse will be there in 45 minutes.

  11:50 - Phone rings.  Nurse: "Hi, he's 2.8 (50)."  #*@&! "We gave him a pack of fruit gushers, what would you like us to do?"  Huh? Do?  Read the orders!  Me: "Ok, give him his lunch and bolus after based on the BG of 2.8 and his 34g of carbs."  Admittedly, this is the first low she's had to deal with on the pump.  So he spent the rest of the day in the mid to high teens.  He came down into the 11's (~200) as we sat for dinner.

   I started into my eggs hoping that the glucoaster ride was over for now and pondering the funny BG curve between 9 and noon.  Then it hit me like a ton of helium tanks on the head....  That little streak of great numbers at 10-11... Snack carbs!!!!  The animal crackers made a brief appearance to save the day, but they just weren't enough for a bolus that probably should never have been.... Sheer, dumb luck!

   My little trip to school today was educational:

1) Odd-ball high?  Retest (I got an F)

2) Steep crash, give extra carbs? Yes (trick question, the temporary "good" numbers brought me to a D+)

3) You only need to check for air bubbles when you set up the line?  False (I must have slept in that day, C)

4) And the bonus question: When in doubt, carb? Yes (over thought that one way to hard, B-)

Result: Do not pass go, do not collect $200, if you ever want to make it to Boardwalk, remember what

you learned on Mediterranean Avenue.