Sunday, September 11, 2016

Because Growing up is Hard Enough

This year, our second daughter decided to move into an apartment in her college town and take some summer courses.  In the short 2 months she has been away, she has definitely applied the life skill of problem solving.  The last few times she has called me, she is the epitome of Murphy's Law.  I have renamed it Taya's Law in my mind.  She learned how to change a light bulb of  light on a 10 foot ceiling without a ladder.  (Let's hope she doesn't do that again!)  She learned how to find financial aid when FAFSA fails and that you have to work hard and long to make money.  She learned how and where to get her oil changed so they don't try to convince her that her car will fall apart tomorrow if she doesn't fix this or that.   She learned that fun stuff costs money and so does locking yourself out of your apartment.  She learned you can't win a wrestling match with road dividers and she is on a first name basis with her building manager after discovering a wasp's nest in one of the bedrooms. (Very gross!)  One recent text simply stated, "I hate doing adult things."

All of the above incidents could have happened to anyone, well, maybe not anyone in 8 short weeks
Taking a break from anatomy
to do blood sugar check/
insulin bolus
but these incidents aren't exclusive to Type 1 Diabetes.  To top all of this off, she is learning to manage her own healthcare.  She has started seeing an endocrinologist, a new dietician and a new diabetes educator.  She is learning to navigate these relationships so that she can find balance between the life she wants to live as a normal college student and the life she needs to live as a young person with a chronic illness.  I am so proud of how she is learning to advocate for herself to find that balance.  To that end, she made the decision to take a vacation from her insulin pump. This, I am told, is a pretty typical occurrence.  She is just sick of being "plugged in" and wants to try something different.  Tylie made the same choice at age 18.  The difference was, Tylie was at home working with our own familiar pharmacy and healthcare providers.  Taya's first frustration came when her endocrinologist's PA, a young person herself,  was very supportive and encouraging.  The diabetes educator, an older woman, was not.  Taya stuck to her guns and chose to stick to the plan she worked out with her PA, which includes a shot of an ultra long acting insulin daily as well as 3-7 shots of short acting insulin as needed to cover food or treat highs.  Let that sink in...up to possibly 10 shots in a day not including finger sticks!  On the pump, she would still do finger sticks but only change her set (the part that delivers the insulin to her body) every 3 days.  Essentially she is exchanging roughly 2-3 "shots" a week for potentially 70 or more!

Next up, finding a pharmacy.  Since she was unfamiliar with Grand Forks pharmacies, her physician sent the scripts to a well known chain.  I gave her the information she would need for insurance and all should have gone just fine.  At 6 pm, the phone rings, followed by the question, "How come everytime I try to do adult things something goes wrong?"  They would not fill her prescriptions because they said her insurance was denying it.  After a frantic call to me, who called our insurance company, it seems the pharmacy was not entering her information correctly.  After another couple hours of run around- I sent out an SOS to people living in Grand Forks who finally hooked us up with a pharmacy near her that worked with her on a much more personal level.  At 19, picking up cold medication used to stress me out.  I can't imagine how frustrated she was waiting to get the medicine that is required to save her life while all her friends were off having a relaxing summer afternoon!

Blood sugar check before the Bison game. 
Tylie, too has had numerous challenges in her quest to fit diabetes things in with 21 year old things. Her path to diabetes independence was a bit less bumpy as she had the luxury of a more gradual transition.  An unexpected blessing for the girls is that for the first time since Taya was diagnosed, they do not have medical personnel comparing them to each other as they now see different teams.  But, we can't forget TJ as he transitions to middle school and hormones and balancing friends, sports, and his desire for independence.    In a world that is fast moving and ever changing, there is one certainty for these kids of mine--diabetes isn't something they can grow out of, ignore, or pop a pill to cure.  They need insulin and sometimes juice boxes for life support.

My desk at work showing a week
of blood sugar chaos for the middle
school boy.  

I encourage you to help us keep advocating for a cure by reaching out to your government officials and ask them to sign a letter of support for the Special Diabetes Program.  This program provides $150 million annually for the National Institute of Health to continue vital research on Type 1 Diabetes.  Finally, if you feel so moved, help us reach our family goal for the JDRF One Walk next weekend and donate to our team- T1-cubed and of course, we'd love for you to walk with us.

Friday, June 24, 2016

Innovation, Sustainability and the Power of Yet

Sustainability and Innovation: two words I have been hearing quite frequently during my "day" job.  I heard them in my "mom" job the other night, while attending a JDRF Board meeting.   I remember thinking how strange that these two words keep popping up.  I looked them up (former ELA teacher, it's what I do)!  Sustainability: continuous, supportable, worthwhile.  Innovation: modernization, newness, shift, variation.  I like them; they are strong words.  I understand the power in them.  It was the next day when my two worlds collided.  I am reading a book called, "Bringing Innovation to School: Empowering students to Thrive in a Changing World" by Suzie Boss.  In it, she refers to an inventor named Dean Kamen.  Mr. Kamen is the inventor of the Segway scooter and...the first portable insulin pump!  Now, keep in mind, I am the nerdy mom reading this book while her kid warms up for his baseball game.  I can only imagine what people observing me might have thought when the big "Ah-ha" of personal connection hit!  Sustainability and Innovation:  where would my kids be without them?

Historically thinking, the two words do seem better suited for a business meeting than a workshop for teachers. But, in a rapidly changing world, the importance of teaching our students 21st Century skills and competencies is essential!  Let's just stay focused on health and Type 1 Diabetes in particular.  In the U.S., between 2001 and 2009, there was a 21% increase in T1D diagnosis in people under age 20.  1.25 million Americans are living with T1D: about 200,000 youth and over 1 million adults.  Most alarming to me is that only about 1/3 of people living with T1D in the U.S. are achieving target blood glucose control levels.  If this doesn't shout the need for innovation and sustainability, I don't know what does!

 When Tylie was diagnosed at age 4, we gave her a cocktail of insulin delivered in up to 5 shots a day.  In addition, we checked her blood sugar between 5-10 times a day.  It was draining, time consuming and stressful!  By the time she was 8, there was a new, longer acting insulin available and insurance would cover an insulin pen- the poor man's pump.  This made life somewhat easier but still required frequent shots, pokes, and endless math calculations.  Finally, when she was 12, she got an insulin pump.  While we still had finger pokes, she only had to change her set every three days and the pump did the math for us.   Big improvement on 5 shots a day!  Innovation- someone's forward thinking idea to make another person's life better- gave her a certain amount of freedom she wouldn't otherwise have had.  However, when she turned 18, she chose to go back to using her insulin pen and giving herself shots.  The endless days of being hooked up to a machine, no matter how small, was not what she wanted to do. In her mind, the portability of the pen was more sustainable.  In addition, new technologies (more innovation!) allowed her to calculate her insulin more accurately and to keep more accurate track of her shots.  People ask her why she is no longer using a pump when it now has the capability to also monitor her blood sugar.  Truly, the continuous glucose meter is a blessing to many.  For us, it has been a struggle.  TJ has uses it, but rarely.  It falls out frequently, malfunctions more than we like, and while it does give us a more continuous picture, we still need to do the same amount of finger pokes to calibrate and check accuracy.  The effort it takes is not sustainable with his busy lifestyle.   Even Taya, who initially saw the pump as the best gift of her life (diabetically speaking) has been considering taking a break from it.  So, each of the kids tries to balance new technologies with old in an attempt to maintain target blood sugar levels- sustainability.

As a teacher, my goal was to create a culture of inquiry in my classroom.  Now, more than ever it is essential for students to be able to look at everyday things from different angles and make connections to seemingly irrelevant objects or pieces of information.  This remains my goal as an instructional coach- how can we move teachers forward in their thinking so that students in their classrooms feel empowered to take risks?  How can we build capacity in our system to allow, encourage, and above all, expect our students to seek answers to questions that haven't even been asked yet?  Anyone can Google a fact, but it's what you do with the information that can make the difference.  Somewhere, right now, someone is working on ways to continue to improve on Mr. Kamen's insulin pump.  In another place, someone else is working on a cure so that an insulin pump, once the innovation, will be obsolete.   For any innovation to be successful, it must be sustainable- it's an endless cycle.  We live in a fast paced, ever changing world.  Sometimes it scares me as we focus so much on the bad things that hit the news.   But, if I'm being honest,  I'm excited for the future of my kids, both educationally and personally.  We are making steps to get where we need to be, we just aren't there...yet.

For more information on T1D facts visit   You can also learn more about and/or how to help support the innovation that is happening in our diabetes community due to the Special Diabetes Program.  Finally, is also a little parent guide on 21st Century Learning.