Taking a Left Turn!

 Years ago, I stopped writing this blog because I did not feel I had the right to be the one to tell my children's story. As they became older, my experience as a mom overlapped too much with their experience as a human, and I wanted to respect their privacy. But, now, years later, I still want to write so I am bringing this blog back from the dead. It will need a new name for it's new purpose but for now, here is my "first" entry! 

In the first reading of this prompt, my mind went toward a traditional definition of an “international environment,” meaning living, working, or attending school outside of my experience in the United States. As I reflected more deeply, I recalled memories from my childhood of sitting around the table at the home of my friend, Suli, and her family who lived on our farm during the summers. Around me, the chatter of voices- some English, some Spanish- all excited to tell the stories of the day while Suli’s Abuela supplied us with a never ending supply of fresh tortillas. As a very young child, I believed Suli to be my sister. We spent so much time together and could not understand why she had to leave and the accompanying sadness I felt at the end of those summers. Growing older, I recall the feelings of surprise, then disappointment, and then anger when I heard derogatory comments about the migrant families that populated our farming valley. My positive experience with Suli’s family led me to choose to work at the local migrant school for two summers during my undergraduate years. My final summer as an undergraduate, an opportunity arose for me to move to San Francisco to be a nanny. Here is where I had the great privilege to be invited into the Jewish culture. My family, the Zviblemans, describe themselves as non-traditional, yet evidence of their history resided throughout the home in the form of things such as the Star of David, the hamsa, the Menorah, and books. We would visit the maternal family where  Bubbe would treat us to homemade latkes, knish, and apple cake. When the paternal family visited, I was shocked and humbled to see the numbers that still marked the arm of Zayde, while he regaled us with stories of humor over those of despair. I believe these early experiences are what began my fascination with stories of people unlike myself and why equity has become a grounding value in my work as an educator. I had the great joy of experiencing international environments and education second hand through my daughter, Tylie, who served as a Fulbright English Teaching Assistant in the Czech Republic. Vicariously, through conversations and her blog, as well as first hand, I discovered that prejudice and misconception exist everywhere. Upon being picked up at the airport and taken to the little town where they teach, her mentor, very matter of factly, pointed out the school they taught in, calling it “the good school.” I commented on the children’s drawings showing in the window of the school next door and she replied, “Oh, that school is for kids who can’t learn. We are lucky we don’t have them in our school.” As a special education teacher at heart, this took me by great surprise but my daughter shared with me that it was a common sentiment among many as was the very stereotypical view of BIPOC people. As an educator, I appreciate diverse cultures and am committed to improving systems to provide equitable experiences and positive outcomes. These experiences in Europe have strengthened this commitment. I have engaged in learning around culturally responsive teaching, specifically following the work of Zaretta Hammond, blending brain-based learning strategies from neuroscience with culturally responsive teaching. The experience of engaging in that workshop and subsequently designing a local course has caused me to engage in the important work of reflecting on my own biases. As our multilingual learner population increases within our state, I have been learning more about translanguaging. I am currently studying more on this topic. Inherently, I am an observer. I believe understanding how people use language in real life can help support my own learning of a new language and navigation within a world in which I would not be proficient as a communicator in all contexts.

These are the things I've been thinking about as I consider my place within education. Stay tuned for more musings.

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.

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 JDRF.org.   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. 

Consider Perseverance

Mowing the lawn this morning, my mind got stuck on the word "perseverance."    This thought was triggered first by the mysterious ivy plant that started to grow on the west side of the house this summer.  "How can this thing grow here?  It wasn't here last year.   I didn't plant it. I even tried to pull it up, but it keeps coming back."   However, like the mouse in Give a Mouse a Cookie, my thoughts wandered around before coming back to my starting place.

This stubborn green growth brought me back to Friday.  A 7th grade colleague started the year with a lesson on grit.  Last year, the sixth grade reading teachers did a project with the theme of perseverance.  The team I work with decided to build on it by sharing another book with our students and doing team building activities around that theme.  Friday, our colleague sent us an email to let us know the kids repeatedly talked about perseverance in some form during their opening discussions. This begs the question: Is perseverance something that is taught?

This lead me to consider my aunt, Connie.  She lost her arm in a farm accident in her late teens.  I do not remember her any other way.  I have never had this discussion with her, but I imagine she had to have gone through a tremendous time of anger, self-doubt, and frustration and most likely still experiences those emotions regularly.  However, what I see when I think of her is not struggle but acceptance- this is who I am- and strength-  I'll take your challenge.  The beautiful quilts she makes are a physical representation of her perseverance.  So, I consider: Is perseverance innate?

A gift from my aunt

And, now I'm thinking about my grandma, Norma.  For twelve years, I was the only girl cousin.   I spent many hours in her kitchen hiding from the boys and listening to her sage advice while she canned our beloved "Sauce".   TJ was diagnosed with diabetes two days before she died.  I had actually planned to leave to see her when TJ was admitted into the hospital.   Someone had told her TJ was sick, but not to what extent.  She was always very worried about the girls and diabetes and I didn't want her to have her last days with this burden.  However, I think she knew.  When I finally did make it to see her, she held my hand tight and told me, "Go home and take care of those kiddos."   Even to the last minute she found humor in life when she expressed frustration, "Dying isn't like the cowboy movies when they just shut their eyes and go."  Ever practical, my grandma.  I try to remember that when my emotions get me flying.  I hear her voice in my head, "Slow down, do what needs to be done."  So maybe, perseverance is an expectation, something modeled, something part of your family culture and norms?  

Take my kids for example, I don't remember ever sitting down with them- any of them, diabetes or not- and having a conversation specifically about perseverance.  We encourage them when they are frustrated, we push them to challenge themselves, we acknowledge bad days, we help them find solutions.   They see us fight and struggle in our own lives.  I have seen tears over painful set changes and lost sites.  I have heard angry words over the unfairness and the frustration of battling an invisible enemy; one who certainly does not play fair. This worries me, especially with two away at college.  It will be hard to manage this old villain in a new castle and I hope they make good decisions.  I have watched TJ find a positive in the fact he has to bring his own cake to someone else's birthday party.  ("At least I know I'll like the frosting.") Could perseverance be just a choice;  part of living a life rather than watching it go by? 

After I finished mowing, I looked up the word in the dictionary.  There were many definitions but the key ideas of "determination", "moving forward despite difficulty",  and "effort" jump to the forefront. I then went back around to look at that ivy plant.  Considering, I never planted it, have no idea where it came from, and have even tried to kill it- I think it embodies perseverance.  I took a picture and I will place it in my classroom next to the picture of my family and my aunt's table runner.  Because maybe there are no clear answers to my questions.  Maybe perseverance is all those things at different times.  Louisa May Alcott said, "I am not afraid of storms for I am learning how to sail my ship." Sometimes we need a person to guide us in the decision we were meant to make or to teach us about the path we are meant to follow.  Sometimes perseverance is less of a choice; it is just what we do to keep moving forward when life throws a punch.

My uninvited green friend. 

Changes

Four years ago today, Troy and I were driving to Minneapolis for a weekend getaway to take in some Twins baseball.  On this particular drive, somewhere between Fergus Falls and Alexandria, I got a text from a friend I had lost touch with in recent years.  Her words instantly took my breath away and brought tears to my eyes.  "Addison was just dx'd with diabetes."  You see, we had become rather insulated in our little world.  We managed day to day.  We felt we were living successfully with diabetes.  We had ups and downs both in blood sugars and emotions but we were surviving.  We had become complacent and overly accepting of this disease in our lives.  Her text made me realize we shouldn't have to settle for this and no one else should have to live with it.

Now, four years later, we are in a different place.  We have become more active as a family in seeking a cure and promoting awareness.  I am no longer complacent or willing to accept that they will live with this disease their entire lives.  However, this has been a tough summer for me.  There are a lot of changes going on in our family.  First of all, two girls will be going off to college in two different places.  Taya will be venturing off to Duluth to tackle a biology major and Tylie is moving to Fargo to study History and English.  Just reading that you can see the differences in their personalities, yet it is hard for me to imagine one without the other. Tylie may be the oldest chronologically, but Taya has always been the one pushing her out of her comfort zone.   If Taya hadn't decided learning to ride a bike was a good thing, I am fairly certain Tylie would still be using training wheels.  Taya does things by the rules with order and logic and Tylie likes to dream and discover mysteries as they come along in her own time. They give each other balance.  What I have been learning in recent weeks is that they also give me balance.

Sending kids off to college is, in itself, an emotional event.  Now imagine those kids having diabetes. In addition to making sure they have bed sheets and coffee pots, my list includes finding a pharmacy and making sure glucagon is up to date.  In truth, I am terrified.  I have always been their back-up pancreas.  Even as they have learned to take care of themselves and I am more hands off, I fill the prescriptions, I follow their care, I see them daily.  I am up in the middle of the night when I hear the fridge open.  I am there when they are throwing up or have screaming headaches due to blood sugars that won't settle where they belong.  As they begin to make the natural separation from us and learn to live independently, I find myself anxious and unsure of what my new role is in both their real life and their diabetes life.  Endless questions run through my head and when I say them aloud, I can see their annoyance.  Does your roommate know what you are like when your blood sugar is off?  Does she know what to do if you can't do it yourself?  What if you get low in the middle of night?  What if you get sick?  Will you remember to check for keytones even if you don't think you have them?  I have managed to keep some thoughts in my head.  Instead of asking if there is a plan for where to keep pump supplies or syringes, I say out loud, "Do you need a microwave?" while quietly stashing AAA batteries and fruit snacks into the Target cart.  Much like four years ago, when I got that text from my friend, I realize yet again, we have become insulated.  I forgot to consider that there will be a time that they need to care for this disease more on their own, without me as immediate back-up.   They have to learn to manage it and own it in a way that works for them. I know we have raised them well.  I know they are independent and strong and resourceful and I am so proud of the women they have become. Frankly, I'm even a bit jealous of this new adventure they are about to undertake.  But, I know that diabetes does not play fair and that...well, that makes me angry.

Four years from now, we will again be in a different place.  The girls will either be finished up with college or working toward post graduate degrees.  TJ will be starting high school.  I want things to be different then.  I want them to move into homes without considering where to put all the medical supplies.  I want them to have families without fear of their health.  I want Addison and TJ to go college without being encumbered by a machine that doses medicine so food nutrients can actually fuel them.  Of course, above all, I want them to be happy.  Imagine how that would look in a world without Type 1 diabetes.

If you feel inclined to help make this a reality, please visit this link.  It will allow you to donate or join our One Walk team.  We are stronger together!  http://www2.jdrf.org/goto/T1cubed

This is Diabetes

Typically, I don't get too worked up or defensive about diabetes comments.  I've heard all sorts of things about causes and cures.  Yesterday, the CrossFit CEO chose to put ignorant and insensitive post on the company's social media accounts.

 Today, if you follow DOC social media at all, there has been a tremendous amount of backlash, largely from the T1D community but also from Type 2 advocates and rightly so.  The general public does not know the difference between Type 1 and Type 2 which negates their claim that the Type 1 community should have known they meant Type 2 in their parody.   The assumption made by CrossFit that we all "know" which type they are talking about is unfair for many reasons.  It promotes a stereotype that does a disservice to all types of diabetes.  It is hurtful to those of us that watch our loved ones battle this disease every day and especially to those that have lost people to the disease.  The thing about diabetes is that, no matter what type you have, it is never exactly the same for anyone.  This is why we get defensive.   The company had many opportunities throughout the day to clarify and to apologize and to truly educate.  Sadly, they missed their opportunity and that is really what has gotten under my skin.    Let me show you diabetes.
 

These three kids live a healthy, active life.  Two of them are going off to college, which opens up a whole new world of worries for this mom.  They have diabetes.  They didn't choose it, they didn't get it from drinking soda, eating fruit snacks, or too many donuts. It can't be cured by diet, exercise, cinnamon, or some magic potion beverage.  In fact, you can see a Powerade in this picture.  That little boy had a blood sugar of 60 when we got to the restaurant.  It was the unplanned effect of too much time swimming.  That sugar saved his life.  It wasn't the first time.  This is diabetes.

 

These lovely ladies are wearing pancreas necklaces.  Why?  Because they spent their days being TJ's pancreas.  When every other kids was out at recess, they were reviewing his numbers and trying to figure out why today he was high when yesterday he was low at the same time with the same activity and the same snack.  Or helping him to change his pump set because it fell out during PE. Or counting his carbs after lunch so we could be sure he got the right amount of insulin.  This is diabetes.

That little girl in the middle was diagnosed with diabetes at age 4, like my girls.  The other two have been friends since they were 8 years old and first went to diabetes camp.  They teach each other, learn from each other, and commiserate together, even when they are apart.  They truly are "blood sisters."  Somewhere today I read a comment that stated,  "T1 people should relax about the CrossFit post."  He understood that "Type 1 diabetics don't choose it, they are just dealt a bad hand. That's no reason to get defensive. "  Well, yes! I'd say they got a bad hand.  But, these girls bluff their way through finger pokes, set changes, shots, highs and lows and still manage to smile through tears.  This is diabetes.

These pictures represent some of the things a person with diabetes needs to live a healthy life. Granted, we have an obscene amount in our house with 4 of them but this is diabetes.

The big guy in this picture loves sports.  He walks regularly, he tries to eat healthy despite a crazy busy schedule of teaching and coaching.  He hates taking medication of any kind, yet he has to every single day.  These medications that work to keep his foreign kidney functioning, take a toll on the rest of him.  His pancreas can't keep up.  He didn't ask for it, he didn't choose it but he has Type 2.  Now, in addition to his daily dose of pills, he checks his blood sugar and he takes insulin shots.  This is diabetes.

The kids in this picture took their stories to Washington DC as part of JDRF Children's Congress.  A new group will be going in just a few short weeks.  I can tell you more stories about people I personally know: a little girl whose journey with pancreatitis lead her to diabetes, a student in my class whose flu diagnosis turned out to be Type 1, and list goes on.   This is diabetes.



  Here are a couple of links that summarize the differences and the causes much better than I can:  http://goo.gl/On5Szp, http://jdrf.org/life-with-t1d/frequently-asked-questions/   CrossFit, you got it very wrong.  Diabetes of any type is hard work.  People living healthy lives despite it deserve your respect--not shame.

Time to Kill the Beast

Last week, I was privileged to participate in JDRF Government Day.  This is an event sponsored by JDRF in which advocates from across the country meet in Washington D.C. Over the course of four days we learned about research progress, networked with other T1 D advocates, and met with our respective state's elected officials.

On the first night, we stood and introduced ourselves and spoke of our connection to T1D.  I fought back tears more than once as roughly 200 people told their stories.  We heard of success stories and we heard of losses.  Despite the resilience shown by all present, the message is clear, this story of T1D needs a happy ending and the sooner, the better.

We heard that The Special Diabetes Program (SDP) is making progress.  So much so that Dr. Aaron Kowalski- JDRF's Chief Mission Officer and VP of Research stated, "We have this disease on the run."  As a person living with diabetes himself, he has a reason to give chase.  Since the inception of the SDP in 1997, we have seen the improved technology including better CGM's and the Artificial Pancreas.   However, what about the person who doesn't want to be attached to a device 24/7?  To that end, we saw an Encapsulation device as small as a band-aid that could potentially be implanted under the skin and allow a person to live insulin free for up to two years.  We heard of research projects such as The Environmental Determinants of Diabetes in the Young (TEDDY) that has made incredible strides in determining the causes and progression of T1.  SDP researchers have identified over 40 genes associated with T1D bringing the total to 50 known gene regions- up from only 3 just a few years ago.

While Type 1 and Type 2 are two different animals, SDP research has benefited both in terms of preventing complications.  Continuous Glucose Monitors (CGM) and the artificial pancreas systems can improve glucose control in both populations, thus lowering long term complications such as eye and kidney disease.  SDP is accelerating a treatment which can reverse vision loss in patients with diabetic macular edema.

The SDP not only benefits people with T1D but also those with other autoimmune diseases Collectively, autoimmune diseases affect approximately 5-8% of the population.  Some of the genes associated with T1 are also associated with other autoimmune diseases.  Research and therapies effective for T1 could have a positive effect on other autoimmune diseases.  This little bit of information about autoimmune diseases is particularly personal to me as my immediate family seems to collect them like other people collect stamps!

We spoke with our members of the House and the Senate to bring our stories home, to demonstrate the progress and the need for SDP to continue and to ask them to please vote to extend the SDP, which is set to expire in September 2015.  It is currently attached to the "doc fix" and will potentially be renewed for 2 years.  Our voices were heard as the House overwhelming voted in favor of HR 2. The Senate will continue to discuss their corresponding bill after the Easter break and hopefully bring the bipartisan bill to a quick Yay vote.

While all of this progress is hopeful, the ending to this story cannot come quickly enough.   Yesterday, my husband sent me a text telling me that his blood sugar was 395!  I responded with an inappropriate statement,  thinking to myself he was one day early for an April Fool's joke and a terrible one at that! But, no-- it was no joke.  Troy had a kidney transplant nearly 10 years ago as the result of a different autoimmune disorder (IgA Nephropathy).  Things have been going great-- until this complication.  We had been told that prolonged use of Prednisone and Prograf could lead to diabetes.  For the last few weeks he has been really tired, had blurred vision, and just generally not feeling well.  His regular blood work came back with good news for the kidney but bad news for the pancreas.  After seeing his elevated fasting blood sugar, an A1c was ordered.  The result was a whopping 10.2-- officially the highest in the house- and not the news we wanted to hear!  However, knowing what we know about hypoglycemia, we should have seen this coming.  Today he became the 4th insulin user in our house and our diabetes arsenal has taken over another shelf.   Text messages about missing socks have become text messages about blood sugars and sliding scales.  After day one we both,  especially Troy,  have a renewed respect for what our kids have been handling for years.   If all goes well, his diabetes adventure will be short lived; for our kids, it's a ferris wheel ride they may never get off.

Despite the progress being made and the hope on the horizon, regardless of its type, diabetes is an ugly disease.  It's mean, it's painful, it's aggressive, it's unpredictable, it's deadly and it's time to kill the beast.

 Follow the link to learn more about the SDP and what you can do to help http://advocacy.jdrf.org/our-work/special-diabetes-program/   JDRF is currently sponsoring more than $568 million in scientific research in 17 countries including 50 clinical trials.  This link will tell you other ways you can be involved http://jdrf.org/get-involved/.  For my running friends, JDRF is a charity for this year's Fargo Marathon.  If you plan to run in any of the races, consider joining their team.

Still Learning

It has been a while since I have posted.  That doesn't mean I haven't been writing, just that I haven't been able to write a post worthy of publishing!  Sometimes, a girl just likes to vent! However, in recent weeks, I have been following the story of a little girl named Kycie.  This story has touched my heart in so many ways.

I once had a little sparkly blue-eyed girl with a puff of pale blonde hair much like Kycie.  That baby girl is now 19 and reached her 16 year "diaversary" just 5 days before Kycie's diagnosis.  She still has sparkly blue eyes and a giggle so infectious you can't help but laugh with her.  I thank God everyday that we had a doctor who thought to look beyond the typical ailments of a 4 year old and do an extra little blood test, "just to be sure."  When the tests came back, he gave us the news with quiet reassurance. He had already set up our appointments for our next step (thank goodness as I was numb) and we actually had nearly a full day to let the news sink in before we had to admit her to the hospital.  In essence, we got to prepare her for her journey- a luxury most T1D kids and families do not get.  Since then, I have had numerous people--friends and acquaintances--ask how we knew.  I have to confess, I didn't.  I was convinced Tylie had a bladder infection. I didn't see Taya's symptoms, Troy checked her because he had a weird feeling.  I definitely wouldn't have seen TJ's symptoms if his moodiness hadn't reminded me of  a high blood sugar tantrum.  There are days I still beat myself up over that- should we have seen the signs sooner?  Diabetes is sneaky.  I always respond to these people, if you wonder, have your doctor run the blood work "just to be sure."

As I read the daily posts from Kycie's family, I have a renewed sense of wonder.  The strength and faith this family has demonstrated is nothing short of amazing.  I distinctly remember the overwhelming helplessness when learning to care for all three of my T1's.  While I had more knowledge with each diagnosis, this did not make it less overwhelming.  However, none of our experiences were nearly as life changing as Kycie's diagnosis.  Read their Facebook posts, https://www.facebook.com/kissesforkycie.  Ironically, I typically read these posts in the middle of the night after I hear one girl or the other girl shuffling around to treat a low.  Even after I know they are fine again, I can't sleep.  Their posts are awe inspiring and humbling and even in my anger and sadness I feel hope. 

Today, I was at the doctor with Tylie.  While sitting there, I still see her as that little girl covered in band-aids, frustrated that her IV pole prevented her from entering the tree house on the pediatric floor.  We have reached a new phase in care that I am not that comfortable with.  I am no longer the primary pancreas- she has trained well, and the job is now hers.   However,  I pushed this appointment because she had chosen to go a different direction with her regime and I had concerns- old habits die hard.  I went into the meeting feeling nervous and afraid but left it feeling hopeful. While I'm not sure it would be the choice I made, she is forging her own way.  She is able to do so, because more opportunities exist to help her manage and control her blood sugars.  We will see at her next A1c if her gamble pays off, but I feel better about her plan and am again amazed by the resiliency and courage she displays.  As a control freak, it is hard to let go, but it seems it's her turn to teach me!  It also doesn't hurt that I have a friend at the doctor's office to give me the inside scoop! 

In 4 short weeks I will be in DC with a sea of other like-minded people for JDRF Government Days. We will be advocating for continued research and the ultimate goal of a cure.  This is my first time being invited to this event and I enter it now with even more resolve.  Sometimes, living with this disease as long as we have, I get lulled into complacency; trying to survive day to day.  New challenges my kids face and stories like Kycie's, wake me up again.  Our babies need our voices, even when we are no longer their primary pancreases.  

Know the Signs!

Being Aware

Today is World Diabetes Day.  Sixteen years ago, I did not even know there was more than one kind of diabetes.  It was a word I had only heard associated with my 100 year old great-grandma.  Then, life took a turn.

The first time I became really AWARE of  T1 Diabetes was on January 25, 2000 at roughly 9:36 am.  It is one of those moments, frozen in time that you would like to slowly rewind and then replay with a new ending.  At that moment, I was numb with questions and fear of the unknown.  Ironically, I had no idea then how much really was unknown- as evidenced by my question, "When will she outgrow it?"  Within 24 hours, my baby was on an IV and I had added words like beta cells, pancreas, insulin, ketones, carbohydrates, and autoimmune to my daily vocabulary.  We should have gotten college credit for the four days she was in the hospital and the amount of new information we were required to absorb!  After a period of time we settled into the added parenting role of pancreas, and our days took on a new normal.  This first time around, the biggest lesson I learned can be summed up by the quotation, "Be kind, everyone you meet is fighting a hard battle."  Diabetes is sneaky, mean,  and invisible to the naked eye.  Sadly, people say some really stupid things!

The second time I became really AWARE of  T1D, was about 18 months later.  It was July 26, 2001.  It was before noon when I got the message from Troy that he thought something was wrong with Taya.  I was in grad school, and I remember that I was driving back from class and telling him she had to be fine; the doctor had told us having a sibling with T1 only increased the other kids' chances by 4-7%- that translated to slim chance in my mind!   In one of the few incidents I had to concede that my husband was right, we took her for a blood draw and left with a glucose meter and another prescription for insulin.  I was even more numb than the first time around and Troy was furious.  This time, finding a new normal was even more difficult.  Troy had also recently been diagnosed with his own kidney ailment, was coaching two sports, and teaching.   I had just gone back to work full time and was finishing up grad school.   As if that wasn't enough, we had a 1 year old and two girls under the age of 6 who required daily insulin shots and frequent fingerpokes to check blood sugar.  I have said this before, God Bless my dear friend and daycare provider, Traci!   The lesson I learned from this second time around was that it really does take a village.  We have connected with some beautiful souls because of T1 in our lives and we have been blessed with a truly amazing support system.  This doesn't take away all the pain, but it makes the worst days bearable.

The third time I became really AWARE of T1D- as if I needed more reminders- was January 8, 2010 at 7:05 pm.   This was the moment I checked TJ's blood sugar and found it a whopping 536.  Diabetes definitely does not play fair!  If Tessa had not been home with me, I am not sure what I would have done.  With the wisdom of a soon to be 10 year old, she advised me that she would watch TJ a second because I needed to call grandma.  In her mind, grandma fixed everything.  I knew in my heart what was happening, but my head just would not accept it.   Tessa was right, I did need to call grandma.  I needed someone to tell me what to do, because how- HOW- could this be happening again?  Even as I type this,  I can feel the hysteria rising in my throat.  So I called Troy's mom. She said she would go to Taya's hockey game so she wouldn't be alone and that I needed to take TJ to the hospital and she would come up later to get Tessa.  Somewhere in the midst of this, my mood went from numb to really, really angry but two funny things happened that night:  1.) Taya got two penalties in her hockey game.  If you know Taya at all, you know that this is proof the stars were not in our favor that evening.  She HATES the penalty box - her dad can't even pay her with ice cream to get penalties! Her only other experience in the box was when he made her serve his bench minor.    2.) After hearing our family history, the admitting doctor asked me if I had married my cousin!   This still makes me giggle!   The lesson I took away from this go round was you have to find the humor because if you can't laugh, you will always be crying!

The fourth time I became really AWARE of T1D was early August, 2011.  We were driving to Minneapolis and I received a text from Taya's Godmother saying Addison was in the hospital and they were pretty sure it was T1D.  My heart broke.  T1D was now a 'normal' part of our lives, but I surely did not want this for my friend.  That was when I learned the lesson that we should not keep hiding the battle - we needed to live it out loud.  If we minimized it, no one would be aware and no one would fight for a cure or even care.  This is why I have been posting a fact a day about what it is really like to have T1D, this is why I advocate with JDRF, this is why we walk and raise money- because the more people that are AWARE, the greater chance we have for change and ultimately, for a cure!

Haley, Addison, and Taya at camp! 

Taya, TJ and Tylie advocating on the Hill! 

           These kids inspire me each and everyday!

Invisible Battles

I am writing this post feeling frustrated, sad, and more than a little angry.  I want to tell you a story of a little girl. This little girl was born struggling for her life. She spent days in the NICU, while doctors worked of clear an infection raging through her body. She hardly cried, even as she was poked in a new place each day for blood or new IV when her little veins wouldn't cooperate. As she got older, she kept that stoic persona but her big blue eyes didn't miss a thing. Her first words were "Me, too" because she wanted to be just like her sister. At age 4, she actually smiled when she skipped out of the hospital with her new diabetes kit- just like her sister. After the first day, the smiles only came between wrestling her to the ground to give shots between meals.  Oh, the tears she cried- everyday for 6 years. But, she battled through and the only people that saw those tears were us at home.  She played hockey, volleyball, and soccer. She went to school and hung out with friends. Very few people would say she wasn't like everyone else.  On her 10th birthday, she got an insulin pump, cutting the tears back by gallons but not the frustration and pain that comes with a life long disease. Now at age 17, she is still fighting that battle.  She continues to be active in school, recently elected president of DECA.  She plays hockey, works part time, and wants to tour colleges that will help her get into med school.   On the outside, she is your typical 17 year old girl.  On the inside, she cries.   My fear is that she is losing her battle.  In her effort to pretend she is just like everyone else, she isn't taking care of herself.  When she was little, I could do some of the work for her, take some of the burden.  But, now, so much is in her hands and I don't know how to help her find a balance that works for her, that doesn't make her feel like she isn't like everyone else.

In the last month, I have gotten a call from our diabetes educator regarding both girls.  She is worried. I am worried.  I wish it would go away.  I wish.  It is the simplest of sentences but yet so complex.  I was listening to a friend talk about the 3 C's of addiction that families must understand.  "I didn't CAUSE this."  "I can't CONTROL this." and "I can't CURE this."  In the middle of his story, I blurted out, "That sounds a lot like parenting children with diabetes."   That first C is a whole other blog post and that third C, I have written about before but that second C- that's the one I'm struggling with right now.  When they were young, control was what we fought for; good blood sugar control, that is.   Some battles we would win and many we would lose.  Changing dosages, times of delivery, more frequent checking of blood sugars, taking out this snack and adding in this one- all strategies to try and find that elusive control; the balance between sugar and insulin.  While we still strive for blood sugar control, as they get older the decisions they make are more theirs and less mine.  I can advise, punish, take a step back, nag, scream, and even cry to try and influence their daily decisions (and I have tried!) but they are not mine to make.  Again today, we sat with the educator searching for the answers.  We talked about progress in research, promising breakthroughs, and future appointments.  Unfortunately, none of those things are helping her right this minute and I lack the words to make this all better.  It is not an owie that a kiss or a funky band-aid will fix.  I tell her we are not angry at her, that we want her to be successful, that we are proud of her, that we understand this sucks.  I don't know what she hears.  I know she is angry at the cards she was dealt.  I know she is sad when she feels she is disappointing us. I know she wants to never see a glucose monitor again. I know just being a teenager and the trials that alone brings increases her burden.  In my mind, she is still that baby girl fighting for her life.  I want her to keep fighting.  I don't want her to let this disease win; it doesn't deserve to win.  How do I help her find a way to conquer what must feel like an unconquerable demon?  I wish I could slay it for her.

Significance

From the very beginning, I can remember being told "Always remember, it's just a number, it's not good or bad."  Of course, they were referring to the number on the glucose meter- the number that tells us whether the blood sugar is too high, too low, or that magic, Goldilocks 'just right' number. In truth, the number itself has little meaning at all, it is what it symbolizes.  Let me preface this little essay be telling you what is normal for a non-diabetic person.  If you were to check your blood sugar when you woke up- a fasting blood sugar- it should be between 70-90 mg/dL.   A blood sugar reading two hours after eating should be less than 140 mg/dL.  The girls have a target blood sugar of 100 mg/dL.  TJ's is a little higher at 125 mg/dL.   If we had a day when all 3 kids blood sugars ranged from 100-140, I would consider that a Goldilocks day.  (By the way, it has never happened; being a pancreas is ridiculously demanding. I wouldn't recommend the job to anyone.)  On any given day a reading of 250 is considered high.  A number like that would make me shake my head and frown and start the guessing game: Is it sickness? Bad site?  Insulin gone bad?  Dehydration? Full moon? Wind from the wrong direction?   However, a reading of 250 after 3 readings over 500 brings a sigh of relief- we are headed in the right direction.  This morning TJ did a little happy dance because his wake up blood sugar was 111.  He had spent the day in the 200's yesterday- it's a big deal.

Numbers are significant not just in relation to blood sugars but in other ways as well.  For example, last year, Tessa turned 13.  The 13th birthday is a big deal in a happy way.  The 13th Diaversary, that Taya hit last week has a totally different significance.  Is it happy?  Well, sure, she has LIVED with diabetes for 13 years.  Is it sad?  Well, sure, she has lived with DIABETES for 13 years.   I think a fitting descriptive term might be bittersweet.  In January, Tylie will reach her "Sweet Sixteen" Diaversary.  Are you catching the irony in these last two statements or is that just poor D-mom humor?  

Back to the numbers- according to the Center for Disease Control, the prevalence of T1 D in Americans under age 20 rose 23% between 2001-2009.  Current estimates are that 80 people per day are diagnosed with Type 1 diabetes.  The rate of Type 1 diabetes in children under age 14 is expected to rise by 3% annually worldwide.  Now, those numbers are disturbing- not good or bad- just flat out alarming.  I do feel the need to differentiate here.  I am speaking solely about Type 1 diabetes. Simply speaking, in Type 1 diabetes, the bodies immune system destroys the beta cells that produce insulin.  It used to be called Juvenile-Onset Diabetes or insulin dependent diabetes.  At this time, it cannot be prevented or delayed.  There is no cure but there is insulin and different management options available for treatment.  I will be honest, Tylie's doctor at diagnosis stated to us that she had Juvenile Diabetes.  I clearly remember saying to him, "Well, if it's Juvenile, at what age will she outgrow it?"  Yes, I have learned a lot in 15.5 years!  Type 2 on the other hand, can be prevented or delayed by lifestyle choices. While Type 2 is rising at an equally alarming rate and I don't mean to minimize it- please, do not confuse the two types- again the number may not be good or bad, but it is significant!  Well-meaning individuals telling a tiny, energetic 38 pound 4 year old that she shouldn't have eaten so many fruit snacks or asking her if she watched too much tv instead of playing outside is a bit devastating.  (True story.)

Numbers- in our house, we make them a game.  If two kids happen to be testing at the same time, they guess who will be closest to target.  If they happen to have the same number, we laugh.  If it says 123, we laugh.  We laugh, because you can't cry everyday.  These are numbers that the average person has no idea about.  Those lucky enough to have a perky pancreas that does the thinking for them have no idea of the rise and fall in blood glucose daily.  Sadly, we know almost hourly and even though we make it a game, many days it feels like there are no winners.

I am reading a book right now called, Daring Greatly , by Brene Brown.  I started reading it as a teacher but there has been a lot of take away for me as a mother.  In the book, she states that we have to recognize that "we are enough."  That is a hard one for me because I like things to be perfect and neat. I like to know the answers in advance.  Yeah, uh huh, I know, I am a parent and more, the parent of three T1D kids- life is not neatly wrapped and I cannot do or predict it all. (Wow- I just said that!) Another significant point in the book is in regard to taking risks.  I see these two going hand in hand  because in my effort to make life be neat and tidy,  I have not always let people really understand the impact of T1D on our lives.  People looking in often say we make it look so easy.  I think I am doing a disservice to my children and all those other families living with T1 by letting people believe that.  It's hard, hard 24 hour, 7 days a week, 365 days a year work! The risk I have decided to take on this year is educating and advocating.  If people don't want to hear about it, they don't have read my social media posts or my blog.  For me to accept that I am enough, I need to feel I am doing enough.  I might write a thousand posts and people may read only one thing that they can take away.  That number is neither good, nor bad- it is significant.

Throwing it Back and Moving it Forward

JDRFCC 2013

Last year at this time we were just getting home from our life changing experience in Washington DC.  I have included a Throwback Thursday pic collage.  Looking at it now, it seems like just yesterday however, much has been accomplished since then.  The SDP was renewed  http://advocacy.jdrf.org/our-work/special-diabetes-program/,  TJ and I  have visited with Heidi Heitkamp again and we are working to have a stronger JDRF presence in North Dakota. Articles about the progress on the artificial pancreas are everywhere http://www.nytimes.com/2014/06/16/us/artificial-pancreas-shows-promise-in-diabetes-test.html?_r=0, a new inhaled insulin is available http://www.usatoday.com/story/news/nation/2014/06/28/fda-inhaled-insulin-diabetes-afrezza/11612739/ and the list goes on.  Much of this amazing progress can be attributed to JDRF and their commitment to finding a cure.   http://jdrf.org/blog/2014/jdrf-ranked-as-top-non-governmental-diabetes-research-funder/.

I have been terrible at blogging.  I would like to spend my days telling you all about life with T1 D.  However, first that could get downright depressing and second, we are busy living our days.  Some days are good and some days, not so much.  I would be dishonest if I didn't tell you I roll my eyes sometimes when people go on and on about their child's sniffle.  I know this isn't fair of me as each family has their own reality and what has become normal for us would constitute Hurricane Katrina for someone else.  I know this, because that was once us.  I found myself alone one afternoon when two of the kids were at D camp and the other two were not at home.  I did not know what to do with myself.  I literally felt as if I were crawling out of my skin.  At that moment, it occurred to me that I am so used to living with that element of chaos always in the shadow ready to leap out and attack in the form of a low blood sugar, keytones, lost site,or some other T1 annoyance that when the threat was removed, I was lost.  This discovery made me want to jump for joy and sob with sadness at the same time.  Joy- here I was for a few hours- FREE!  No insulin to inject, no carbs to count, no fingers to poke. On the flip side- sadness because this is not something my kids can  be free of- this disease is "managed" not "cured".  Just because I wasn't watching over them the insulin, fingerpokes, and carbs were still part of their every moment.  In turn, I felt humbled thinking of these kids at camp.  The strength in those little wooden cabins could move mountains.

Three of my inspirations!

With the memory of last year's energy and the hope of keeping these three pretty ladies and their comrades smiling, I signed our family up for the first  North Dakota JDRF Walk to Cure Diabetes.  If you would like to help out or join our team, here is the link:  http://www2.jdrf.org/goto/t1-cubed   In addition,  spent some time on the phone with a lovely lady named Camille, who I met briefly in Washington last year. Her passion inspires me.  I am excited and honored to work with her, Barb, and Brekka (the moms of the beauties on the left and center of the photo) to bring awareness and opportunity to North Dakota.

Stolen Nights

Diabetes sucks much of the the time but it particularly sucks in the middle of the night. Last night alone, it interrupted my sleep 3 times. Once for a high, once for a low (different kid), and the third time to do a set change because the high wouldn't come down.  Oh, how I long to sleep through a night.  However, even when diabetes doesn't officially wake me up, I still don't sleep.  Somewhere around 3 am, I always seem to wake up feeling unsettled.  I toss and turn to no avail and finally, get up and take a trip through the house.  Once I am assured all babies are breathing and appear to be in a solid state of slumber, I attempt to return to my own sleep.  Sometimes it works, sometimes it doesn't.  I have a hard time shutting my brain off.  The 'I wishes' and the 'what ifs' and the "to do' lists keep knocking around and growing and tangling like the branches of dogwood trees.  Some thoughts are related to work, some are related to normal family things like money and time and why I can't keep the house clean for 5 minutes but usually, it's diabetes.

Diabetes consumes our time.  Just this morning, I received a call from a crying child attempting to get her blood draw at the lab.  They are changing the computer system at the hospital and they were missing information and orders.  She spent over an hour there, only to leave having nothing done.  I called to confirm if she even had an appointment.  She does.  So before noon, diabetes has taken up over 2 hours of her time and that doesn't include the minutes it took her to check her blood sugar and bolus for her carbs.  I am angry that those 120 minutes could not be used for normal 16 year old worries- like where she will meet her friends for lunch and what to study for the chemistry final.   Factor in the amount of time we have spent on the phone scheduling appointments, in the waiting room waiting for appointments, in line at the pharmacy and well, that's a lot of time!

Diabetes consumes our space.  Test strips litter the floors, in cars, in cupboards, in purses and bags.  This morning I found a canula for a pump in my computer bag.  Literally half of my bathroom linen closet is full of D supplies as well as a kitchen cabinet.  I may be a bit of a hoarder, but well, diabetes is unpredictable. Diabetes also fills one entire drawer in TJ's dresser- yep, D t-shirts from camps and walks are outnumbered only by shirts representing his favorite hockey players.

Diabetes consumes our emotions.  There is not a minute that goes by when it doesn't cross my mind, when it doesn't effect my child's day to day life.  The amount of time I spend thinking about it can't even compare to theirs- living with it each day.  Two of them always attached to something- the only break when they take a shower.  The other gives herself shots from 5-10 times a day.  I don't think anyone could understand the frustration of a child who has just done a set change- essentially given themselves a shot- only to have it fall out a minute later and have to do it all over again.  Or disappointment of  a blood sugar so low, he can't play the game.  Or the pain of a blood sugar so high she can't stop crying and her head is pounding and no amount of insulin and fluids seems to want to make it better.

But, then there is that moment in the middle of the night  that I say a bit of thanks.  Last week, someone's precious baby did not wake up.  Her blood sugar went so low in her sleep, she could not recover.  This morning instead of cursing the mess of cereal and empty juice boxes on the counter, I said a silent thank you for waking her up.  I have 4 incredibly amazing children, 3 of whom live each day with a challenge no one else can see.  Everyday, that challenge worries me, angers me, frustrates me, and every night it steals my sleep. They did not ask for it, they did not earn it, and they cannot give it away.  But, the key word is that they LIVE -with courage, compassion, and optimism.  People ask me how "I" do it.  In truth, I don't!  They do and because they do, I will not stop fighting for a cure, for awareness, for education.  I am an advocate for JDRF because they fight for my children so that someday, we may all sleep peacefully through the night.

Being 9

I love age 9!  Seriously, I watch TJ and am absolutely amazed by him.  He has the world by the balls, as my husband would like to say.  I like to compare him to a Weeble Wabble.  Remember those toys, "Weebles Wabble but they don't fall down"?  He would have every reason to fall down, but he takes life's punches and throws some of his own.  Last month, we were at a hockey tournament.  He was playing knee hockey with his buddies and came back to the room stating he didn't feel well.  His blood sugar:  29!  Yep!  We looked at each other and said, "WOW!"  He said, "I just feel 'normal' low.  That's really low."  Thirty minutes later, he was back in an acceptable range and an hour later he was playing a real hockey game.  He scored 2 goals and had 2 assists.  We were not overly shocked when his blood sugar was 425 after the game, but think about that!   I get cranky when my blood sugar gets "low" -probably 80ish (remember, average is roughly 100). His makes a 400 point swing in 3 hours and does it slow him down?  Heck, no, he wants to go swimming!  I honestly don't know if it is his age or his temperament or a mixture of both, but whatever it is I wish I could bottle it.  He does not fear failure and charges into every task he undertakes.  He is currently working on a report on Cory Conacher- a pro hockey player who also has T1.  He firmly believes that he will be playing in the NHL someday.   I have been trying to remember if the girls were this positive at this age.  I know for sure, that one was not.  I can clearly remember chasing her around with a syringe trying to give her a shot while she cried, begging me not to do it.  These are not moments I like to recall.  We were not able to get her a pump until she was 10- on her birthday. That was 6 long years of tears.  The pump was a life changer, in that respect.   Does the technological advance of the pump, give him a leg up?  Maybe, he only had to do shots for a year.   However, the other daughter has given up her pump because she hates being "attached" 24/7.  A person who doesn't know my kids would look at all of them and not see anything wrong.  However, there are days when I have one very angry girl at home.  There are other days, when the other is clearly annoyed.  TJ- well, he hates having to come in from playing his imaginary baseball game because his reservoir is low.  He will stomp and groan and express annoyance when a site falls out.  But, as soon as its changed, he is off and doesn't look back.  He calls me everyday at lunch for help with his carb count.  He hasn't complained once about being the last kid to recess.  He does, however, complain about the school's gluten free chicken nuggets but that is another story!  Don't get me wrong, there are many days we both want to drop kick diabetes in the ass!  But, I can tell you he gets over it long before I do.  I really, really, really want a cure for this disease but until then- I really, really, really want this boy to maintain this self-confidence, this zest for life.  As I type, he is shooting hockey pucks in his room, cheering on his every goal.  Earlier this evening, he played an entire baseball game against himself...of course, he won.  

It's Been Awhile

It has been a very long time since I have blogged!  Moving, hockey, school, and "normal" people winter illnesses and cold weather have kept us pretty busy.  In fact, I think I had posted on a Facebook page I belong to that we had had a surprisingly "good run" with regards to T1 in our house.  I have learned this is something you should never take for granted.

Two weeks ago, Taya "lost' her pump!  This triggered many levels of annoyance for me.  1.) "How in hell do you lose something attached to you?!?"  2.) "What were you doing that required it to be unattached at a school function??"  and finally, 3.) Damn, that thing anyway- why can't your pancreas just do its job and save us all the drama???"  Two days later, TJ had an unexplained high blood sugar day.  No rhyme or reason, just high blood sugar and keytones for 24 hours.  Then, two sleepless nights later, he got back to normal just as quickly as the highs began.  Later that same day, I received a group email about a new diagnosis in Texas.  Today, I learned of one of my 6th grade students hospitalization over the weekend.  This makes me just as sad and mad as it did when I heard the diagnosis for my own children.  It all goes back to question number 3 above:  "Why can't your pancreas work and just save us all the drama?"

The answer to this question really is our ultimate goal.  We need a cure!   To that end, there is much we can be doing.  First, right now there is a big push to write to your legislators to urge them to continue to support the SDP.  The link to send a letter is attached below.  In relation to this, there will be over 150  JDRF advocates in Washington DC this week meeting personally with members of Congress to share their stories and give a face to this disease.  Second, participate in studies and surveys that give researchers the information they need to continue their work.  While these are not always as readily available in rural areas, there are many studies taking place.  Talk to your educators, look online, be an active voice and read up on what is going on in the world of science.  Finally, there is strength in numbers.  Reach out to those that are newly diagnosed, educate people who are unaware that there is, indeed, a difference between T1 and T2, participate in a local support group, walk, ride or run for a cure!  On that note- there is a Splash and Dash coming up on May 18 in the Bismarck-Mandan area!  Proceeds go to Diabetes Awareness and to help send local children to Camp Sioux.  More information is available on the Mandan Dakotah Lions Facebook page or message me.

The catch phrase running around right now is "From Type 1 to Type None!"   Tylie said to me the other day that she doesn't think she will ever be 'cured'.  She basically does not believe that she will ever not need insulin from some artificial source, be it pump, injection, or some sort of implantation.  She can remember mixing two different insulins into a cocktail and the stress of eating on a tight schedule that revolved around the peaks of insulin.  She knows technology has come a long way and believes it will continue to make her life easier.  However, she is equally optimistic that with research, there will be a day when no child will ever have to be in her position, that a cure will be found that will keep that dang pancreas functioning like it should.

Taya did find her pump.  It was in her friend's car.  She had taken it off because her blood sugar was dropping rapidly and instead of suspending, she removed it.  In the mean time, we discovered TJ's pump was malfunctioning and he has since received a replacement.  I have also had the opportunity to meet two new T1 moms and already count them as friends.  So, while there currently are no days without diabetes for us, we do try and count the good ones and find the blessings that come in disguise. Please, write to your congressmen and women!

https://secure3.convio.net/jdrf3/site/Advocacy;jsessionid=3E02CBA99BF113CC198A372C01DECB63.app334a?pagename=homepage&page=UserAction&id=396&autologin=true&AddInterest=1122

Reflections and Connections: Standards Based Grading and A1c's

This week, I had the opportunity to attend the AMLE conference- a conference for middle level educators. The theme of the conference was THRIVE.  Those that know me, know that sometimes my self-diagnosed ADHD kicks in and my mind is like the book, If You Give a Mouse a Cookie.  Eventually, like the mouse, I do end up back on track but in the mean time, I sometimes manage to have a few good insights and make some obscure connections.   This is an example of one of those times!

Standards Based Grading (SBG) can be defined as measuring student achievement based on well defined course objectives.  As Rick Wormeli states,  "It is about measuring what the student knows, not the route it took to get there."  With SBG,  teachers and students need to be constantly examining what we know and where we need to go in our course.  We need to make goals to reach our target and then change those goals based on the evidence, not the extra credit.  Our evidence is the students' work.  It is what they produce daily.  As simple as a quick question, "Why did you chose to do this?" to more complex projects involving application of skills,  we are measuring the distance to the goal.  We call this "formative assessment."  We use this information to drive our decision making.   I have heard many times over the course of this last year and the course of this conference that the "targets should be visible."  Never have I heard that the target should be easy to reach.

At this point, you are wondering why on Earth she is writing about school in a diabetes blog.  Just like the mouse asking for a straw for his milk, bear with me as this will connect.  The A1c measures the average blood sugar over a period of time.  It is the target for control.  We always see that target, but it is not always easy to reach.   Like grades in school, we look at the numbers, we look at our practices and we set goals and make changes to achieve mastery.  I watch my children poke their fingers up to 10 times a day to measure their blood sugars; formative assessment.  This information drives our decision making.

In both SBG and diabetes management, we can't just roll the dice and hope for the best.  That would not be fair to anyone involved.  Instead, we take what we know, based on evidence, and we make informed decisions.  In both cases, we should never lower our target or our expectations.   I live with three children and who fight a battle for their lives daily.  If I told one of them that she didn't have to check her blood sugar today because she worked so hard at it yesterday or because her room was clean, I would be doing her a tremendous disservice.  Lowering her  target to this level would be the equivalent of saying, "Today, your life is less important."  We do, however, very often need to change our route, add some steps, or sometimes even turn around and start all over.  Along the way we meet frustration, we meet success, we get bumps and we get bruises.  Shouldn't it be the same with education?  To me, allowing a box of tissue or a parent signature to count as "extra credit"  is the equivalent of saying, "Today, your life, your education, has less value."  In either case, settling for a "C" is not an option.  I want mastery or better!

SBG is best practice, it's what's good for the kids.  From experience, I can tell you that I was more than a little nervous about this school year; new job, new grading system, new team.  Now, one quarter complete, I can't believe how fast it has gone, how much I have learned and how valuable SBG is to the educational system. It makes school "real" and evidence based.  Yes, there are glitches in the technology.  True, not everyday is easy nor is every person happy.  Absolutely, I have to work hard and make some changes to lesson plans I have used in the past.  Is it worth it?  Without a doubt.  Student-led conferences turned into a formative assessment for me this year.  Listening to my students talk about their learning allowed me another opportunity to reflect on my teaching.   I realized that many times in the past, I had settled for something because I was using an arbitrary measuring tool and never asking the tough questions.  I was cheating my students.  The same can be said for diabetes management.  I will admit there are days that I don't want to ask the tough questions of my kids.  There are days that I want to give them a "day off" because I, like them, just don't want to do battle anymore .  But is that fair?  Rick Wormeli says over and over, "Fair isn't always equal."  Fair isn't always easy, either.   Helen Keller states, "We couldn't be brave or patient if there were only joys in the world."  I would assert that without challenges, we could never THRIVE.  Do you see that?   Like the mouse, we have come full circle, right back to that cookie!  Conferences like AMLE and JDRFCC, are opportunities to connect with like minded people: they demonstrate the power of people committed to progress and positive change.  That reminds me of a team...

Changes and Chances

 

The sign behind the kids' pumpkin alter egos gave me a bit of a laugh the other morning.  A picture is worth a thousand words, right!

      This fall has brought a great deal of change to our house.  I began a new job, Tylie began college, Tessa got braces, Troy had knee surgery, and we began house hunting just to name a few.  Our busy life just seems to get busier.  Sadly, in the midst of all of this transition, diabetes seems to be the one thing that never goes away and never gets easier.  We struggle to find the time to really manage it.  By that I mean uploading pumps more frequently, analyzing the data, questioning the crazy numbers. It is very comparable to grading papers.  I keep up with the grading (fingerpokes) but fall behind entering the grades in Powerschool (uploading).  I know in both cases, I need to take both steps to get the full picture and make better decisions but before I know it, another day has gone by and we are one day closer to the end of a quarter (A1c test) and I wish I would have done more!  Three kids and three A1c tests completed this month: Two were better, one was not.  I can't think of much worse then sitting through those appointments when the tears fall and we curse the broken pancreas all the way home.
    Today, Tylie went to her first appointment all by herself.  It took three tries to get there as the first time she forgot and the second time she had the time wrong but finally, she made it.  For a year or so now, she has been talking about taking a "vacation" from the pump.  So, today she brought the subject up and decided to take the plunge. (Ha- syringe humor!)  After three years off, the idea of shots is a bit daunting to me.  However, I am not the one constantly "plugged" in, either.  While she has been pretty independent for the last couple of years, I considered the ability to upload as my ace in the hole for keeping her accountable.  The fact that I can't readily see those numbers is more than a little frightening.  It is hard enough for me to shift my thinking as she enters this world of adulthood without throwing in diabetes.  I am proud of her for taking ownership and I hope she is able to find a method that works for her on a daily basis.  It is so ironic that when we first began pumping I had these exact same feelings.  That is the thing about this disease- the only thing you can be 100% sure of is that the pancreas won't be repaired by morning.  That is why we work so hard for a cure- A CURE- not just treatment.
     On that note, November is coming up and there are some things you can do to be more aware and to help find a cure.  This link will allow you to sign up for one days worth of texts designed to give you an idea of what it is like to live with T1D on a daily basis. http://jdrf.org/blog/2013/take-the-t1d-for-a-day-text-challenge/    You can also sign up to be an advocate:  http://advocacy.jdrf.org/get-involved/.  This is particularly helpful as we are working to make JDRF a more active force in North Dakota.  The work that has been done towards a cure is tremendous but there is still much to be done.