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. 

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.

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!

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.

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

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.
 



 

We did it!

Well, we did it- we got one of our offspring to adulthood! Whew- it's a lot harder then they make it out to be when you read the "What to Expect" books when you are 8 months pregnant.  I notice they quit writing those after "The Toddler Years."  Is that because it is basically a dice roll every single day?

For example, I remember at age 18 months, the first time Tylie got really sick and projectile vomited EVERYWHERE.  I could do nothing but surround us in towels and hope the volcano would stop.  I clearly remember thinking to myself while holding back the gags, "They do NOT tell you about this stuff in the books!"  Then there was the time she fell off the couch and into the coffee table.  No skin was broken but the swelling on her forehead looked like a Unicorn's horn!  As luck would have it, that same day she had some sort of allergic reaction to a bug or a plant and her right I swelled shut!  I took her into the clinic because I thought her brain was swelling from the fall!  Thank God for Benadryl!  Back then we could give that to a kid under age 4.  Thinking about this now, it is shocking that we chose to have three more of these little creatures!

Speaking of age 4...that was the year of the big D diagnosis.  When I held that newborn tiny baby swaddled in my arms I never imagined that a short 4.5 years later I would be watching as the nurses swaddled her again and struggled to get in an IV.  I can still see the procedure room.  It was blue, with fish decorating the walls and ceiling.  Relaxing, right?  It was designed to keep a child's mind off the procedure about to happen.  A side effect is that I hate fish...and aquariums...and IV's.  That room is the turning point; the moment "pancreas" was added to our list of parental roles.

Life moved on and we made it through the typical experiences- friendship troubles, middle school, driver's license,  high school, hormonal fluctuations, Algebra II, sibling rivalry (close calls there!), and fender benders. We have survived- or I should say SHE has- moments when I could have strung her up by her toes.  For example, she gives me parenting tips, directions on how to drive to the eye doctor's office, and questions my every movement while blatantly ignoring my suggestion to follow up on her college application.  Really? However, I am able to overlook some of that when she helps me make good choices by picking me up from the Ground Round after I have had a beer or two. Better safe than sorry, right?  We  have made it through a few more hospitalizations, an allergic reaction to Vancomyocin, and blood sugars so low I can't believe she was talking! I don't think I can say we have a full fledged grown up yet, but I think she is on the right path. Last night, she text for permission to sleep at a friends.  I told her she didn't need my permission anymore, but I appreciated knowing where she was in case I ever needed to send the cops looking for her. (I stole that line from my friend, Traci!)

As I write this, she is 18 years and 1 day old.  Thirteen and a half years ago, this point seemed so far in the future and faced with a new world of insulin, blood sugars, needles and keytones, I could literally not imagine what this day would look like. Ten years ago, we thought our life had become so much easier because there was a new long acting insulin called Lantus and we could use insulin pens instead of drawing up a shot cocktail.  Six years ago we introduced the freedom of the insulin pump to our lives.   Two and half weeks ago, we were at Capitol Hill, speaking to members of Congress and today, she is writing her own letter in support of the SDP.  Her next milestone birthday is age 21.  Maybe she will be given a cure for that one! Until then, we have 3 more kids to grow and many more battles to fight.  But, we will take a minute to pat ourselves on the back for how far we have come!

If you haven't yet...


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Reflections on JDRFcc13

Sitting here, writing, while TJ is at baseball practice seems a somewhat surreal.  "Normal" life has resumed and we have been home less than 24 hours.  Yesterday at this time, we hadn't even boarded our airplane after our amazing experience on Capital Hill.  I am going to touch on the highlights but I don't think anything I say will do the experience justice.

The City:

It was an experience in itself watching the kids take in history.  TJ was in awe of the sheer size of the monuments. Tylie was amazed by everything around her.  She literally walked at snail's pace so as not to miss a single thing.  Taya just soaked up the atmosphere.  One of the most compelling things we did was to see the Changing of the Guard at Arlington.  Perhaps it was more meaningful because without the sacrifice of those who came before us, we would not have had the opportunity to come to Washington and plead our case.

The kids by the Reflecting Pool on the mall, wishing for a cure!

The Conference:

I am not sure it can be called a conference, exactly, but that is how I think of the first two days at the motel.  I have already highlighted day one in my previous post but from there, we really got busy!  The organizers of the event, Hasan Shah and his staff, Camille Nash and Angie Platt, as co-chairs and the numerous volunteers have to be commended.  Our family felt prepared upon arrival and any questions that came up were easily answered.  The Town Hall meeting was inspiring.  Afterward, Tylie said her new goal was to be a part of that panel someday.  TJ couldn't get over all the athletes- racecar driver, Charlie Kimball, Gary Hall, Jr., baseball announcer, Brian Kenny, and Ray Allen in the audience.  He has always thought nothing could stop him and their stories only proved his point!  More than once during the course of that meeting did I feel my eyes tear up.  On Monday, the kids had been interviewed and Tylie had responded to a question saying, "I have Diabetes like I have blue eyes and blonde hair.  It isn't who I am."  Both Troy and I felt ridiculously proud in town hall meeting when Mary Mouser stated virtually the same thing!  These T1 kids grow up fast and they grow up smart!  The Blitz meetings were a bit overwhelming for the kids.  Tylie vigorously took notes afraid she would forget to say something important.   Troy noticed that they were very similar to the role play situations they do as part of DECA competitions.  Tylie and Taya have both participated in these events and it helped them to be prepared for the meetings on the Hill the next day.  TJ, especially, appreciated the social hour as he had more time to mingle with his new friends.  He came home with a lanyard full of pins and stories to tell about each one.

TJ and Charlie Kimball

The Blitz:
The big day was on Wednesday.  We loaded the bus before 8 am and hit Capitol Hill.  We really had no idea what to expect at these meetings and each one was quite a bit different from the other.  All were positive.  Two of our meetings were delayed as Senators were both held up testifying at hearings.  We watched them on the monitors in their offices.  In addition to attending a hearing ourselves, the kids got a first hand look at the day to day workings of our elected officials.  They are very busy people!  It made us appreciate even more the time they were able to give us to tell our stories.  The hearing itself was a little emotional for me.  I don't know if I was overly tired or just overwhelmed by the sheer number of people there hearing the testimony, but several times I got very teary eyed.  Listening to Jean Smart talk about her doctor recommending abortion, Ray Allen so clearly describe the parenting perspective, listening to Jeffrey Brewer and Dr. Rogers speak about where we are in the research- we have come so far, but yet there is far to go.  Senator Heitkamp said it best when she stated in our meeting that much time has been spent on cancer and heart disease.  She said, "That isn't a bad thing but more needs to be done for Diabetes.  I believe we will have a cure."  She happened to be our last meeting and we couldn't have asked for a more positive finish to an incredible day.  An unexpected special moment occurred during the group photo when VP Biden gave TJ is small American Flag pin and Tylie got a hug.  He also told her he didn't think girls should marry until they are 30!  How cool is that?  We left Capitol Hill feeling invigorated and empowered.  Tylie even commented that maybe working in government would be an "ok job."  We couldn't be more proud of all three of them. They have grown beyond measure by this experience.

Ready to go meet some lawmakers!

The Work:
Oh, but there is still much to do!  I told Camille before I left that we wanted- needed- to do more to get the word out in North Dakota.  Troy stated how good the experience was for our family.  All three kids said they would do it again in a heartbeat.   They are lobbying to go to the Friends for Life conference next year to continue making connections and to keep spreading the word.  They are speaking to our local parent group in August about their experience and already talking about meeting with our senators and representative again soon.  I have no doubt they will lead Promise meetings with a flourish! I am working on a meeting with TJ's principal to talk about a JDRF School Walk this fall.  He can't wait for our annual talk with his class, as this year he will have so much to show them. He has already re-named his little stuffed pancreas that he uses as a prop, "Arty", short for artificial pancreas, of course!   Right now, I am so pumped up I want to quit my job and advocate 24/7, but sadly, we have a house payment...and medical bills!  But, we will make the time because we have felt the power of our voices.  Since we have been home today, I have already received a text message.  A friend of a friend has a newly diagnosed child and wondered if she could call me.  It seems I get those messages more frequently, lately at least once a month and sometimes twice, and I'd really like for them to stop.  I'd like to not pick my son up from baseball to find his blood sugar 425 because somehow his tubing literally got tied in a knot, starving his cells of insulin.  I'd like to not have that extra layer of mother/daughter animosity simply because I cannot stop myself from asking if blood sugar has been checked .  Of course, that is only the start of a list based on what happened in the 5 hour we have been home.  D does not give us a break.   When I tucked TJ in to bed tonight, after changing his site and restarting the flow of insulin, I thought how nice it would be to go to bed without fear.  As he held tight to his JDRF CC Build-A-Bear with VP Biden's American Flag pin proudly affixed to its tiny t-shirt, I again resolved to make the time to continue what we have started this week. Now that we have seen what we can do, advocating is no longer a choice- it is a responsibility!

JDRFCC13: Advocates and Friends- They ROCK- every last one of them!!!

We Have Arrived

It has been a long day but we have arrived!  Our day began at 4:30 AM with a flat tire on the van. Good thing we were flying!  https://vine.co/v/h7BHTr59APU

We have ridden on 2 planes, eaten in 3 states, ridden a train and a taxi, toured sites, walked a thousand miles and now have a boy in meltdown mode!  Hoping a good night sleep brings him back around!  

The trip has a different feel than our usual destinations. TJ is rather disappointed there are no hockey or baseball games involved and the girls just want to experience everything all at once.  It has been interesting to see other families arrive and to note the far reaching pact of diabetes in the country. In fact, we ate at a restaurant in Georgetown called The Tacklebox. The server asked why we were here and after Troy told him, he said his mom had diabetes and have us our drinks on the house. Being here, the epicenter of our democratic government, gives a different perspective on how lucky we are to live in a country where we can have this chance to have a say in our lives. 

Road to Washington, DC

In less than 48 hours, we will be in Washington, DC.  Well, 5 of us will.  Tessa will be in Nebraska.  She is going to spend the week with her aunt and family.  While running errands and organizing everyone, it occurred to me that,  for Tessa, this trip will be the first time in her lifetime she will be totally away from Diabetes.  She doesn't have diabetes but she lives it.  It makes me sad that I don't get to share the "freedom" with her but I am so excited for her.  A full week without hearing, "Are you high?" or getting to eat at a restaurant without worrying about carb counts and the presence of gluten!  However, it also brings to light the importance of what we are doing in Washington.

Here is a link to the brochure for the Special Diabetes Program.  http://advocacy.jdrf.org/wp-content/uploads/2013/03/5-SDP-Brochure-final1.pdf   When the kids meet with our state's members of Congress, we will be speaking to them about how T1 Diabetes impacts their lives every day.  They will request funding to continue for the SDP because it has made a difference.  Type 1 Diabetes is increasing at a rate of 3% annually.  It isn't something that can be ignored.  But, neither is the progress that has been made in  the areas of science and technology.  How cool would it be if ALL of my kids could take a vacation from Diabetes?  If other children could never get Diabetes?  If there was a cure instead of just a treatment?  And, that is the premise for the work that lays ahead of us next week. Stay tuned for updates through the week, or if we get too crazy busy, you might just have to settle for the summary.

To give you an idea of what traveling with T1D is like, I have included a picture of the kids' extra supplies.  This is just extra food, strips for meters, extra meters, syringes, insulin, set changes, glucagon, insulin, batteries, glucose tabs, etc..times 3!   It doesn't include the stuff they keep with them.  To prepare, today I went to the pharmacy, Target, the grocery store and the gluten free store.   In contrast, Tessa's pile includes a suitcase and an extra pair of shoes.  Not to minimize the travel preparations of any family, because I know it is a lot of work taking kids places, but the only thing I needed to buy Tessa was some new elastic bands for her hair!  

Which brings me back to the question:  How cool would it be if there were a cure?  I posted on FB to the group of Bismarck/Mandan families with T1D.  I told them that we are taking them all with us in our hearts because they won't fit in our suitcase.  I hope they realize how true this is- because this isn't our battle alone!  On a side note I am sure these mommies will appreciate,  I was so wrapped up in the writing of this post, I just set the fire alarm off boiling water!  A vivid example of how Diabetes can interfere with the most mundane activities, even indirectly!

Ordinary Extraodinary

My friend, Jenni, talked me into going to a two day class this week.  She didn't have to twist my arm too hard as it was a class about writing.  The timing was good and I thought it would be just what I needed to re-frame my teaching mind from special education to regular education.  The first day, we walk in to find the table scattered with objects: tape measures, matches, hair ties, band-aids.  Really, just ordinary things.  The prompt was to choose one of those items and write about it for 20 minutes or so.  I picked the band-aid.  Honestly, going in, I had no idea what would be the final product of this little writing experiment.  I figured I would come up with something funny as I would have to share it with these people and I didn't even know them.  My innate sarcasm usually helps me out in these situations.  It certainly wasn't the time to go deep. But, as I put that blue pen to paper, it seemed out of my control,  this story that emerged.

We called her the Band-aid Queen.  She lay reclined on her hospital bed throne wearing a crown of blonde curls and a smile, despite the tubes attached to her tiny arms.  Next to her, the ever present IV pole stood like a sentry standing guard.  Every two hours, came a person in brown scrubs pushing an ominous looking cart full of stuff.  The little girl sat, brave and stoic, while the person poked her finger and milked a drop of blood.  The drop registered on a machine to tell us if her blood sugar was high or low so we could determine our next course of action.  The little girl didn't care why, to her it just hurt.  That is until the person in brown smiled and offered her a Band-aid.  The smile returned to her face and her eyes lit up as she chose bright pink to compliment the yellow, green, and orange already adorning her delicate fingertips.  To her, that pretty little Band-aid made things all better.  To me, that Band-aid was resilience.  

Thirteen years later, I am watching that Band-aid Queen, her blonde halo still intact, struggle with where to go next in her life.  I wish that a simple pink Band-aid would return her twinkling giggle and her confidence in life.  Despite the knowledge that this time a Band-aid can't literally, "make it better,"  there is comfort in the knowledge that resilience still stands guard.  

That is what I read to the group, feeling slightly embarrassed.  The writers before me were humorous and fun.  I have no idea why these thoughts had chosen  now to flow like a river in front of virtual strangers!  But, that is the magic of writing and maybe even life, isn't it?  You just don't know the stories you can tell.

As a side note, Tylie chose her college today and decided to attend BSC for a year. She has huge hopes and dreams and can't wait to get them started.  It was difficult for her to start small and stay at home for a year.  Her fingers are no longer decorated with colored Band-aids but she wears her resilience like a badge.  I can't wait for the rest of her story!

I Run...

I run- sometimes a couple of times a week, sometimes more.  My reasons for running are probably different than they are for the average "runner" you see going around the Y.  And, let's be honest, I sure don't look like a runner!  So, why do I do it?

Today, I ran because before 9 AM  I had taken my son for a blood draw, gotten a text from a very frustrated T1 D mommy friend, changed a site and argued with a daughter about changing hers.

Today, I ran because in the last 5 days I have received a text from a friend about an 8 year old in her town that has just been diagnosed, a text from another friend diagnosed with gestational diabetes, and learned of an 8 year old girl who died from undiagnosed Type 1.

Today, I ran because in a couple of hours two of my T1 kids and I will sit with a team of health care professionals and pretend to be a pancreas and make some "educated" decisions with regards to insulin and carbohydrate ratios at certain times of the day in relation to hormones, activity, and the alignment of the moon.

Today, I ran because in a couple of weeks my other T1 kid will sit with that same team and we will repeat the process with hopefully better results than we have had for the past 2 years.

Today, I ran because my newly graduated daughter left for her blood draw by herself and it that was more emotional than the actual graduation ceremony.

Today, I ran because that same daughter will be going to college in less then 3  months and living with a stranger who will have no idea what to do when she stumbles across her roommate with her hand in a box of cereal surrounded by 3 empty juice boxes, 2 fruit snacks, a half a peanut butter sandwich and a granola bar and no idea how she got there.  A marijuana high would be the wrong guess... a blood sugar low, the correct one.

Today, I ran because I dread the results of those blood draws.  The A1c is a measure of glucose in the blood over time, however,  it frequently feels like a judge handing down a judgement of our parenting.

I run because there is really a lot of noise in my house and it is the only time it is quiet.

I run because if I didn't I would cry...a lot and all the time.  Running tends to take edge off and I can get mad enough to find a more productive outlet or I can find peace enough to let go of the small stuff.

 I run by myself when I am really frustrated or I run with friends when I need a perspective beyond the little videos that thread nonstop through my head like that new Vine app!

I didn't really want to keep going on my run today.  Then, I got a flash of TJ running in the Color Run this past weekend.  That little stinker ran 5K with barely a walk break and no training while wearing an insulin pump.  And Tylie, woke up with a ridiculously high blood sugar and fought through it to get it to an acceptable level to participate.  And Taya, who frequently reminds me that every bad mood is not necessarily diabetes related (it just feels like it!) And Tessa, who doesn't get to go with us to Washington.  Some days I really dislike running.  But, everyday, I really dislike diabetes.

So, I run.  I am trying to convince my frustrated T1 D mommy friend to run in the 10K portion of the Twin Cities Marathon for JDRF.  I'd go for the full but I did a half once and that about put me over the edge with training.  A 10K, I can do, especially for diabetes.   Anybody with us?