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!