Sunday, November 10, 2013

Reflections and Connections: Standards Based Grading and A1c's

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

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

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

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

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

Thursday, October 24, 2013

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.
 



 

Saturday, August 31, 2013

Bittersweet

We have been doing some deep cleaning around our house. I ran into this this morning- our first meal plan developed when Tylie was in the hospital. We have certainly come a long way!  However, looking at this, I can still feel the panic like it was yesterday. 

Sunday, August 11, 2013

Taking a Step Back

Changing roles is something I am used to when it comes to my job.  I have had several jobs in my life and even when I have the same job- teaching- I have done it in different buildings and at different grade levels. Change is good, it's expected, it keeps us fresh.  Except, I am having a little more trouble with embracing theory in regards to parenting!

Two weeks ago, my three girls flew off to Europe.  Before they left, I made sure that I had placed all the insulin supplies in their hands to be packed.  Lots of supplies!  Aside from the money factor, a large part of the reason I didn't want to go on this trip with them was that I wanted to allow them the chance to experience Europe on their own.  By that I mean, without the Diabetes Police.  I will admit, it is hard for me not to constantly ask them about their blood sugars, if their site needs changing, did they bolus, and the list goes on.  Of course, I left some instructions with my mom and told Tessa to slyly be sure they were checking.  We pick them up on Tuesday and I have to say, I am pretty proud of myself for not inundating them with texts about their care.  I did ask a few times, but in my defense, one was a follow up because Tylie was having low morning blood sugar and needed me to get a message to our educator asking for suggestions.  (They worked!)  The end result of all of this is I miss THEM!  The girls, not the diabetes.

I know that I have a tendency to get wrapped up in the details and the what ifs to the point that sometimes I forget to be in the "now."  Whether I am focused on blood sugars, lesson plans, house hunting- that is all I can think about or, as my husband points out, over think about.  My back up plans have back up plans. Do I like to control situations?  Absolutely!   I know that at times I can be downright irrational about it in fact. Call it OCD if you must.  However, in this case, beyond helping them get their necessary items in order and visually and verbally confirming that they were in the bags, there would be little I could do from across the ocean to change anything.  I knew without a doubt they could take care of themselves.  Somewhere, about day three as I was forcing myself not to send a text asking if they had been checking their blood sugars it occurred to me that I had to trust that they would take care of themselves.  It was time to let them practice all that we have taught them.  Maybe in the end, this will give them more confidence and they will be more consistent with their care overall.  At the very least, it will give me more confidence that they are more than capable without those annoying reminders I can't seem to hold back.  Keep in mind, I still have TJ at home so I am not diabetes free and still have had plenty of opportunity to exercise my inner control freak!   There is also Troy, who insists I never miss a chance to tell him what he should be doing!

The bottom line is that I am so proud of them.  I am not sure, in the same situation, I would have dared fly across an ocean.  Heck, I don't even have diabetes and the idea of flying across an ocean makes me queasy. It's that OCD thing again.  By all indications, they are literally having the time of their lives.  My two T1 girls side by side with their non-D sister experiencing the world.   I envy them that, their ability to go with the flow. Granted, they each approached this trip in a different way and with different expectations.  I have no doubt when they return, they will all be looking at the same picture but seeing a different story and that is how it should be.   I can't wait to hear the stories, to really listen to them and not ask the questions about diabetes that lurk in the back of my mind like a storybook villain.  These two weeks have made it painfully clear to me that my kids most certainly do not allow diabetes to slow them down.  I find it embarrassing to admit for all my talk about letting them be "kids first" that way too often I begin a conversation around a diabetes question.  Maybe I am letting it slow me down?  I am not making any promises about being entirely hands off.  After all, I am a mom and will be watching from the wings ready to jump in and save the day,  but I am going to make more of an effort to let them drive what they need from me.  These girls have lived with this disease for so long that they don't know anything different. They have grown with the support of some amazing health care providers, teachers, mentors and friends.  It might be time for me to learn from them and take as step back and trust what they know.  I am excited to discover what these amazing young women will teach me.

Monday, July 22, 2013

We did it!


Photo: We have an adult!  Happy 18th birthday, Tylie Olson!


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...


https://secure3.convio.net/jdrf3/site/Advocacy?cmd=display&page=UserAction&id=384


Thursday, July 11, 2013

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!!!






Tuesday, July 9, 2013

Day 1

It was a very busy day yesterday!  We started out early with a photo shoot. All three of them were chosen to be featured in some JDRF media things- thank you's for sponsors, a Build-a-Bear promotion and an interview about being a family with T1. They were awesome! We got a little break mid-day and the girls and Troy went out to eat while I stayed at the motel with TJ to get his much needed swim time. The afternoon included a song with Crystal Bowersox, more pictures-with Crystal and Gary Hall,Jr- and finally a banquet. On one of our elevator rides met Ray Allan and his son, Walker, who has T1. It is really humbling to see that many children with T1 in one space. Children diagnosed as early as 11 months old and some later in their teens.
 
After the banquet we had some time to walk down the the mall. What amazing sites!  TJ was in awe of the Lincoln Memorial. He is his favorite president!  Tylie was just in awe and Taya stated she has a "respect for history."  Dad made them stop for a lot of pictures so by the end of they day they said their smiles were frozen!  Another unexpected highlight walking back to the motel was seeing the Presidential motorcade.  


TJ woke up this morning singing The Promise song and taking about how awesome yesterday was. We can't wait to see what today has in store!

Monday, July 8, 2013

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. 

Friday, July 5, 2013

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!

Thursday, June 13, 2013

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!

Tuesday, June 4, 2013

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?





Saturday, April 20, 2013

CC2013

Getting invited to attend Children's Congress is a great honor.  And, as it turns out, a lot of work!  I have gone outside of my box and created a scrapbook and 3 videos.  All are attached here!  Proud of these kids- and not just mine!  D- kids live life with a grace and a resilience I can only find inspiring!

http://www.youtube.com/channel/UCJTrzhpX_FmWkX5n7icIm5w

http://smilebox.com/playBlog/4d7a597a4d5455344e6a633d0d0a&blogview=true




Monday, April 8, 2013

Look at the Ducks!


I follow a page on Facebook called "Type 1 (Juvenile) Diabetes Facts and Information".  She posts really good information as well as some really funny stuff.  She told me she finds the pictures searching on Pinterest when I asked about using this one here.  The image of this made me chuckle out loud.  Just this morning while walking to my car, I counted 4 test strips in the driveway.  Seriously, the driveway!  How does this happen?  They were not there yesterday!  They are so commonly seen laying about that even my husband notices them.  He came home from the baseball field on Saturday and stated he had encountered a first.  There was a used test strip at the baseball diamond and it wasn't ours!  At least we are not alone in struggling to get these little suckers to the garbage can!

But, funny image aside, I found the ducks symbolic in another way.  Way back in 2000, when I first heard the news of Tylie's diagnosis, my mind had immediately gone to the "horrible change" that had just happened to our lives.  It was like those ducks in the picture were dive bombing me with "what if's" and "OMG's" and none of them were good revelations.  I am going to spare you and myself the details of all those imagines because I don't like to visit that place in my mind.  Suffice it to say, those images are also why  I won't watch the movie Steel Magnolia's.  Instead, I want to look at the ducks a different way. 

When putting together our scrapbook for JDRF CC13 this summer, there was a lot of opportunity for reflection.  On Tylie's page, she wrote that she "tries to be a good example for her younger siblings."  And, she is in so many ways.  She recently participated in a competition for DECA (a business, marketing club) and qualified for Nationals for the second time.  Just this week, she won an event in a state journalism competition.  She student manages for hockey, babysits for other families, works polls in elections, and plays soccer.  She will go to college next fall and dreams of studying abroad.   Diabetes does not slow her down and she never fails to find the humor in it.  I can't help but to think all of these experiences will make her an amazing advocate in July.  Taya on the other hand, HATES diabetes.  There is rarely a day that goes by that she does not curse it.  For her, finding the positive is a battle she fights everyday.  At the same time, it doesn't stop her from living her life.  She plays hockey and will be inducted into the National Honor Society this week.  She studies hard in her effort to become a pediatrician.   She recently got a job in a nursing home as a step toward her career in health care.  While her approach to advocacy may not be as vocal as her sister's,  I have no doubt she will have an impact on people's lives.  TJ is an example of  a kid that that truly "lives out loud."  He never stops moving (or talking).  He plays hockey, baseball, football and soccer.  This weekend he was on his bike or jumping on the trampoline every chance he could.  His dream is to play hockey in the NHL.     (Ironically, the Ducks are one of his favorite teams.)  He does all this, pump attached, without skipping a beat.  His older siblings have taught him well and he is not afraid to tell others about what that thing is attached to his hip or why he has to poke himself before he eats.  His confidence makes everyone around him confident.  That was evident when I dropped him off at a birthday party this weekend and in the middle of me giving the parents my standard speech, the little birthday girl says, "It's okay, I know all about his blood sugar.  I'll watch him."   

One of my favorite quotes by an unknown author states, When the world says, "Give up," Hope whispers, "Try it one more time."  I choose to look at those ducks- that endless trail of test strips- as hope.  In our house we use an average of a little over 100 test strips in a week.  That is over 100 finger pokes and each one of them to me symbolizes hope and promise.  Hope that someday finger pokes will not be necessary and promise that until that day comes, we have options and opportunities.  I will do my best to be sure my children see their life for the gift that it is.  As a family, we will go to Washington and speak out about Diabetes.  We will be there physically, but we will bringing in our hearts all of their "brothers and sisters" who have fought this fight before them and who are fighting it today and for those yet to know the challenge.  Let's face it, some days are just hard and the easy thing to do would be to give up.  But, something within these resilient kids makes them get up and keep trying.  For them, I will gladly pick up a million test strips- bring on the ducks!

Excerpt from scrapbook for JDRF CC 



Thursday, March 21, 2013

A Day in the Life...

Yesterday T1D, Celiac and 3 teenage girls completely kicked my ass!  Let's rehash- shall we?

First, I woke up in the morning to the lovely sounds of whispers in the distance.  Only they weren't whispers so much as roars and the distance was only about 5 feet!  What was the problem, you may ask?  Well, of course it was the hair straightener and that dreaded act of waiting for it!  Somehow, it escalated to World War 2,627 and woke up TJ- poor kid, never needs to set an alarm.  This was followed by something about wearing jeans or shoes without permission,  me liking one better than the other,  why don't we ever have anything good to eat, where are my car keys, can I have some money...you get the idea.  Finally, I escaped out the door to work with a little bit of self-esteem and patience remaining.  You would have thought I was safe!

At work, the first order of business was a presentation by two young boys with Cerebral Palsy.  Considering  my emotional morning and the girls impending appointments with the CDE, the timing was bad.  It is never good when the teacher is in the back of the room crying.  I was never at any point thinking, "Oh, my kids could have it so much worse."  Instead, I was thinking of those boys' parents, of how exhausting some days can be, the constant list of needs and appointments and frustration.  As the presentation ended, they showed a slide show of the boys - in their wheelchairs- doing things like riding in a boat, skiing, sledding, fishing and above all smiling, always smiling.  They did not let their chairs slow them down, just as mine do not let their pumps get in the way.  Realistically, I know they do not smile everyday, just as my children do not.  But, it struck my as amazing that despite all they do and go through just to get up and get ready for a day, that they choose to smile.

With renewed optimism I set about looking for a a possible solution to stop the incessant fighting at my house.  For the last year or so, we have been trying to figure out how to put a 5th bedroom in our semi-finished basement so that Tessa and Taya would not have to share.  While my homebase kids were reading, I was also reading- about DIY projects.  Just when I am thinking I have found a solution, my email dings.  Did TJ bring a lunch today?  It's pasta and his teacher is concerned.  Of course!  I knew I had to leave for work early in the morning so I packed it the night before and left it in the fridge- where it still was apparently sitting!  GRRR- off to find that bag and deliver it before lunch !  It was beginning to feel like a Monday on a Wednesday and some of my new found optimism diminished.

Meanwhile, regarding the Diabetes Educator after school, Tylie was going to go by herself to the appointment as it was just a pump check up and I couldn't get out of work to be there at 3:00.  Taya, I planned to meet for her appointment at 4:00.  Through the course of the morning, she had informed me that she did not want me to go.  I was okay with Tylie by herself as she is almost 18 and will need to learn to do some of these things independently over the next few years (OMG, scary, another blog!).  But, I didn't want Taya to go alone.  For one thing, she keeps too much of her feelings inside and I don't want her to think of it as being alone.  Secondly,  I am just not ready for her to be that independent.  So, we are having a mad text messaging war and finally, she admits she doesn't want me to come because she knows it will be bad.  Again, this is exactly why I want to be there and she agrees to let me go.  She was right, it wasn't awesome, but it wasn't the worst either.  Our CDE is so good with her.  She never fails to find one positive every time we see her.  A few years ago, we had an educator that was like a military drill sergeant and when even Troy cried at an appointment and refused to go back, it was time for a change.   My dream, however, is still to get through an appointment without tears- well, that and a cure so we wouldn't have to be there at all!

Next on the agenda was to take Taya shopping for some "new room" items, followed by another doctor visit for Tylie.  Pneumonia take three for her this winter!  I won't list all of our winter ailments on top of the usual scheduled visits but honestly, I should get paid for my time in the Sanford waiting rooms and the pharmacy.  This was followed by a shopping trip to make sure Tylie and Taya (and their dad!) had all the food supplies they will need for their weekend in Minneapolis.  At 8 pm, I pulled into the driveway.  Thank goodness Tessa had found the perfect track shoe the previous night so I could actually go home!  It was time to kick back and put my feet up!  Ha ha ha- of course not!  We double checked set changes, insulin, strips, batteries and meters for the trip. Then we went back to the store to pick up the big item for the bedroom we couldn't fit in the car the first time around and a new Sioux sweatshirt for TJ for the big game today.  Lucky for me, this trip was just Troy and me and it ended with a margarita and an appetizer!

Parenting is hard business.  I have no doubt I would make just as many mistakes- maybe more- if they didn't live with chronic illness.  Some of our daily issues are "normal kid stuff."  But, I wouldn't be honest if I said there were days that the "chronic" part didn't drag me down.  It's impossible to smile every minute, everyday but like those boys on their boat or my girls in the shopping mall, or TJ on the rink, we can try for most!  Today is a new day and I tried to be proactive about my stress relief by going for a run.  As for yesterday, thank God for that margarita and this laugh- and assurance of bail money- provided by my friend.  




Thursday, February 7, 2013

Can you Imagine?

Can you imagine

.... what it would be like to wake up every morning and the first thing you do- the very first thing- is to poke yourself in the finger to get a tiny sample of your own blood?

...having to leave math class mid- lesson, a friend's house in the middle of the play date, or worse, a hockey game right before your shift because your blood sugar is too high or too low?

... being late for a big event because your blood sugar was too low and you couldn't drive your car until it got back to normal?

...having to tell a little machine every time a carbohydrate crosses your lips so that little machine knows how much insulin to spit out to keep your blood sugar at a normal level?

...waking up in the middle of the night feeling funny because your earlier activity sent you to bed with a sky high blood sugar only to crash 3 hours later?

...changing your pancreas every three days?

My kids don't have to imagine, it's their life.   As the mom of the kids dealing with these realities, I can tell you some days are just hard.  Not only do they deal with typical kid/teenager things but they deal with Diabetes.  With Diabetes comes responsibility, frustration, resilience, strength, courage but never, ever peace.  It's a never ending battle to find a balance.  The balance of insulin, the balance of friends who support you, the right amount of physical activity, the right amount of sleep.  The tiniest thing can tip your precariously balanced teeter totter and throw you onto the merry-go round.  As the mom, I get frustrated explaining to people that my children are not like everyone else.  They may look like it and act like it, but inside their bodies, they have a renegade organ that puts their life in daily turmoil.  I get angry at the coach who's expectations don't work in favor of our balance.  I get annoyed at the assumption that this is something they can out grow or choose to have.  I get anxious at the slightest sniffle because I have seen how sickness can make blood sugars go crazy and put them in a hospital.  There are days that the pressure of being their mom makes me want to scream!  Keeping them healthy is a full time job, a job that as parents we need to teach them to do well so they can continue to be the thriving, healthy young people everyone sees.  But, then as parents we have our own balance to find because we can't keep them healthy if we aren't healthy ourselves.  We have other children to raise and we need to make them feel the same love and support.  I'll admit, too often that third girl of mine gets lost in our Diabetes shuffle and that makes me sad.

In an attempt to find a balance, humor seems to be my go to strategy, both at work and at home.  As a result, I found myself chuckling to myself the other morning as a series of phrases were heard around our house.  Phrases that without Diabetes I would have been a bit confused about-translation in parathesis.

Did you check?  (Blood sugar)
Did you put in? (carbohydrate count/insulin)
What is your BS? (blood sugar though often feels like bull shit)
Did you poke? (fingerpoke using a lancet to get blood for a reading)
Are you high? (referring to blood sugar not drugs)
Mine is 104 so my BS is better than hers! (blood sugar reference made by small competitive boy)
and my personal favorite- "How's this butt cheek?"  (looking for site on body for set change)

While funny in a stand alone setting, taken as a group and translated, it is another picture of living life with Diabetes.  It is a full time job that nobody understands unless they deal with it themselves.

Last November, the kids decided to apply for the JDRF Children's Congress.  It happens every two years.  150 children go to Washington and meet with legislators to tell their stories and paint a picture for those who don't live with it daily.  To give a face to the disease and stress the importance of continued funding for research for a CURE, not just a treatment.  As an applicant, they were to write a letter telling their story.  I have no idea what the girls' letters said, as they didn't want me to read them.  However, TJ and I wrote his together.  On Tuesday, they got confirmation in the mail that of over 1500 applicants, they were chosen.  In July, we will be heading to DC.  When I was 8, the hardest thing I had to do each day was catch the bus to go to school. I had never even heard words like insulin, carbohydrate or Diabetes.  When I was 15, I am pretty sure my hair and getting my bangs "just right" was my biggest concern, not where I could wear my pump with the least amount of difficulty (and visibility). At age 17, I just wanted to go to college and see the world.  A good doctor and pharmacy in my college town was not even a blipp on the radar in my mind.  I would like to imagine for them a world like the one I remember- a world where "pancreas" was science vocabulary not a job description!   I am so proud of them for being willing to put themselves out there- to spread the word about living with something few people understand and many can't even imagine.