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. 

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.

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!

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

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...

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!!!

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!

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.