Because Growing up is Hard Enough

This year, our second daughter decided to move into an apartment in her college town and take some summer courses.  In the short 2 months she has been away, she has definitely applied the life skill of problem solving.  The last few times she has called me, she is the epitome of Murphy's Law.  I have renamed it Taya's Law in my mind.  She learned how to change a light bulb of  light on a 10 foot ceiling without a ladder.  (Let's hope she doesn't do that again!)  She learned how to find financial aid when FAFSA fails and that you have to work hard and long to make money.  She learned how and where to get her oil changed so they don't try to convince her that her car will fall apart tomorrow if she doesn't fix this or that.   She learned that fun stuff costs money and so does locking yourself out of your apartment.  She learned you can't win a wrestling match with road dividers and she is on a first name basis with her building manager after discovering a wasp's nest in one of the bedrooms. (Very gross!)  One recent text simply stated, "I hate doing adult things."

All of the above incidents could have happened to anyone, well, maybe not anyone in 8 short weeks

Taking a break from anatomy
to do blood sugar check/
insulin bolus

but these incidents aren't exclusive to Type 1 Diabetes.  To top all of this off, she is learning to manage her own healthcare.  She has started seeing an endocrinologist, a new dietician and a new diabetes educator.  She is learning to navigate these relationships so that she can find balance between the life she wants to live as a normal college student and the life she needs to live as a young person with a chronic illness.  I am so proud of how she is learning to advocate for herself to find that balance.  To that end, she made the decision to take a vacation from her insulin pump. This, I am told, is a pretty typical occurrence.  She is just sick of being "plugged in" and wants to try something different.  Tylie made the same choice at age 18.  The difference was, Tylie was at home working with our own familiar pharmacy and healthcare providers.  Taya's first frustration came when her endocrinologist's PA, a young person herself,  was very supportive and encouraging.  The diabetes educator, an older woman, was not.  Taya stuck to her guns and chose to stick to the plan she worked out with her PA, which includes a shot of an ultra long acting insulin daily as well as 3-7 shots of short acting insulin as needed to cover food or treat highs.  Let that sink in...up to possibly 10 shots in a day not including finger sticks!  On the pump, she would still do finger sticks but only change her set (the part that delivers the insulin to her body) every 3 days.  Essentially she is exchanging roughly 2-3 "shots" a week for potentially 70 or more!

Next up, finding a pharmacy.  Since she was unfamiliar with Grand Forks pharmacies, her physician sent the scripts to a well known chain.  I gave her the information she would need for insurance and all should have gone just fine.  At 6 pm, the phone rings, followed by the question, "How come everytime I try to do adult things something goes wrong?"  They would not fill her prescriptions because they said her insurance was denying it.  After a frantic call to me, who called our insurance company, it seems the pharmacy was not entering her information correctly.  After another couple hours of run around- I sent out an SOS to people living in Grand Forks who finally hooked us up with a pharmacy near her that worked with her on a much more personal level.  At 19, picking up cold medication used to stress me out.  I can't imagine how frustrated she was waiting to get the medicine that is required to save her life while all her friends were off having a relaxing summer afternoon!

Blood sugar check before the Bison game. 

Tylie, too has had numerous challenges in her quest to fit diabetes things in with 21 year old things. Her path to diabetes independence was a bit less bumpy as she had the luxury of a more gradual transition.  An unexpected blessing for the girls is that for the first time since Taya was diagnosed, they do not have medical personnel comparing them to each other as they now see different teams.  But, we can't forget TJ as he transitions to middle school and hormones and balancing friends, sports, and his desire for independence.    In a world that is fast moving and ever changing, there is one certainty for these kids of mine--diabetes isn't something they can grow out of, ignore, or pop a pill to cure.  They need insulin and sometimes juice boxes for life support.

My desk at work showing a week
of blood sugar chaos for the middle
school boy.  

I encourage you to help us keep advocating for a cure by reaching out to your government officials and ask them to sign a letter of support for the Special Diabetes Program.  This program provides $150 million annually for the National Institute of Health to continue vital research on Type 1 Diabetes.  Finally, if you feel so moved, help us reach our family goal for the JDRF One Walk next weekend and donate to our team- T1-cubed and of course, we'd love for you to walk with us.

Consider Perseverance

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

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

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

A gift from my aunt

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

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

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

My uninvited green friend. 

Changes

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

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

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

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

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

This is Diabetes

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

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

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

 

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

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

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

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

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



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

Significance

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

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

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

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

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

Stolen Nights

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

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

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

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

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

Being 9

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

It's Been Awhile

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

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

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

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

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

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

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.

Road to Washington, DC

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

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

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

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

Ordinary Extraodinary

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

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

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

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

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

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.