Friday, November 14, 2014

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!

Wednesday, October 15, 2014

Invisible Battles

I am writing this post feeling frustrated, sad, and more than a little angry.  I want to tell you a story of a little girl. This little girl was born struggling for her life. She spent days in the NICU, while doctors worked of clear an infection raging through her body. She hardly cried, even as she was poked in a new place each day for blood or new IV when her little veins wouldn't cooperate. As she got older, she kept that stoic persona but her big blue eyes didn't miss a thing. Her first words were "Me, too" because she wanted to be just like her sister. At age 4, she actually smiled when she skipped out of the hospital with her new diabetes kit- just like her sister. After the first day, the smiles only came between wrestling her to the ground to give shots between meals.  Oh, the tears she cried- everyday for 6 years. But, she battled through and the only people that saw those tears were us at home.  She played hockey, volleyball, and soccer. She went to school and hung out with friends. Very few people would say she wasn't like everyone else.  On her 10th birthday, she got an insulin pump, cutting the tears back by gallons but not the frustration and pain that comes with a life long disease. Now at age 17, she is still fighting that battle.  She continues to be active in school, recently elected president of DECA.  She plays hockey, works part time, and wants to tour colleges that will help her get into med school.   On the outside, she is your typical 17 year old girl.  On the inside, she cries.   My fear is that she is losing her battle.  In her effort to pretend she is just like everyone else, she isn't taking care of herself.  When she was little, I could do some of the work for her, take some of the burden.  But, now, so much is in her hands and I don't know how to help her find a balance that works for her, that doesn't make her feel like she isn't like everyone else.

In the last month, I have gotten a call from our diabetes educator regarding both girls.  She is worried. I am worried.  I wish it would go away.  I wish.  It is the simplest of sentences but yet so complex.  I was listening to a friend talk about the 3 C's of addiction that families must understand.  "I didn't CAUSE this."  "I can't CONTROL this." and "I can't CURE this."  In the middle of his story, I blurted out, "That sounds a lot like parenting children with diabetes."   That first C is a whole other blog post and that third C, I have written about before but that second C- that's the one I'm struggling with right now.  When they were young, control was what we fought for; good blood sugar control, that is.   Some battles we would win and many we would lose.  Changing dosages, times of delivery, more frequent checking of blood sugars, taking out this snack and adding in this one- all strategies to try and find that elusive control; the balance between sugar and insulin.  While we still strive for blood sugar control, as they get older the decisions they make are more theirs and less mine.  I can advise, punish, take a step back, nag, scream, and even cry to try and influence their daily decisions (and I have tried!) but they are not mine to make.  Again today, we sat with the educator searching for the answers.  We talked about progress in research, promising breakthroughs, and future appointments.  Unfortunately, none of those things are helping her right this minute and I lack the words to make this all better.  It is not an owie that a kiss or a funky band-aid will fix.  I tell her we are not angry at her, that we want her to be successful, that we are proud of her, that we understand this sucks.  I don't know what she hears.  I know she is angry at the cards she was dealt.  I know she is sad when she feels she is disappointing us. I know she wants to never see a glucose monitor again. I know just being a teenager and the trials that alone brings increases her burden.  In my mind, she is still that baby girl fighting for her life.  I want her to keep fighting.  I don't want her to let this disease win; it doesn't deserve to win.  How do I help her find a way to conquer what must feel like an unconquerable demon?  I wish I could slay it for her.

Monday, July 28, 2014


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.

Thursday, July 10, 2014

Throwing it Back and Moving it Forward

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,  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, a new inhaled insulin is available and the list goes on.  Much of this amazing progress can be attributed to JDRF and their commitment to finding a cure.

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:   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.

Monday, May 12, 2014

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.

Wednesday, April 30, 2014

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.  

Monday, March 3, 2014

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!;jsessionid=3E02CBA99BF113CC198A372C01DECB63.app334a?pagename=homepage&page=UserAction&id=396&autologin=true&AddInterest=1122