Herding Cats

It came across in my news feed - the story of a beautiful little girl fighting for her life.  Fighting for her life because of type 1.  It's all too common to miss the symptoms of type 1 especially during cold and flu season. 

Kycie's story: 
 http://www.youcaring.com/medical-fundraiser/kisses-for-kycie/300561
 https://www.facebook.com/kissesforkycie?fref=ts

 

"On January 25th, sweet Kycie started complaining of a headache. On Monday she said her tummy hurt and a little later she threw up. Her mom and dad figured she was coming down with the flu. She slept all day Monday. She was giving her sprite and water to help her tummy. She did not want any food. Tuesday there was no change, and her brothers started to complain of stomach aches and sore throats. Jamie took Daxton and Kycie to the doctor on Wednesday. They were given antibiotics for strep throat. By Thursday night, she was worse. On Friday they went to the doctor and went to the ER at 1:00pm. By 5:00pm she was life flighted to Primary Children's Hospital with blood sugar of 1148. Her parents had no idea that sweet little Kycie had diabetes!

En route to the hospital she had a seizure and another one right when they got to the hospital. She has been unresponsive ever since. At this point her blood sugars are under control. After reviewing her MRI the doctors said that she has extensive damage to the brain. The brain had herniated into the brain stem.They said if she survives to prepare themselves for her to be severely handicapped. They will do another MRI on Tuesday and at that point with decide if they should consider taking her off the breathing machines."

Reading her story I think of how just one more day could have changed our story.  Reading her story I think about all the people over the years who have told me to feel fortunate that it's "just diabetes". 

Nine years ago I brought Chase in for his two year well check.  At the time, he was asking for water constantly.  Constantly.  I mentioned it to his doctor who told me it could be one of two things - some strange disease that causes kids to drink any fluids they can get their hands on or type 1 diabetes.  I shared with her that my dad was type 1 and (I'll never forget this moment) she hesitated.  She hesitated then said, "Well, we will see you in a year."  You see, for two years, her mantra had always been, "This will pass."  I was a first time mother who worried too much.

Two weeks later, my son was in for the fight of his life.

It was November and he, too, exhibited signs of the flu but we knew something was not right.  At the advice of a day care mom who was a  nurse, we took him to Public Health.  A simple blood test confirmed our fears.  The nurse wrote down the name of a pediatrician she recommended at the "other clinic" and handed it to me as we walked out the door.  I saw my son fading in front of me.  I can still hear myself begging him to stay with me on the drive to the clinic.  "Stay with me, Buddy.  Please stay with me!"

For four days we watched our buddy slowly come back to us. Kycie's recovery is going to take much longer, but she has a community of type 1 families pulling for her.  Her story has taught others about the seriousness of this disease.

It is not "just" diabetes.  It is not "just" watching what you eat, counting carbs, finger pokes, and midnight sugar checks.  Diabetes is Kycie's story. 

I share our story because diabetic ketoacidosis (DKA) signs and symptoms often develop quickly, sometimes within 24 hours. For some, these signs and symptoms may be the first indication of having diabetes. Symptoms of type 1 are:

• Excessive thirst
• Frequent urination
• Nausea and vomiting
• Abdominal pain
• Weakness or fatigue
• Shortness of breath
• Fruity-scented breath

Chase is now 11 and thriving, but we never take for granted that DKA is still a threat.  Keeping blood sugars in the optimal range is like herding cats.  Too high and you risk DKA, too low and you risk hypoglycemia.  It's a tightrope he walks daily. 

There are many days when I think I should stop telling our story and just live with the uncontrollable cats in our lives.  About the time I want to give up, I read that the rate of type 1 among children under age 14 is estimated to increase by three percent annually worldwide.  And I then read Kycie's story.  If our stories bring awareness to type 1 symptoms and complications, then our voices should not be silenced. 

My buddy on D day 2004.

Enough

It is time to close 2014.  What a year.  The first paragraph of one of my favorite books describes this year the best:

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way – in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only."

- Charles Dickens, A Tale of Two Cities

 

I received A Tale of Two Cities this Christmas from Gary.  He overheard me saying I'd like to re-read it since it was one of the few books in high school I actually read and liked (sorry to all my English teachers).  I truthfully told Chase that we were supposed to read The Hobbit in the 7th grade, but I couldn't get into it no matter how hard I tried.  I think I may have used my friends, Carli and Jessica, to give me their Cliff Notes versions to get me through the quizzes.  Chase made it a point then to read The Hobbit and is now on to the Twin Towers.  Show off.

 

Words have so much power.  They can take you places you've never been.  They open your mind.  They can lift you up and they can bring you down.  I like words that inspire me.  I like ones that make me laugh too:

 

 

 

It took only one word this year to change my life.  That word was "enough" and it came during a sermon.  Our pastor described how if our basic human needs are being met, we have enough.  From that day forward, I realized how I truly have enough.  I'm overwhelmed with having and being enough. 

 

In 2014, enough was enough.  I could have gone on Pinterest to throw Leah a themed birthday party, but instead Gary and I took the day off  and took her to the local amusement park for a day of fun.  We celebrated her and that was enough.  I looked for many opportunities this year to just be enough, do enough and have enough. 

 

Tonight we will ring in 2015 with some friends.  These friends were instrumental in helping us through "the worst of times" in 2014.  I've been torn if I should make something fun and Pinteresty for the party or just buy a veggie tray at Sam's Club. Who am I kidding?  I will most likely make the banana bread truffles recipe on my Pinterest board.  I will more than like eat more than enough of them, too.  I'm a constant work in progress.

 

The end of 2014 can be closed with the beautiful words of one of Gary's favorite books, Les Miserables (I hope we have made our English teachers proud):

 

 



May 2015 bring you all enough.  

World Diabetes Day

Today is world diabetes day - kind of like every day for us, though.

All of our days are full of diabetes - testing reminders, carb counting, site changes, the glucagon battle, raising money for JDRF, diabetes support activities, and trips to the pharmacy.  Certain days I throw my hands up in the air and say, "I'm so sick of diabetes!"  Then I think of Chase's hands - hands that have been poked approximately 16,425 times. 

I didn't get much time with Chase before diabetes entered our lives (aka our second child).  He was still in diapers that fateful day 9 years ago.  I've tried to forget the sounds of him crying during diaper changes because he thought he was going to receive a shot.  At the time, I kept thinking about how I missed the part where hurting my child also equated to keeping him alive.  They don't tell you that when you sign up for parenthood.

I began this blog 9 years ago to keep family and friends updated on his progress.  At the time it was good and cheap therapy for me.  Lately, I see it as something that has morphed into me muddling through parenthood.  And I'm pretty sure I'm screwing my kids up somehow. 

It's hard to draw a line between not letting diabetes rule our lives and ignoring the elephant in the room.  What do you do when your child's blood sugar is 500 and he wants his favorite Sugar Bomb cereal for a bedtime snack?  The elephant can't be ignored so I say, "How about cheese and summer sausage instead & a glass of water?"  Head down and sad eyes he says, "Okay." 

The old saying, "This hurts me more than it hurts you" is the life of a D parent.  I hate the physical and mental pain I have to inflict on my child to keep away the real threats - amputations, heart, nerve, eye and kidney damage and death.   

I have to nag the boy.  A lot.  Lately he's been having trouble remembering to give himself insulin for what he eats - which is a big problem because he LOVES to snack.  Luckily, my kids are notorious for leaving out cereal bowls, yogurt containers, wrappers, etc.  I know what the messy little buggers have been eating and this usually leads to, "Chase, did you give yourself insulin for the granola bar you ate?"  His typical response is, "Oops, I forgot."  Jokingly one day, I asked him if I should buy a shirt that says, "Did you give yourself insulin?" and wear it all the time so I'd never have to ask.  A few days later, same scenario - wrapper on the counter and "The question".  He looks at me and says, "Yeah, I think you need to buy that shirt." 

His humor has gotten ME through this disease.  His heart has, too.

I tried not to involve him in what I've named "The Glucagon Fiasco" with his school.  He knew something was going on, but didn't ask any questions.  On the day we received word that glucagon administration would be added back into his 504 plan I told him we were going out to celebrate.  I described how we fought for 8 months to make sure he would be safe in school.  His one and only question was, "Did this get fixed in other kids' schools, too?" 

I know I'm screwing up as a parent, but that day gave me two wins.  I might be doing something right after all. 

Now, if I could only teach them to clean up after themselves.

Just Lucky, I Guess

Today's topic - Chinese food.  I'm not talking all-you-can-eat buffets.  I'm talking real Chinese food made from scratch.  I'm talking the Rice Bowl in Mandan (voted top 100 Chinese restaurant in the US for a reason).  Gary and I frequented it so often that they gave us a baby gift before Chase was born.  Chase received a Christmas gift from them the following year even though they had to vacuum up after him every time we visited.

Now, almost 11 years later, it isn't a surprise that he asks to go there often (if only the budget would allow).  For a kid who is a picky eater, it is wonderful to see him down egg drop soup, hoard the crispy tofu, and savor chicken and vegetable stir fry.  When the fortune cookies come out at the end of the meal, the kids go wild.  They love to read their fortunes and hear ours. 

A recent trip to the Rice Bowl left us with one of our favorite fortunes so far:

"To be lucky is a lot of work." 

Amen, brother. 

Amen.

I used to say we were lucky.  Lucky because Chase is an easy going kid.  Lucky because we have great health insurance.  Lucky because he is on a insulin pump.  Lucky because he hasn't had any severe high or lows that have required hospitalizations.  We are lucky! 

Is it luck, though?

Chase is an easy going kid because that is who he is.  Period.  He's been that way since day one.  His sister and brother are another story...

We have awesome health insurance because it goes with our jobs.  We have our jobs because we've worked hard to obtain them.  Would we love higher paying jobs?  Would we love to live somewhere warmer?  Heck ya, but we know that leaving our health benefits would greatly impact his level of care.  We will endure horrible winter after horrible winter to keep him healthy if that is what it takes.  Ask me how lucky I feel in January.

The transition from shots to an insulin pump went very well (it helped that the boy LOVES electronic devices).  Was it luck or did it take some convincing on our part to get our medical team to allow it?  Was there a tremendous amount of work to get insurance to approve it?  It was work.

Are we lucky he hasn't been hospitalized due to diabetic complications?  If luck is working 24/7 365 to manage his blood sugars, then yes, we are lucky.  A minor cold can turn to into something wicked in a child with type 1.  We don't count on luck to get us through illness.  We do all we can to get him over what ails him as quickly as possible. We religiously meet our diabetic care team every three months to go over his A1c test results.  Lately we've had to fight to make sure the school provides glucagon in the case of a severe low. It has been a decade of hard work to keep him safe. 

It took a cookie for me to see luck differently.  I hope my kids find that the harder they work the luckier they will be in life. 

And, I hope when they come for a visit, they will take their mom to the Rice Bowl.

Chapter 2

One more day left of school.  Just one more day.  I'm ready to close the book on this school year.

It started out beautifully.  We received a call BEFORE school started to get Chase's 504 plan in place - the first time in 4 years that happened.  I was thrilled.  We had a plan in place and were ready to rock another school year.  Then, in February, The Call came.

Since The Call, I've cried, I've sworn way too much, and I've called, emailed and talked to anyone who would listen.  I've made friends and I'm pretty sure I've made some enemies, too.  I've wondered why some parents have taken no action to help the cause.  I've wondered how a school district could implement a policy that puts my child's life at risk.  And I've started taking Zoloft.

It's hard to admit I can't handle this anymore.  I'm a North Dakota girl.  We suck it up, buttercup, and move on.  We don't need help.  After eight years of being strong and a battle like I've never seen, I needed to settle my mind.

Best decision I've ever made.

I'm able to look at diabetes in a new light.  I've had constant support from some people.  I've had unexpected support from others.  And, unfortunately, some friends and family have been MIA.  At the end of the day, though, all Chase has is Mom and Dad.

This morning I read through some of the many papers Chase brought home from school.  Some made me giggle - like his position paper on why kids should have iPhones (good one, Chase) and how kids shouldn't play video games. 

Then there was the one he started and didn't finish.  "On November 29th, 2005, a threat entered my life."  A part of me wanted to know what else he had to say.  Another part of me wanted to finish it for him.

"On November 29th, 2005, a threat entered my life.  My mom and dad have been fighting ever since to keep me safe, though."

I can't close the book on diabetes no matter how hard I've tried.  What I can do is help Chase write his story.

Taking on North Dakota

Recently I realized the word "mom" is not a noun.  It's  a verb.  As a mom I'm always doing something mom related - picking up after the little darlings, running them to dance and piano.  Feeding or bathing the little buggers, etc.  My action word now adds taking on the North Dakota State Legislature.

On Tuesday I received a call from Chase's school nurse.  She informed me that due to state law, only she could administer a glucagon shot in case of a severe hypoglycemic event (low blood sugar).  My head spun - she's only there part time, we've trusted that someone, anyone at the school would give the shot if needed.  I kindly (I hope) relayed my disapproval of the law.  She put me in touch with the head of the school nurses to further make my head spin.

I was given a lesson on the ND Nurse Practices Act.  It states that glucagon is not stable or predictable and therefore cannot be administered by anyone other than a nurse.  Herein lies the problem.  Glucagon is both stable and predictable (add that we need full time school nurses, too). It is not dangerous.  Period.  Not administering the shot is what is dangerous.

Their solution?  Call an ambulance and administer glucose gel.

In severe cases of hypoglycemia - those in which loss of consciousness occurs, giving anything by the mouth is both difficult and dangerous.   The human brain depends on glucose to function.  Time lost waiting for an ambulance puts my child's brain at risk for damage.  Damage that could be avoided by giving the shot.

Yes, we've gone 8 years without having to breakout the glucagon.  The head of the school nurses tried to reassure me that glucagon is rarely used because kids today have much tighter control than years ago.  To this I say - SHIT HAPPENS.  We haven't come this far by letting our guard down. 

Last year I saw it.  I saw it from 100 feet away - a very low blood sugar. School had just gotten out and Chase was walking toward me leaning against the building the whole time.  I ran to him.  "I'm hungry," was the first thing he said to me. His blood was 47.  Why did he go so low?  He gave himself too much insulin at lunch.  When you ask an 8 year old to be in charge of counting his own carbs at lunch and then give himself insulin, shit will happen.

Nearly two years ago, I watched my dad have the mother of all insulin reactions. Over the course of 2 hours,  I watched my mom coax 32 ounces of sugared soda into my dad.  He had accidentally given himself too much insulin before bed.  Shit happened.

Where do we go from here?  I have no clue.  I do know I'm ready to fight not just for Chase, but all the ND kids affected by this law.  I'm ready to be the mother of all moms.

Just Keep Swimming

Resurfacing.  To come to the surface again.  To reappear.  For years I've felt like I've been keeping my head above water so when I read the article Resurfacing, it resonated with me. 

Eight years ago I was thrown under water.  The simple world on land I knew was no more.  In its place were meals and snacks that included algebraic equations and chemistry (two of my least favorite subjects in school, ironically).  The daily requirements to keep my son alive were mentally and physically exhausting - finger pokes and needles full of insulin all aimed at a two year old moving target.  Sleep was a long forgotten luxury. 

Flash forward eight years and two more kids later.  I don't remember Leah as a baby.  How is that possible?  How long have I been under water?  Cole's surprise immaculate conception and colic pushed me further under water.  Three kids - one with diabetes, one I managed to raise from birth in a fog, and one that has lived up to being a fiery little redhead - all while eking out a successful career as well.

I'm slowly leaving the water.  I feel tired, yet a little victorious.  We all survived.  I'm not naive enough to believe that I won't be thrown back in, but I'm starting to resurface.  I do know that I'm emerging a different person than I was eight years ago.  To be honest, I'm not sure who I am right now - wife, mother, part time pancreas, part time accountant?  I'm all of those, yet so much more.  I'm ready to come out of the water and see who I really am.

The kids safe on land.

Brave

Brave - an adjective meaning having or showing courage.  In my life, it is also a noun called Chase and Dad.

Yesterday I underwent my first surgery.  It was a simple procedure on my wrist to remove a cyst that has been plaguing me for years.  As I was prepped for the procedure, I had a plethora of wipes, syringes and IV needles placed into my lap.  As I listened to the nurses explain what they were about to do, I thought to myself, "Chase does this every three days.  You can do this."  So, as the first IV went it, I was brave.  I was Chase.

Then, as I was brought into the OR and strapped to the bed, I was Dad.  Lord knows how many procedures that man has had.  When the nurse started giving me a relaxer, I almost said, "No, I'm good," (hindsight - I highly recommend it).  I laid there, relaxed, thinking of the two boys that paved this road for me.

Taking on type 1 has been a lesson in bravery.  It's been poking my child's skin 5 or more times a day to get that precious drop of blood.  It's piercing his skin with a needle multiple times a day to give him life giving insulin.  It is looking at diluted insulin, full strength insulin, and long acting insulin bottles in your fridge and making damn sure you grab the right bottle.  It is getting him through his first insulin reaction, then his second, then his third and then realizing that reactions never get easier.  It is making the decision to put your 3 year old on an insulin pump when it has never been attempted in the state.  It is learning to adjust the pump for highs and lows.  It is pump site changes every three days.  It is putting him in the care of others - day care, school, play dates.  It is allowing yourself to sleep through the night. 

Mainly what I've learned these last eight years is that bravery doesn't mean you aren't scared.  It means knowing what you need to do to achieve the best outcome.  Our journey has never been easy.  It's taken a lot of hard work, some luck, and one brave kid.  I am brave because he is brave.

A November Attitude

This is a tough month for me.  This summer loving girl isn't impressed with the 18 degrees she woke up to this morning.  This snow hating girl isn't ready for the rath a North Dakota winter is preparing to unleash upon her.  And it's Diabetes Awareness Month.

Ironically, November is the month Chase was diagnosed.  I don't need a month to be aware of diabetes.  We live with it 24/7.  365.  We live it through my dad, too.  Last November, I witnessed him have the mother of all insulin reactions.  Tomorrow Dad will undergo surgery to have his middle toe removed due to an infection complicated by diabetes.  So, screw you Diabetes Awareness Month.  Screw you. 

Okay, so I do try to remain positive.  Really.  What other option do I have?  What I've learned in the last 8 years is that you can hate something but that won't change the situation.  It is what it is.  The only way you can change diabetes is by changing your attitude.  For me, I write.  Sometimes I cry.  I find solace in my support group.  An occasional glass of wine works, too. 

Eight years ago, my mom framed an article from a doctor who stated that diabetes would be cured in 10 years.  Although the article is fading, I still think of it everyday.  It gives me hope.  Some days that is all I need to bring me around.  Hope and an 80 degree day.

United

I had a nightmare last week.  I dreamt that Chase died from a low blood sugar. 

Startled awake, I told myself, "It was just a dream.  He's okay.  Go back to sleep."  Then that other voice in my head questioned, "What if it's not a dream?  What if you're supposed to wake up and check him?"  So, at 5 in the morning, I crawled into bed next to him and listened to him breath.  It was a beautiful sound.   Adam Levine could have been in the room singing a ballad just for me and I would still rate the sound of his breath the most wonderful sound in that room.

Relieved, I just lay there listening.  Then I realized that I've become the mother in the book Love You Forever.  It is inevitable that I will someday drive my car across town with a ladder strapped to the top.  I will crawl across the floor of his bedroom, and if he is asleep, really asleep, I will rock him and sing, "Love you forever, like you for always, as long as I'm living, my baby you will be."  That somewhat creepy book made sense in that very moment.

Later that day I relayed my dream to Gary.  We talked diabetes for a little bit and then he said, "You might want to see what Chase wrote on the calendar."

As I read "Worst day ever in 2005" written on November 29th, my first thought was, "Damn you diabetes.  You win today."  Then I listened to what Gary told Chase.  He told him, "You could look at it as the worst day ever, or you could look at it as the day we finally found out what was wrong.   It was the day we knew how to make you feel better.  It was the day your life was saved.  It is a day to celebrate."

Even though we are closing in on our 8 year diabetes anniversary, we are still a work in progress.  It can cut, it can sting, but when we unite, it doesn't win. 

And, united, will continue to dream of a cure.

Me and Zzzzzzz

Last week, Hallie at The Princess and the Pump gave me the kick in the pants I needed to write again.  In her post, Destination Me, she challenged us to start taking care of ourselves.  She was going to start with getting more sleep.  Sleep.  How I've missed you.

I've been meaning to write about sleep.  Or lack there of.  My precious little boy did not sleep through the night until he was about 9 months old.  Or my darling daughter.  And my sweet baby boy as well.  Evil.  All three of them. 

Want to know one of the best ways to get on my bad side?  Tell me your child slept through the night at 6 weeks old.  BOOM - there you are!

Once son number one started sleeping through the night life started to get back to normal.  The little bugger did not like his crib.  He did not like his toddler bed.  He liked to be smack dab in the middle of his mom and dad. 

Around 22 months, our sleep was disrupted again.  That kid was a kicker and a thrasher - so much so that one of us would eventually have to move to another bed.  In hindsight, his restless sleep makes sense - to this day he will kick and thrash with a high blood sugar (in his OWN bed...thank God).

At age two came the diagnosis and the end of sleep for a very long time.  Enter sleepless nights worrying about him going low.  Or high.  Enter baby girl.  Enter continuous glucose monitor that wakes you from your slumber.  Enter baby boy.  Enter &^%ing colic. 

Enter studies about the health benefits of uninterrupted sleep to make you lose sleep over losing sleep.  A good night's sleep helps lower stress, improves your memory, makes you more alert, helps control your weight, and so on and so on.  Sign me up.

We've been working on sleep for a few months now.  Realistically, we like the kids to be in bed and asleep by 9.  It's hit and miss and we are the kill joy parents in the neighborhood, but sleep is a priority in our household.  Even if the sun is still out at 10 pm, Leah Marie!  Room darkening curtains, melatonin and white noise are my new best friend.

I stumbled across this image when I was looking for quotes on sleep.  It pretty much explains why I don't take care of myself.  Most of my sleep has been lost to diabetes - either worrying about it or "managing" it.  Although I complain about losing sleep, it has been worth the sleepless nights.  Every morning I wake and see those beautiful blue eyes looking back at me, that extra cup of coffee I may need is well worth a sleepless night. 

I'm getting there, Hallie.  I promise. 

Brain Wrapping

A few years ago my coworker, Kevin, put his daughter on speaker phone while she sang us all a funny song.  At the end of the song, she said, "Wrap your brain around that!"  That kid!  That line!   "Wrap your brain around that!"  Classic. 

I liked working next to Kevin.  He was witty, charming, sarcastic, and way more warped than me.  He was there for me in those first years of Chase's diagnosis.  He patiently listened to many a diabetes adventure from me.  For some reason, I remember telling him a story about my non-cooperative boy and a shot one day. 

And here is the part that hurts. 

Really hurts. 

At the end of my "Chase was running from us and we had to pin him down to give him a shot" story, he shook his head and said, "I could never do that to my child."  Now, if you know Kevin, you know how much he freak'n loves his kids.  Although he is a teddy bear, I'm pretty sure he'd claw out your eyes (and other body parts) if you hurt his kids.  And here's the crappy part, his son was diagnosed with type 1 almost two years ago.   

Wrap your brain around that.

"I could never do that to my child." -  I uttered that same damn sentence to myself many times while sitting in the hospital room with Chase.  Insulin ratios, carb ratios, carb counting, how to draw insulin, how to give a shot...it was overwhelming.  How was I going to do this to my child?

You quickly wrap your brain around the reality of the situation.  You have to do it.  They are counting on you.  Amazingly, you find strength and courage you never knew you had.

 In each and every:

    shot, 

        finger poke,

             carb counted,

                  doctor visit and blood draw,

                         pump site change,

                                 504 meeting with the school,

                                               midnight blood sugar checks

                                                     force fed juice or fruit snack

there is love for your child.  Unconditional love.  Love does come in a bottle. 

Wrap your brain around that.  I know Kevin and I can.

Best Day Ever

I love age 5.  LOVE IT.  At this age, she still holds your hand.  You receive about 10 "I love you!" cards a day.  She is in love with life.  Every day she tells you this is her best day ever.

Lately I've been trying to "Live Like Leah".  Usually I'm like Homer Simpson in the Simpsons Movie.  After being publicly humiliated, Bart tells his dad, "This is the worst day of my life!"  Homer, giving his best fatherly advice, tells Bart, "This is the worst day of your life so far." 

I've met a lot of families with more than one child with type 1.  Everyday I wait for the proverbial other shoe to fall.  I analyze everything my little non-type 1ers do.  Why are they asking for water in the middle of the night?  Why are the peeing so much?  They are crabby lately.  Why are they so crabby lately?  Should I test their blood?  When is it going to happen again? 

When am I going to experience a day that tops my worst day ever?

I've done all I can to keep that day away.  The problem is, there is no prevention.  Every year Leah is tested to see if she is developing the auto antibodies to that lead to type 1.  This year Cole will start the testing as well.  It rips at my heart to see that needle break her skin and take that blood sample.  The sample that will take six weeks to analyze - the longest six weeks of my life.

When the letter from the University of Minnesota finally appears in my mailbox, I shake.  I search immediately for the "no auto antibodies are present at this time" line.  It is my best day ever. 

I know a cure is on the horizon.  I must think like Leah.  I must trust that every is my best day ever.  And that tomorrow it will only be better.

Today is the best day of my life, so far.

Guardian

Diabetes - it not only destroys your beta cells, it steals your sleep, too.  Last night it was a trip to the bathroom that made me curse it silently and crawl out of bed for a blood sugar check (late night bathroom trips are always an indication of a high blood sugar).

These midnight potty trips always make me think of the first Austin Powers movie where, after being frozen for 30 years, Austin is put in front of a urinal.  And he pees.  And pees.  And pees...  Well, you get the picture (if not, click here).  As I waited for Chase, I giggled thinking about the movie and it made me wonder what has been good about this disease other than pee jokes?

First of all, it makes you take nothing for granted - especially our health.  Thanks to the education we have been given in the human body over the last 7 years, I can safely say, it has made us healthier.  As a example, one day I brought a Marie Calendar's pot pie to work for lunch (yum, I know!).  Being a diabetes mom, I wondered how many carbs where in that baby's flaky crust.  Taking from my education in checking nutritional labels, I was surprised it was only 54 carbs.  Then I checked out the serving size - 2.  Holy moly!  108 carbs.  And over 1,000 calories.  I haven't touched one since.

Diabetes makes us stubborn.  It doesn't stop us from traveling, eating (except pot pies), or dancing like crazy to whatever is the favorite song of the month in our house.  We pretty much tell it, "You can't stop us from living.  We will show you."

Diabetes makes us friends.  We have been blessed to share this journey with some other amazing type 1 families. If it wasn't for diabetes we wouldn't know them, and for that I am thankful for type 1.  They are wonderful moms and dads just as crazy and neurotic about their children as we are about ours.  Best of all, their eyes don't glaze over when I talk about insulin pumps, carb ratios, sensitivity factors and ketones.

Diabetes makes us trust.  It's one thing to put your child in some one's care, but it's another ball game when they are diabetic.  We've come a long way in the trust department.  We've even worked up to sleepovers.  It hasn't been easy, but we've learned to give up control and learned to trust. 

Because of all of the above, we feel.  A year ago, while driving to work, this song came on the radio: Guardian by Alanis Morissette.  It spoke to me like no other song ever has.  After it ended I looked liked Alice Cooper with my "water proof" mascara running down my cheeks.   It was a song about Chase and me.  It made me sad, but it gave me, for the first time since diagnosis day, a reason.  I am not only his mom, I'm his guardian - his label reading, stubborn, trusting guardian with a great support group in her corner. 




Guardian
by Alanis Morissette

You, you who has smiled when you're in pain
You who has soldiered through the profane
They were distracted and shut down

So why, why would you talk to me at all
Such words were dishonorable and in vain
Their promise as solid as a fog

And where was your watchman then

I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian

You, you in the chaos feigning sane
You who has pushed beyond what's humane
Them as the ghostly tumbleweed

And where was your watchman then

I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian

Now no more smiling mid crestfall
No more managing unmanageables
No more holding still in the hailstorm

Now enter your watchwoman

I'll be your keeper for life as your guardian
I'll be your warrior of care your first warden
I'll be your angel on call, I'll be on demand
The greatest honor of all, as your guardian

Are You There God? It's Me, Susan.

There are two topics I avoid in this blog - politics and religion.  I stay clear of politics because some people feel the incessant need to change me.  That's not going to happen, I like what I am.

Then there is religion.  I was raised Lutheran.  Gary was raised Catholic (he says he's a recovering Catholic).  So, therefore, we are members of the United Church of Christ (it seems to be a theme).  A vast majority of my friends are Catholic, some are Baptist, Evangelical, Lutheran and even Hindu.  I  have a few agnostic and atheist friends as well.  Faith fascinates me.  Faith infuriates me.

There is a saying that God only gives you what you can handle.  Well, lately, I kind of feel like I've been given enough.  I often ask God, "Isn't diabetes enough?  Do I really have to deal with all this other shit?"  Even when trying to get away from it, it's always there.

Gary and I were able to finally take a vacation together after 10 years.  No kids.  Just us in sunny Las Vegas.  It was the first time in 7 years we were 1300 miles away and in a different state from Chase.  It was a BIG deal. He was in the expert care of my parents so Gary and I never once worried about regular blood testing, carb counting, etc.  We didn't even talk about diabetes, until the boat ride.

I was so looking forward to the gondola ride.  It was the main reason I picked the Venetian Hotel.  (I've come to the conclusion that I will probably never make it to my dream destination of Venice, so I'll have to settle for a themed Vegas hotel.)  So, we board the boat with another couple and the gondolier serenades us with song (yeah, it was cool).  As we approach a tunnel, she instructs us that if we make a wish and kiss in the tunnel, it will bring good luck. 

Well, you can guess what I wished for which then took me into that dark place.  The one that wondered what the other couple sitting across from me wished for.  Did they wish for something fun, crazy or extravagant?  A few minutes after departing the ride, I turned to Gary with tears in my eyes and asked, "Did we wish for the same thing."  With the squeeze of his hand, the answer was yes.

I used to believe everything happens for a reason.  Now I just feel like Charlie Brown.  Every fall Lucy promises to hold a football for Charlie Brown to kick, and every year she pulls it away as he follows through, causing him to fly in the air and land painfully on his back.  I wish I had the faith and belief that I see my friends have.  I wish I had the faith and belief that I try to show my friends.  Right now, I'd just like to kick the damn ball.

Burn Notice

This has been a tough diabetes year.  Luckily, it hasn't been due to endless nights of sleep lost trying to reign in crazy numbers (that's been the previous 6 years).  It hasn't even been due to battles with Blue Cross/Blue Shield.  Heck, they have yet to make me me cry this year (knock on wood)!  No, it's due to the dreaded burnout.

Unfortunately, I've been expecting this time would come - the time when he's just had it with type 1.  This school year he has made it abundantly clear he's tired of it all - the questions from classmates and well-meaning teachers, nurses, and the school counselor.  Tired of testing his blood 5 times a day.  Tired of having to pull his insulin pump out after every meal.  Tired. 

I've been asked (twice) lately what it is like to be "normal" - what is it like to not have diabetes? 

It is an easy, yet a tough question.  I don't want to sugar coat (pun intended) what he is going through.  I am honest.  I told him, "Well, for starters, I don't have to test my blood before I eat every meal.  I don't have to give myself insulin for everything I eat.  I don't have my parents on my butt all the time saying, 'Test your blood.  Did you give yourself insulin?'"  I let him know that I have no idea what it feels like to have a high or low blood sugar. 

And then I told him I wish I did.

I told him that diabetes hurts me, too.  It hurts that my beautiful son has it and I don't.  As his mom, it hurts me to see him hurting.  It hurts me to know that I can't make this better.  And, if I had the opportunity, I'd take it from him.  Right.  Now.

He may only be 9, and not yet a parent, but I saw that he understood we have something in common.  Although we live in different worlds, we aren't alone in how diabetes can hurt you.  Although it didn't take away his pain, he knows he's not alone.  He's never alone.

Diminished

I feel that society is telling me that I'm suppose to feel lucky that my child only has diabetes.  I'm suppose to tell my 9 year old that things could be worse.  I am to diminish all his pain, anger and frustration from the last 7 years because he "just has diabetes".  Will I?  HELL NO.

My child has every right to feel sorry for himself.  He has endured 13,000 pokes to his fingers and toes.  His insulin pump needle has been changed over 300 times.  He's had over 30 blood draws.  Everything he's eaten in the last 7 years has been monitored.  Everything.  He's had to take insulin for every carbohydrate eaten.  Never a break.

His pump is attached to his body 24/7.  It is removed to bathe or swim and then it is immediately attached back to his body.  Why?  Because he would die without it.  Melodramatic?  No, truth.  Without insulin he would go into diabetic ketoacidosis (DKA) in 2 days.  In less than a week he would be dead.  I am to be thankful for this disease?

I've seen him in DKA.  It was November 29, 2005.  He was dehydrated and lethargic laying on a hospital bed.  He was vomiting.  He was dying and he needed insulin.  After 4 days in the hospital & on an insulin regimine he was back.  He came home and Gary and I became full time pancreases.  We've worked our asses off to make sure we never see DKA again.

Now, do I talk about Chase's journey because I feel sorry for myself?  Because I want attention?  HELL NO.  I scream Chase's story from the roof top because I want people educated about this disease.  I want people who have healthy children to not take for granted one second their health and well being because things can change.  For the worse.

So, the moral of this post is:  never, ever, ever tell someone that things could be worse.  You have NO idea what they have gone through.  You have no idea what they are currently going through.  We know things could be worse.  Comparing our suffering to someone else's is futile. 

But, if we want to compare things, chances are, I hug my kids tighter at night than you hug yours.  I take nothing for granted.  I can thank "just diabetes" for that.

Passion

I shouldn't be writing.  It's too soon.  It's too painful.  It's coming back.  But I need to do it.

18 years ago.  I remember it like yesterday.  I was home from college.  I was watching Days of Our Lives.  The phone rang.  It was my mom.  She was in Minneapolis with my dad, sister and brother-in-law, John.  Mom asked me what I was doing.  I could tell something was wrong.  Then she was gone.  My sister came on the phone and said, "Susan, Dad...".  Then she was gone.  Then it was John.  "Susan, your dad has had a stroke."  I don't remember what he said after that. 

What the hell?  He's 49.  What the hell?

The story I've heard is that he left the hotel room to get batteries at the nearby gas station.  Then it hit.  He was able to walk back to the hotel.  He's told me that he remembers leaning against a semi trailer as he tried to walk back.  People asked him if he was drunk.  My dad was having a stroke and people were asking him if he was drunk. 

I don't remember how long he was in the hospital in Minneapolis.  It was too long.  He came back to North Dakota for rehabilitation in Grand Forks at the Rehabilitation hospital.  Luckily, I was going to school at UND at the time and I was able to see him everyday.

Now, 18 years later, he is back there. And due to a fricking winter storm, here I am - not with him.

What caused his stoke?  Diabetes.  F***ing diabetes.  It was the first thing I thought of when Chase was diagnosed at the age of 2.  STROKES.  I really hate strokes.  REALLY.

If you want to know why I am so passionate about finding a cure, this is why.  I've seen first hand what diabetes can do to the human body.  Thirteen years ago I remember hugging my dad goodnight before he had open heart surgery - yet another complication due to diabetes.  I didn't know if that would be the last time I'd ever see him again. 

What my dad has been through has made me the type 1 diabetes mom that I am today.  Neurotic.  Obsessive.  Passionate.  And, today, angry and sad.

My dad was a teacher.  A kind of crazy-fun teacher (I had him for Shop and Graphic Arts, so I can say this).  One day he brings up from storage an old winter coat that belonged to my sister.  We ask him what he's doing.  He says there is a girl in one of his classes that he's worried about.  She needs a better winter coat.

That's my dad.  Diabetes can take a lot from us, but it can't take who we are.  It may affect the mechanics of your heart, but not the beauty of your heart.

There is no cure for diabetes, but I do believe in the power of prayer. Please pray for my dad for a quick and speedy recovery.   

Pushing

Why do we do what we do? 

First and foremost, to keep our child alive and healthy.  Tying with number one, we love him. 

Second, if we don't take it seriously, how can we expect him to take it seriously? 

Although he is only 9, we already fear the day he is on his own.  Will he test his blood before every meal?  Will he give himself insulin after he eats?  Will someone notice the subtle changes in his personality that could signal trouble ahead?  Who will be there to administer the glucagon in case of an emergency?  Mainly, will I be able to convince him to go to the same college I work at for his first two years of college?

We push diabetes management because we love him.  We push him to do his homework so that he will be an educated young man.  We push him to clean his room so he becomes a responsible young man.  We push him to be nice to his sister so we don't hear them fighting so he learns compromise. 

There are no awards for successfully parenting a type 1 child, nor do we want one.  Our reward is his future:  high school graduation, college graduation, seeing him explore the world, finding a career he loves, falling in love, grandkids...

Last year Chase was assigned Abraham Lincoln to study for President's Day. He really got into his life and the impact that he made in history of the United States. We made a few expensive trips to Barnes and Noble to buy more books to read up on his life. When I came across this quote, I thought it was perfect for the young man I am striving to raise:

 

When the din of the world (and his parents) pushes him to be this or that, I hope he can stand firmly and just be himself - and be a good one. 

Giving Thanks for Seven

Parents of diabetic children do something strange.  We take time to observe the day our children where diagnosed with type 1.  It may seem like a day we would all want to forget, but even after at least 12,775 finger pokes, 720 infusion sight changes and 28 blood draws, it still seems like yesterday. 

Nine years ago, we celebrated our first Thanksgiving Day as a family in the hospital with our day old son.  Little did we know, we'd be back in the hospital 2 years later fighting to keep that little boy alive. Every day, since November 29th, 2005, we've been eternally thankful for every day with that little boy.

November 26th, 2003 - baby Chase arrives (finally)

December 25th, 2005 - 2 year old Chase is out of the hospital and is happy and healthy

 

I am grateful for the doctors and nurses at Sanford Children's Hospital.  Doctor Parag Kumar had enough faith in us to let Chase become in youngest patient in the state to wear an insulin pump at the age of three.  Chase's success with the pump not only changed our lives, it opened the door to more kids in the area being put on insulin pumps.

I'm thankful to my family and friends for their constant support.  This has been a great year of freedom for Chase - sleepovers and lots of play dates.  To have people we can trust with Chase's care is a true blessing.

Ultimately, I'm thankful for the smart, funny, honest, loving, darn cute and amazingly brave kid I write the this blog about.  There are days when I listen to him speak and I think to myself, "I wish I could be more like him."  I'm thankful for having a child that makes me want to bet a better person.

 October 2012 - almost 9 year old Chase and his buddy, Charlie

Happy Thanksgiving to everyone.  Thank you for your love and support.  


I recently updated his photo story (mainly because I got in trouble for having a photo him kissing Leah on the cheek in the old one).