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.