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.