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).

Stars

This post has been bouncing in my brain for over three years.  I've started writing it couple times but I've never been able to finish.  This week told me it's time to write it.

A couple days ago, my mom sent me an email about a family with five children, four of which have juvenile arthritis.  The article described how the family manages their childrens' JA on a daily basis.  At the end of the article, the dad describes how when they are at the Mayo Clinic they "see kids who are in real tough shape”.   He takes comfort in the fact that his children don’t have a worse illness.  My mom wanted me to take comfort in this fact as well.  There are worse things out there.  This I know.

Enter Matthew.

When we became members of our church, there was a 6 year old little boy named Matthew who had been battling Neuroblastoma cancer since he was 3.  Every Sunday, prayers were requested for this adorable little boy's healing.  Some Sundays the news was promising - it looked like the treatments were working.  Oh, what a joy it was to see him going up to hear the childrens' sermon, clutching one of many stuffed animals he owned.  The church rallied around his family.

I once had a conversation with Matthew's mom about our experiences with cancer and diabetes.  I confessed that we told we told Chase that there were worse things in the world to have, like cancer.  She admitted that once, when Matthew was fighting getting a shot, she told him that some kids are diabetic and have to take multiple daily shots.  I found this painfully ironic.

Sadly, after a 5 year battle with cancer, at the age of 8, Matthew lost his battle.  My son is now 8 years old. 

When I was 8, I remember how I loved to go outside, lay on the picnic table and gaze up at the stars.  To this day, I still love to look at the stars.  Life, though, has made me see them differently.  Now, when I look up, I think of the words of Ralph Waldo Emerson, "When it's darkest, men see the stars."

The darkness of cancer has made me see the light in diabetes.  I have my son by my side.  This light I do not take for granted.

 It lights my universe. 

May everyone who is fighting a battle see the stars through the darkness.