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.

Catharsis

There is a saying, "Fake it until you make it."  For nearly 7 years, I've been faking it.  Faking that I know what I'm doing.  Faking that I'm not terrified, frustrated, angry, and downright exhausted.  I realized this a month ago when I let go of 7 years of pain, frustration, anger, and fear.  It all came out in sobs.  Heaping and heaping sobs. 

Gary isn't a therapist, but he plays one in my life.  I let it out - for about 2 hours (he's a patient man).  It was cathartic and long overdue.  Diabetes has changed who I am, and I don't like it.  I miss the old Susan.  She was laid back and relaxed.  And she slept really well. 

On the night of my catharsis, Gary confessed that he cried every night for a year after Chase was diagnosed.  I never knew that.  That made me cry all the more.  We've both had to be strong in front of Chase and strong for each other since diabetes moved in.

I've heard diabetes referred to as an unwanted house guest.  You have to cater to its needs and take care of it, all while trying to carve out a normal life.  You take it with on vacation when you'd rather leave it at home.  You deal with its needs while you try to calm a colicky baby.  You feed it when you are trying to feed your family.  You give it attention when it is screaming at you, when all the while, you'd rather ignore it and read Pinkalicious! for the 1000th time to your daughter.  It's there and quiet frankly, it's the house guest from hell.

My anger with this disease lately is that it is wearing on my child.  I've seen a change in his personality.  He, too, was once laid back and relaxed.  And happy.  Lately, he's been angry, moody, and quiet.  After a few sessions with his school counselor, I'm starting to see some improvement in his mood.  He confessed that he hates having diabetes and being different from the other kids.  His catharsis seems to have helped him.  He is starting to come back to me.

Throughout my life, I've never heard what I wanted to hear.  It's always been what I needed to hear.  That was present yesterday in church when Pastor Dale told us that we need to "Adapt to the Present".  Those words came at the right time.  It is something I need to teach my child and myself.  Together, we will bend, but we will not break.

Back to School - 5 Lessons Learned

Year 4 has begun.  It's back to school time again.  Just like Chase, we are learning, too.  Every year I ask Chase to do his best and that is my goal for this year - try much better to manage his diabetes in the classroom. 

 

Take last year, for example.  The school district revamped their lunch menu and, as a parent, I saw it as a very positive improvement (much healthier lunches).  But, as a child, Chase was not impressed.  So not impressed that some days all he had was milk and an apple.  Lesson #1 - this year we will make sure to look at the menu ahead of time and mark the days for cold lunch. 

 

The days circled are the days I need to make cold lunch.  Oh, joy.  How many peanut butter and jelly sandwiches can I feed him until the school's chili sounds appealing?

 

Last year we gave Chase the freedom to count and enter his carbs at lunch himself.  For most of the year, he did great (carb counting is easy if you are just drinking milk and eating an apple).  The last two weeks of school, though, not so much.  He'd had it with the questions the kids were asking about his pump and he just stopped entering carbs.  Unfortunately, we didn't realize this until he had a blood sugar of well over 400 at supper.  A quick look into the pump's data history revealed no data in there for lunch.  Lessons #2  & 3 - verify lunch is under control (complacency is not an acceptable parenting skill) and go into Chase's class and give a presentation on diabetes (gently tell the kids to leave your child the heck alone).

My main goal for this school year was to make sure Chase's teacher was informed that she was going to have a diabetic student in her classroom.  His first grade teacher learned about his condition literally the day before school.  I'd like to say it was different for the 2nd grade, but it was the same situation.  Fool me once, shame on you.  Fool me twice, shame on me.  Lesson #4 - no more fooling around -  this year his teacher knew ahead of time and a 504 plan was in place before Chase walked through the doors.

And lesson #5 - sending your non-diabetic child off to kindergarten is surprisingly hard.  Harder than you can imagine.  I'm excited to see what lessons will be learned from Leah's school days.

With 2 days under our belt, we are off to a good start.  Chase is doing his best.  Leah, too.  I hope I'm on my way as well.

It's a Mystery. Plain and Simple.

Chase and Murphy - 2004

One of our favorite movies is Shakespear In Love.  It's romantic, historic, and pretty darn funny.  It also has one of my favorite movie quotes:

Philip Henslowe: Mr. Fennyman, allow me to explain about the theatre business. The natural condition is one of insurmountable obstacles on the road to imminent disaster.

Hugh Fennyman: So what do we do?

Philip Henslowe: Nothing. Strangely enough, it all turns out well.

Hugh Fennyman: How?

Philip Henslowe: I don't know. It's a mystery.

When faced with insurmountable obstacles in our path Gary and I tend to remind each other that life is a mystery.  If we are lucky, it will all turn out well.


There are so many mysteries in our lives.  The major one is what causes type 1?  If we know what causes it, we can hopefully cure it.  This has been weighing on my mind lately after reading a few posts from two other moms of diabetics.  One is Hallie's post on encountering a couple that blamed their cat for their daughter's diabetes.  Yes, their cat.  Read about it here at the Princess and the Pump.  How she kept her cool is beyond me. 

And then there was Lisa, who posted about how she and her son "shared a few tears while he told me how much he wished he didn't have to have diabetes, and how he wished there was a cure. And this is why I love this kid: we were sitting there, hugging, tears on our cheeks... and he grabbed my face and said, 'Maybe it will happen someday. Wouldn't it be cool if Tutti Frutti was the cure?'".

Chase loves Tutti Frutti.  I read the post to him and he, too, felt that cure would be awesome.  The comments Lisa received were heart warming, supportive and sweet.  Except for one.  This one:  "Tutti frutti is what causes this shit. and there is a cure. get off the carbs."  Lisa deleted the comment but told me about it and asked me how I would have responded.

How would I have responded?  Let's just say it wouldn't have been pretty.  How type 1 occurs is a mystery.  Plain and simple.  There is NO cure.  Plain and simple.  It isn't caused by cats or carbs.  And you know what?  Words hurt.  Even if they aren't directed at me.

When I was pregnant with Chase I read an article that said breastfeeding at least six months has preventative benefits for kids developing type 1.  Having it in our family I made note and Chase was breastfed until he was 10 months.  The article also said not to introduce solid foods until at least 6 months to help prevent type 1.  As a result, I didn't let that kid eat anything solid until he was 6 months.  Guess what?  He developed freak'n diabetes anyway.  I was proactive.  I did was I was suppose to.  I was a good mom.  Okay, we had a cat at the time, but still, I did my part.

A year ago, Hallie had written that she would crawl across broken glass for a cure.  I can't think of a better way to describe what we, as mothers, would do for our children.  When others insinuate that we had a major role in their developing type 1, we get angry.  We get hurt.  We get tired of explaining the difference between type 1 and type 2. 

It's a mystery.  Plain and simple.  We are waiting to see how it all plays out.  We are hoping for the best.  I'm going to take Chase to Tutti Fruttiand let him down a bowl of frozen yogurt covered in gummi worms, Fruity Pebbles, and Skittles to beat the heat.  And I might just let him get another cat and pet it until it goes bald (okay, no I won't - no more cats for us).

A Picture For A Loss Of Words

December 15, 1922 - "J. L." age 3 yrs. weight 15 lbs.  February 15, 1923 - weight 29 lbs. (Photos courtesy of Eli Lilly and Company Archives)

There are times when I'm actually at loss for words to write about diabetes.  This is either due to 1.) wondering if people are tired of hearing about it, 2.) not wanting to give it any more credit for invading our lives, and 3.) not knowing what to say that hasn't been said in the last 6 1/2 years.

Then I came across this photo.  A photo I saw 5 years ago.  One that I never forgot.

About the time this photo was taken, my great-grandfather was dying from type 1.  Insulin had just been invented in Canada and was on its way to the US.  Given a few extra months time, he might have survived.

Prior to the invention of insulin, there was no effective treatment for type 1 aside from a semi-starvation diet.  Diabetic children and adults rarely lived a year after diagnosis. 

Amazing advancements in the treatment have been made in the last 90 years.  Multiple forms of insulin are on the market, needles have gotten smaller, pumps are standard, continuous glucose monitors are here, test strips require less blood, etc. 

Some days it's just not good enough for me.  I never got to know my great-grandfather the way my kids know my grandpa.  Diabetes took that away.  It took him from his wife and children.  It makes me mad. 

I don't want Chase and my dad to go another 90 years for that miracle.  Most days I'm thankful for how far we've come.  Today it's just not far enough.

Guilt Trips

Guilt:  (noun) a feeling of responsibility or remorse for some offense, crime, wrong, etc., whether real or imagined.

I wonder if I will ever be able to look at this picture and not feel guilt?  Will I see it as Chase's 2nd birthday or will I always see it as 3 days before our world fell out from beneath us?  Will I still want to travel back in time and shake myself into seeing what was happening to my son?  Will the guilt ever go away?

It's there.  All the time.  For so many reasons:

1.  We didn't recognize the symptoms & as a result, Chase was hospitalized for 4 days.

2.  Genetics.

3.  I'm envious of parents that can let their kids eat anything.  I despise envy.

4.  When it's just me and Leah, I let her eat whatever she wants.  We don't tell Chase.

5.  I feel a need to write to get my feelings out.  I should be playing with my kids right now.

6.  We could be better at managing his diabetes if we tried harder.  Did more research.  Had more money.

7.  I want to scream at people who still confuse type 1 and type 2.  Literally scream.

8.  I know we are fortunate it's only diabetes.  When I see Mathew's mom in church without her one and only son who she lost to cancer, I know. I know.

9.  Chase gets special attention.  Special treatment.  Leah doesn't.

10.  I don't do enough to raise money for a cure.

There is some good to my guilt.  I've learned a lot these past years, and as a result, I can say, guilt free:

1.  I do not take my children's health for granted.

2.  We try to live in the here and now & enjoy our time together.

3.  We do what we can, when we can, to bring awareness.

4.  Eating healthy is a priority.

5.  Exercising is a priority.

The major reason I write this blog is to remind everyone not to take a single moment for granted.  I don't want any one's pity.  I don't want any one's sympathy.  I want your empathy.

 I want you to hug your children more than they'd like.  I want you to tell them that you love them every chance you get.  It's not a cure for diabetes.  It's not a cure for guilt, but if I can get at least one person to hug their kid tonight & thank God they are healthy, I will take one less guilt trip.