Tuesday, July 31, 2012

Our Crystal Bowersox Story

As my short bio notes, not only am I a wife, a mother, and a pancreas, I am also a lover of reality television.  I know what you must be thinking but … I can’t help myself.  I have watched every season of Survivor.  I never miss an Amazing Race, So You Think You Can Dance, or my all time favorite, America Idol.

The year that Ben was diagnosed was Season 9 of American Idol.  This was the season of Crystal Bowersox and Lee Dewyze.  During the audition rounds Crystal Bowersox stood out as my favorite.  I loved her voice, her dreadlocks, and her cool demeanor.  She reminded me of how cool I thought I was in college (but most certainly was not!)  Early in the season Crystal had been hospitalized and almost had to leave the competition.  At the time I was not aware that she had suffered complications from her Type 1 diabetes.  As the season progressed we became more aware of her struggles.  And I slowly became a super fan.

Now if you are going to be a super fan you also have to be a super voter.  When it came down to the finals, Crystal versus Lee, I got the phone and started my hour of voting and redialing.  I figured I had personally saved both David Cook and Kris Allen (I am still waiting for my thank you cards) and now it was time for me to save Crystal.  Sadly, my super voting did not help, and Crystal lost.  My boys watched the finale with me and witnessed my disappointment.

So in the summer of 2011, when we learned that Crystal Bowersox was going to be at the Children with Diabetes conference we were all thrilled! (Admittedly, I was the most excited.)

At the conference during the family banquet, Crystal played a few songs (and yes, she sounded even better in person).  Then after her mini-concert she encouraged the kids to come closer to the stage and she would answer any of their questions.  The kids mostly asked questions about her diabetes.  “When were you first diagnosed?”  “What type of pump do you use?”

As Crystal was talking to the kids, Jeff and I were standing outside of the circle of kids with the rest of the adults.  Then we hear Crystal say, “Young boy in the back with the Bruin’s hat, do you have a question?”  Jeff and I looked at each other and I said, “Oh God, that’s Ben!  What is he going to ask?”

Ben stands up and asks, “What did it feel like to lose to Lee Dewyze?”

I looked at Jeff again, “Seriously?! Did he just ask that?”

Crystal chuckled, and explained that she always felt like a winner.  And the night of the finale after Lee’s name was announced she felt no different. That night as the stage was showered with confetti she focused on one piece of paper as it fell and she grabbed it when it was within her reach and she saved it.  She still has that piece of confetti today.

I thought that was a beautiful answer.

She ended her time with kids explaining that during her American Idol experience she mistakenly made the competition her number 1 priority and ignored her diabetes.  And because she had done that she got very ill and ended up in the hospital.  She had almost lost everything.  She explained that if you take care of your diabetes first, and always first, then you can do anything you want.

This summer Crystal Bowersox returned to the CWD conference.  She again performed during the family banquet.  And again after her set she asked the kids to come forward and she would answer their questions.  Ben again rushed to the stage.  As the rest of the kids settled in Crystal said, “Last year at this conference I took questions and I remember one boy who asked my favorite question.  He asked what it felt like to lose to Lee Dewyze.

I practically fell off my chair laughing!  She remembered Ben.

She then asked if the boy was here again.  But Ben refused to stand up.  Later I asked why he didn’t and he explained that he was embarrassed and thought maybe she was upset.

The following day, Crystal Bowersox was at the exhibition hall working at the One Touch booth.  If you stood in line you could get your picture taken with her.  So Ben and I stood in line, but as we approached the front of the line Ben got nervous and walked away.  Because I am a super fan, I stayed in line.  Crystal had noticed that Ben had walked away and I explained it would just be me taking the picture.  I explained Ben was the boy that she had mentioned the night before.  He had asked the question about Lee Dewyze and he was embarrassed.  She asked me if he was still here in the hall.  Ben was standing nearby next to Jeff and I pointed him out to her.  She then left the booth and walked right over to Ben and gave him a big hug.  They chatted a couple minutes. She then returned to the booth and I smiled and we took this picture:

(And yes, I am overdressed for a summer day in Florida … but the hotel conference center was freezing!)

Later I asked Jeff and Ben what she had said to them.  Jeff said she wanted Ben to know she was not at all upset and that in fact that was one of her favorite questions she has ever been asked.  To this day I am not sure why she liked Ben’s question so much.  I assume it might be because Ben was brave enough to ask the question everyone really wants to ask, but won’t.  It was an honest question asked in a way only a child could ask.

In the end I was touched by how gracious she was to Ben.  She gave me hope.  Hope that no matter how much you struggle with your diabetes as you grow up you can still become a lovely, kind and successful adult.  She really is as cool as I had imagined (even while rocking an insulin pump)!

Tuesday, July 24, 2012

Please don't ask me ...

Since I first started this blog, Jeff has questioned the title I have chosen.  He wondered why I called it “Ranting T1 Mom” when I continue to tell stories that make him cry.  He suggested that “ranting” implied a certain amount of bitterness and snarkiness which he has not yet read in my stories.  My intention has just been to tell our honest story, to tell the truth.  And in the interest of always telling the truth, the time has finally come to post a proper rant!

It has now been close to three years since Ben’s diagnosis.  We have been living with T1 for awhile now, so when I bump into people around town I am often asked, “How is Ben doing?  Do you have his diabetes under control?”

I never know exactly how to answer that question.  I assume the response folks are hoping for is:  “We are doing great.  He never has a blood glucose reading out of range.  Ben’s diabetes is no longer a problem!”

But that wouldn’t be the truth!  Sometimes, like Jack Nicholson in a “Few Good Men” I would love to respond, “You can’t handle the truth!”  (I warned you this would be a snarky rant!)  The problem with the truth is that it takes more then a quick conversation at the checkout counter at the super market to explain.  So usually I just respond, “Ben is doing well.”

If I had the time (and the patience) here is what I would like to explain …

Jeff, Ben and I continue to try to “control” Ben’s diabetes. (Imagine me saying control with air quotes.)  We check his blood sugar close to 10 times day, count every carb he eats, and continuously give him insulin.  And some days this works well and others not so well.  Any real success we see is temporary and short lived.  We can go a few days without seeing any sky-high glucose numbers.  Jeff and I will even smack each other a few high fives!  But then one day later we will be scratching our heads trying to explain a glucose reading of 345. This is the nature of this disease.  Jeff, Ben and I armed with a syringe and man-made insulin can NOT replace God’s perfectly designed pancreas!  Everyday we can try.  And that is what we do, try.

And to continue with my rant, there is another reason I hate this question.  (Though, you might consider me super sensitive.)   But part of the problem is that the question implies that Jeff and I should have Ben’s diabetes under control by now.  And that then implies if we don’t have it under control, we are failing.

To be perfectly clear, Jeff and I don’t consider ourselves failures!  Managing life with Type 1 diabetes is a daily struggle.  There are no simple answers.  All you can do is to remain constantly vigilant and never ever give up.

So the next time I am asked the question, I may just answer, “No, Nope, Nunca, Never! … Not until there is a cure!”  If that is not the snarky, cynical response you are looking for, then please don’t ask me, “Do you have Ben’s diabetes under control?”

Friday, July 13, 2012

The Power of Empathy

Back in October of 2009, when we first returned home from the hospital after Ben's diagnosis we slowly began telling our family and friends what had happened.  The responses we received from our news were always filled with sympathy but often with not much understanding of Type 1 diabetes.  (I promise I am not judging because I knew nothing about Type 1 diabetes just a week earlier.)

One of the first people I told was my sons' soccer coach.  The week we were in the hospital my parents took care of Ben's brothers, Garren and Cole.  They drove them to school and then brought them to their practices.  When I saw my sons' coach for the first time in a week I felt the need to explain where I had been.  I told her that Ben had been diagnosed with Type 1 diabetes and we had been in the hospital with him.  Her response (which actually is a very popular one) was "Don't worry, with all the advanced technologies they can do so much more for him now." I nodded my head and replied "That's true." But in my head I was screaming, "Are you out of your mind?!  Don't worry?!"

It's often very difficult for me to hide my emotions.  Just by looking at my face it can be pretty obvious what I am thinking.  And much to Jeff's disgust, I often say things that he (and I) wishes I could take back.  But I do promise I have an internal editor! It is a hard working (though imperfect) editor, trying to keep all my snarky, sarcastic comments from leaving my lips.  And my editor was working full throttle those first few weeks after we returned home.

A couple days after Ben returned to school, I went into his classroom to read a book to his classmates explaining why he had been in the hospital and why he now needs to eat special snacks and visit the school nurse several times a day.  While I was there I ran into another mother.  She asked me questions about Ben so I explained his diagnosis.  Her response was, "Oh, that's tough.  A friend of mine has a daughter who is allergic to eggs."  Thankfully my internal editor was working and I responded, "That is sad," because inside my head I was yelling, "Eggs?!  Seriously?!" I do want to note that I do truly feel badly for this little girl.  I do love a hard boiled egg and birthday cake!  And I am thankful I am not allergic.  But it really is NOT the same thing.

A few weeks later while I was at a hockey rink I ran into another mother who also has a T1 son.  They had been living with T1 for several years.  She asked me about Ben and how we were doing.  At this point, I think my internal editor had been overwhelmed because my response was "This is really hard and it sucks!"  I remember very clearly she paused for a moment and then said, "I know. I am sorry."  Like a balloon had just popped, I felt all my stress slowly releasing from my body.  I then asked, "Really?  Everyone else seems to think we should be OK?" But she responded, "No, it's not OK."

Up until then I had received a lot of sympathy, a lot of sorrys, a lot of encouraging "it will be OKs".  (All of which I was grateful for.) But this mother had looked me in the eye and I knew she understood.  It felt as if she shared my pain and in doing so I felt the burden of it lifted.  She had just given me the gift of empathy.  It felt good.  I then quickly realized the one most in need of this gift was not me, it was Ben!  But not everyone can give this gift.  I understand what it means to have a child with T1, but I don't understand what it means to live with it.  Since I could not give Ben this gift, I became determined to find it for him.

Since it is the 21st century, I started my search on the internet.  It took about 30 minutes until I stumbled upon the Children with Diabetes website.  There I saw pictures of smiling kids and learned about their annual conferences.  The conferences are specifically designed to bring together families with T1 children.  I knew we had to go.

Last summer at the conference Ben made a friend, Andrew from Texas who also has T1.   One evening they were playing together at the pool.  They swam and laughed in the pool for hours.  Eventually, Jeff and I decided we should check Ben's blood sugar.  We had to do quite a bit of negotiating to get him out of the pool to take a break.  Eventually, we got him out and he sat in a lounge chair long enough for us to check him.  We pricked his finger ... 5, 4, 3, 2, 1 ... The meter read 55.  Indeed he was low.  We pulled out a juice box and told him to drink it and then wait the dreaded 15 minutes for his blood sugar to come back up.  He was just having so much fun, so this was just about the worst news Ben could have received.  He sat in the chair with his shoulders slumped sipping his juice box.  Soon Andrew swam over and looked at Ben and asked, "Are you low?"  Ben pouted a "Yes."  Andrew looked up at him, smiled, and then said, "OK."  Then I saw the stress and sadness leave Ben's face and his slumped shoulders.  He knew Andrew understood. Andrew understood in a way that Jeff, Garren, Cole and I never could.  Andrew knew what it felt like to be low.  Andrew knew what it felt like to sit by yourself and watch other people have fun while you have to wait.  And Andrew with a simple look let Ben know he would wait too.  Ben had just received the gift ... the gift of empathy!

Here is a picture of Ben and Andrew playing in pool that evening.

We have now returned from our third Friends for Life conference.  We meet up with Andrew's family again this year.  And we made new friends.  Again all of us, Jeff and I as T1 parents, Garren and Cole as T1 siblings, and Ben himself, received the gift of empathy.  And hopefully, in return, we were able to give the gift to another family.