Brothers

One evening in July when we were at the CWD conference, I asked Garren and Cole how they were enjoying their sessions.  I asked questions about how their sessions worked and what they talked about.  They explained to me that often they get separated from the kids with T1 so they can discuss issues specific to being a sibling of a kid with T1.  I continued my probe and asked what kinds of things did the kids bring up.  Cole said a lot of the kids mentioned that their parents spend more time taking care of their T1 brother or sister and less time on them.  hmmm ... interesting 

So I asked Cole, "How do you feel about that?  Do you think we spend more time with Ben?"

Both Garren and Cole replied, "Yes."

I then asked,  "Does that bother you?"

Cole quickly responded, "No!  Because I know that is what you have to do."

Seriously, my boys are pretty awesome!  And I think its time to devote a post to Garren and Cole and let the whole world know (or at least the handful of people who read my blog) how truly great these two T1 siblings really are.

To start, Garren is our oldest.  He has been the light of this family since he was born.  He has a talent for being able to chat as easily with an adult as with a toddler.  I marvel at how self-assured he is.  In social settings I tend to be wallflower, but not Garren!  Within a few minutes he will know the names of everyone in the room and he will even have several new cell phone numbers to text to.

Cole is a thinker.  He never stops asking questions.  When he was young he would pepper me with questions.  He would want to know how the seasons worked, how far was it to China, and why was the sky blue.  Once after a long day of questions I had to tell him I just did not know all the answers!  And Cole, the ever-clever toddler, responds, "Mommy how could that be true, you went to college twice?” To this day he is still asking questions (thankfully, I am no longer his only source for the answers.)

Now to be clear, my boys are not angels.  At times I find myself refereeing their arguments.  I often refer to them as the "bicker brothers."  Believe me, a three-hour car ride to visit their grandmother in Maine can be extremely painful.

But at the same time I know how much they do love each other.  They have proved it to both Jeff and me time and time again.  Since the day we came home from the hospital after Ben was diagnosed these two brothers have been nothing but supportive.  They have made sacrifices without complaint.  They have learned to carb count.  They have taken care of Ben through both highs and lows.  They have even worked to raise money for JDRF in the hope of finding a cure!

I have often been teased that I love Ben the most.  Admittedly, since Ben’s diagnosis Jeff and I have definitely spent more time taking care of Ben and worrying about his diabetes.  We have spent hours and days working on raising money for JDRF.  And I have spent hours writing stories for this blog.  But in no way does that mean I love Ben the most.  How could I when Ben has two of the greatest brothers, Garren and Cole!

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)!

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.

What it means to be a T1 family

During the summer of 2010 Ben was still in his honeymoon.  He was still requiring very little insulin and his daily injections were down to just two shots a day.  Even though I secretly hoped that Ben had experienced a diabetic miracle and was actually cured, my logical brain new better.  I understood that his honeymoon would likely come to a quick dramatic end and I wanted to be well prepared this time.  I became obsessed with learning as much as I could about Type 1, how the pancreas worked, and how I could best support Ben.  I filled my Amazon.com shopping cart with every book that had pancreas in the title.  I also searched the Internet for blogs and support groups.  I eventually stumbled upon the Children With Diabetes (CWD) Web site.

CWD is a Web site that was started by a father of a Type 1 child who was searching for support in the same way I was.  Over the years the Web site grew into a substantial support group.  The support group then started an annual conference.  The annual conference turned into multiple conferences and then went international.  Apparently, I was not the only confused, desperate and isolated parent, there seemed to be a whole wide world of us.  I found there was a conference in Orlando over the 4^th of July week.  With a lot of whining (which I am expert at) I was able to convince Jeff that we should take the whole family to the conference.  This was an expensive proposition but my arguments had been convincing enough that Jeff agreed we would dig and find the money.

Jeff works at a private boy’s school.  The school has a special fund set aside that they use to award summer travel grants to the teachers and faculty.  Jeff submitted and application for a travel grant to fund our trip to the CWD conference, and it was approved!  (Thank you, Fenn, for your generosity and support.)  The grant was a huge gift.  We had plenty to worry about, so it was a pleasant relief to at least not worry about the cost of the trip.

We registered for the CWD conference in April.  As part of the registration process we were added to a CWD mailgroup.  Parents posted all sorts of questions to the group.  People asked about how to handle airport security; were there refrigerators in the rooms to store insulin; and tons of questions about how to handle the heat and sun at the amusement parks.  The questions about airport security and the flights I understood.  I had already worried about that!  The questions about storing insulin I understood.  I had already worried about that too!  But I had not previously been concerned about sun and heat.  I had not read anything about this in all my Amazon.com books.  I had not seen any references to that on the Internet either.  But I kept reading the same question.  There were lengthy discussions about how to get guest-assistance passes at the theme parks.  These passes allow the guests to avoid standing in long hot lines along with other accommodations.  Because I am such an (admittedly arrogant) skeptic I was convinced these parents were being high-maintenance and over-protective.  I was beginning to question whether this conference was going to be a good thing for our family.  But I had whined so much about how we needed to go I was not now willing to tell Jeff maybe I was wrong and I had changed my mind.

After school was done in June, we packed our suitcases, extra bags of food, and a backpack full of vials of insulin, syringes, glucose meter (pricker), test strips and lancets (including back ups of our back ups).  Luckily, we had no troubles getting through security.  Our flight was uneventful and we made it to our hotel in Orlando without any of the drama I had worried about back in November when I cancelled our Thanksgiving trip.

The conference started the following day with a motivational speech by Jay Hewitt (an Ironman triathlete with Type 1 diabetes.)  The boys attended groups designed specifically for their ages, including Ben along with his pricker.  We were assured that Ben would be well taken care of and we could attend our sessions worry free.  So Jeff and I left the boys (though not completely worry free) and attended as many sessions as we could.  We split up in the hope that we could maximize the information we could cover.  Jeff and I were overwhelmed.  I went from a session on pump technology to a session about exercise physiology to a session about the emotional development of a child with Type 1.

At noon we all meet up again for lunch.  CWD presented lunch buffet style.  Everything was labeled with its serving size and carb counts.  We did not have to spend 20 minutes before we could eat shifting through books and reading nutrition labels trying to figure out how many carbs Ben was going to eat.  We (almost) felt normal again.  Once we entered the dining hall to sit and eat, we saw hundreds of people, many of which were pricking their fingers, talking about carb counts, taking insulin injects or entering numbers into pumps.  Now we really felt normal.

We spent three days at the hotel attending the conference.  Our brains were overloaded.  We had learned a lot and we had been inspired, but now it was time for some family fun.  The boys decided they wanted to go to Universal Studios.  Garren and Cole are roller coaster fanatics.  And Ben was equally excited to visit the new Harry Potter World.

When we arrived at the park, Garren, Cole and I immediately headed toward the Hollywood Rip Ride Rocket.  Jeff and Ben had no interest in riding any roller coasters, so they waited outside for us.  I soon discovered that Jeff and Ben had made the wise choice.  I have always loved roller coasters but I had not ridden on one of the new super-fast roller coasters.  I was apprehensive, but at the time I felt that a parent should accompany the boys.  I quickly regretted that decision as my brain was knocked around my skull at a very high speed.  I am quite certain I got a concussion on that roller coaster!  After the ride was over and I was able to think again, I decided the boys were on their own for the rest of the day.  I figured if anything horrible were to happen to the boys on a roller coaster  there would be no way for me to protect them while I was being whipped around at an hypersonic rate of speed.  My plan for the rest of the day was to stand outside the ride and pray for the boys’ safety.

After the ride we meet up with Jeff and Ben again and we were all smiles of excitement (I was just happy I had survived), but we were not greeted with the same enthusiasm.  I believe Jeff and Ben waited no more then 30 minutes for us. The line went fairly quickly because it was still early in the day.   Jeff was hot and bored from the wait, but Ben seemed even more grumpy then Jeff.  I sensed Ben was off.  So before we walked to the next ride we stopped to check Ben’s blood sugar.  Ben was very, very angry now and he did not want us to touch him.  Jeff had to hold him while I pricked his finger.  The meter did its slow count down … 5, 4, 3, 2, 1 … 23!  Oh God!  We had never seen a number that low.  I was certain I was about to throw up.  I am not sure if the nausea was from the head-banging rollercoaster ride or from the shock of such a low glucose reading! We quickly gave Ben some new glucose tabs we had picked up at the conference.  And we waited.  Soon Ben was no longer angry but had become weepy and sad.  I held him and we checked him again … 5, 4, 3, 2, 1 … 30!  Oh God!   Here we go again.  It took an hour to get Ben’s numbers back in line.  During that time, both Jeff and I were quietly panicking.  Garren and Cole were equally concerned.  But we all tried to remain as calm as possible because no one wanted to upset Ben anymore then he already was.  Once Ben’s meter finally read a number back in range, we all sighed in relief.

Jeff and I had not anticipated such a quick dramatic drop in Ben’s blood sugar.  He had eaten all his necessary carbs for breakfast.  Every episode of low blood sugar is followed by a guessing game.  Jeff suggests one possible cause, and I follow with another.  Sometimes this game ends with no answers and shrug of the shoulders.  But this time Jeff and I agreed that the cause was likely the sun and heat.  Seems the CWD parents were on to something. 

After everyone felt better we continued on with our day.  We all kept a very close eye on Ben.  It was a long hot day.  Garren and Cole rode every crazy rollercoaster they could (by themselves).  Ben attempted to walk through the new Harry Potter World, but it was so overcrowded that we ended up leaving without being able to ride a single ride.  Ben was heart broken.  By the end of the day, Ben was exhausted, disappointed and miserable.  On our way out of the park we stumbled across some arcade games.  The boys begged us for some extra money so they could play one of the games.  They convinced Ben to play too.  The game was one that you sprayed water guns on a target which pushed your horse along a track in attempt to win the horse race.  The three boys lined up, they were ready to race and we cheered them on.

(I took very few photos that day at the park, but I did take some of this race.  I have included them here.)

Garren and Cole were fighting back and forth for first place.  But as the race was ending Ben quickly caught up and won.  Ben won a pink bunny rabbit and finally he was smiling and laughing!

Later that evening, I asked Garren and Cole if they had let Ben win.  Garren and Cole both admitted they had.  I then asked if they had agreed to do that before the race.  And they both said, “No.”  I smiled.  Without a suggestion from Jeff or me and without a word spoken between them they both decided that they wanted Ben to win.  They wanted Ben to be happy.  My heart was full.  I hope when Ben reads this story he isn’t disappointed.  Instead I hope Ben realizes he won so much more then a race and a stuffed animal that day.

We learned a lot this week in Florida.  We had learned about many technical aspects about diabetes.  We learned how to travel with diabetes.  But more importantly we learned what it means to be a T1 parent.  We learned that there is NO such thing as a high-maintenance, over-protective T1 parent!  You can listen to doctors and read books but they can not tell you everything you need to know.  There are all sorts of new technologies and fast acting insulins that allow us to more precisely manage glucose levels.   But there are so many outside factors that affect your T1 child’s blood sugar; how much exercise they had the day before, how much sleep they got over night, how excited they are, how nervous they are, how much exercise they are getting today … and we can now add to the list … how hot it is outside!  Judging the potential affects of these factors become the job of mom and dad.  As a T1 parent you must always remain vigilant.  Only with time and experience can you learn what works for your T1 child.

We also learned T1 siblings have their own struggles.  They watch their sibling test their blood sugar and count carbs.  They watch their sibling suffer low and high blood sugars.  They watch their parents stress and worry.  We learned that Garren and Cole are just as scared as we are when Ben is struggling with a low.  We learned what it means to be T1 brother.  And Ben is lucky to have two of the best!