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.

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