Saturday, March 23, 2013

The Three-legged Stool

In the fall of 2009, as we were leaving the hospital after Ben's initial diagnosis we were given a list of follow up appointments we need to make over the next couple of weeks including a visit to a dietician, a social worker, a nurse educator and our new endocrinologist. The day of our appointment with our new endocrinologist the office called and explained they needed to cancel our appointment because our new doctor was out of the office sick. We rescheduled for a few days later. Within a few hours we received a second call from the doctor's office and they asked if we would like to see Dr. Wolfsdorf today instead. They explained that Dr. Wolfsdorf was able to cover some of our sick doctor's appointments. I agreed that would be fine, but what I did not realize at the time was how much of a privilege that was. I thought Dr. Wolfsdorf was just a doctor with extra time on his hands. Instead, Dr. Wolfsdorf is the Chief of Endocrinology and the Director of the Diabetes Program at Boston Children's Hospital! And Jeff and I had no idea.

When we arrived at the appointment I was pretty much a wreck. It had only been a couple weeks since Ben was diagnosed and my head was still spinning. When we entered his office he asked us to sit down and he started reviewing all our logs (which at the time were excellent).

Then I remember the doctor telling us, "Managing diabetes is all about the diet."

Hmmm, I was confused. For those first weeks we were continuously told Ben could eat whatever he wanted. We just needed to count carbs and give him insulin.

So I asked Dr. Wolfsdorf, "But Ben has Type 1 diabetes. Is that true about Type 1 too?"

The doctor replied with a stern, "Yes."

The conversation was that quick. Soon we were talking about the mechanics of managing T1, types of insulin (long lasting vs short lasting) and insulin to carb ratios.

Over the past three years, since Ben’s diagnosis, we have been focused on the mechanics of diabetes. And because Ben is a very active boy we have also spent a lot time learning about exercise. It's been a challenge. And we have learned a ton! But I have not forgotten what Dr. Wolfsdorf told us, "It's all about the diet." And I have slowly started thinking about managing T1 as a
three-legged stool with each leg being equally important. The three legs, in my mind, would be the mechanics/insulin, exercise, and diet.

When Ben was first diagnosed we met with a dietician. The dietician suggested should Ben eat more vegetables and protein. She also suggested that we could arrange some peppers and carrots on his plate and make a smiley face.  Apparently, kids love that? Seriously? (Ben is too smart for that.) She also suggested we should put rolled up cold cuts in his lunchbox as his snack.  Again, seriously? (There is zero chance Ben would touch any cold cuts.) Since that appointment with the dietician we have made very few real changes to Ben's diet. We have learned to avoid a handful of foods (bagels, soft pretzels and slushies). But so far all we have really done is learn to count the carbs in Ben's meals.

To be clear, we have tried to reduce the amount of refined and sugary carbs Ben eats and replace them with veggies and protein. But almost every attempt has been a failure. And the blame falls squarely on me. It has always felt like Ben has had to deal with enough and taking away his favorite foods seemed like I was pushing him too far. (At least that it how this guilty T1 mom felt.) But it is now time for me to put on my big girl panties and deal, deal with what likely is our biggest T1 challenge yet, diet.

Now that I have my big girl panties on I need to be honest with myself, I don't eat any better than Ben! How can I expect a 10-year-old to do something I myself am reluctant to do?  Maybe this might just be the time to lead Ben instead of push.  The time has come to stop snacking all day and then ending it with a bottle of red wine and a box Cheez-Its.  So my plan is to change my diet (and Jeff's) first.

At the suggestion of a friend, Jeff and I decided to follow the Whole30 program. Over the past few weeks we have made some extreme adjustments to our daily diet. And as a result we both feel great. All three of our boys have watched us work through this diet and some of our healthy changes have already started to rub off on them. We can no longer keep blueberries and blackberries in our house for more than a few hours!

Now that I have seen some small success with my plan, I feel empowered to focus in on what the boys eat. The first meal I want to fix is breakfast. My goal is to never buy a box of cereal again!

Hopefully, if we keep doing the hard work adjusting our family diet (and I don't let my T1 mom guilt overwhelm me) we will be able to right Ben's three-legged stool. In the end all of us might just be happier and healthier. And I might just need to raise a glass (of red wine of course) and cheers to Dr. Wolfsdorf.

Thursday, March 7, 2013

The Simple Truth

Now here is my secret.  It is very simple.
It is only with one’s heart that one can see clearly.
What is essential is invisible to the eye.
- Antoine de Saint-Exupery, The Little Prince

I don't remember much about 3rd grade except my teacher's name, Mrs. Johnson, and the black top play ground where we played four-square.  But there is one day that will be forever be cemented in my memory.  It was the day Mrs. Johnson was teaching us about government.  During her lecture she told the class, "Puerto Ricans move to the United States to collect welfare."  My little 3rd grade head was in shock.  We had just learned what welfare was and I was pretty certain no Puerto Ricans I knew were collecting it. I also knew in my heart that Mrs. Johnson did not mean this to be a compliment.  She was suggesting that Puerto Ricans were” less than”, undesirable, a burden and unwelcome.  It was clear to my little 3rd grade self that my teacher did not like Puerto Ricans and I was sad, very sad.

I need to share one more thing about myself.  My father is of German Irish decent and my mother is from Puerto Rico.  I have lots and lots of lovely family living in Puerto Rico.  Before this day I was completely unaware that anyone would see me, my mom or anyone in my family as bad, undesirable people.  This was the day that I learned what racism and prejudice was and what it felt like.  And it felt like a punch in the stomach.  My view of my life, my family and my world were forever changed.
Now fast forward this story to yesterday and a phone call from a friend and a story about a conversation which included an unfair (and untrue) assessment of Ben and his diabetes.  Then, Wallop!  I felt like I had been punched in the stomach, again.  Ben and his T1 for the first time had been referred to as being “less than” and undesirable.   And a warning was made that Ben would be a burden.

This unfair assessment of Ben really should not have been such a shock.  Over the past three years I had heard stories about T1 prejudice, but they were only stories.  I had been living in my naive world where those stories were other people’s stories not our story.  I had read about and met people who chose to keep their diagnosis a secret.  And I naively believed we would never choose to live that way.  But now, today, I finally KNOW why people make that choice.

I have spent the last few days trying to decide where to go from here.  Have I made a horrible mistake by sharing too much here on this blog?  Should I just draw the curtains, shut our doors and keep Ben’s T1 a secret?  Or should I bust down doors screaming about the injustice?
Then I remembered my young third grade self.  I remembered the last time I felt that punch in the stomach.  And I remembered how my brave little girl self handled that confusion and pain.

That day, the day Mrs. Johnson made her statement about Puerto Ricans and welfare, after school I told my mom what my teacher had told the class and asked her if it was true.  And my mom, with her Puerto Rican finger waving in the air, told me, "That is not true! You go tell Mrs. Johnson that Puerto Ricans can collect welfare in Puerto Rico!  They do not need to come to the states for that!"  And that is exactly what I did. The next day when Mrs. Johnson started her government lesson I raised my hand.  She called on me and I stood up at my desk and with a classroom full of eyes staring at me I told my teacher she was wrong the day before.  I told her, "Puerto Ricans do not need to come to the United States to collect welfare.  Puerto Ricans can collect welfare in Puerto Rico."  After I made my statement she asked me to sit down and told me we were discussing the congress today.  But I was satisfied because I knew I had spoken the truth (and I was right).

Can I do that again?  I hope I can be that brave again and let the simple truth speak for itself.  Ben is a young boy who faces more challenges in one single day than most people can imagine.  And he faces each challenge with complete grace.  Ben is not “less than”.  He is not weak or a burden.  Ben is “more than”!  He is stronger than anyone I know.

But this time there is no classroom I can raise my hand in and make the clear statement, "You are wrong.  Ben can do anything!"  So for now, maybe all we can really do is to just let Ben prove them all wrong.  And in my heart, I know he can and he will.