Yesterday

Yesterday started at 3:00 am with the alarm
Set to the country music station
Not my favorite
Drag myself to Ben’s room
Switch on light
Search for Ben’s hand under the covers
There
Prick

3:10 am … 87

That’s not high enough
Won’t be able to sleep
Juice box
Stick straw between Ben’s lips
Squeeze box
Hope he swallows
Success
Shake box
Oops, I gave him too much
Going to be high in the morning
Will worry about it then
Back to bed

8:30 am … 221

Yep, too much juice last night
But OK
Going to baseball practice
Make carrot cake paleo pancakes
Not great
Won’t make those again
Pack up baseball gear
Pack up d-bag
Head to ball field
Once parked
Check again

9:22 am … 222

Ben declares
“That’s a lot of 2s”
Want to avoid another scary low
3rd inning of 1st game
Ben was 39!
Set temp basal
90% for 2 hours

Off to practice
Sit on bench in dug out
Watching
Watching for any sign Ben might be low
Having fun
All smiles
No signs

Check watch
Need to leave to pick up older brother
At soccer practice across town
Interrupt Ben’s practice
Pull Laffy Taffy out of my pocket
Throw it at Ben
Tell him to eat
And then check himself
Warn I need to leave to get brother

Coach laughs
“Your mother gives you candy?”
Yep
Membership has its privileges
Being part of the exclusive T1 club
Comes with a mom who throws candy at you

10:00 am … 195

Race through town to get brother
Praying nothing happens while I am away
Return to ball field with older brother
Having avoided any cops
And traffic tickets

Practice over
Time to head home to eat lunch
Then get brother to another ball field
But before head home
Check again

11:36 … 106

So far so good

Lunch
Phone rings
Coach of Phillies
Needs another player
Can Ben play for his team this afternoon?
Ben jumps up down and chants “Yes, Yes”
Be at field at 2:30
Game at 3:00

After lunch, drop brother off for his game
Drive to town center for Ben’s game
Before Ben runs off for hitting practice
Check

2:00 … 133

Not high enough
Still scared of the 39 from 1st game
Ben drinks juice box
Set another temp basal
80% for 4 hours

Game starts
Ben very, very happy
3rd inning need to leave again to get brother
Now need to drive him to soccer game
Ask friend/neighbor to watch Ben while I am away
Warn if he cries or get’s angry
Likely low
Give him juice and call me
Before leave check one more time

3:20 pm … 76

What?
Too low!
Throw Ben more candy
Sour Patch Kids this time
Ask, “Do you have a Zbar in the bag?”
Nope, left in the car
Sprint to parking lot
Find Zbar in back seat
Sprint back to dugout
Throw Ben Zbar this time
Eat and don’t bolus
Please let Ms. Neighbor know if you feel low
“Ok, Mom”

Run back to car, again
Pick up brother drive across town
Drop off at soccer field
Not actually sure I slowed down
Think brother just jumped out of car
And I speed off
Eventually make it back to Ben’s game

Close game
Ben makes good catch at shortstop for an out
Big smiles
Very proud of himself
Game over
Lose in extra innings
Before we leave field
Check again

5:36 pm … 243

Not great
Probably didn’t need the Sour Patch Kids
But not awful
Give correction bolus

Head home to make dinner
Now both brothers are home
But Jeff gone
School auction night
Cook
Meatballs, 1 cup pasta, salad
Check

7:03 pm … 121

Bolus for 40 carbs
Eat too
Clean kitchen
Finally sit down

Decide to have a glass of wine
Been a long day
Worried
Scared
Of another 39
But no lows
And no super highs
Relax, thinking we did it
But anyone who lives with T1 knows
Diabetes doesn’t like it when you take it for granted

Soon Ben interrupts my glass of wine
“Mom we have a problem
My set was unclipped”
“What?”
“And I don’t know how long”
This is a new problem
Never happened before
Never realized it could even happen!
“We better check your BG”

8:31 pm … 347

Oh no
Wish I didn’t have that glass of wine
Not sure what to do
Have no idea how much insulin he actually got
Pump thinks plenty
Decide to go slow
Still scared of 39
Do a small correction
And decide to keep checking
Ben sits down beside me and we wait

9:00 pm … 445
9:33 pm … 452
10:05 pm … 490
10:47 pm … 384
11:42 pm … 342

Midnight
Ben and I are both asleep on the sofa
I drag us both upstairs
Ben’s BG is finally coming down
No emergency room tonight
We both fall asleep in my bed

Jeff comes home from auction
Wakes me up and asks what’s going on
Try to explain but still half asleep
Jeff carries Ben back to his bed
And I fall back to sleep

Suddenly
Wake up
Look at clock, 2:00 am
Run to check Ben

2:14 am … 107

Breathe
Hope that’s not too low
I am NEVER satisfied
Head back to bed
Sleep
Wake at 8:00 am
Find cup of coffee
Check Ben, again

8:30 am … 75

Here we go again
Never sure when one day ends
And the next one begins
Because every moment
Whether awake or asleep

Worried

Step 4 ... Aha!

This is the last of my series of posts on my diet experiment ...

 

For this last post I am going to drop the Whole30 and Paleo diets. Instead I will follow Michelle Obama's lead and focus on the USDA's newly redesigned food plate. 

The big message here is that half the plate is covered with fruits and vegetables with a smaller portion of grains and protein.  Now before my Whole30 diet experiment (OK, I didn't totally drop it yet) when I looked at this plate I naively thought of it as a dinner plate.  I was so wrong.

Which leads me to my 1st Aha! Moment ... This plate should represent your breakfast, lunch and dinner!

A breakfast that consists of a bowl of cereal or an english muffin and coffee is nowhere near close to this plate.  A lunch of mac and cheese or sandwich is again deficient.  By the time you make it to dinner you are already missing a full plate of vegetables (your half plate from breakfast plus your half plate from lunch.)

After my first shopping trip, when Jeff sent me off with my Whole30 shopping list, I returned home with more (and different) vegetables than I have ever bought before.  Here is what my fridge looked like after I put all the groceries away.

Which now leads me to my 2nd Aha! Moment ... The two veggie drawers in a standard refrigerator can NOT hold a week's worth of veggies!  If half of what you eat should be veggies then these drawers should be half of the interior of your frig.  I now realize my pantry to frig ratio is totally out of whack.

After our first week on the diet (covering half our plates with fruits and veggies) I had my 3rd Aha! Moment ... If half of what I eat is going to be fruits and veggies they better be good!

Now this is equally true for the boys.  I started shopping at the local fancy (expensive) farm stand.  The veggies and fruits I brought home were beautiful and delicious.  Soon without even pressing the boys too much they willingly ate the fresh spinach I put on their plates.  And now it has become hard to keep blueberries or blackberries in our house for more than an hour.  As soon as they see them ... They are gone.

Part of the Whole30 plan is to eliminate all sugar from your diet for 30 days.  Again, I don't think this proposition should be too controversial; even Michelle Obama's food plate has no spot for sugar.  But the Whole30 also excludes any artificial sweeteners, which have become a staple in Ben’s T1 diet.  When I first started the diet I thought this would be easy.  I just needed to stop drinking Diet Coke, eating ice cream and finally dump out all the leftover Halloween candy and I would be good.  Now the Whole30 book makes a point of encouraging you to read all food labels looking for sugar and all its sciency nicknames (like dextrose and sucrose) before you purchase anything at the supermarket.

Which not surprisingly leads me to my 4th Aha! Moment ... Sugar is in everything!

I don't think we need Mayor Bloomberg to save us from super sized sodas.  We get it.  (A slurpee was a boatload of sugar in it.)  But what I didn't get ... is there is sugar in so much more than just my soda and dessert.  There is sugar in my salad dressing, my pasta sauce, my crackers, my canned veggies. The list goes on and on.  And once you eliminate everything with sugar in it, you have successfully eliminated almost all processed food.  You are no longer buying anything in box or can.

Which then leads me to my 5th Aha! Moment ... Almost anything with a complicated nutrition label is most likely not actually nutritious! 

Over the past three years since we have been living with T1, we have become experts at reading nutrition labels.  Ben immediately looks for the carb count and also knows to consider what the suggested serving size is.  When Ben was first diagnosed, foods with nutrition labels seemed like safe foods to eat.  If there was a nutrition label then we knew the carb count.  There was no guessing.  And that was comforting.  But today I see all those packaged foods differently.  I no longer even consider them real food.

Mostly, I consider them man made science experiments designed to maximize our desire to buy more of them!  If I were to make mac and cheese it would have pasta, milk, flour and cheese.  I wouldn’t include: thamin mononitrate, riboflavin, sodium phosphate and yellow #5 or #6.  I don’t even know where to get those ingredients (maybe a hardware store or high school science class.)

Now that I have radically reduced the amount of processed food we eat and loaded our plates (all of them, breakfast, lunch and dinner) with whole real food I have reached my 6th Aha! Moment ... If you are going to eat real food you need to cook! 

 

This leads me to my biggest and most dramatic change. In our house, breakfast was always been a self-service meal.  The boys would drag out the milk and then fight over their favorite cereal.  Occasionally, someone would toast an english muffin or ask Jeff to make them an egg.  But for the most part everyone fended for themselves.  Lunchtime was not all that different; the boys would make themselves a PB & J sandwich or make some mac and cheese.  You would think I would at least cook a good dinner, but that would only happen about 50% of the time.  Now my excuse has always been that we are busy.  I work full time, as does Jeff, and the boys are involved in every sport on the planet.  But now that I loaded my frig with veggies and stopped buying processed food I was forced to start cooking, every meal (and that's a lot of cooking.)

Which now leads me to my 7th and final Aha! Moment ... It is OK for your kitchen to be a humongous mess!

 

Once Jeff or I finish cooking breakfast for 5 people the kitchen ends up a mess of dirty frying pans, pots, cutting boards and loads of dishes.  I do work full time and we are all in hurry to leave the house in the morning.  Cooking and then cleaning the kitchen every morning was becoming stressful and difficult to manage.  I was convinced that all good moms kept a tidy house and my kitchen needed to be spotless before I left in the morning.  However, over the last couple of months I have learned to slowly let my clean kitchen standards go ... And it feels good!  Here is what my kitchen looked like just this morning before I left for the office.
 

 

And now today I post this picture proudly.  My kitchen is mess!   And that is OK … because my family ran off to enjoy their day well feed!

 

Step 3 ... Analyze the Data

This post is a continuation of my last two posts ...

Jeff and I successfully completed our 30 day diet experiment and indirectly, the boys had too.  Now I did not force our diet on the boys.  (There certainly would have been a mutiny if I had.) The boys continued to eat toast and cereal for breakfast and school lunches.  However, because I am the main cook in the house, for dinner the boys did eat a slightly modified version of what I had prepared for Jeff and me.  I would add a glass of milk and a small serving of grains to the boy's dinner plates, but the bulk of the plate was veggies and a small serving of protein.  The boys never really complained about their new dinner plates.  Instead they spent dinnertime teasing Jeff and I.  They would take turns telling us how delicious their bread/rice/pasta tasted.  (And I secretly was laughing inside because I knew I was still winning.) 

Now because this blog is focused on Type 1 diabetes I will share how these small dinner changes affected Ben's BG numbers.  I dug up a couple charts from the Medtronics Carelink website.  (For my non-T1 friends every few weeks we upload all the data from Ben’s pump to this website.)

 

This first chart is an example of Ben’s BGs for a two week period.  This two week period is before Jeff and I started our diet changes.  (Again, for my non-T1 friends this chart is displaying what Ben’s BGs are throughout the day.  Each line shows what his lowest and highest BGs are for a given hour.  The circles in the middle of the lines show what his average BG was for that hour.  The green band shows what Medtronics thinks his target BG should be (140 to 70).  The average hourly BGs outside that target range are white circles and the average hourly BGs within the target range are black circles.)

 
I have circled the evening blood sugar readings because these are the numbers that I hoped would be affected by our dinner changes.  You might notice that these numbers are actually pretty good.  At this point in the evening we have quite a few black circles, Ben’s averages are within the target range.

Now here is Ben’s chart for a few weeks later.

 

In this two week period we are still seeing a lot of black circles in the evening, which is good.  Ben’s evening averages are still mostly in range.  But I was thrilled by this chart because it’s showing me my changes were making a difference.

Notice where the top of these lines are ending!  These lines are much shorter than the lines on our first chart.  This means that Ben’s highest BGs were no longer that high!  Ben’s evening BGs were more steadily in range and there were less BG spikes.  And these steadier evening BGs had another affect.

Ben was waking up with lower morning BGs too.  The red dot I have highlighted here is warning us that this is a scary low below the target green band.  And that’s not necessarily good news … but it’s easily fixed with an adjustment to Ben’s nightly basal rates.  Within a few weeks of changing Ben’s dinner plate we had to reduce his 3:00am basal rate.

Minus the alarming red dot … I was loving the numbers I was seeing.  (And I must also add that I was also loving the numbers I was seeing on the scale at my morning weigh in.)

With a new confidence and determination it was now time to tackle the rest of the day.  I don’t want to bore everyone with every detail of what will certainly be a long, long battle, fixing the boy’s diet.  But I do not want to end this series of posts just yet.

Which leads me to my last post … Step 4  My Aha! Moments

Step 2 ... Experiment

This post is a continuation of my last post. And before I continue I want to first state plainly, neither Jeff nor I have Type 1 Diabetes. This experiment is being done on two adults with fully functioning pancreases.

Now back to my story.

I took a few more days, but I did finish my last glass of wine and I also finished reading It Starts with Food.

The basic premise of the book is that all the food you eat either makes you more healthy or less healthy. The book covers in detail the effects on our bodies of unhealthy eating. They break it down into three categories: the effects of sugar on our brain, the hormonal imbalance including insulin levels (every T1 mom's favorite topic), and lastly leaky gut.

The chapter on hormones and insulin honestly gave me a headache. They explain a complicated dance between your digestive system, pancreas, liver and brain. They suggest as we eat all the wrong things we mess with this dance and our hormones are out of balance. Now this chapter is specifically addressing the effects on a healthy adult, not someone with T1. But it did make think that maybe I am really on to something. If this is true, and a healthy adult can't properly handle our over processed-carbohydrate-rich diet then how can someone with a broken pancreas?

All this imbalance leads to overall systemic inflammation. They spend pages detailing why this happens and why it's very bad. And as I read I started to realize how bloated I felt, I always felt. By the time I finished reading I was certain I was as bloated and inflamed as Violet Beauregarde when she stole the gum from Willy Wonka and became a human blueberry.

In addition to a healthier (less bloated) life the book promises life changing benefits. They suggest if you follow their food plan for 30 days your life will be transformed: you will have a healthier relationship with food, you will sleep better (a T1 mom's dream come true), you will have improved energy levels and self-esteem, and you will just be happier.

While I read the book, I doubted the authors and thought maybe they were just simply bonkers. They detailed their science, but it still seemed like mad science. But they promised a good night's sleep and happiness. And who doesn't want to be a little happier?

It was now time to start the experiment. Now if I remember my high school science classes properly, every good experiment starts with a hypothesis. I did a quick Google search and found this definition,

"Most of the time a hypothesis is written like this: if _____(I do this)_____ then _____(this)____ will happen."

Filling in these blanks I am starting my experiment with this hypothesis:

If I follow the Whole 30 diet plan, then I will most likely starve and end up shoving my face in a bag of potato chips.

Despite my cynical attitude, I convinced Jeff to try the diet too and I promised him his own bag of chips if we failed. Jeff then printed out a suggested Whole30 grocery list. And off I went to the supermarket. Now this grocery list includes vegetables, vegetables, more vegetables, fruit, meat, eggs and fancy (expensive) oils. What is not on this list is anything with sugar, also no grains, no legumes, no milk, and absolutely no processed food. Within a few minutes at the local supermarket I quickly realized I was going to have to find a new place to shop. The food revolution had begun ...

It's now time to fast forward this story 30 days. At the end of our Whole30 there were NO potato chips. My hypothesis was completely wrong. But like any great (or high school) scientist knows there are no failed experiments, only unexpected outcomes.

I no longer felt like Violet from Willy Wonka. The Oompa Loompas had magically deflated me. I felt light and energized. Jeff and I were sleeping through the night! Now this was a significant improvement. We still check Ben every night at 2am. And over the past couple of years we no longer even needed to set the nightly alarm because I was always wide awake. I would get up check Ben and then hope I would fall asleep again. But now, after our Whole30, we both sleep soundly through the night. We have even slept straight through the 2am alarm. Not necessarily ideal for the parents of a T1 child, but a problem easily solved with a louder alarm.

I ended this experiment with a new resolve. I was now certain what you eat matters! And it matters in more ways than I had expected.

Which leads me to Step 3 ... Analyze the Data

Step 1 ... Learn and Study

Just this January we discovered (through constant high BGs) that Ben had likely hit a growth spurt and he now was requiring a lot more insulin.  Because Ben uses a pump increasing his insulin dosing is not a simple as it may seem.  There are lots (and lots) of settings that affect the amount of insulin he recieves.  There are basal rates for 3:00am, 6:00am, 9:00am, 12:00pm, 3:00pm, 7:00pm and 11:00pm.  There are insulin to carb ratios that also vary throughtout the day and sensitivity factors that again vary through the day. 

Our Nurse Educator has always advised us to make a small adjustment to one setting and then wait and see how Ben's body reacts.  I detailed some of this process in my post Poking the Beehive (the post that ended with me raging like Shirley MacLaine.)  Even though at times I wanted to scream and pull out my hair, I kept tweaking Ben's pump settings, waiting to see if the tweaks worked, and then do it again.  It was a test of patience and persistance ... And guess who won?  Me and Ben (alright mostly Ben).

Now I am hoping I can apply some of those lessons I learned this January to our new challenge: Diet.  I realize when a problem seems insurmountable it is best to approach it using baby steps.  I need to attack this new problem with the same patience and persistance.

Step 1 ... Learn and Study

This January when I needed to make adjusments to Ben's pump settings I felt confident (somewhat) that I could make them because I have spent the last three years reading books, attending seminars, and grilling our Nurse Educator on all things diabetes.

But this time where do I start?  Maybe it would be a good idea to start with an expert. (I am a genius, really.)  So I started with a Facebook message to my lovely, new sister-in-law, who happens to be a dietician, and asked ... How many carbs does a growing child need in day?  She told me there is no one size fits all answer.  (I am guessing this is no surprise to anyone who lives with T1.)  She then suggested I first needed to figure out the percentage of Ben's daily calories that come from carbs.  Nice!  I liked this suggestion.  A concrete starting point.  So I pulled out my logbooks and starting recording Ben's total calories along with his carb intake.  I did this for a day.  Yep, just one day.  And I didn't need to do the math to realize Ben's daily % was a lot closer to 100% then to 50%.  My sister-in-law was not going to be impressed.

I now had the proof (the slap in the face) things needed to change.  But how do I do it?  I simply could not just take away Ben's favorite plate of plain pasta or his bowl of cereal.  That would surely lead to arguing, angry voices and tears (lots and lots of tears.)  I scoured Amazon for a book that could help, looking for something to help a parent fix a kid's diet.  I found nothing.  I know Ben needs to eat more protein, fruits and vegetables.  But how do I get him to put them in his mouth, chew, swallow and then most importantly want more!?

Then one afternoon I was chatting with a friend about my new obession, diet, and he lite up.  He had just finished reading the book "It Starts with Food" and insisted that I give the Whole30 diet plan a try.  I was admittedly skeptical (I am a cynic by nature) and I told him I would think about it.  The next day UPS knocked on my door with a package from Amazon.  It was the book.  OK I get it.  He really wants me to give this a try.  So that evening as I sat down with my glass of wine to watch American Idol I pulled out the book and started reading.  Quickly I understood the message.  And quickly I decided I better put down the book so I could enjoy what I realized was likely my last glass of wine.

It was time.  It was time to fix my diet (and Jeff's).  It was time to try this Whole30 experiment on us.  It was time to lead our kids to a proper healthy diet.  And the truth is the kids already were following us.  But sometimes it is just not a good idea to follow me ... Because sometimes I bang into walls!

Which leads me to Step 2 ... Experiment

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. 

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.