Monday, March 28, 2011


Last week Beanie was Celebrity Student of the Week in her third grade class.  On different days she brought in and shared, her stats,  pictures of herself, her favorite book, her star talent, and a letter from me, about her.  I knew from the first week of school I had to write it, and I have been dreading it.  Do I include celiac disease and the challenges she's faced? If so, how without sounding like Debbie Downer.  I wrote an original draft that was fine, but after spending a weekend in the house with sick kids watching 'Megamind' on demand, I decided on a slightly altered approach.

This post is dedicated to all of you raising Superheroes of your own. While the stories are all different, the awe our kids inspire in us is the same. Like Roxanne Richie says, (with Tina Fey's voice) 'Heroes are not born. They're made'

Once upon a time in a galaxy not so far away a little girl was born.  We realized at a young age, she was not like ordinary children her age.  How could we tell? Well it may have been her comedic timing that was advanced for her age.  Like how she told her first knock-knock joke, not long after learning to speak.  Or, maybe it was her ability to entrance an audience with her stories that are always laced with suspense and humour. Those were our, early clues that this little girl might be more then a mere mortal, but there was a time, not that long ago that these super powers, (and others), were almost extinguished from her body.  Those were some dark days for our girl, and the family that loves her.

The challenges she faced started quite innocently.  She was small, but then, so were others in her family.  However between nine and 18 months of age, the signs of her diabolical sensitivity became more insidious.   She almost stopped growing completely.  We began to seek the advice of scientists…. experts in their fields.  Nutritionists, Allergist, internists, none of them could decipher the riddle of her changing health.

By age 3, our petite pixie was sick and tired almost all the time.  She missed most days of preschool, and struggled to walk to the bus stop to pick up her big sister from Kindergarten.  Most days she needed to be carried, or rode in her wagon most of the way.  Many nights during this period, she couldn’t fall asleep, or woke up in the middle of the night with strange sensations, and itching all over your body.   We continued our pursuit of answers from even more specialists.  Next it was the endocrinologist at CHOP. Endocrinologists are experts of the glands, and hormones in her body.  They checked her growth hormones, to see if maybe she didn’t have enough to make her grow. They did a bone age test that showed that the growth of her bones was a full year younger then her actual age!!  We were starting to get worried, but all the other tests came back normal.  

Next they sent us on to the Gastroenterology department at CHOP. Gastroenterologists study the digestive system.  They checked for more diseases, and also any abnormalities in her tummy and intestines.  After almost a year of outpatient testing, and procedures, they still had no definite diagnosis.  The only clue we had was a positive genetic marker for a predisposition for Celiac Disease.  Beanie’s intestines hadn’t shown the typical villi damage that most people with celiac have, so the doctors told us to retest you in a year.

We didn’t like that answer, but we abided by it till one day in the November, three months after she turned four.  Her super powers began to dwindle so greatly, that it could no longer be ignored.  Beanie had the TV turned up so loud that it hurt my ears when I entered the room, and she was sitting right in front of it!  I got angry and told her, (in my scary voice) to turn it down.  She turned to me crying and said, “But Mommy, I can’t hear it!”  Imagine that!  The child who could overhear adult whispers from a good 10 yards away, (especially if they pertained to her), couldn’t hear a TV blasting in her face.  I knew we couldn’t wait another year for expert answers.

I had been researching Celiac Disease and its treatment, the gluten free diet.  I found it hard to believe that a protein found in wheat, rye, barley, and sometimes oats, could really be sucking all her power from her, but hey, even Superman has his Kryptonite.  So we gave it a try.  That is how our gluten free journey began, and Beanie has been getting stronger and healthier ever since.

Over the next few years you still struggled with bouts of illness that we couldn’t explain.  It took some time, and a whole lot of sleuthing, but we came to realize, that her body was also weakened by like corn, chocolate and soy.  Apparently her immune system was so supersensitive that it was confusing the proteins in these foods with gluten.  So one by one, we removed these from her diet too.

Losing these foods was almost harder than removing the gluten. Beanie was disappointed each time another food jumped to the forbidden list, but she never dwelled on it.  She must also have some inner dominion to withstand the cravings and desires for all those foods without whining about it. A lesser being would have crumbled, but not Beanie.

Most kids your age just have to get a good night sleep, eat three meals a day and get exercise to stay healthy.  Beanie has to resist countless temptations that other kids indulge in without giving it a second thought. Candy on Halloween and Easter, popcorn at the movies, hot chocolate on snowy days, and pizza with friends.

Let’s face it though; what really makes Superheroes stand out is their ability to do good deeds for others,  (usually with very little effort).  Well in your nine trips round the sun, you have been the catalyst for healing quite a number of people, who had been suffering from Celiac Disease, and gluten intolerance and never even knew!  Me, Daddy, Kat, and most recently Aunt T,  and three of your cousins.  After over a year of being almost homebound, your eldest cousin is planning for a camping trip.  After his visit here in January, he felt so much better eating gluten free with you that he went home and kept eating a gluten free.  His recovery has even amazed his Krohn’s doctors!

When they look at you, most people see a spunky, spirited, optimistic, petite girl.  Your family on the other hand, sees a powerful force of good in an unassuming package, truly ‘bigger than your body gives you credit for’.  A veritable superhero with powers of will, determination, kindness, comedic timing, storytelling, dog like hearing, and most important, the ability to spread happiness and health without even trying.

Guess it’s time to find yourself a sidekick. 

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