Blindside vs. Knowing... Both Hurt

Oldest Boy has type 1 diabetes.  He was diagnosed 03.03.03 in the ER of Primary Children's Hospital in Salt Lake City, Utah, at the age of five.  It was devastating, but we're thankful he's healthy and managing the disease responsibly.

Because of Oldest Boy's diagnosis it's not uncommon for me to check the blood sugar of Middle Boy, Toddler Child, Chris, me, and any other friend or family member.  Usually... all is well.

Middle Boy gave us a scare almost three years ago with a blood sugar near 200.  Normal is 80 to 120, roughly.  I assumed type 1 had hit him, but it had not.  Per a recommendation from Oldest Boy's  endocrinologist, we discussed with Middle Boy participating in a clinical trial for relatives of people with type 1 diabetes.  Middle Boy agreed to participate in a TrialNet Study [with our guidance, support, and input] after discovering his body is producing two of three autoantibodies that predict the onset of type 1 diabetes.  We know the freight train is heading his way.  It blindsided us with Oldest Boy.  This time we see it coming.  We can't change it's course, but we can brace emotionally for the impact.

Through the TrialNet Study, we've been monitoring Middle Boy's pancreas for two and a half years.  He consents to biannual tests requiring an IV, fasting, and a few hours of mild discomfort to see how his pancreas is performing.  We typically leave the hospital reminded that his pancreas is sputtering, but he remains diabetes free.  Stressful?  Yes.  Does it provide valuable information to researchers, ultimately helping the diabetic community?  Yes.  Does Middle Boy choose to do this?  Yes.  He receives $50 each time he participates - from the Study.  He also loves his brother and believes what he's doing will help people with diabetes and their future children and grandchildren.  Not written as a prideful mother - it's the truth.

Wednesday was a test day.  The preliminary results were bad.  We've known for some time now that Middle Boy was standing in the path of the freight train.  It's always seemed abstract - far away.  It's getting closer.  Faster.  It's painful and sad.

He does not have type 1 diabetes... today, but his blood sugars indicate it's very close.  Doctors have been wrong in the past.  We hope and pray that Middle Boy will be the exception... the miracle.  He has an appointment - as does his brother - with an endocrinologist in a couple of weeks.  One of the benefits of watching the disease approach is Middle Boy might be able to get by on a small, daily, dose of insulin to give his healthy cells a break.  It's possible he can avoid taking insulin with food for a longer period of time.  We'll see.

The doctor who oversees the study reviewed Wednesday's results and explained the implications.  We shared everything with Middle Boy, and called Chris who was home with Toddler Child.  Middle Boy cried.  His father and I cried.  BUT, we all reminded ourselves that he does NOT have type 1 diabetes on THIS day.

Let's go out for lunch, buy some clothes at Old Navy, gawk at the Apple Store, hit Toys-R-Us so you can spend your $50, and let's get a milkshake at Ben and Jerry's.  TODAY we don't have needles or insulin.  This is good!

While eating lunch at his favorite Asian restaurant, Middle Boy broke several moments of silence saying, "Mom, I thought about some of the things you've said.  I think you're right.  [About simply enjoying today.]  It's like what Helen Keller says about appreciating your senses.  She says, *'Smell a flower today, like you might not smell it tomorrow'.  That's what I'm going to do."

I said, "You're a bright boy... "

*NOTE:  He remembered the gist of what Helen Keller wrote at the end of her essay Three Days to See.

I who am blind can give one hint to those who see - one

admonition to those who would make full use of the gift of

sight: Use your eyes as if tomorrow you would be stricken

blind. And the same method can be applied to other senses.

Hear the music of voices, the song of a bird, the mighty

strains of an orchestra, as if you would be stricken deaf

to-morrow. Touch each object you want to touch as if tomorrow

your tactile sense would fail. Smell the perfume of flowers,

taste with relish each morsel, as if tomorrow you could never

smell and taste again. Make the most of every sense; glory in

all the facets of pleasure and beauty which the world reveals

to you through the several means of contact which Nature

provides. But of all the senses, I am sure that sight must be

the most delightful.

Published in the Atlantic Monthly, January 1933.