Joining The Chorus

On November 14, 1991, the International Diabetes Federation (IDF) organized the very first World Diabetes Day.

The goal:

Raise awareness about the disease, it's treatment-- and its potentially devastating consequences.

To further this cause, the United Nations passed a resolution last December recognizing World Diabetes Day-- making it a
"United Nations Day."

Every year, the IDF designates a theme for this very important day.
This year's theme:

Diabetes in Children and Adolescents.

Couldn't hit any closer to home, now could it?

I am often told that my son "doesn't look like he has diabetes."

That he "seems so healthy."

Many times, folks have wondered why I let Joseph eat "that cupcake" or "that piece of candy."

Or, in a maddeningly dismissive tone, others have said:

"So, I guess it's under control then."

As if the insulin he takes somehow "cures" his diabetes.

More people need to be educated about this disease. They need to understand that it isn't as simple as taking a pill or a shot.

If you're reading this blog, then you know a little something about how diabetes impacts the life of a child-- a child who has the support, education and tools to help him deal with this thing.

But even with all of these resources, it's hard.

The highs, the lows-- and the fear. They're all still there.

And what about those other kids?

The ones whose parents don't have access to the bare-bones tools needed to manage the disease.

Children who will likely suffer the worst complications of diabetes because their parents (and often, the communities in which they live) are without the money, education and support necessary to try to prevent them.

People need to know.

Please click on the banner to the right to learn more about World Diabetes Day-- and how you can get involved.

Screening

The kids are finally in bed.

I sit down heavily on the couch, pick up the remote, and hit "rewind."

And then listen to the videotape spin loudly back to the beginning.

Joseph can just watch the tape tomorrow.

It's probably fine.

But I can't get that description out of my head-- the one I read earlier on the PBS website that started out sounding good:

This Teen Connection will include teens and expert guests who will discuss juvenile diabetes, its treatment and work that is being done to find a cure for the disease, and develop new therapies for people suffering from it.

But then, in the second paragraph:

Life expectancy for patients with the disease is often 15 years shorter than others. For patients, complications including blindness, heart disease, strokes and kidney failure are ever-present possibilities.

That was enough.

Now, don't misunderstand-- Joseph is well aware of the complications of this disease.

But still, he just turned twelve this month.

And recently, before going to bed he told me through tears that he's afraid of dying:

"I just want to be happy, and not think about it-- but sometimes when I go to bed at night, I'm scared."

Ryan joins me on the couch as I hit "play" on the remote.

A pretty young woman with dark hair welcomes us to the program-- and then tells us that:

"Every three minutes someone in the United States dies because of complications caused by diabetes."

Man.

"Tonight we're going to be talking with three teens who are living with Type 1 diabetes, and a doctor who specializes in treating the disease-- and we'll be taking calls from viewers."

She introduces her guests, and begins discussing their diagnoses, the symptoms of Type 1, and the differences between Type 1 and
Type 2. Then, a prerecorded video walks us through a detailed description of Type 1 diabetes.

And then the calls start coming in:

"I had a reading of 550," says an elderly male voice, "and I wasn't admitted to the hospital . . . should I have been admitted?"

"I have a son," says the voice of a worried mother, "and we have a lot of health issues in our family-- a lot of Type 2. [Should] parents be concerned?"

"I am in my mid-40's," another female caller says, "and I find myself every now and then craving something sweet . . . but as soon as I have it, I have an overwhelming need to lay down and take a nap and go to sleep-- is that a sign of possible diabetes?"

(Despite some of these questions, I start to wonder if I made the right decision-- if I should have just let Joseph watch this in real time so he could have participated in the dialogue.)

"Caller, go ahead with your question," says the perky, dark-haired host.

"I just wanted to say I have a comment," responds a young woman's voice. "I've been a diabetic for 21 years. I was diagnosed at the age of seven and I... um... had complications with my eyes... and now I'm completely blind at the age of 28."

I swallow hard, and stare at the screen-- at the three young people shifting uncomfortably on their stools.

In each of their frozen expressions, I see my son.

"I just recently got married," the caller continues, "and I had a baby. Blood sugars are in great control now . . . but from seven on up through 17, I was not in the best control."

Like me, Ryan sits there watching-- not saying anything for a few moments.

Just listening to this woman's story.

Willing it not to be our son's.

"Now I... um... you know -- without my vision -- can't see my baby's face, can't see my husband."

In response, the panel discusses how important it is to stay in good control-- and the wonderful statistics for those who do.

Even so, I keep hearing that voice-- long after we turn off the TV.

So Here's the Scoop

First- thanks.

To everyone who continues to come here -- even when I don't show up -- and to those of you who've commented or sent emails checking in.

We're all right.

I think.

Remember how, two posts back I mentioned that a ton was happening and that there were some things I couldn't talk about yet?

Well, I can now.

Ryan is changing jobs.

After teaching Java programming for over 10 years, he's burnt out -- has been for a while -- so much so that he wants to stop teaching altogether and return to software development.

As a result, he started looking-- and ended up interviewing for a development position with a very small (but growing) company.

He came home from that meeting more excited about work than I've seen him in a long time.

The people were great, the work sounded interesting-- and he could still ride his bike to the office (when it's not bitterly cold and snowy, that is).

Sounds perfect, right?

Well... almost.

You see, Ryan hasn't done software development for a very long time-- so in order for him to make this change, he has to take a pay cut.

A big pay cut.

And then there's the health insurance.

For a while, we were unsure whether or not Ryan could even consider this job-- the benefits had to cover Joseph's pump and supplies.

We could never afford them otherwise.

Thankfully, after much research -- and much, much hand-wringing -- we discovered that while we'll have a deductible (ouch!), our copay will be less than our current one. And this new provider covers both the Animas and Medtronic pumps (but sadly, not the Cozmo).

So far, the only bad news about this new insurance is that Lifescan is not on their formulary-- thus our fleet of OneTouch meters will be useless to us.

(Any information folks could share about other meters would be much appreciated!)

Oh yes, and I'm still on the edge of my seat wondering if our new insurance will cover our 400 test strips a month.

We won't find this out until Ryan starts the new job in mid-November.

Now, in addition to stressing out about all of this -- and trying not to let the kids see me stressing -- I've been thinking about my own career.

I haven't had a paying job since teaching birthing classes nearly eight years ago.

(Man, I wish this job change were happening next fall-- when Evan will be in kindergarten full days -- right now, she's only in preschool a few days a week for 2 1/2 hours.)

I don't know.

I have a few ideas, but nothing really solid yet.

And nothing -- so far -- that will allow me to work around the kid's schedules.

Soooo... that's the big news.

There's more to talk about-- Evan's recent obsession, Joseph's first middle school dance, the end of the Fall Ball season, those dang Red Sox-- not to mention my non-paying, but really cool recent project.

But, if I'm gonna post something at all, I'd better stop here.