10/24/09, our grandma came into town, for the JDRF

hope gala! But, the thing was, Austin is still sick!

Amber got selected as a Children’s Congress delegate!  We’ll be heading to Washington, DC, this June to participate!

 On May 6th, 2008, the Walk Awards banquet was held at Hy-Vee Corportate Conference Center.  Our family won a couple of awards, and we want to thank you for helping us achieve that. click to read more »

On May 6th, 2008, the Walk Awards banquet was held at Hy-Vee Corportate Conference Center. One of my favorite things about that building is the bricks right outside the main doors. I’ve always liked that “hard” recognition of Hy-Vee’s national sponsorship of JDRF.  Hy-Vee has been an awesome sponsor and partner for our chapter, they raise about a million dollars a year for JDRF, and that’s just awesome. click to read more »

Walk day this year was a lot better than last year, simply because there hadn’t been a blizzard, and everyone on our team could make it! 

 And as you can see, a whole lot of other people did, too!  We estimated that we had over 8,000 people at the walk this year!  We had more inflatables, more exhbitors, more food from the vendors, It was a great day!  There were hundreds of people still there when we had to shut things down for the day. 

Our team fundraising goal was $10,000.  With the help of a few new people on our team, we were able to exceed that.  We got Amber’s YMCA after school teachers on our team, and they raised over a thousand.  One of my friends that I met through JDRF joined our team this year, and she raised almost two thousand.  Plus we’ve had more of our friends raise even just a hundred dollars.  My fundraising was even more than last year, and Thrivent Financial is going to do another team matching gift of $3,000!  Thanks, Jeff Olson!

The Walk Awards banquet is May 6th, we’ll see how well we stack up with all the other walk teams.  Until then, thanks to all of Amber’s Angels! 

Tonight Amber showed me a couple Barbies that she’d been playing with today, and one of them she’s always said is her twin.  It’s got blond hair, and she dresses it with the same kinds of clothes she wears.  She held held that one up and said, “This is me all grown up.  See what’s different?”  I didn’t understand what she was thinking at first.  I said something about what she was wearing, and I made a joke about Amber growing up to only be a foot tall, like that Barbie. 

She said, “No, Daddy.  She doesn’t have diabetes.”

It was all I could do to not cry.  I just hugged her, because she was in such a great mood that I didn’t have the heart to explain to her right then that we never find a cure for this damn disease which has invaded our lives.

Now I get to spend the night thinking about how I’m going to talk to her about this tomorrow.  A Monday is an appropriate day to break your child’s heart.

One of the hardest things to get people who aren’t parents of kids with serious or chronic diseases to understand is the fear.  The fear of loss of control of management.  The fear of not being there when something happens.  The fear of losing your child for something preventable.  The fear of your child growing up and not needing you to help them any longer. 

I belong to an email distribution list on Children with Diabetes for parents of kids with diabetes.  There was an email sent today from a mother whose daughter is about Amber’s age.  She told a story about a friend of her daughter wanting to take her out to a movie and a meal.  She talked about sending a scale along so that her daughter could weigh her food to be able to bolus properly.  She talked about how nervous her daughter was about counting carbs and bolusing without her mom there.  But mostly she talked about the fear.  The fear of not being there.  The fear of the unknown and not manageable.  The fear of making a mistake and harming your child. 

As a parent of a kid with diabetes this is the fear we live with every day.  I can describe what the fear is like to others, but you just can’t know.  And this isn’t meant to make people feel bad, like their empathy isn’t appreciated and helpful.  It’s just meant to say that unless it’s your kid, you just won’t understand.  We have to worry about Amber whenever we send her out to play.  We have to worry about Amber when she goes to a friend’s house.  We have to worry about her at school, on field trips, at day care.  We have to worry that we’ve trained her teachers well enough, that we’ve explained the symptoms of lows to the parents of her friends.  We have to worry that she eats all the food in her lunch, so that the insulin amount that we calculated at breakfast is correct and she won’t go low.  We have to worry that she’s not going to do well in class because of too many highs.  We have to worry about what she’ll do after school next year because she’ll be too old for day care.  We have to worry about her going low as she sleeps at night and not waking up.  It is a constant state of fear.

I hate that this damn disease makes us feel like that.  I hate that this damn disease is taking away the innocence from our kids, as they are having to deal with the same things. 

Diabetes sucks.  And everyone can understand that.