Amber’s Awesome 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.

The JDRF Walk to Cure 2008 will be held on March 1st, and Amber’s Awesome Angels are going to be there!  We’d like you to be there, too!  Walk day will be pretty much like last year, from 8 to 11:30, with food and drink in Capital Square and play stuff in the Convention Complex.  You can join our team by clicking on Join This Team on  Amber’s walk page! 

The theme is this year is High School Musical, with the slogan, “We’re all in this together!”  It’s one of the lines from those two movies that has really stuck with us.  We are all in this together, helping each other out when we need advice or when we just need someone to complain to.  We have to live with the daily management of this disease, and we understand the frustrations of trying to figure it out.  We are a big family, and that’s the best thing about the walk, it’s more than 7,000 brothers and sisters, all in the same family for just a few hours of one day. click to read more »

At the Children with Diabetes conference in Orlando this summer (yes, I still need to post about that), one of the things we realized is that there is a lot we don’t know about how to fully use Amber’s pump.  Everything from understanding the different types of boluses to insulin duration to basal rate testing.  So when we found out CWD was going to have a regional conference in Minneapolis, we jumped at the opportunity!  Not only could we go to a CWD event, which are just awesome and inspiring, but we could drive there and not have to buy airline tickets.  Plus my sister, Patty, lives in Minneapolis, so we thought we’d get a chance to see them as well.  We did a little bit, but not nearly as much as we’d have liked. click to read more »

Wow, what an emotional weekend. click to read more »

We walked in the Omaha JDRF Walk to Cure with friends of ours from Omaha. 
They were on our walk team in Des Moines, but couldn’t make it because of the
snow storm that closed all the roads.

Between Jana and Heidi (the two in the middle), they raised about
$1000 for our walk team, so we wanted to be there with them at their walk. 
It was fun, it was held at a really large park by the University of Nebraska
Omaha’s campus.  They had some games to play, a couple inflatables, and
a stage where they had a DJ.  It was cool to see how other chapters run a
walk.  I got a few really good ideas for our walk, we’ll see what we can
get implemented. 

This isn’t a post about diabetes, it’s a post about being an American. 

Today the National Guard battalion which is from the area where I grew up came back from Iraq.  They got into the US last week and were released from active duty this afternoon.  I have a lot of friends in the battalion, and the guy in charge of the homecoming ceremony is a friend of mine from high school, so I volunteer to go help.  Wow am I glad I did. 

The battalion was originally slated to return in April, but the surge made them one of the first units to have their stay extended.  They were in Iraq for 17 months and were on active duty for 22 months total.  They are the longest serving unit in Iraq to date, both active duty and National Guard, and no other National Guard unit has been deployed this long since WWII.  They are a special group of people.  They earned something like 60 Purple Hearts, and had about 15 awards for valor.  60% of the battalion earned Combat Infantryman’s Badges, which an infantryman received after being in a combat theater for at least 6 months, and is the most cherished and respected award the Infantry has.  Unfortunately, two of the members didn’t make it home with the rest, they were killed in a fight with insurgents last fall.  Their families were present, though.

Their route took them from Fort McCoy, Wisconsin, south to cross into Iowa at Dubuque, then west to Waterloo, where the ceremony was held.  It’s about an 80 minute drive from Dubuque to Waterloo on a 4 lane highway.  When they crossed the border into Iowa, they met up with about 600 members of the Patriot Guard, a motorcycle group made up mostly of veterans, but completely of people who simply want to show respect for our troops. 

http://www.patriotguard.org/

Their motorcycles, along with a state trooper and county sheriff escort, brought them to Waterloo.  The battalion is made up from over 200 communities, most with their own VFW or American Legion.  At every overpass on that 80 minute drive there was a group of veterans standing in salute as the 18 buses carrying the battalion rode past.  The battalion deployed with about 650 troops.  All along the route there were “welcome home” signs and ”love you” signs and American flags.  Everywhere.  As a veteran, good flags displays get me emotional as it is, but coupled with the signs and the purpose of the day, my eyes were watering.  A lot.

The Patriot Guard had members stationed all along the route, pretty much at every on ramp, so by the time they got to Waterloo they numbered close to 700.  From where I was standing, you could see them pull in, and it took about 10 minutes just to get the motorcycles in.  Then about a hundred of them came into the baseball stadium where the ceremony was being held, each carrying an American flag.  They lined the route that the battalion would take to walk in.  If you’ve ever seen a sabre arch, it was kinda like that, but with American flags.  The Patriot Guard is an awesome group of individuals, and the service they provide is outstanding.

I got there at 9 am to help set up, the ceremony started at 2.  People were already arriving at the stadium at 6:30 am.  The stadium holds about 5000 people, they planned for 6500.  More than 10,000 showed up, almost all at least 2 hours before the troops arrived.  I’ve got pictures, I just haven’t loaded them onto my PC yet.  The energy was incredible.  The shirts were, too.  I think almost everyone had some kind of custom t-shirt, with pictures and names, and sayings like “SGT Smith’s Mom” and “My Daddy’s a Hero”.  One of the cutest shirts I saw was worn by a little boy, probably 3 or 4, and it had a picture of his dad with his name and a line that said something about how proud he was of his dad.  I don’t remember the actual phrase, because all I remember is that the boy was getting antsy, his grandma was doing her best to calm him, but he kept saying, “I just want to see my daddy”.  I couldn’t stop thinking that the last time this boy saw his dad, the last time they shared an embrace, the boy probably wasn’t even old enough to remember it.  Then I couldn’t stop thinking about my kids at home, and how I got to hug them every day and this boy was deprived of that.  I had to turn away so they didn’t see me cry.  These families are proud of their soldiers, and both the families and the soldiers are proud of their service and they know it was worthwhile.  Seeing the sacrifice that the families had to make in the face of this little boy makes me appreciate what they all did even more.

The ceremony lasted about 20 minutes, then the troops were dismissed.  At that point is was pure mayhem.  The 10,000 people and the 650 troops all converged on each other, and the reunions were something so touching that I don’t think words can adequately express.

The Patriot Guard then filed quietly away, off to prepare for the next homecoming or the next funeral detail.  I have more respect for that group than I can possibly express.  The happiness and emotion that you get just watching an event like this is something to cherish.  Makes you proud to be an American.

Here’s a picture of Amber and Maya, who is one of her best friends, taken at
the Walk.

Our Walk awards banquet was held in May, and for the second year in a row our
family team was recognized often. Our team results were outstanding. As a team we raised $21,944, and we had about 120 walkers on our team!! Thank you to everyone who donated and thank you to everyone who was part of our family that day. 
We were the #2 family team fundraisers, for the second year. 

We each received individual trophies for having raised over $1000.  After
complaining last year that he didn’t get to go up on stage and get his trophy,
Austin was too shy to go up on stage to get his this year.  Oh, well, he
still had a trophy to bring home!

A big reason we raised the amount we did was because we received a $5000 matching funds donation from Thrivent Financial. Jeff Olson is our personal financial advisor, and he’s a friend, being a member at our church as well.

Here’s a picture of Jeff with Jenn Howieson, Special Events Manager at JDRF, as she presents him with Thrivent’s plaque, recognizing their support of trying to find a cure.

Walk 2007 was an…interesting… event!  As co-chair we had several issues to deal with.  We had blizzard conditions in Iowa for the two days prior, I80 was closed west of Des Moines to Omaha, I35 was closed north of Ames.  Most of the entertainment bailed or was stuck in the snow, the person who was going to sing the National Anthem couldn’t make it, some of our inflatables got stuck in Omaha, our celebrity (Miss America 1999, Nicole Johnson Baker, Type 1 since 1993), we were short about 2000 walkers from what we normally have at the Walk, and our emcee, who is the head weatherman for TV13, couldn’t make it because he was budy covering the weather.  I had to made several trips between downtown Des Moines and Ankeny the day before and every time I went there were more cars in the ditch, some which had rolled.  Nasty stuff. 

But we still had a great time.  We got different inflatables, a different emcee, a different anthem singer.  Even though my parents couldn’t make it, and Kim’s mom couldn’t make it, among others, we still had a blast.  Whether Kim and I were happy with the amount of hair coloring that our volunteers sprayed in Austin’s hair is another issue, but Austin loved it.  Amber loved hers, and letting the kids have a day of fun was what it was all about.  The Walk raised over $1.6 million, and our family team exceeded all expectations by raising over $21,150!  A great day all around.  Until we got back to Ankeny, at least.  Kim had put an order of 5 pizzas in with Casey’s, as we were going to have people over to our house afterwards for lunch.  When she showed up to pick up the pizzas, they didn’t have an order.  Uh oh.  So we bought as many individual slices as they had, bought all the individual slices that another Casey’s had, and made them make some pizzas for us yet.  We had to scramble, but we got them.  Crisis averted.  Then I had to leave on a flight at 3:40 to go to Washington, DC, for JDRF’s Government Day.  All the Government Relations leaders from all over the US met there for some training and then to lobby our members of Congress.  Made for a long weekend, but it was worth it!