Amber’s Awesome Angels

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!

Diabetes (di-a-’bE-tEz)

From the Greek word meaning “a siphon”

Wow, I hadn’t heard that before, but it is such an appropriate name, both in the physical and metaphorical sense.  If untreated, it physically siphons from you your life.  It forces your body to consume itself.  Insulin fixes that, however.

In the metaphorical sense, diabetes also siphons your life from you.  A person with diabetes is in the prison of shots or infusion sites, insulin, carb counting, and finger pokes.  The constant-ness of it just continues to eat at you, continues to keep you restricted.  The challenge for a diabetic is to have the personal strength and conviction to ignore those restrictions.  Through JDRF and CWD, we’ve been exposed to dozens of people who give us hope and inspiration. 

We also get hope and inspiration from those of you who choose to donate to find a cure just because we tell you our story.  You have no idea how humbling that is for us.  We also get hope and inspiration from those who choose to join with us to walk or volunteer.  That kind of physical and emotional support helps us survive the day to day prison that is living with diabetes.

As you know by now, my daughter Amber was diagnosed with Juvenile Diabetes, also called Type 1 Diabetes, on February 15^th, 2005.  Juvenile Diabetes is an auto-immune disease where your body’s pancreas stops producing insulin, which your body needs to deliver the glucose in your blood to the cells which need to consume it to function.  She is insulin dependent for life.  She has to check her blood glucose level many times every day by pricking the tips of her fingers and drawing a drop of blood.  She’s checked her blood glucose all on her own since the second day home from the hospital, because the first night home from the hospital it took her mom and me 3 pokes to get enough blood for the test.  We haven’t been allowed to touch her fingers since.  A normal adult’s blood glucose range should be between 80 and 120.  Hers, as a diabetic, is between 80 and 180. 

If she has hyperglycemia, which when the glucose level goes above 180, she becomes tired and listless, gets headaches, has frequent urination, and nausea.  It takes insulin to bring that level down.  This is a particular problem during school.  Mornings are when her class has all their tests.  Amber frequently experiences hyperglycemia after breakfast, and it definitely affects her ability to perform well on her schoolwork.  If her body goes without the insulin long enough, the body begins to burn fat cells, and when it runs out of fat cells it starts to break down muscle and use that for energy.  Diabetes used to be called “The Wasting Disease”, because people with diabetes used to just waste away to nothing as their body consumed itself.  Long term risks with hyperglycemia include eye damage, organ damage, increased risk of heart disease, and many other conditions. If she has hypoglycemia, which is when the blood glucose level goes below 80, she experiences shakiness and dizziness.  Her skin goes pale and she loses coordination.  She has problems focusing, which is a particular problem during school.  She can become easily confused and disoriented and not know where she’s at.  Because of that, Amber cannot be left alone at any time during the day, she is not even allowed to walk to the nurse’s office by herself.  There are many stories of diabetic kids being found unconscious in a hallway because they were low and couldn’t find the right place to go, even though they’d traveled the same path a hundred times.  If not caught in time, hypoglycemia can make a person’s blood sugar drop so low as to cause what’s called a diabetic coma, where the person just goes unconscious, and even can result in death.  Every one of Amber’s teachers had to be trained on how to administer an emergency glucose shot if Amber would ever go unconscious.  A diabetic coma can happen when your blood sugar gets down to the teens or lower.  Amber’s been as low as 29 and 31.  I can’t explain the feeling you get when a number like that pops up on her glucose meter.

Up until November of 2006, besides testing her blood sugar 4 times a day, she was giving herself 3 shots a day.  That totals about 1100 shots a year.  Every year.  She’d been doing the shots herself for about 15 months by that time.  But on the 1^st of November, she got an insulin pump.  That is a device which delivers two kinds of insulin throughout the day.  First is basal insulin, which delivers a little bit of insulin throughout the day.  The second kind is bolus insulin, the amount of which is determined by the carbohydrates in the food she eats as well as what her blood sugar score is now.  The pump itself is about the size of the pager, with an LCD display and a few buttons to enter information.  It holds a reservoir of insulin that is delivered through a tube which connects to an infusion set.  That infusion set has a small catheter-like tube that gets inserted under Amber’s skin.  Instead of needing shots every day, that site only needs to be changed every 3 days.  She’s only 9 years old, and she does all this herself.

The other thing this does is free her up to be a normal kid again.  She doesn’t have to eat at a certain time every day.  She doesn’t have to eat a specific number of carbohydrates every day.  She can stay up late (if we let her!).  She can sleep in.  She hasn’t been able to do that since she was diagnosed.  Things that we as non-diabetics take for granted.  It used to just break my heart to tell her that she has to keep eating even though she was full.  Now if she wants chocolate milk instead of white milk for her school lunch, for example, she can and just has to bolus for it. 

There is hope a cure for juvenile diabetes.  The current research includes work into creating an artificial pancreas, regenerating the cells that create insulin and transplanting those cells into a new spot in the body, and finding the trigger which causes the body to kill insulin-producing cells.  Some of that research work is being done right here in Iowa, at the University of Iowa Hospitals.  There is real hope that a cure can be found within our lifetime.   I want a cure so that I can have my daughter back.  Please join me in trying to find a cure for Juvenile Diabetes by contributing to my walk team.  JDRF was recently endorsed by Forbes magazine as the charity of choice if you want your money to go to what you intend it.  For money donated to the JDRF Walk to Cure in Iowa, over 95% of it goes directly to research.You can go here to make a donation: Rick’s Walk Page

You can also join our walk team from that link as well.  The more support we get the better, we’d love to have you on our team.  Thank you very much.

We talk a lot about how bad diabetes is, how hard it is to deal with it.  But something happened over the past 8 months or so which really puts things in perspective for me.  A family that goes to our church had twin 3 year old girls, cute as a button and full of life.  They began to notice last spring that one of the girls was having problems focusing and balancing.  She was diagnosed with a tumor in her brain stem.  This type of tumor is inoperable and always fatal.  They family did what they could to extend her life as long as they could, and they treasured every moment they had with her.  She passed away early this morning, just a few weeks before her 4th birthday. 

No matter how bad we think we have things, no matter the troubles we see with highs and lows, with malfunctioning pumps, with expired insulin, and all that, we still have our children.  We can still listen to them complain about finger pricks, we can still give them hugs when a shot hurts, we can still treat them when they go low.  I almost feel guilty being an advocate and a fundraiser for my child when others have to experience grief like this. 

I’ve dealt with death before, but watching one like this was different.  This was a life at the beginning, this was a life who was so young but old enough to understand what was happening to her.  This was the first death I’ve been even remotely close to since Amber was diagnosed.  This was harder on me than I ever expected.

Cherish every moment you have with your kids and family.  Consider yourself lucky to still have your children around for you to cherish.

We just got back from a Western Caribbean Disney cruise, and it was awesome!  The links are grouped into sets by day as well, if you click around the flickr site.  We went on this cruise only because of Amber’s diabetes.  I can hear you know saying, “Huh?”  Well, here’s the story.  Friends of ours we met through our support group meetings had booked passage on this cruise, and they suggested we go as well.  So we did.  It was a blast.  We went to Disney’s private island twice, and we went to Costa Maya and Cozumel.  Great trip, I’d definitely recommend a Disney cruise to anyone and everyone!

Well, two and a half, anyway! (Sorry, Kim Letz!)

This past summer at a ChildrenWithDiabetes conference in Orlando, we had the opportunity to meet Miss America 1999, Nicole Johnson Baker. Pictures and story from the first time are here. We were so impressed by her. She was so down to earth and friendly, and she has a great message. We got to hear more of that message this weekend. Nicole came and spoke at our Time to Talk meeting, which is our local support juvenile diabetes group.

She talked about the obstacles that she had to overcome in order to make it to Miss America, as well as the prejudices she faced from people who told her she couldn’t do it. She’s a great inspiration for kids.

Thanks to Animas and Kim Letz for bringing Nicole in to Iowa!!

This site is just plain awesome, very moving.

Amber goes on the pump today!!!  In honor of the occasion, we recorded a short video of Amber’s last shot!

(Sorry, I tried to figure out how to embed the video to make it faster to watch, but couldn’t get it right.  So you have to download the entire file before it can start.)