Amber’s Awesome Angels

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.)

The Greater Iowa JDRF hosted it’s 8th annual Hope Gala on Saturday, 21 October.  It’s our black tie event where we have auction items available for bidding.  The theme was Wish Upon a Star, and the intent was to raise money for juvenile diabetes research.  There are many regular auction items, “super silent” items, which are items that are a little more pricey than the regular, but not enough to classify as a “live” item.  For the live items, there is an auctioneer who does a live auction for the patrons on the main items.  Tickets are $150 a seat, you can buy a table for $1500 or more, and the more you pay the closer to the stage you sit, and for the $10,000 or more seats, you get personal concierge service from the JDRF staff. 

We spent most of the two days prior getting ready.  We joked that the event should be called the Spandex Gala, as everything was covered in spandex.  Chairs, tables, artwork.  All spandex.  Granted, it looked pretty cool when it was done, but it was a lot of work.   We had 400+ patrons attending, lots of business leaders in the metro.  The honorees of the evening were Jeff and Mary Stier.  Mary is the senior editor of the Des Moines Register.  I’m not sure what Jeff does, or what their tie to diabetes was except that they were friends with someone who was head of the JDRF International Board of Directors. 

Last year I was a volunteer, and worked the whole night in the bank.  This year, Pioneer paid for tickets for Kim, Amber, and myself, so we were part of those 400+ patrons.  Amber got tasked with a few things to do.  She got to sell P. Buckley Moss prints during the silent auction period.  She got to hand roses and thank all the live auction winners, and she got to carry a puppy around during the live auction.  It was one of the auction items.  Let me tell you, that wasn’t the greatest idea (it was the staff’s idea, not mine).  Amber got very attached to the puppy.  As in cried when she had to give it up to the lady that won the bid.  We blame Mom, she won’t let us have a dog.  This puppy was a 10 week old “teddy bear” puppy, which is a cross between a couple other small dogs.  To say it was cute was an understatement.  It was a cuddler, always wanting to snuggle, and it loved to play tug o’ war with it’s blanket.  The staffer who was watching her for the past few days said she would trip over grass in the yard when she was running around.  

She got to sit on stage with Karli, who is a friend of hers who is also type 1, during the Fund a Cure presentation.  Fund a Cure is the part of the program where we just flat out ask for donations.  We start at $10,000 and go down from there to $100.  There is a speech or a video prior to that in order to get people to be motivated to open their wallets. 

 

The evening went pretty well.  There were a few mess-ups, a few things that just didn’t go as planned, and not everyone was bidding like we’d hoped, but we still raised over $354,000 and still counting.  With matching fund donations, we should still be able to beat last year’s total of $384,000. 

All told in the year and a half that we’ve been volunteering for JDRF, we’ve helped raise over $3 million to find a cure.  That’s what’s most important to me with all this effort.  That, and the two ladies in this picture (as well as the little boy at home who wouldn’t have done very well at this event!  Now off to the next event.  Stay tuned for more information!!

The Register has an article on twin boys, Austin and Grant Smith, and their fundraising activities.  These boys have absolutely no connection to diabetes, yet they decided they want to help kids with diabetes by raising money to find a cure.  They’ve raised over $10,000 in the last 2 years total, and plan on raising more.  We were there when the boys came off the roof of a Hy Vee after about 60 hour raising money.  They had so much energy and were so happy, it was hard to not be inspired.

I don’t think I’ve ever linked in Amber’s Quilt for Life.