Amber’s Awesome Angels

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.

We helped out at a car wash organized by some friends of ours today, with the proceeds going to Camp Hertko Hollow.  The money is used to help pay for kids who otherwise couldn’t afford it to get to camp.  That’s pretty cool, helping out kids that way.  We all think it’s so important for kids to participate in this camp that spending half a Saturday washing cars.  When I was in the National Guard, there was a common bond between my fellow soldiers, that “brotherhood”.  Diabetics have the same bond.   They all share the same experiences, have the same problems, and talk the same talk.  That’s why things like Camp Hertko Hollow and support groups from JDRF are so important, because it gets kids together. They’d raised about a thousand dollars by the time we had to leave, and still had a few hours left. The money they raised was going to be matched by some local businesses. Two thousand dollars is enough to send 3 kids to camp. Just from a car wash. That’s cool.