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

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.

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.

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.

The conference started on Friday night and went until Sunday afternoon.  Friday night was basically a social event around the vendor tables, where you get get updates on technology and fill up a bag full of giveaway stuff (pens, notebooks, meters, bags, backpacks, etc.).  The sessions started Saturday morning with a keynote speech.  Amber and Austin get put into age-specific groups, but since Austin is only 5 and for insurance reasons they have to keep the 5-and-unders separate from the 6-9ers, he gets frustrated and doesn’t get much out of the conferences, because it’s basically day care, and they just sit around and play.  So Patty asked if they could take him for the day Saturday, and they wound up having him for a sleepover on Friday night as well.  This made us a little nervous, since he’s never slept away from us before, and he doesn’t sleep well away from home as it is.  But he wound up doing fine.  They were going to a kid’s bike marathon at my nephew’s school in the morning, right after his hockey practice.  Austin liked hockey practice, but he wanted them to shoot more goals.  He didn’t do so well at the bike marathon, he’s not much of a biker to begin with, and this was a long ride, and I warned my sister that he would struggle.  He did.  But he had fun.  In the afternoon my nephew had a birthday party, so Austin got to go along to that.  It was at a bowling alley, and it’s been a while since Austin has bowled on anything except the Wii, but he did fine.  The most interesting thing from the day was that one of the items in the treat bag from the party was a whoopee cushion.  That was a BIG hit with Amber and Austin.  They are both at the age when that kind of humor is the funniest thing, I guess.  Everything became a fake fart.  The whoopee cushion didn’t last the weekend, though.  Austin kept trying to get a bigger and bigger noise from it, and when he put it on the floor and jumped on it with both feet, it just exploded.  You would have thought we grounded him for life or something, the way he cried.  Sheesh.

The conference topics were really good, everything from proper nutrition to understanding advance pumping techniques.  It’s amazing how everything ties together when you’re pumping.  The different types of food are digested at different rates, which can cause you to need to bolus differently, as sometimes you dose a combination bolus to give a longer dose because of a high fat content, the extent of which is managed by the insulin duration that you have set, which also ties into what you need for the basal rate.  It’s like having a balance with about 5 or 6 arms on it of different length that you have to find just the right amount for, and where someone is changing one of the other amounts while you’re working on figuring out another.  Just when you think you have it balanced, something comes along to knock it out of whack. 

One of the cool things about CWD is the ability to connect to the staff and the instructors.  They just hang around like anyone else, meeting everyone and chatting.  That’s really cool.  Like on Sunday morning, we were just sitting at our table eating breakfast, when Dr Peter Chase and his wife come and sit with us.  If you don’t know Dr Chase’s name, you probably know his work, since he’s the author of the Pink Panther books.  He’s also part of one of JDRF’s closed loop/continuous glucose monitor research test.  He’s been a ped endo for decades.  He was the presenter on several sessions over the weekend.  And we had breakfast with him!  We found out his type 1 son is an executive producer for the Animal Planet.  Really nice guy.  CWD is one of the best outreach and support group organizations I’ve ever seen.  We learn so much at these conferences, they are definitely worth going to.

Saturday was our JDRF Hope Gala, the theme of which was “Here’s looking at you, kids”. Amber was one of the kids asked to help, and a couple of months ago she got her picture taken in movie star fashion. JDRF had people do up all the kid’s hair, and the kids dressed up in tuxes or their best dresses and they had their photos taken. We also had to provide her signature, and the picture and signature were used as part of the program, like an autographed head shot. JDRF also taped a red carpet interview with each kid, and that was played during the Gala. It was really cute, and if I can get a copy of the video I want to post that, too.

So we got all dressed up and went to the party!

Last spring, Mary Beth Goeser, who is our MiniMed pump rep (and a really great lady who also has type 1 diabetes), asked if Amber wanted to help her on a sculpture that she wanted to do for the Gala.  It would be included in the silent auction.  Mary Beth took Amber out to Saylorville Lake to look for wood to use for the concept she had in mind.  They found what they were looking for, and a couple weeks later we all went back out there to take a few pictures.  Amber went over to Mary Beth’s house to help paint it and put it together.  To the left is a picture of Amber at the Gala with the final product. 

The base reads “Adversity is a terrible thing to waste”, and here is the story that Mary Beth wrote up to go with it.  It’s really cool, and Amber wanted us to buy it.  Very much so.  But we had a problem.  Mary Beth did a sculpture last year that sold for about a $1000, and this one was valued at half again more than what that one was.  Plus, it was a really cool piece that a lot of people were looking at.  When I warned Amber the night before that we may not be coming home with it because it might go for more than we could afford to pay for it, she started crying.  Nothing like a little pressure, huh.

Luckily for us, and unluckily for JDRF, the patrons to the Gala weren’t doing a lot of bidding, so we wound up being the one and only bid on the sculpture.  So, we now have a 4 foot wooden sculpture at our house, and we need to find a place for it.  Swing by if you want to get a better look.

One of the neat things about the Gala is that you get to meet with all kinds of people you don’t normally get to meet.  I met the Head of Medicine at Methodist Medical Center, of which Blank Children’s Hospital is part, which is where Amber’s endocrinologist’s office is.  I met CEOs and other executives of many of the companies in cental Iowa.  I get to see other families that are dealing with the same disease we are.

But this year we had a special treat. Shawn Johnson, the current US and World gymnastics champion, and Olympic hopeful from West Des Moines. What a sweetheart. She’s 15 years old, and Amber’s got a good 6 inches on her. She’s amazing, for everything she’s been through, she seems surprised that people think so much of her. For everything she’s done, she was most happy to carry around the Brittany Spaniel puppy that got auctioned off at the Gala.  She was so happy to just be a kid, and that was neat to see.  I don’t like it when people have a little success and then let it go to their heads.  She is totally not that way, she’s as normal a kid as can be.  That says a lot about her and her parents and what they value, and I made sure to thank them.  Color me very impressed, and our family will be cheering her on come the next Olympics. 

The Gala itself was fun.  Open bar during the silent auction, I had a few glasses of pino grigio, and spent a lot of time socializing.  We had a ton of cool things to bid on, including this really neat oak dining room set that was made by an Amish family whose son was diagnosed 3 years ago.  He called JDRF out of the blue and offered it.  A lot of things sold for much less than they should have, so the total was about 20% lower than what we’d hoped.  The videos of the kids that I mentioned above were played during the live auction, and a dad of one of the families that we’ve known through our support group got on stage and told their story.  I love events like this and I love to hear other people’s stories, but I hate it at the same time.  They get me so excited about JDRF and finding a cure, but it’s so hard to see Amber’s picture come up on the screens, and it’s even worse to hear other’s get so emotional telling their story.  I don’t know if I could ever tell our story in a setting like that, I have a hard enough time telling it in groups of 10 or 20.  I hope I get asked sometime, but I don’t know if I’d be able to do it.

Here is the full set of pictures from the evening, there are a couple that I didn’t link to yet.

Amber and I finished off the evening with a bit of dancing.  We danced to 4 or 5 songs before we called it a night.  That was a lot of fun, and seeing the smile on her face and knowing she forgot about diabetes for a precious few minutes made it all worthwhile.

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.

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.

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!!