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

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.

The actual conference was great, too.  The first day was focus groups, which pretty much meant that the pharmaceutical and therapeutics companies were trying to get feedback from their customers.  That night at the pool We were all swimming and I had my blue JDRF bracelet on, and a little girl said, “Hey, I have one of those, too!”  So we introduced ourselves to her and her family.  Rebecca and her sister Eliana and their parents are from Virginia, and Rebecca is the same age as Amber.  The girls hit it off right away and we would up spending a lot of time with their family.  They are very nice and we’ve exchanged info with them, hoping to keep in touch until we see them at next year’s conference. 

The next two days consisted of sessions of various topics, the most interesting of which were a research update from a doctor at the NIH, information on carbs and preventing lows during sports and exercise, and sessions by a counselor from Animas who talked about how to talk to your child about diabetes.  Amber was in a group of kids around her own age, so she got to play with Rebecca, Eliana, and they met another girl, Maya, who is from Vancouver. Here is a picture of the 4 of them! We got a lot of great information, met a lot of people, and had a lot of fun.  Next year’s conference is at Disney!