Off the Dial

We Meet Nick Jonas!

Yes, that’s my daughter in the blue with her arm around Nick Jonas and my son on the end, holding the basketball. We were part of this lucky group earlier in the week. I should probably explain why the kids all have towels…

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Charlotte-area children with diabetes and their siblings meet Nick Jonas

Nick Jonas has been filming a movie around Charlotte.  It’s been fun around her to follow where they’re shooting and hear about the Jonas sightings.  You probably know Nick is part of the  the Jonas Brothers, who got their start on the Disney channel and are huge on the pop-rock scene. You may not know Nick was diagnosed with type 1 diabetes at age 13.

He’s very active with diabetes advocacy and agreed to do a meet & greet for some local kids. We got the word and I was sworn to secrecy until the big event at Carowinds. They were filming this week at the Camp Wilderness area of the park.

The PR folks brought us to the front entrance of Carowinds, so they could take a big group picture with Nick in front of the sign. We waited for 10-15 minutes for him to show up and then… it started to rain. Wasn’t bad at first, so we just huddled under some snack-table umbrellas, but all of a sudden the skies opened up:

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Not quite the Carowinds picture they were hoping for!

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 Under the Cinnabon awning – the door’s locked!

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 Thank you for letting us in!!

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Meeting producer Michael Helfant

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Helfant’s daughter has type 1 diabetes. Group hug with the D-parents!  That’s JDRF’s Kelly Vasta beaming on the right.

The Carowinds people were great. They gave us all those towels and brought cars around to drive us to where Nick was waiting. I actually thought the whole thing would be canceled, but they pulled it off. They introduced Nick to the children in the room while the crew was finishing  lunch. It was very brief, but he was very gracious and spoke to everyone.

Lea asked him about the movie; he said he wasn’t sure she would be allowed to see it because he  thought it might be PG-13. She asked me to look into that and showed me her signed cell phone case (!). Benny asked when Nick was diagnosed, and they chatted about their respective ages then and now. Then it was over and time for him and the crew to go back to work.

It was a fun, crazy day. Our souvenirs got soaked and nothing went exactly according to plan. But it was great to meet someone who goes through everything our kids do. – all the poking and checking and carb counting – who also happens to be a celebrity. I think days like this help make the diabetes crud just a little bit better.

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The bike Nick Jonas rides in the movie.  We  weren’t sure the girls were going to let go. 

Thanks to JDRF Western Carolina Chapter for inviting us along and to Ron Deshaies from Treasured Events of Charlotte for sharing his wonderful pictures of the day.

D-Blog Week: Freaky Friday

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? 

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If diabetes has taught me anything, it’s that everybody has something.  We’re all dealing with a health issue ourselves or within our families and it can be difficult for other people to really understand what our “something” is like.

I can’t even think about the disease “swap” in this blog post prompt. Let’s not start ranking who’s got it the worst. We know a terminal illness in a child, in anyone, is an almost incomprehensible  tragedy. But hearing, “At least it’s not (fill in the blank),” doesn’t make anyone feel any better.  Of course I’m grateful that Benny has diabetes and not something worse. But I’m not grateful he “only” has diabetes. I don’t want him, or any child, to “only” have any chronic condition.

I will say that dealing with diabetes has made it easier to explain other people’s issues. That lady with an oxygen tank? Well, you know how your pancreas doesn’t work so well? Neither do her lungs.  Man in a wheelchair? He needs extra help just like you do.  Even something simpler, like my seasonal allergies or my daughter needing glasses, help make us more aware.

I’ve learned to listen more and to ask how parents are doing, not just the child. I’m really sensitive to childcare issues and I hope I’ve helped out when I can. I’ve learned to ask for help, to teach my friends to care for my kids and to learn and be sensitive to their children’s needs. I’m not perfect, but that’s sort of the point.

Finally, while I love the Diabetes Online Community (DOC), I’ve also learned that there’s no substitute for real life interaction and support. The best is when the two worlds come together – I’m really looking forward to meeting so many who’ve participated in Diabetes Blog Week this summer. I’ll be at Children with Diabetes Friends for Life Conference for the first time this year.  Hope to see you then!

D-Blog Week: Accomplishments Big & Small

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small.

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Snow days are a big deal around here. In North Carolina, we get flurries maybe once a year if we’re lucky. My big accomplishment came during a real snow, a couple of inches of the good fluffy stuff, and a day off from school.

The kids wanted to go outside and play down the block where all their friends were. They’d be sledding on a small hill and they didn’t want me there. I didn’t want to go. I grew up in New York and I’ve seen enough snow.

Benny was five and in Kindergarten. I was just beginning to let him go without me to friends’ homes, after making sure the other parent knew the diabetes drill. I couldn’t imagine letting him play outside unsupervised. But looking at my son and daughter, jumping up and down excited about snow, I couldn’t imagine holding him back.

I took a deep breath and gave them the plan. They could go for one hour. If Benny didn’t feel well, he was to ring the doorbell of the nearest neighbor and have them call me.  Lea didn’t have to play with him every second, but she had to make sure he was still with the group. If she didn’t see him, nearest neighbor, call me.

I packed a juice box and a fruit roll-up into Benny’s jacket and sent them on their way. It was one block, but it felt like my kids were off to climb Mt. Everest.

(I should add, we live in a great neighborhood. We know everyone on our block and we look our for each other’s children. It’s not Pleasantville, but it’s pretty close. If that wasn’t the case, I’m sure the plan would have been different.)

After one hour, I started thinking worst case. I felt like an idiot for letting them go. I was just about to start walking down the street when the phone rang.

Benny had followed instructions!! He started feeling tired and cold so he rang the nearest doorbell and my neighbor called me.  I drove down to get him (Lea wanted to stay out some more), checked his BG and took him home. He was safely in range, he was just “normal” tired from sledding.

Since then I’m still nervous, but I let him go. We tell Benny diabetes shouldn’t slow him down or hold him back. So we can’t either.

(But, please, put a juice box in your pocket!)

D-Blog Week: Memories

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. 

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No doubt, Benny’s diagnosis was the day that changed our lives. But one of our most memorable days living with diabetes came just a few weeks later.

Benny was diagnosed December 2, 2006 when he was almost two years old. We went on our first big trip, to my parents’ house in Florida, for the winter break. While there, we did all the usual kid stuff like swimming, trips to the playground and we were pretty proud of how we were all handling this change. Then we went to Wannado City.

Wannado City was an indoor role-playing amusement park. It’s closed now, but it was a cute concept. Your child could be a firefighter, a fashion model, lawyer, TV reporter, whatever they wanted to do (get it?).  They were issued bank accounts and money and you went from store to store pretending to do lots of grown-up stuff. We got there in the morning, had lunch (one of our first post-diabetes encounters with a food court, thank you Calorie King!), and were debating whether we’d be able to get our little guy to nap while his older cousins played.

Slade and I looked over at Benny and suddenly, he stumbled. Well, there you go, he obviously needed a nap. I picked him up and we brought over the stroller. Slade wanted to check Benny, but I was reluctant because he was already closing his eyes and I didn’t want to wake him up. But we were trying to be good and keep to our new diabetes schedule, so we checked him.

He was 32. I’m pretty sure that sleepy kid I was holding wasn’t napping, he was passing out.

All I had left in my diaper bag was a fruit roll up. No way we were going to get him to chew & swallow. Slade ran over a snack stand and grabbed a bottle of juice. Luckily, Benny was awake enough to drink it and he swallowed it down. (We did have our glucagon injection kit, but I’m thankful that we didn’t have to use it)

This was our very first time with a scary low. We made sure my mom could take care of our daughter and we left with Benny. I called our doctor who reassured us he’d be fine. He told us to test frequently and take it easy the rest of day. Benny wanted to eat right away (our first experience with post-low hunger) and soon he was content, munching on some snacks.

I’ll never forget turning around and looking at my 23-month old, strapped into his car seat, happy as can be for that ride home. I was amazed at the power of the low to take him down and then the power of simple sugar to bring him back. Our emergency supplies were going to be juice and candy? It seemed absurd.

Six years later, we’ve had many other lows. Benny knows a lot more about how to manage his diabetes and we’re sadder but wiser as well. But after all this time, I’m still amazed at the power of sugar – it’s our best friend and worst enemy.