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!

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!)

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.

We, the undersigned, people with diabetes and those who love them, do hereby petition Pop Culture in America to… get a clue.

Where are the people with diabetes living healthy, normal lives? I’m tired of Chekhov’s Diabetes (see Steel Magnolias, Panic Room). We need more stories like True Believers which features a protagonist living with type 1 diabetes which (shocking spoiler!) does not become a plot point.

Disney tries and sometimes they get it:

 And sometimes, they have to pull an episode of a top show because it gets the diabetes facts so wrong.

I view diabetes in my kids’ media choices the same way I view Jewish characters. I don’t really care if they’re featured, but it’s a nice surprise when they pop up (I’m looking at you, Ron Possible & Isabella Garcia-Shapiro). Whether it’s done with humor or more seriously, if those characters aren’t portrayed accurately, what’s the point?

I amheartened by a new campaign called Picture This by the nonprofit Entertainment Industries Council.  It  ”aims to inspire more – and more genuine – media representations of people living with diabetes.”

I can sign on for that.

Today’s topic: “Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion)”

This is a genius topic and I’m emailing Benny’s endocrinologist today so he can read all the blogs. We’re very lucky to have a great relationship with Dr. V.  He’s known Benny since diagnosis so he’s been with us since diapers and pacifiers.

I really like that Dr V and his wife have three young children. I feel like that helps him understand the craziness of kids. When Benny shows up with wild hair or mismatched socks and is cracking up while pretending to hide under the table, I don’t feel like I have to explain anything. That’s just normal (it is, right?).

So what would I hope our doc wouldn’t see?  TCBY toppings.  Filthy baseball hands that Benny insists are clean enough to test. Saturday mornings when we sometimes don’t check BG until he’s been up for an hour (or two).

For the first time, we invited Benny’s classmates to the Charlotte JDRF walk.  When I spoke to Benny’s class about diabetes in September, he wore our team t-shirt. All the kids wanted to learn about it and come with us (although one girl was very worried she’d have to walk all the way to the event, about 30 miles away!).

With busy schedules, predicted rain and a 7:30am meet time, we were excited that some of his friends really did come join us. Benny’s Brigade was bigger this year, and more meaningful. These are the friends who see Benny check his blood sugar every day during class. Who look out for him when he’s low and who don’t think there’s anything weird about diabetes. It’s just something their friend has.

Benny’s Brigade 2013

More pics on my Facebook page.

As always, it was a huge walk. The rain held off and about 7000 people raised close to a million dollars. Here’s the write up from our local newspaper.

Wanted to also post this video I made at the Rowan-Cabarrus-Iredell Counties JDRF Walk. A smaller event, but no less important or emotional. I MC’d this year and met a little girl about the same age as Benny when he was diagnosed:

So when Benny was diagnosed in 2006, I was a bit skeptical of the new technology our doctor talked about.  Called the artificial pancreas, he described it as an insulin pump, a continuous glucose monitor (CGM) and a computer.  They’d work together to control blood sugar automatically, just like a working pancreas.  It sounded great, but I was wary of getting my hopes up.

Six and a half years later, I think I’m ready to let them start to fly.

I recently got to check in with Tom Brobson. He’s JDRF’s National Director, Research Investment Opportuities and he’s also been testing the artificial pancreas for years. That’s the computer part he’s holding.

Tom spoke with me while he was in Charlotte for our JDRF walk kick off.  If you’re not familiar with the artificial pancreas, you may want to skip down to the video (which shows more of his experience) and then listen to the interview.

My interview with Tom Brobson:

I’m embarrassed to admit this after years of being in the diabetes world, but I always thought a CGM had some sort of tubing. Newsflash: it does not.  This became clear in my questions to Tom and he was pretty surprised at my misunderstanding.   He almost ripped off his shirt (ok, he rolled up his sleeve) to show me the CGM. No tubing, sits almost flat on the skin. Here’s a good site, if you’d like to see it or learn more.

I’ve heard from some people who’ve seen the video that they think the setup is pretty cumbersome for the people in the study.  They’re wearing the smartphone strapped to their arms? Keep in mind, the first artificial pancreas setup included a computer. No real mobility. Then they moved on to a backpack. Now it’s handheld. I’m not worried about that part.

Just keep moving forward. As Tom says, we’ll get where we’re going.

Are we there yet? (sorry! couldn’t resist)

]]> http://www.staceysimms.com/interview-artificial-pancreas/feed/ 0 http://www.staceysimms.com/party-like-a-doctor/ http://www.staceysimms.com/party-like-a-doctor/#comments Tue, 02 Apr 2013 17:48:42 +0000 Stacey Simms http://www.staceysimms.com/?p=551 Recently, we celebrated at a family friend’s Bat Mitzvah. Along with the religious ceremony marking a 13 year old becoming a responsible part of the Jewish community, there is often a big celebration. This was to be a night time party with food, dancing, the works. Our diabetes plan for an evening like this is very permissible as long as we know what’s going on.

I walked Benny over to the kids’ table, which was covered in little boxes of candy. We agreed he could have two. We checked out the kids’ buffet and decided how many carbs were probably in the pizza and chicken fingers. Math done, it was time to have some fun.  Benny likes to hit the dance floor and stay there for as long as he can. He can go a bit high with all the party food, but dancing can make him low. As always, it’s a difficult balance.

An hour or so later Benny wasn’t feeling well.  A quick check showed BG was 400. What happened? We went through what he ate and bolused for.  Turns out, he’d had a Sprite. Aha! That was something we’d agreed to but he’d forgotten to let us know or bolus himself.  There’s a lot going on at these parties, especially for an eight year old, so I wasn’t too surprised about a rogue soda.

We corrected, but he wasn’t bouncing back easily and I could tell he was sad to miss out on some fun.  I looked up and spotted our host’s brother, Andrew, across the room. He has type 1! My friend had talked about him before and I’d met him earlier that day, but had completely forgotten until that moment.  I told Benny, “See that guy over there? Go show him your pump.” Benny looked at me funny for a second, but then he got it and ran right over.

What a great reaction!  Andrew, who is also a pediatrician, took his pump out of his pocket and high-fived Benny.  They even had the same Animas pump.  I could see them talking excitedly to each other, then they ran upstairs to the party photo booth and took crazy pictures like this.

Thank you, Dr. Andrew Lubell, from the bottom of my heart.

It’s hard to express how much something like this means to me and my family.  You took my son from being sad at a celebration, to being happy and right back to having fun. You gave him something joyful to consider about diabetes.

And you rock that neon mohawk.

I’ve written about diabetes and parties before, and since then we’ve given Benny even more independence. I’m comfortable letting him stay with new friends after a quick chat with the parents and he runs around our neighborhood playing outside all the time. But birthday parties are just different. Crazy sugar treats and usually tons of activity.  I’m thankful that our Chuck E Cheese days seem to be over, but cool laser tag or trampoline parties still wreak havoc with blood sugars.

From a different party, but still yummy

This past Sunday, at one of those indoor inflatable places, Benny went low after 45 minutes of play. The number wasn’t that bad (80), but he was probably on his way lower; he felt just awful. It took about ten minutes before he felt like jumping back into the party and about a half hour before he was really himself again.

That’s why I’m there, right? But I was feeling sorry for myself, so I sent out a woe-is-me tweet: “Always a little sad to be the only mom staying at the bday party (thnx #diabetes) but glad I was here today. #low”

Almost immediately, though, another mom (@mad_livvy) responded: “@staceysimms you’re not the only mom we are all just at different parties “

Different parties. Same situation. I love that idea.

The idea that I’m not the only one. I wasn’t even the only one at that hour on that Sunday.  I now had a great picture of other moms and dads of children with special needs, staying at parties, but hanging back. There if needed, but a bit out of the way. Doing what it takes to keep our children safe and happy.

Even when we don’t know we’re together, we are.

And there’s almost always cake.

This was a recent night that started with persistent high blood sugars around dinner time. I changed Benny’s inset at bedtime and did the every two hour check for a while. Brought him down around 3am. I was very happy we didn’t get the usual bottom-out low.

Luckily, this doesn’t happen very often. Also, Benny is my neat kid and I had to warn him not to clean up before I took this picture! He doesn’t remember much of what happens on these overnight checks and he never understands why I always leave a mess. Collateral damage, kid.