Off the Dial

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Thank you, Davidson Elementary School

That’s it. Fifth grade is over and this fall, Benny starts middle school.  It’s going a tough time for me because Davidson Elementary School is pretty incredible. It’s a big reason why we moved to our neighborhood 13 years ago. It’s a unique award-winning public school; a place where everyone knows its motto, “Discover, Explore, Succeed.”

When Benny started Kindergarten, he’d already been living with type 1 diabetes for almost 4 years. He knew how to check blood sugar, use his pump, to speak up when he felt high or low and to carry his kit everywhere he went. But boy, were we nervous. He was the only T1D kiddo in the school at the time. I wish I could go back and tell myself how great the next six years would be. How the staff would embrace us, how they’d work to make Benny feel accepted and loved and how, while diabetes management would never be perfect, he’d always be safe and well taken care of.

DES Tigers on the Prowl (Kindergarten)

I’ve never mentioned where Benny has gone to school – frankly, with my old job on the radio, I didn’t think it was a good idea to make it public. I stand by that decision, but it means I’ve never been able to publicly thank the staff at DES. Let’s fix that.

My sincere thanks and appreciation to:

Mrs. Hoyer, for making the transition to Kindergarten so much better than I had feared. When I found out you’d already taught students elsewhere with T1D, I couldn’t believe our good fortune. It was a great way to start off and it set the tone for the next six years.

Mrs. Harrigan, for speaking up and telling the school that she wanted more help, as first grade teachers at DES don’t usually have an assistant. This ultimately resulted in a “floater” who helped many kids with special needs. By the time 2nd grade started, there were 3 kids with T1D in this school and 4 the year after. Backup is good.

Kathe Hyman, who was that “floater” assistant. We had some great texts & calls. One of my favorites was when I was going on with her about B being “high and hungry” at school while I was checking out at Target. Got a few strange looks!

Mrs. Smith, for going above and beyond. Benny’s big request in second grade was to buy lunch at the school cafeteria, which made us all nervous. While our district provides carb counts, they don’t always match what’s on the menu that day. Jen would occasionally text us pictures of Benny’s lunch and ask for a carb count. We got so used to group texting that we sometimes went off the rails (more).

Mrs. McLennon for being tough on Benny academically but understanding of his medical issues. This was the year that his migraines, which started at the end of Kindergarten, got more frequent and intense. Thank you for trusting him. And for working miracles with his handwriting.

Mrs. Ellis & Mr. Verlin, for embracing our push for diabetes independence in 4th grade. Benny no longer had to check in with faculty unless he had an issue. You both also jumped to fully embrace the BEAM Team, our big school JDRF walk team. Thanks for letting Benny pie you in the face. Sorry about the mess.

Mr. Verlin (again) and Mrs. Berlin for an interesting 5th grade year. The Verlin-Berlin combo was perfect for Benny’s last year at DES. This year was a little tougher for diabetes management, and we appreciate you helping out with a few more reminders. Tough balance of staying on Benny without making him feel like we’re treating him like a little kid. You walked that line so well.

Huge thank you to our principal, Mr. Jarrett. Here’s a great example of how he leads the school. Last year he and some of the staff participated in the Ice Bucket Challenge. He selected Benny and another student with T1D to douse him. He never announced why, didn’t talk about their diabetes. He told me later he just knew they’d get why it was important.

IceBucketChallengePicOur assistant principal, Kimberly Green for supporting us through all the fund raising and assemblies for the BEAM Team. Sorry we do everything last minute!

Mr. Smith for making our 504 meetings easy and painless. Our feeling on testing is that elementary school was the warm up act for later, a chance to learn how to make standardized testing with T1D the best it could be for Benny. Thanks for walking me through the process and encouraging me to write in anything we thought Benny would need

I think we had a full time school nurse for one year at DES. But we’ve had amazing support. Gayle Castongia & Lisa Parham at the front office are incredible. They help take care of all the kids. Over the years, I’ve worked the most with Gayle, who so obviously cares about Benny. She listens to and trusts him, which is invaluable.

Karen Jackson, our first school nurse, who trained several staffers on using Benny’s Animas pump. She made me comfortable right from the beginning.

Nancy Mullins, our second school nurse. She was there when Benny started getting those migraines. So awful (by the way, he still gets them occasionally, but it’s not quite as frequent). Nancy is just wonderful – and she still comes to our spaghetti dinner every year!

We hit the T1D jackpot with our current nurse. I’ve actually known Julie Allred for years, she has type 1 herself (although she has had an islet cell transplant, so it’s a bit different). I’m fortunate to call her my friend and all the kids at school are lucky to have her. Are you sure you don’t want to transfer to middle school?!

Julie and Benny

Our amazing nurse Julie at last year’s JDRF Walk

Mr. Rabb is our phys ed teacher who keeps the kids active and running and even helped us out with The Big Blue Test at school last year (more).

In all our years at DES I went on one field trip – at Benny’s request. The school never made me feel obligated to go and I always felt safe sending Benny. He went on the 5th grade trip to DC without me or Slade (we had a schedule conflict, the original plan was for my husband to go). Everyone looked out for him. It was an incredible feeling of love and support. And it was a great way for Benny to show that he could be independent and responsible.

I will miss reading diabetes books to each class and giving my educational and kind of silly talks (more). I’ll miss the JDRF Kids Walks and the Tigers on the Prowl and Arts Fest and Book Fair, the talent show, the holiday show and so many other milestones that make elementary school unique. I’ll miss that everyone in that school knows who my child is.

This week is bittersweet. It’s hard to realize we’re moving on. I’ve been joking all year about holding him back and keeping B in DES another year. I know middle school will be fine. I know high school will be fine and that he’ll be fine growing up with diabetes. Part of the reason I know that, though, is because of our experience to this point.

Benny’s received a terrific K-5 education, but it’s one that’s included two different sets of curriculum. The regular grammar school stuff, along with a diabetes education as well. I’m so grateful that in both, he was allowed and encouraged to “Discover, Explore & Succeed.”

 

Dream on 3

dreamon3A few weeks ago, I noticed a new account following me on Twitter. @Dream_On_3 says they make  sports dreams come true for Charlotte-area children with chronic illnesses, developmental disabilities, or life-altering conditions. Then I saw this month they made a dream come true for a child with type 1 diabetes and I really wanted to learn more. I got in touch with Shannon Griffin, their communications director:

Stacey: How did you come up with the idea for Dream On 3, what does the name mean?

Shannon Griffin: Our founders, Brandon and Elizabeth Lindsey get this question a lot! In a nutshell, Brandon and his wife felt called to give back. There is a magic in the world of sports that he wanted to bring to life for children with chronic illnesses or special needs. Brandon and Elizabeth are often asked if they have a child with an illness/special need that inspired them to do this, and most are surprised to learn that they don’t.  Dream On 3 comes from the idea of putting our hands in the huddle to say “Dream on 3…1, 2, 3, Dream!”

Stacey: What kinds of experiences are you providing?

Shannon: Each Dream Experience is custom designed for that particular child. Their sports dreams vary- some specific examples: “to meet any yankees player and hit a ball so hard it goes over the fence.” “To attend the opening NY Jets game and meet Eric Decker.” “To be a wide receiver for the Panthers.” Each Dream Experience also has a sendoff. The send off is usually a surprise, and we gather the child’s friends, family, and healthcare givers, at a location such as the child’s favorite restaurant. For example, last year we surprised Dream Kid Alex at her Friday night HS football game by driving a limo onto the field at halftime. Our biggest goal is to show that child that they have their own team/support system pulling for them.

Once a Dream Kid and their family have a Dream Experience, they become part of our DO3 Family. There are several Dream Kids and families that we get together with, celebrate milestones with, and come together for hardships with. What’s cool, is that these families are bonding with each other as well! For example, we went to Dream Kid Nicholas’s (who has autism) birthday party earlier this year and were amazed to find that two other Dream Kids (with autism) and their families were also there!

Last year we started the “Nicholas Thornton Scholarship Fund” in honor of one of our Dream Kids who passed away before his Dream. Nicholas believed that the power of education was the necessary tool to unlock any door. This fund was started a little over a year ago & we have raised $3,000 so far. When our Dream Kids come of age to apply for college, they are also eligible to complete a scholarship application.

Stacey: Why sports?

Shannon: Are you a sports fan or have you ever played on a team? There is just something about the camaraderie and overcoming your obstacles that is powerful. I like to answer this question with a quote from Nelson Mandela- “Sport has the power to change the world,” Mandela said. “It has the power to inspire. It has the power to unite people in a way that little else does. It speaks to youth in a language they understand. Sport can create hope where once there was only despair.”

Stacey: You’ve hooked up with some heavy hitters in Charlotte. Why are these partnerships important to you?

Shannon: With the idea of the community and local businesses coming together to make these Dreams come true, our partnerships are everything! Levine Childrens, The Arc of NC, Novant Hemby Children’s Hospital, DDR, inc, and Jeff Gordon’s are our 5 current referral partners. They are the ones bring us our Dream Kids. Other partnerships such as the Touchdown Club typically have similar passions that align, and we support each other in various ways. For example, we started our “Day Dream” program in hopes of creating positive sports experiences for children who may not otherwise qualify for a Dream Experience. This year, we have been able to bring two children from each referral partner to each Touchdown Club luncheon.

Stacey: Do you have plans to expand outside the Charlotte area?

Shannon: We sure do! We are in the beginning stages of our expansion to Atlanta. Once our Atlanta office is settled, there are several other cities we intend expanding to.

Stacey: I have a child with type 1 diabetes and while life can be difficult, it is manageable. My son will (hopefully) have a long and happy life. We tell him diabetes can’t stop him. Why do you think it’s important for these kids to have special experiences? This is not Make A Wish where the children have a terminal illness.

Shannon: I love that you said you tell your son that diabetes can’t stop him. That is exactly what we like to show our Dream Kids! I recently had the opportunity to help lead one of our Dream Experiences. The child is an 8 year old boy born with Neonatal Abstinence Syndrome, which resulted in him having a global developmental delay and ADHD. He struggles with behavioral issues largely as a result of feeling different and unable to do what his peers are able to do. I was able to witness first hand as he gained a confidence that his Mom said she had not seen before. He spent the day with the Yankees at spring training and they made him “one of the guys.” His mom told me that this was an experience she felt would change the course of his life for the better.

While we have Dream Experiences for children with life threatening/terminal illnesses as well, we open the opportunity up to other children who are not usually eligible for other wish granting organizations. These children have been given something that (most) other children don’t have to live with. In our Dream Experiences we aim to give them hope and inspire them to continue believing that they can do anything they set their mind to. And so far, our Dream Kids, and their families and healthcare providers are confirming that its working!

"Dream on 3!" Sam Parker and his family meet Jay Cutler.

“Dream on 3!” Sam Parker and his family meet Jay Cutler.

Stacey: How does someone qualify and apply?

Shannon: We are currently partnered with five different hospitals and/or organizations within the Charlotte, NC area (listed above). These five facilities, along with their social workers and administrators, are our source of contact and information for possible dream recipients. We must follow certain protocol in order to obtain our recipients as well as ascertain their medical eligibility to be involved in sports experiences. Therefore we are only able to receive our recipients and their information through these hospitals/organizations, and not through online correspondence. If a child receives services through one of our referral partners, they can speak with their child life specialist/doctor/caregiver about sending in an application.

Stacey: Where do you get funding?

Shannon: The majority of our funding currently comes from corporate sponsorships and in kind donations. On average, our in-kind donations cover about half of the expenses of our Dream Experiences. We have an annual Dream Gala which raises a large portion of our annual operating budget. This year, we have been working to get each Dream Kid a “Dream Sponsor,” where a company or organization donates $5,000-75000 to cover the portion of the Dream Experience that we don’t get from in kind donations. Other funding comes from various fundraisers, such as 5ks and our Annual Crossfit Charity. This year we are launching a 24-hours of giving campaign called #DO3BeginsWithMe. On October 1st, we will be asking donors to help us reach a goal of 1000 people to donate at least $10 before the 24 hours is up.

Thanks, Shannon! You can learn more about Dream On 3 here. Read more about T1D Dream Kid Sam Parker’s meeting with NFL player Jay Cutler (who also has type 1 diabetes) here.  Best of luck to DreamOn3 as they move forward with fundraising and helping more kids!

note: this interview was conducted via email and has been edited slightly for space.

George R.R. Martin Q&A

George R.R. Martin, the author of the books most people know better as HBO’s Game of Thrones, came to Charlotte this past weekend. He was the guest of honor at ConCarolinas. I’m a big nerd fan of the books so I decided to go and listen to Martin speak. Didn’t expect to get this close:

The view from my seat

My view at the opening program

Martin was sweetly worried that his hat was blocking my view (it wasn’t). We chatted for a moment, which was fun. You can see more of my Con pics here.

I’ve written up the Q&A that Martin did with fans.  There are spoilers; I’m not even sure everything will make sense if you haven’t read the books. Looking for more info? I recommend westeros.org.

I did not take notes on every question. Many simply consisted of, “I love your work,” or “It’s really exciting to talk to you.”  I use quotes only when I wrote down Martin’s response word for word. Everything else is paraphrased. The italics are my comments. Ok? Here we go!

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Q:  What about Elia & Oberyn Martell’s mother?  Will we know her name or hear more about her?

A: Maybe. She’s dead. There are a lot of other people to get to.

Martin talks for a bit here about how little changes made on the HBO show will have a big impact on the story there later. Made sure to let us know that he doesn’t control the choices the TV producers make. This seemed less about the Martells and more about getting that statement out early in the Q&A.

Q: Will you ever write a book about Robert’s Rebellion?

A: “Probably not.” There are going to be many more flashbacks and allusions to Robert’s Rebellion in the next two books. “By the end of this series you’ll know everything that happened” in the Rebellion.  A book about it then would not be very interesting.

Q: What can you tell us about a warg dragon rider?

A: There is no history/precedent for someone warging a dragon. There is a rich history of the mythical bond between dragon and rider.  There have been instances of dragons responding to their riders even from very far away (hmm) which shows it is a true and very strong bond. We will learn more about this. Keep reading (we hear “keep writing” from the back of the room).

This question was initially misheard as “a dwarf dragon rider,” which is just as interesting. I was hoping someone would press him to follow up on that, but they let it pass. Honestly, I’m not sure the moderator/host had even read one of Martin’s books. He seemed to be more interested in Buffy than in Bloodraven.

Q: How do you keep track of all your characters?

A: My brain! (laughter) I keep notes and I remember everything in my mind. But now I have no room in my brain for other things, like remembering who the f— you people are (more laughter). I’ve met many of you and already forgotten your names! Martin mentions of course he has computer files, other helpers (I didn’t write down if he specifically mentioned Elio & Linda at Westeros.org). As is widely known, I had a horse that that changed gender from book one to book two. Renly’s eyes were green then blue, so I just made them blue-green. Apparently, eye color is the worst. “I don’t even know why I include eye color! I can’t tell what color eyes people in the front row here have! I can just tell they have eyes!”

Q: Asks about a recent interview with Martin’s editor in which she said he submitted pages last year for The Winds of Winter.  “How many pages have you finished that you haven’t submitted?” (A few groans from the crowd)

A: “Some” (laughter)

Q: Very well-asked question about controversial rape depictions in the show and books. Questioner brings up the Jamie/Cersei rape scene on TV, then leads into question about Tyrion and Tysha’s last encounter. Was that scene written as a horrific rape? Questioner claims many of her friends do not see it that way.

This was interesting. Crowd seems very uncomfortable as this question is asked. It’s almost as though she’s stepping over a line many think should not be crossed. Martin’s answer is excellent and very long. He takes at least 15 minutes.

A: That scene is filtered through Tyrion’s point of view ten years after the fact. We don’t know anything about what Tysha is thinking, although it’s meant to be a brutal scene for everyone, Tywin included. No one enjoyed that incident.  We could only find out what Tysha was thinking or feeling if we see her again. We may.  Remember, and I’ve talked about this quite a bit lately, the concept of rape has changed over the years (i.e. there was once no concept of marital rape).

Much of the rest of what Martin said about rape in history and war has been covered very well elsewhere. I’m not going to do it justice here. He did mention he wrote a three page response to the New York Times, which they edited down, of course. You can read that article here. 

A (Martin continues): “I hate that word gratuitous” about the books, whether it refers to sex or violence or food. “What that really means is, that didn’t interest me so I skipped that part.”  I want “total immersion” for readers.  For example, I read the Victarion preview chapter at last night’s banquet and when I write about the sound of drums to help the rowers keep time, I want you to feel it. “Boom BOOM Boom Boom” (he hits his hand on the table for emphasis). If I mention a howl, I want you to hear it. OOOOWWWWOOOOO (it was quite a nice howl).

Q:  What is your favorite line in ASOIAF?

A: I can’t single out one line but my favorite passage is Septon Meribald’s speech about war in… what was it?  (crowd yells out Feast for Crows).

How did he forget which book? Martin has said he sees this as one long novel. He also tells us later that he sometimes writes chapters that end up in different books than originally intended.

Q: Who do you see yourself as in the books? Which character has the most of you in him?

A: I’d like to say Tyrion, but it’s really Samwell Tarly. Tyrion gets more action, he gets laid more (laughter) but I’m really more like Sam.

Q: What real history books would you recommend?

A: Apologies, I was next in line and didn’t write down the answer. Please enjoy this other article that seems to list quite a few of Martin’s favorite fiction and nonfiction authors 

Q: My turn! My question is about the Mercy chapter released just before the start of Season 4. As a book-reader, it was so satisflying to read that before watching the similar situation play out on the show (Arya refers back to Lommy while killing Polliver on the show, Raff in the books). As you’ve mentioned, you can’t control the show content. Are there any plans to release more chapters to stay ahead of reveals like that as we head toward season 5? Also, Arya seems much older than we might expect in that chapter. Does “Mercy” happen more than a year in the future from the end of Dance or is it just that Arya always seems older than her age?

A: Big pause from Martin.  That chapter was written about ten years ago and was first supposed to be at the end of Feast, then included at the end of Dance. But it seems to be a beginning more than an end, so it got moved around quite a bit. It was also part of the five year gap that was supposed to happen in the books so the children could grow up a bit. This worked well for characters like Arya and Bran, but not at all for Jon Snow or others. “Well, I became Lord Commander of the Night’s Watch five years ago. Not much has happened since…” (laughter). I worked that chapter quite a bit to bring Arya back to her current age. There is no time gap there (he doesn’t say exactly when it comes in the story sequence).  Remember, this is a preview chapter, I may still go back and rework it before it’s published.

I’m sure I’m projecting since this is my question, but Martin seems a bit put out that Arya’s age seems to be an issue here. Sort of, “I’m not rewriting that damn chapter again.” No real comment on whether he would release more preview chapters before season 5 and another reminder that he doesn’t control what goes into the show.

Q: Do you have any advice for writers?

A:  Keep reading (from the back – again – keep writing!). Remember to write for the right reasons.  I’m up here on the dais and you’re all down there in the audience and some people really just want to be up here. If you want to write to get attention, please realize it doesn’t work that way. You should write if you have a story in our head you can’t shake. You should write if the stories or the characters wake you up at night or follow you around during the day. If you have something to say, be a writer. Not for the celebrity of it. That doesn’t usually work out.

Q: Question about the Silent Sisters and allowance of noisy bodily functions.

A: Um, I don’t think that’s an issue.

Q: I hate the show, they’ve “crapped all over “ Jaime.

A: Oh well. I don’t think they’ve ruined anyone. It’s different.

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There were a few questions I missed. A very young girl, maybe 8 years old, was first in line and I was distracted by the fact her parents let her watch or read this series! The moderator did ask GRRM if he had a Targaryan coloring book for her. He didn’t, but the crowd seemed really interested in that (connect the dots of Summerhall)!

At another session, Martin read from The World of Ice and Fire (due out later this year). You can find an excellent recap at History of Westeros. I found it interesting, but my “I’m here for Star Wars” friend fell asleep. Really.

Whew! Bit of a different post for me, but I loved working on it.  My husband is just happy I found other people just as crazy interested in these books as I am.

#ConCarolinas – Charity

I went to ConCarolinas for the first time this year. Like a lot of people, I wanted to meet guest of honor George RR Martin, the author of the series on which HBO’s Game of Thrones is based. I’m also a fan of a lot of the shows they celebrate at SciFi conventions and I thought it would be fun to look at the costumes and hear a few speakers. I didn’t expect to be impressed by a local charity that’s playing pretty smart.

SecondHarvestMatt

Second Harvest as Once Upon A Time

Second Harvest Food Bank has a great booth. It’s fun but they also educate about the issue of hunger in our area. They put out collection bins and take in  monetary donations. I spoke with Matt Nooe (that’s him as Capt. Hook) about why they’re reaching out to the comic book crowd: