Oh Lilly: Coco, Sleepovers and Me

Remember back in August when I gave away ten copies of 'Coco's First Sleepover' and I told you that sometime way in the future, I'd be participating in a Lilly Diabetes press junket to talk about sleepovers and diabetes? Well, time sure does fly because I'll be leaving Monday for The Big Apple, Metropolis, site of the 1964 World's Fair, the city that never sleeps... if I can make it there... Okay, you get it, I'm going to New York City.

On Tuesday, September 24th I'll be participating in a satellite media tour for Lilly Diabetes. I arrive early in the morning armed with only my knowledge of being the parent of a child with type I diabetes and my urbane wit. Throughout the day I, along with Amy Hess Fischl, M.S., R.D., L.D.N., BC-ADM, C.D.E., will answer questions as they are asked by the following media outlets. List subject to change.

TV:

WNEM/Flint-Saginaw, MI

WBTV/Charlotte, NC

WTVG/Toledo, OH

NEWS AROUND AMERICA

CONN TV

LOUISIANA HOMETOWN

KOLC/Reno, NV

KHQA/Quincy-Hannibal, MA

WSAW/Wausau-Rhinelander, WI

KAZT/Phoenix, AZ

WDTV/Clarksburg-Weston, WV

WGGE/Springfield-Holyoke, MA

Radio:

WDIS/Boston, MA

Main Street Radio

WCBC-AM/FM/Washington, DC

WFMY/Greensboro-High Point, NC

KLTF-AM/Minneapolis, MN

KXFN-AM/St. Louis, MO

WIBC-FM/Indianapolis, IN 

KOGA-AM/Denver, CO

WXGM-FM/Norfolk-Portsmouth, NH

WARM-AM/Wilkes Barre-Scranton, PA

WYYZ-AM/Atlanta, GA

WCAP-AM/Boston, MA

 

I'm excited to be helping Lilly and Disney to get the word out about their diabetes themed children's books and grateful that they thought of me when the opportunity arose. All that's left is to find out if I fit into the jacket that I wore on Katie Couric.

Lilly will provide transportation to and from New York (car ride), a stipend for expenses and one nights lodging. The Coco books are free through your Endocrinologist, just ask your doc for a copy (they can get them through their Lilly sales rep).

Little People, Big Problems

It's easy to look at children and imagine their lives as simple. It's easy to think that their concerns couldn't be as deep or strongly felt as yours. Who knows why? Perhaps because they are smaller or maybe they seem protected simply because of their age? I did a Google image search on the word 'innocent' and the majority of the images that it returned were of children, I think because that is how adults think of them. 

Most parents go to great lengths to protect their children from the world for as long as they can. I always imagined that it would be another child, the Internet or some other outside influence that I could not predict and not defend against that would show my kids the world for the first time. Maybe it would be an image online, a hateful thought or the brutality of another - I didn't know. I do know that I expected this to happen, but not this soon and not this way. Children should get to learn about life's truths slowly, not all at once and not so young.

Arden was recently invited by a friend to a sleepover party. She has slept away at her Aunt's house many, many times in the past and I have a rather foolproof system for managing BGs during these times so we didn't think twice about allowing Arden to attend the party. I have to admit that I imagined that we very well may hit a speed bump during the evening. I considered that Arden may get uncomfortable at another's home, that party food may mess up BGs to the point where they become difficult to manage and I was even ready for her to just not have a good time. I thought any, all, or some of these possibilities may prompt Arden to ask to come home.

But it wasn't any of those things that caused her to text me and ask to be picked up.

I didn't ask why she wanted to leave when she texted, I just told her I'd be there and came as soon as I could. Arden met me at the door with her sleeping bag and pillow when I arrived, she even tried to walk past me to our car as soon as the door opened. I stopped her and said that we could leave but first I wanted to understand why she wanted to go. We went back into the house, put down her things and retreated to the backyard where we could speak in private - we sat next to burning fire pit and I asked her why she wanted to leave.

In the minutes that followed I had the most mature conversation with my daughter that I've ever had. She wasn't uncomfortable at her friends home, that's not why she asked to leave. It wasn't because she was having difficulty managing her blood sugar, it was 115 when I arrived and she had been at the party for over four hours. It was none of the things that I expected and nothing that I could offer a concrete fix for. Arden was scared of her diabetes. Not the management of it, not of dying, she wasn't specifically afraid of any one aspect of her disease... just afraid of the unknown that it brings to her.

One of the best parts about being a kid is feeling invincible and never once having to consider that anything in the world can fell you. It's that gift that allows kids to jump from trees without pause. They never think that anything bad can happen to them. Diabetes took that from Arden. She wasn't worried about a low or a high, not about a bolus or an alarm. She was in fact, completely confident that the plans we had in place were going to keep her safe, healthy and happy - but she couldn't plan for the unknown and that concern was too much for her to bear.

I thought about reassuring her and then trying to get her to reconsider but instead, I looked at Arden and did the only thing that made sense. I gave her a hug and told her how proud I was that she called me. I reinforced that there isn't anything that she can't tell me, and I made sure that she knew her feelings were safe with me. We finished speaking, played with the embers in the fire for a few minutes and then went home empowered, not defeated. 

My wife will be very excited when she reads this next part because I think it means that the almost twenty years of effort that she has put into me, may finally be paying off.

As a man I always find myself wanting to fix things for the people I love, but often that inclination means telling people that their feelings aren't valid. "Don't be scared" and "This isn't problem" serve to diminish feelings and I'm really proud to tell you that I didn't say anything like that to Arden as we spoke. I'm even more excited to say that as I listened to how Arden felt, I really understood her feelings and I didn't have the desire to bend and manipulate the situation to accommodate those feelings. I just let her feel, and I listened. It took me until I was in my forties, but I think I'm starting to get it. I'm not here to fix anything, my being here fixes things.

Book Review: Raising Teens with Diabetes

Amazon

This is the review that I posted online for Moira McCarthy's new book -- Moira is a friend and the book is from my publisher but please don't let that diminish the review... I mean every word of the it. The book is marvelous!

I found my diabetes crystal ball and it’s Moira McCarthy’s new book, ‘Raising Teens with Diabetes: A Survival Guide for Parents’. My daughter (diagnosed with type I diabetes at age two) is only nine years old, but the topics Moira covers are the exact ones that keep me up at night as I try to imagine what my daughter’s teen years will bring.

‘Raising Teens with Diabetes’ is written in the voice of a mother but with the skill of a seasoned writer and each page makes you want to read the next. I genuinely can’t remember the last book that taught me so much without preaching or making me feel like I was in school. The thought of my daughter’s teenage years still give me pause but now with Moria’s help, I know what will be coming our way and I have a much needed head start on understanding how my family can handle those issues.

I really appreciated how the book was structured. It contains personal stories that are told with heart, reflections from Moria’s now adult daughter and easy to follow, common sense approaches to life with type I diabetes that reveal a lifetime of amassed wisdom. I am a thirteen year stay-at-home dad, a seven year caregiver to a daughter with diabetes and I’m putting Moira’s book on my shelf so I can reference it for the next decade.

Hey FDA, what about diabetes!?

Please take a moment to read diaTribe's message (below) to the FDA and then click on the link to their petition that asks the FDA to include diabetes in their upcoming 'patient meetings'.

Lend your voice and help to push this petition to 5,000 signatures so that our children's needs can be considered at the highest levels of decision making.

I hope you have a fantastic holiday weekend, thank you for your support!

Best,

Scott

From diaTribe:

"The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.

But not diabetes. That is unacceptable.

Four “slots” remain open (view the current list), and we want the FDA to add diabetes to its meeting docket for 2013.

According to the American Diabetes Association, nearly 26 million Americans have either type 1 or type 2 diabetes, and an additional 79 million have prediabetes. Those numbers are also increasing each year – the CDC estimates that if current trends continue, one in three US adults will have diabetes by 2050.

No one disputes that diabetes is one of America’s – and the world’s – most serious health epidemics. In 2012, more than one in five total US healthcare dollars was spent on diabetes, totaling $245 billion, and the government covered 62% of those costs, meaning everyone is paying for this epidemic. Despite growing needs, research dollars have also leveled off.

New therapies need to be investigated, tested, and brought to market, and as part of that process, the FDA must understand the daily challenges that patients face.

We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.

Our voices need to be heard.

Please sign this petition to urge the FDA to sponsor a patient meeting focused on diabetes – and the sooner, the better.

Thank you very much."

Join The Strip Safely Tweet-In, August 21st at 8pm EST

Strip Safely is headed by my friend and DOC legend, Bennet Dunlap. In my opinion, when Bennet says something is important for me to pay attention to... it's important. I hope you can send some tweets tonight! - Best, Scott

Taken from www.stripsafely.com

On Wednesday, August 21st beginning at 8pm Eastern, we are staging a StripSafely Tweet-In, asking Congress to send aides to the upcoming Diabetes Technology Meeting on September 9th. 

Please join us and add your voice. 

We’ve made it easy. Simply go to the Let’s Tweet page of Stripsafely.com, find your state and click the link listed next to your senators and congressmen. We’ve already created the message – you just need to tweet it out. (Don’t forget the leadership at the top of the page – we can all tweet to them!)

Then, please, get creative and send additional positive messages to help the diabetes community build friends in Congress. Include the hash tag #StripSafely. Feel free to use this link to our letter in your tweets.

Diabetes isn’t partisan about whose life it impacts. We shouldn’t be partisan in seeking support for our health.