Helping Children with Diabetes Gain Independence
So a while back the people who make the OmniPod asked me if I would like to contribute to their new blog called Suite D. I said yes, but I had one caveat that I honestly never thought that they would agree to - but they did!
See, Insulet wanted me to write a series of posts about how we use text messaging to manage Arden's type I and I wanted to tell that story here on Arden's Day. My caveat? I get to repost my writing here after it has run on their blog. This is not something that many websites would agree to because they understandably want their content to be fresh and exclusive -- I want to give major kudos to Insulet for agreeing. You may be wondering what I said to get them to allow me to do this... Well, it was simple really. I couldn't write for them and give them my full effort if I felt like my writing was taking something from Arden's Day and taking something from you. I was honored to be asked and I wanted to take the freelance work, but not at the expense of my readers here. So we struck a simple, and I think, very reasonable deal. I get to repost after the piece has been live on their site for at least thirty days. A BIG "way to go!" from me to Insulet for being so cool and blogger friendly! Here's part 1 of my 6 part series on gaining independence through technology.
Part 1: Helping Children with Diabetes Gain Independence
I recall being handed syringes in the hospital and thinking that they seemed so very lightweight. I guess that I had never held one before that day and didn’t know what to expect. They felt flimsy in my hand and I struggled to understand just how these bits of plastic and metal were going to keep my daughter healthy.
That was my perspective only a few days removed from our two-year-old daughter’s type 1 diabetes diagnosis in August of 2006. Today, I realize that if Arden had been diagnosed fifty years earlier those little needles would have likely looked and felt like something from a science fiction movie.
Gaining Independence through an Insulin Pump
The technologies that help to improve the lives of people with type 1 diabetes are nothing short of amazing – and the ways that we use that technology are ever expanding and evolving. I love the idea of utilizing what we have available today to the fullest, but I always keep an eye on the future and wonder where it will take us.
The first time I saw the table full of insulin pump samples at our endocrinologist’s office, the OmniPod insulin pump jumped right out at me. I was first struck of course by the tubeless nature of the device, but quickly, my mind raced with the possibilities of how the manufacturer could continue to adapt and blend advancements, because of its self-contained design. I told my wife, “I like that one. When they improve it we won’t have to wait to benefit.” That’s what I liked most about the OmniPod – it felt like the future and I couldn’t see a limit to the possibilities of where it may go.
Here we are many, many years later and I find myself about to talk to you about technology and how it has improved my daughter’s life – really my family’s life – and given her more independence. But now I’m going to talk about another piece of technology that we all have in our pockets, something that when used correctly will take you to the future and free you from restraint. Let me explain…
Giving Our Children More Freedom with Diabetes
Our children go. They go to school, to their friend’s house, to a movie – they are constantly going. Parents of children with type 1 diabetes are conditioned to fear the feeling of their child’s natural desire to just go. We want our children to have that leisurely feeling of course – that carefree, run-out-the-back-door feeling that we enjoyed as children. I don’t want to think about what could go wrong on a school bus ride. I hate telling my daughter she can’t visit a friend’s house because their parents don’t have a working understanding of diabetes and I am willing to bet that you feel the same.
Freedom and independence for our children with diabetes – but how?
How Technology Can Provide More Independence
Arden was missing class each time she visited the nurse’s office at her school. Before recess, before gym, before lunch, after exercise and every other time diabetes came to call, Arden missed class time. It was only five minutes here and three minutes there, but by the end of the day those minutes added up. After a week, they were hours and by the end of the year, they were days. Days of learning, days of socialization and days of her life – gone.
If only I could just be there, stand in the corner so I could invisibly wander to her desk and oversee her insulin dosing decisions. I just needed to be able to whisper in her ear that she didn’t need all fifteen carbs to correct that low blood glucose. I only needed to be there for a second, just like when she is home with me. Then it hit me… I can be.
Arden was in her bedroom one Saturday afternoon when I needed to know what her blood glucose (BG) was. Instead of walking upstairs I sent her a text message that said, “Test your BG please.” A few moments later I received a return message: “134.” I was with her, but I wasn’t. We were managing her blood glucose with only a momentary pause to her activity; this was the minimal interruption that I dreamed of. If only she could have her phone with her at school…
I’ll be back soon to tell you how I explained to the school what I was planning for her diabetes management, their surprising reply and all the goodness that’s come since.
Please know that I was compensated for my writing in an amount that would be considered standard for freelance blogging. My family pays for Arden's Omnipods with insurance and out of pocket cash. My writing for Insulet has no impact on my opinions or the information that I share here or anywhere online.
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.
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.
What is StripSafely?
StripSafely is the initiative to bring awareness to the issue of test strip accuracy. I'm hoping to help bring attention to the StripSafely efforts by helping to make you an advocate for the cause. You are not being asked to make a donation.
If you could just take a moment to read more about the efforts and then follow StripSafely on FaceBook, Twitter and on their website, you'll be supporting people who I completely trust to help the diabetes community have a voice in the fight to change the current levels of accuracy acceptability. I am not affiliated with StripSafely.
Issue - From the StripSafely website:
At a recent public meeting the FDA acknowledged1 that there are some 510(k) cleared blood glucose (BG) meters and strips that do not meet the accuracy standards for which they were approved. There is currently no clear course of action to insure people with diabetes are using blood glucose strips that meet regulatory requirements.
The rest of this statement can be found at this link.
Who, What, How?
StripSafely is an ad hoc Diabetes Online Community (DOC) collaboration to help the general public understand that there are inaccurate blood glucose test strips. We hope to get folks involved to do something about that. By something, we mean write the FDA, elected officials, and the news media.
The StripSafely campaign was created by Bennet Dunlap who is the site admin. Scott Johnson, Christel Marchand Aprigliano, Kerri Sparling, Cherise Shockley and Kelly Close joined early on and contributed their skills. The campaign is not affiliated with strip manufacturers, the FDA, or any other remotely organized group.
The real work of this project is being done by community members who write letters and blog posts as part of this campaign. See the social media section for these efforts. We would love to feature your letters and blog posts. That’s why there is a form on every page’s sidebars to help you share what you have written.
Thank you for taking the time to find out about StripSafely!
Book Review: Raising Teens with Diabetes
AmazonI 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.