Fifteen-Year-Old type I told, "We are not a hospital or charity"

Many years ago when I was in high school my best friend was diagnosed with type I diabetes. Mike took shots, carried insulin and needed to eat when he said that he needed to eat. Aside from those considerations, he never really spoke about having diabetes. We hung out together constantly, had meals, went on double dates; saw movies and the rest of what you would expect friends to do together. I was around Mike and his diabetes almost all of the time. 

Yet I didn’t know much about it.

Mike had so many diabetes related decisions to make and even though we were often together when he made them, I was lost when Arden was diagnosed. As the days after her diagnosis slowly turned into months, I never found myself thinking, “no problem, I remember this from Mike...”.  Nothing that I ever saw, heard or experienced with my friend prepared me to thrive or even merely exist with type I diabetes and I was as lost as the next person when it came to really understanding any of the intricacies of type I. It’s my experience with Mike that taught me to be patient with people who don’t understand diabetes. Sure, I still get annoyed and I certainly wish that the average person knew what Arden may one day need them to know in an emergency, but it’s just not reasonable to expect people who don’t live with type I second by second to understand it in a meaningful way.

Yesterday morning I saw a FaceBook post that Mike ‘liked’, it told the story of a fifteen-year-old boy with diabetes who was turned away at his local 7-Eleven when he asked the cashier to help him. I was instantly struck by the story and reached out to the boy’s mother, Katie Franklin. I asked Katie to share her families experience in the hopes that it would promote advocacy and awareness.

Tommy was riding his bike Monday after school when he experienced low blood glucose and because he was without money or supplies, he smartly went into a nearby 7-Eleven to ask for help. Katie tells me that Tommy asked the cashier for a fountain soda or candy because he has type I diabetes, his blood glucose was low and he feared that he was going to pass out. Katie says that Tommy doesn’t normally get so low that he feels this way so he knew that he was in a dire situation. The clerk, who was at a disadvantage because of a language barrier, declined by saying, “No”. The boy persisted and even showed the cashier his Medtronic insulin pump as proof of his need but the reveal of the pump didn’t change the clerk’s mind. Tommy left the store, rode his bike about a block and then called his mother at work; she rushed to him and found Tommy lying on the ground next to his bike. Tommy ate and felt better in time.

Katie drove directly to the 7-Eleven and asked to speak with the manager. Katie said that the manager told her that “we are not a hospital or charity” and when she tried to tell him that all her son needed was a twenty-five cent piece of candy and that it may have meant his very life, the manager walked her down the candy isle to show her that they don’t have candy that inexpensive. Katie, realizing she wasn’t getting anywhere with the manager, got the number for the corporate office and left the store. She was so incensed that she called the office from the store’s parking lot and spoke to the District Manager who promised to make sure that his stores understood type I better.

Katie was surprised when the owner of the 7-Eleven called her the next day because it wasn’t the DM that informed him of the disaster at his store. The owner found out about the incident the same way that I did, on the Internet. It’s important to be clear that the owner of the 7-Eleven was horrified at how his employees treated Tommy and his mother. Katie tells me that she found his apology to be sincere and that she is comfortable that he will take steps to educate his employees. The owner explained to Katie that he owns a number of 7-Elevens and that he will make certain that they all understand what diabetes is and how he want’s his employees to react when someone shows signs and symptoms. He even agreed when Katie suggested that a donation to the JDRF would go a long way toward making her feel better about what had transpired.

I know that Tommy’s story is horrifying to those of us who live with diabetes. It’s frightening to the parents of children with type I and I can only imagine how infuriating to the adults reading this who live with diabetes - but that’s not why I wanted to tell Tommy’s story.

I want to tell this story for two reasons. First because I know, thanks to my friend Mike, that everyone can’t understand type I diabetes but also because I think that we as a community are helped when we are remind periodically of that fact. I can personally see how the cashier, whose grasp of English and no experience with diabetes may have been confused when Tommy made his plea. I can’t however find a way to excuse the manager’s insensitivity and apparent lack of human kindness. I was heartened to hear from Katie that the storeowner understood what she was saying to him and offered what Katie characterized as an appropriately contrite apology. I say heartened because the owner’s reaction tells me that this story can find people who will be changed by it, that this story can make advocates out of people who previously didn’t understand type I diabetes.

The second reason that I think that Tommy’s story is valuable for us to hear is because of the reaction that some people online felt comfortable thrusting in Katie’s face. Please understand that her story was met with a ton of loving support but there were still some people that took the opportunity to chastise Katie for what they considered to be poor management of her son’s type I. What Katie said to me regarding those harsh comments needs to be heard by the parents of younger children living with type I. People told Katie that her son should never be without glucose and money and that it was a failing of her parenting that he had neither with him on Monday. Not having supplies probably seems foreign to the parents of small children because we tend to always have supplies with us but Katie told me a story that sounded all too possible and I can’t say that it won’t be all of our stories at some point in our lives. Tommy was diagnosed when he was thirteen and he’s only been living with type I for two and a half years. Katie has tried giving him money for emergencies, but he spends it. She’s tried to give him candy to carry, but he eats it... Tommy even likes the taste of glucose tablets so they get consumed as well. Katie is traversing a rocky road with her son and I can’t understand or condone anyone that would harshly judge her efforts. It can not be easy to help a fifteen-year-old boy come to terms with what diabetes demands of him. Shame on anyone who felt pompously that they knew better and then took it upon himself or herself to chastise Katie. 

It’s annoying yet understandable when the world at large doesn’t understand our lives but it’s a totally different feeling of sadness to learn that people can so easily, especially in a community like the one we all share, turn on another.

If we can’t give each another the benefit of the doubt and extend the kindness that we all know our lives need and deserve, how can we possible hope for that kindness and understanding from the populous at large?

I know that this was a long and heavy post so I want to end it with a story about Tommy that I think we can all appreciate and cheer for. Tommy diagnosed himself with diabetes. At thirteen years old he took to the Internet to search for his symptoms. Tommy told his mother that he wasn’t feeling well but before they could get to a doctor and driven by what I can only assume was the discomfort that a BG of 795 brings to a person, diagnosed himself during a school day and then posted on FaceBook that he thought he had type I diabetes. His mother saw her son online when he shouldn’t be, read his post and took him to the hospital where Tommy’s self diagnosis was sadly confirmed. I love the idea of a confident thirteen year old advocating for himself with the tools that he has at his disposal, almost as much as I admire a fifteen-year-old boy having the nerve to walk penniless into a 7-Eleven and ask for help. I think that Tommy has a lot to look forward to in his life, not just as a strong advocate for himself, but I have a feeling that his story will create advocates where there previously were none and renew the passion in those already advocating so hard. Thanks to Tommy and Katie there are a few less people in the world today who don’t understand.

For those around the world that aren't familiar with 7-Eleven, it is a convenience store chain that is mostly franchise owned and operated. Neither I nor the family is advocating any kind of protest involving the store or the company. We are both just trying to spread awareness and this story is a perfect example of why that is so very important. We are all only a few random occurrences away from being Tommy, we are all just a moment away from needed a stranger to be kind and to understand. It's up to us to bring awareness, because no one can or will tell our stories the way that we can.

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.

Left, Left, Left, Right, Left.

Arden's right hand knows a secret that her left hand doesn't, but it wants to tell...

I know that there are days when you worry about your child's ability to adapt and grow with type I diabetes - I worry too. That's why I loved it when Arden came to me recently for help becasue she couldn't figure out how to test the fingers on her right hand. Arden is right-handed and the other day she came to me and said that she knows she needs to vary the fingers that she uses for testing more frequently. The problem with that... she can't seem to hold the lance properly with her left hand.

This was maybe some of the best news that I heard all summer, here's why. First, it means that she really does hear the conversations about site rotation and she understands them. Second, she hit a speed bump and wasn't afraid, embarrassed or nervous to ask for help. Last of course, she is taking ownership of her diabetes, slowly, as she is prepared to do so. Diabetes on her terms, I love it!

The rest of the tale isn't as story book. I too wasn't able to hold the lance properly left-handed and after two tries she, a bit annoyed, took it from me and then proceeded to similarly fail at the task. So while the core issue was left unresolved, all that the issue shed light on is now out in the open and cause for celebration. That celebration only resides however, in my head and on this blog, two places where Arden doesn't have access. I did tell her that I was proud that she was thinking about rotating and we spoke for a few minutes about the fact that it would take some practice to use her left hand for the task, but I didn't make a big deal about it, not to her. I am however, celebrating in my head. This was a great moment and a clear sign of maturity and understanding.

Seven Years Later

It's 2:45 in the morning on August 22, 2013 and I can't sleep. I'm tired but not in the way that I remember tired feeling seven years ago. Seven years ago when I felt tired, I'd shut my eyes and go to sleep, the process felt natural and without repercussion. Seven years later, I forget what it's like to feel refreshed. I sleep when I'm able and stay awake when it's necessary. Tonight I'm up fighting with a few spoonfuls of a bedtime snack that seems to want to keep Arden's BG at 250. 

I checked Facebook, perused Twitter, read your blog comments, made notes for myself so I won't forget to do some important things tomorrow and so now I'm downstairs writing to all of you. It's 2:52 now and in a few minutes Arden will have type I diabetes for seven years.

I remember the emergency room doctor coming into the room, he looked tired and he didn't make eye contact immediately upon entering. I knew he was going to tell us something terrible, I could feel it. Kelly and I sat next to each other in a palatable pool of sadness, waiting for him to confirm what we already feared was true.

The next two years were among the worst that I've ever experienced, but today, seven years later, I'm mostly okay and Arden is great!

It's exactly 3 AM now, the clock turned while I was looking for a passage from my book to share with you. I looked up and saw the time move forward when I heard, and I can't believe this just happened, when I heard Arden's DexCom beep twice at exactly 3 AM. That seemed like a sign until I realized that thing beeps all damn day... Anyway, I could search my mind all night for the right words to explain what I've learned in the last seven years, but I think I already found them when I wrote my book...

People can make claims about how to navigate personal turmoil, and there is a literal ton of books to help you get through life’s terrible moments. I only have one piece of advice, and I can lend it to you with the full knowledge that it served me well.

Don’t stop and don’t give up.

Some days will bring the weight of the world to you—don’t stop. There will be times that those days turn into weeks—don’t give up. There is a wonderment of understanding on the other side of your struggle, and it’s worth getting to. These days and weeks that seem as though they exist only to torture you and the people that you love—they teach. The pain strengthens you and the dings in your soul aren’t as deteriorating as they initially seem. In the end, they are reshaping it, and it’s up to you to decide what shape it will take.

I am contractually obligated to say that excerpts from 'Life Is Short, Laundry Is Eternal' were used with the permission of Spry Publishing. Actually, I'm supposed to ask them before I use the text but they're a good bunch and I'm betting that this would be okay. 

What I Didn't Know: 2013 Edition

I don't know if this has ever happened to you, I suspect that it has... I thought that I stretched myself too thin.

I've spent the last few months thinking that I needed a break, but recently I realized that what I really needed was to keep going. I heard someone say recently that you know when things are going good for you when you don't have any time to enjoy them. That when you have time to sit back and smell the roses... the roses are just about to die, and if you let that happen... they don't ever bloom the same way again. That sentiment pretty much sums up my year and it's message to keep planting roses makes a lot of sense to me.

I've spent these last few weeks trying to have it all, I wanted the roses and the time to smell them, but you know what, it doesn't work like that. The joy comes from planting, tending and nurturing the roses. The energy to do it all again, that comes from watching others enjoy them. 

It took me a while to figure out how to make my new life fit into our day, but I I have it now, I know what to do. Before April of 2012 I had a system and it worked, but when I decided to write my book I added a lot of new moving parts that at times were overwhelming. All of the rest of my life still existed, but suddenly I had a lot more responsibilities and I wasn't always able to balance them with my existing life. Now that I've lived through all of this, I have a much better plan for moving forward - a new attitude of sorts. It's time to pull a few things off of the back burner and get them front and center where they belong and time to see what else lies ahead of me. For the first time since I started writing Life Is Short, I understand how to do that. I understand that I have to stop smelling the roses so I can plant more, so that others can smell them... because that's who I am. 

First up, Arden's Day Gives. I admit it, I couldn't simultaneously learn about starting a charity and write a book for the first time. I tried, but the burden of that froze me last year and so I pushed the charity's 501c3 paper work to the side. Know that my decision to do that broke my heart, but moreover, I was embarrassed to not have the ability to accomplish both. What hurt most was that I could tell it was an obtainable goal that I lacked the knowledge to obtain. 

Arden's Day Gives is my start up charity whose goal is to help offset the cost of insulin pumps and continuous glucose monitors for children who want but can not afford them. It's in it's infancy, incorporated with the state but not yet a 501c3. This Friday night a few of my friends are holding a Beef and Beer to help support their softball team and ADG. So, if you are in the Bucks County PA area and want to help some aging guys play competitive softball while helping to get Arden's Day Gives off the ground, I have the beef and beer for you!

Moving forward for the rest of 2013 and beyond... Arden's Day Gives is getting going, I'm writing another book and rededicating myself to getting the laundry folded on the day that it comes out of the dryer. Armed with the benefit of this past year's wonderful life lessons, it's time to put what I've learned to good use. I can't wait to see what happens next and I can't wait to find out what else I don't know - so I can keep growing.