The Sleepover...

When the mother of Arden's friend recently inquired about having Arden spend the night at their house, I responded...

"That would be great, but we'll need to talk first..."

I did my very best to convey that the overnight hours would be unpredictable. I couldn't be certain if this random night would be stable and easy or random and exhausting... The family was up for the challenge. When I dropped Arden off at their home, I went inside to go over a few things. Honestly, with the advent of Dexcom's cloud service there isn't much for the host family to do besides understand insulin, bolusing, high BGs, low BGs, what those CGM arrows mean, the importance of a juicebox and of course... a real-world understanding of what could happen in a low BG situation and how to handle it.

In other words we just had a horrible frightening conversation that I tried to make sound very matter-of-fact, because mostly it is. The parents were, to their great credit, still on board and so I left with the understanding that I would help Arden via text during the evening and they would need to be reachable over night if Arden needed insulin or carbs.

What followed can only be described as "not optimal"...

After riding an unwavering BG during the late evening I had Arden take in a small snack to be on the safe side, her BG was in the 105 range prior to the snack. Small snack, no insulin - I was hedging my bets.Everything was going great until about 1:30 in the morning when her BG began to slowly descend. So I texted Arden to see if she would respond and she did, "Temp basal, off for 30 minutes should stop the drop" I told her. Not long after a text arrived from the host mom who could see Arden's BG on her phone thanks to the Dexcom Share, "Arden's BG is falling" - I told her that we handled it and that I would let her know later if there was more to do.

What followed was one of those low BGs that wouldn't respond to carbs, you know, the ones that even I am a bit unnerved by because they are unpredictable, require way too much in the way of carbs and nine times out of ten incur a huge rebound high - and well, all of that happened over the next 3 hours. The host mom and I said goodnight around 4:30 am.

The next day was mercifully a Saturday and Kelly stayed with the kids as I face planted on the first piece of soft furniture that I could find. 

A few days later I called the mom to thank her for all that she did to facilitate the sleep over. When I tried to say thank you she stopped me to say that it was her pleasure. She spoke about wanting Arden to feel welcomed and for her not to equate her type 1 diabetes with the sleep over. It was a lovely call. She went on to say that she didn't understand how intricate diabetes management was prior to that night and how she gained a huge appreciation for the disease. Then she offered to have Arden spend the night again "any time".

It was a lovely call... and as it turned out, a great experience. I guess unpredictable isn't always a bad thing...U

---

You Look Terrible!

It was Sunday night at 8 pm and I was looking for a place for Arden and I to sit down while we were waiting for my son Cole to finish at his baseball practice. 

"Arden, what does your CGM say?"

Turns out Arden would have no idea what her CGM was reading, because I din't pick it up from our kitchen counter as I promised I would. We were too far from home to go back, and just close enough that I wasn't scared to not have any of Arden's supplies - well, except for an emergency juice box that lives in the door of my car. I asked Arden how she felt, she said, "Fine", and then I went to my car to get the juice - just in case. 

When I walked back through the door I was met by three people, one after the other, neither privileged to the conversation that I had with the previous. I got two, "You look terrible!" and one, "Are you okay?" comments I responded to each by saying, "I haven't been getting enough sleep" - the rest of that sentence, that words that I didn't share??? ...since Arden was diagnosed  almost eight years ago. What I wanted to say was, "I haven't been getting enough sleep since Arden was diagnosed almost eight years ago". --

You see, Arden went to a sleepover the evening before and I lost my confidence (Through absolutely NO fault of their own) in the adult that was overseeing the party. Honestly, this person was well informed by me, knew what they were doing and completely onboard with the steps that the evening was going to present - I just got scared. 

Arden and I managed her snack and bedtime BGs, all via text messages, and all was fine with the exception of an elevated blood sugar that we were able to easily reduce. Around midnight I realized that she was not going to sleep anytime soon and so I told her that I would help her ensure a stable BG for bed. Arden fell to sleep a bit after 2 in the morning and I was comfortable that her BG would hold up overnight. Still, I couldn't go to sleep. I finally was able to relax around 4:30 and I slept until, wait for it, 7:30 - when Arden called to say that the hot tub they went into the night before caused her OmniPod to peel just enough for her canula to come out - something that has nearly never happened in our over five years of using the insulin pump. So, it's 7:30 in the morning, I've had three hours of sleep and I'm driving across town to change an insulin pump. The good news? I was able to watch an entire season of 'Breaking Bad' the night before, but the bad news is that I'm still having trouble bouncing back from the lack of sleep, many days later.

I snapped a photo of myself earlier today after getting my haircut (I have a meeting with my publisher tomorrow), I wanted to share the picture with my wife who is away on business, we set up private photo sharing site when one of us travels so everyone can see what's happening on the 'other side'. The kids and I post pics and so does Kelly, it's a great way to not feel to far from home - but man, do I look tired and old in these photos. 

I need a month long nap, and apparently... I look terrible.

In Need of a Vacuum Cleaner Recommendation

My life really is strange sometimes. Yesterday I was in a Manhattan studio for a Lilly Diabetes satellite media tour where I was interviewed, along with Amy Hess-Fischl, twenty-nine times by different television and radio stations from all around the country. It was a whirlwind day that began at four in the morning. We gave one interview right after the other for almost seven hours, it was a really fun day of talking about sleepovers, diabetes management ideas and the Lilly/Disney collaboration at Spoonful.com/type1. 

The bright lights of the big city didn't last too long for this stay-at-home dad. When I arrived home yesterday my son was sick, the laundry was piling up and Arden had homework to do. I got back into my routine pretty quickly and this morning things were back to normal here at home.

I found the kitchen counter this morning after the kids left and gave it a polish, then I thought I'd do a bit of vacuuming before I had breakfast but something terrible happened. My closest comrade in this life, my partner, the yin to my yang - she passed away suddenly. I don't know what I'll do without my little buddy, but I guess I'm just going to have to press on. Sure she sucked at her job and I never liked the yellow jacket that she wore, but Eureka... she tried. 

Anyway, here's some pictures from yesterday's media tour and audio from one of the radio interviews. After you take a look, if you have a good one, can you please leave a vacuum cleaner recommendation? I need a sturdy upright that does wood and carpet and I like a nice wand for the corners and such. Not too expensive but I'll spend some money for a vacuum that'll last. Thank you!

Audio - Radio Interview with WIBC Indianapolis 

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.