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.
The DX: The Diabetes Experience asked me to write a letter to the teacher of a student who has type I diabetes. They editor didn't give me any more direction then, "We'd like a Dear Teacher' piece". Well, I wrote a letter in the tone of the real life conversations that I have with Arden's teachers and I posted a link to it this morning on Facebook and now I'm posting it here.
I'm very touched by the warm responses you have been leaving on Facebook, you guys rock!
"I wish I could like this more than once!!" - "I loved it!" - "Great piece!"
In a perfect world, the parents of children living with type 1 diabetes wouldn’t have to leave their kids for a third of every day with people who don’t understand the intricacies of diabetes the way that we do. I guess, though, that if the world were perfect, we wouldn’t be talking about this at all. <read the rest on The DX>
Disclosure. I was compensated for my writing on The DX (A blog from Sanofi Diabetes) but I was not asked to change or have any opinions regarding Sanofi or their products, of which Apidra (Arden's insulin) is one. Trust me, if that Apidra goes haywire... I'll be the first one to speak up.
Update on Wednesday, August 21, 2013 at 10:58AM by
Scott Benner
I can't tell you just how great this felt to get...
I always think of anniversaries as a perfect time to reflect about how far we've come. It doesn't matter if you are talking about a wedding anniversary or an amount of time since something has happened, once and a while it is valuable to reflect and take a moment to feel not only what has transpired but what you've learned.
On August seventeenth of 2007, the second day that this blog existed, I was preparing to make a video with my kids when Arden's BG suddenly and significantly, dropped. Since my first inclination about the blog back then was to educate, I made the difficult decision to ask my son to turn on the camera as I was tending to Arden's low BG. More difficult was the task of later editing the footage. The video is not pleasant to watch, it's terrible in fact but if you have ever wondered what it was like to try and get a three year old whose blood glucose is dangerously low and falling to take in carbs, well, this sure does show what that is like.
Before you watch the video, I want you to please take a moment to read another post about low BGs that I wrote in June of 2011. I think that the two juxtaposed like this will leave you with more then enough hope if you are still struggling and if you happened to be past this part of your life, I think these two posts together will allow you the benefit of seeing how far that you've come. Either way, be proud of yourself.
I hope that this post serves as a source of hope to families that are newly diagnosed or still struggling to find calm... read on, I think it will.
Last Friday we were packing up and getting ready to enjoy a sleepover at Adventure Aquarium to celebrate Arden’s birthday. Arden invited two of her girlfriends and one of them arrived at our door as I was testing Arden’s BG.
Minutes before, Arden tripped while walking in her room and when I asked her if she was okay, she responded, “I feel dizzy all of the sudden”, we had just changed her DexCom an hour before so it wasn’t reporting BGs. As we made our way to the kitchen where her OmniPod PDM was I went over the afternoon in my mind and I couldn’t imagine that she was low.
Test strip...
Knock at the door...
Blood drop...
“Hello, I’ll be right with you...”
Beep... and her blood glucose is 28.
So, there is a woman that I barely know in my foyer, sleeping bags and pillows all over the hallway and Arden’s BG is 28. Not just 28 but very unexpectedly 28 and she was still in the middle of a bolus and I expected (no DexCom) that she was falling.
This next bit is where you take hope from the story...
I didn’t flinch. No elevated heart, no sense of panic, I wasn’t upset and as a matter of fact I maintained a calming conversation with the woman in my house as she considering panicking.
I explained the situation to Arden, shut off her basal and she began eating and drinking. 64 grams later all was normal again - except, it never wasn’t normal. A sad statement perhaps that this all could be a normal part of someone’s life but what the hell, it is... When it was over and the mother left, I felt like I was ten feet tall. In the past I did my best to stay calm in situations like this (they don’t happen often thankfully) but I was doing just that, trying to stay calm. That is, in the past I wasn’t calm, I was frightened and I was trying to maintain my composure and stop Arden from having a seizure. I was scrambling to stay ahead of the situation.
Last Friday, I was calmer then George Clooney on an old episode of E.R.. Not ‘old’ George Clooney, the one that is starting to look like he doesn’t belong with those young girls... young George Clooney, back when he was bedding down those nurses in the break room. I was all suave like that, except instead of nurses, I was rockin’ the juice box and I’m fairly positive that the bottom of G.C.’s foot is more handsome then I... However, other then those differences, I was exactly like that. ;)
I finally have my 10,000 hours of practice and one day you will too. Moments that now may feel like they are happening at 100 miles an hour will slow down to a Matrix like kung fu speed and you’ll just move through the slow motion around you, completely in control. I bent the spoon baby!
Okay, I’m out of odd movie and TV reference so I’m going stop.
Now you can watch the video from 2007... Be prepared, it is tough to watch.
In two more days Arden's Day will be six years old and on the 22nd, Arden will be living with diabetes for seven years. These years have at times been nearly impossible to traverse, there have been countless low BGs and moments that I was sure that I couldn't live through... but I did, we all did. Arden is fine, I'm not crazy, Kelly and I are still married and Cole seems pretty normal (as normal as a thirteen year old can be). Diabetes hasn't stopped us, in fact, and I say this with great deference to all the bad that it brings... I think it's made us better. More tired maybe, but stronger and more resilient. Today, as I reflect on all that has happened to us I can see how far we have come. I no longer feel the fear from that video when I watch it, just the triumph of living through it. My advice is simple, reflect today and give yourself the credit that you are due.
I'm not embarrassed to tell you that more than a few times a year I fall sound to sleep on our sofa while trying to watch television at night. I am however embarrassed to admit that a handful of those times I am so stone cold tired that my wife can't wake me up to go to bed. This is apparently my signal to Kelly that I need a night off from BG patrol and she always, no matter how tired she may be, picks up the reigns and carries on.
One thing these nights seem to have in common, I always wake up a bit disoriented around 4 am, usually with pillows pilled on top of me acting as a blanket.
Last week when this happened to me I woke on schedule around 4 am, stumble to the second floor and went directly to Arden's room to check on her. I picked up her DexCom, saw that she needed a small temp basal and reached for her bag but it wasn't where I expected it to be. I found my phone, realized I didn't have a flashlight app and proceeded to download one from the App Store.
This is the exact moment when all of this would get funny
There I was standing in the doorway of Arden's room, leisurely browsing the flashlight apps because I didn't want to download one that I would regret later - which is of course ridiculous. My hair was standing straight up, my shorts were twisted about 180º counterclockwise around my waist and I was incredibly thirsty, but in my exhausted daze I couldn't let go of the feeling that I didn't want to download an inferior flashlight app. This process took a few minutes and then I set out, armed with my new flashlight, to find Arden's bag that holds her OmniPod PDM, MultiClix lance, test strips and all of the rest.
I quick scan told me that it wasn't in her room, "must be with Kelly" I thought. It wasn't. So I headed back to the first floor where I finally found Arden's bag under a pillow on a chair in our living room. I walked back upstairs, opened the bag and found that it only contained test strips. I laughed to myself and I made my way back downstairs. I won't bore you with every detail of the next twenty minutes but sufficed to say that the contents belonging in that bag could not have been more spread out throughout our home.
Our poor dog Indy looked quite cross when I finally gave up on my new flashlight app and turned on all of the lights in the living room. When I finally set the temp basal rate and went to crawl into my bed, I realized that I never folded the laundry that I put on the bed earlier in the day. One more trip around the second floor netted me a laundry basket large enough to hold the clean clothes... and I was finally off to dreamland.
If only I wasn't wide awake from my scavenger hunt...
Life expectancy for an American male is seventy-five, I just turned forty-two. What that means is, barring any unexpected endings, I have thirty-three years left.
Yesterday Cole and Arden took me to see a movie for my forty-second birthday, when we exited the theater it was pouring rain. I told the kids to wait by the door and I would bring the car to them. I sprinted to my car, it was perhaps seventy-five yards from the door. As I was running I passed a gentleman in his fifties, he was walking to his car and getting drenched in the process. Cole and Arden jumped in when I arrived at the door and Cole said, "You are faster then people would expect". I smiled at his kind, if not slightly backhanded shot at my weight but all I could think was, "Ten more years and I'll be that guy walking".
It's funny but after my mid twenties I never thought about my mortality once, I was carefree about my age until Arden was diagnosed just after my thirty seventh birthday. Now, everything that aches, my right knee, both of my ankles, my throwing elbow, the stiff neck I can't shake - all of it makes my think about Arden or more specifically, about Arden's diabetes. Lately, I've been extra tired. I'm not ill and nothing has changed about my schedule, I think that seven years of late nights full of blood glucose wrangling is catching up with me. Last night I tried to get some sleep. I told myself that Arden was going to be fine, gave myself permission not to sleep with one ear open and it worked great. I woke up this morning around seven thirty completely refreshed with a streak of warm sunlight on my face. The first thing that I saw when I opened my eyes was my beautiful wife. I laid in the quiet for a few minutes and thought about how pretty Kelly is and how lucky I was that she said yes on the day that I asked her to go on our first date. But that glow only lasted for a few minutes.
A muffled BEEP, BEEP rang out...
My heart sank into my stomach, that sound is the unmistakable cry of Arden's DexCom after it's fallen onto her bedroom floor. The beeping made me feel instantly sick for two reasons. First, the only way that thing could have fallen is if it had been vibrating all night and second, two beeps means Arden's BG is over 180. All night plus two beeps, equals this isn't going to be good.
I walked into Arden's room and tested her BG as she slept. The night before Arden's BG was falling before bed, she had a few slices of an orange and a cookie to combat the fall and her BG found a balance at 89. Thirty minutes later that number was 95 and her DexCom indicated that the number was drifting, ever so slightly up. I remember thinking, "Good, I'll take a 120ish number tonight, I'm exhausted". It was not twenty minutes later that I gave myself permission to pass out, and I did. I slept all night like a baby while Arden's BG slowly rose over the next two hours before it settled in at three hundred and ninety-one. I don't have words for how 391 makes me feel.
Am I too old to care for my daughter properly? Too tired, too out of shape? Have the health and food choices that I've been ignoring over the past two decades caught up to me, is this my penance for those... I haven't exercised regularly since my twenties, I hardly eat and I haven't had eight glasses of water in a day, maybe ever. Funny thing is that up until recently it didn't matter because nothing could stop me and I could power through anything. I've sat up until two, three, four, even five o'clock in the morning if that's what was required to keep Arden's BG where it should be. I've had nights like last night in the past where I slept through a DexCom alarm, but I don't think last night was a repeat of those nights. I think my age is catching up to me and even if it hasn't, how much longer until I'm that guy in the parking lot that has to let the rain soak him? How much longer until I'm exactly as fast as I look like I should be?
I've never been in great shape, never really cared about it enough to put in the time and work that fitness requires. I don't honestly know if I have it in me but I'm going to try because I can live with a belly and I may not care about a double chin, but my heart can't handle Arden's BG being 391... that beeping cuts right through to my soul.
Tuesday, September 10, 2013 at 8:00AM 
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