The Boy in the Red Hoodie
My shame deepened when I recognized that my jealousy was a despicable conflict of the love and admiration that I have for my daughter and the intense way that I want type I diabetes to not exist.
Every spring the parents of our town's Little League baseball and softball players get together to clean up the fields that the children play on. I normally bring my backpack blower and help with the leaves that are leftover from the fall.
A few people bring their children, but for the most part kids are usually left at home.
My blower is crazy loud and so I wear noise-cancelling headphones while I operate it. The headphones, combined with the music they play, have a way of mixing with the vibration of the blower to create my very own sensory deprivation chamber. I can't hear anything but the music and so no one ever tries to speak to me, it's as if I'm invisible.
Eventually my blower ran out of gas and the illusion of being alone was lifted. I looked up and saw a little boy in a red hoodie playing by himself in the grass of the outfield; he must have been all of four years old. I watched him play for a few moments; he appeared to be off in his own world. He spun in circles and was talking out loud to what seemed like imaginary playmates - his parents off somewhere helping with the clean up. The site of him was heart-warming and yet, I was also crushed by the carefree nature of his joyful abandon.
I couldn't stop myself from wondering if his parents knew how fortunate they were to be able to let him run on his own, without worry. I tried to remember what it was like to not feel that pressure in the back of my head - do you know where I mean - it's the point where my skull and my spine connect. That pressure of concern and vigilance, the feeling that you are always guarding against something that may or may not be coming. It's the omnipresent tension of readiness to act, coupled with the intensity of constantly having to assess and reassess your surroundings and situation, so you can be ready at a moments notice - for anything. An ever-present and exhausting state of fight or flight.
In an instant I felt ashamed for wanting the boy's parents to know how I feel. It was a mad rush of conflicting emotions that left me confused. There was a part of me that wanted to tell his parents how lucky they are, I wanted to beg them to cherish this small, yet wonderful moment. I wished I could convey to them just how jealous I was so that they could know how fortunate they are. My shame deepened when I recognized that my jealousy was a despicable conflict of the love and admiration that I have for my daughter and the intense way that I want type I diabetes to not exist. I watched the boy for a second longer as I wondered if my daughter will ever get to feel life so simply ever again, then I lifelessly mumbled 'fuck' under my breath and walked away to refuel my blower.
When I returned to the leaves my moment of jealousy had passed and I began to think about all of the dozens of people on the field. What challenges did their lives hold that I am not aware of? In just a few minutes of consideration, I realized that each of the people at the park likely had countless life issues. As I tried to imagine what those challenges were, I recognized that they could be marital, health, financial, family, and on and on. The more I thought, the more I could imagine - and the less feeling jealous about the boy in the red hoodie seemed reasonable.
A Picture of a Tired Man
I've been feeling a little beat up lately and yesterday I thought for a few minutes about how I could elevate that feeling. "Maybe I should stop blogging", I thought to myself. You see, there's this post that I put up a few months ago called, How To Spot a D-Parent and it's success vexes me. I like the post a lot, please don't misunderstand, but it's just a picture of me looking tired. That post has been seen so many times, thousands upon thousands of views and shares. So much in fact that periodically I'll notice that it has found life again on Facebook and it starts all over again. So this isn't complaining, I love that people enjoy the post and I am grateful beyond description that it is being shared and visited. But it's just a picture of me looking tired and it's confusing and just a scosh defeating to write something that I connect with very strongly and watch those words not catch the eye of readers. To pour yourself into a piece of writing and watch it sit, untouched, is a feeling that I could only describe in very artsy terms that I'd be embarrassed to share here - but in a word it 'sucks'. However, I understand that everything I share won't connect and I genuinely don't have a problem with that truth, well I didn't until a picture of me looking tired made writing on this blog seem like a waste of time. Why not just take a picture and write something vaguely amusing on it I've begun to wonder - maybe www.ArdensMeme.com is available?
Anyway, I've found difficult of late to write the way that I like to, not because it's possible that I'll post in on a slow social media day and fewer people will read it, not because some may not enjoy it or feel it the way that I do - it's difficult because, well, that damn picture just makes it all seem so (I'm thinking of too many adjectives to pick one). Back to the part where I was considering not blogging to make my life easier...
Last night I received an email from a person who reads this blog. They asked me a question about a device and ended the email with this line, "Thanks so much. Keep doing what you're doing! You are helping to inspire an entire generation of T1D's!" - and with that I was instantly pulled from my funk. One wonderful sentiment reached me from somewhere in the diabetes online community... at exactly the moment that I needed it.
Thank you so much A.G.! You may have saved my blog, which is so much more to me than a blog. You just saved me from internalizing so my fear, guilt, struggles and uncertainty. You saved the people that come here to find commonality - you may have even made me let go of the confusion I felt about a picture being more popular than anything that I've written in months.
Thank you again, I'm going to answer your email and then finish a story that I started weeks ago and couldn't find the inspiration to finish.
My Best,
Opening Day: The Language of Baseball
Image property of Major League Baseball
Today, in celebration of the 2014 Major League Baseball season, a chapter from my book is available as an excerpt on both Huffington Post Parents and Huffington Post Sports. Baseball, Part II, is the story of how my son and I often communicate about life in baseball terms and how the game lends lessons that go far beyond the field.
The chapter captures a moment from my son Cole's 2012 Little League all-star tryout and ends with a conversation that we had about setting goals, perseverance and the love that we share for each other and baseball.
I hope you have a few moments to check it out and click share over at Huff Post.
2013 Fall Championship game
Winner of the Gold 2013 Mom's Choice Award
I can't tell if I'm more excited to share my book on a big stage or to see a picture of Cole playing baseball on the front page of HuffSports, on Opening Day.
Life Is Short, Laundry Is Eternal is available at Amazon.com and everywhere that books and eBooks are sold.
FDA and the Diabetes Patient Community
Patient Network Live Chat: Diabetes - Glucose Monitors and Test Strips
Talk with FDA expert Courtney Lias and
Patient Advocate Bennet Dunlap (Yea Bennet!)
about Glucose Monitors and Test Strips
Monday, March 31, 1:30–2:30 pm (EDT) Talk, share, and connect with the
FDA and the Diabetes Patient Community
Do you want to learn more about the role of the FDA in the regulation of medical devices, such as glucose monitors and test strips, used in the management of diabetes? Do you want to learn what the FDA is doing to increase the accuracy of blood glucose monitors and test strips?
When you participate in this friendly online chat, you will:
Enjoy an informal, open discussion with a fellow patient advocate, CDRH subject-matter-expert and others in the diabetes community.Learn more about the role of the CDRH, specifically the Office of In Vitro Diagnostics and its work to ensure the safety and effectiveness of medical devices used in the management of diabetes. Get your questions answered about the newest FDA draft guidances, which are proposing new recommendations intended to improve the accuracy and safe use of blood glucose monitoring test systems, giving healthcare providers and people with diabetes better tools to manage blood glucose levels.
Whether you want to just listen to the interview, ask relevant questions about the medical device regulatory process or just speak your mind on the newest draft guidance document…. you should join in the conversation.
Register for this event and be sure to mark your calendars and join us on March 31st, 2014.
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.