Whack a Nurse
It happens every time that we change Arden's CGM. Not some of the time or once in a while, not now and again - EVERY fu*$ing time.
"Arden we need to swap your Dexcom sensor"
A moment later Arden and I meet up, usually at the kitchen island, she hops up to bring her hip to my eye level, all is well – until I reach out to remove the sensor.
Arden instantly tenses up, becomes frightened and speaks the following words - EVERY time.
She always begins with an apology for being anxious, "I'm sorry - I'm just afraid that the wire will come out".
That's it, she worries that the wire will break free of the sensor and stay embedded in her skin, she further believes with all of her heart that this will lead her to a hospital visit where the wire will be surgically removed.
Do you know why she thinks this... let me tell you.
Because of one poorly thought out moment that happened in 2010 when a nurse told Arden this could perhaps happen and that she should be very careful. "I've heard that the wire can break off and you'll have to come to the hospital to have it removed" - The person who said that was an idiot, not for saying it, but for saying it in front of Arden.
By the way, the wire has never broken off. I actually believe that Arden has as much chance of seeing the Loch Ness Monster as she does of needing surgery to remove a CGM wire, but thanks to dopey the nurse... she just can't shake those five year old words. It's now fIve years and probably hundreds of CGM swaps later and Arden still has this reaction EVERY time. One poorly considered utterance to a six year old and nothing I have yet to say has helped Arden to relax enough to forget those words.
I've tried to reason with her - "Arden we do this all of the time, has the wire ever come out?"
I've tried joking, reassuring, hugging. I've tried everything that a reasonable parent could think of and nothing ever works. By the way, Arden doesn't think the CGM hurts, she loves wearing it and receiving the data. Never-the-less she experiences a moment of real terror each time that we swap her site. Breaks my heart, frustrates my mind and dings my soul...
Last night I tried something different in the hopes of alleviating her needless anguish. I cursed.
"I'm sorry - I'm just afraid that the wire will come out..."
"Arden, I wish the god damn nurse who told you that the wire could break was here right now. I would smack her in the head!", I began. Then I continued telling Arden how angry I was at the nurse for saying something like that in front of her when she was too young to understand the intricacy of her words.
Here's to hoping that the next swap is different and that some well-meaning, yet ultimately mis-guided person won't say something else that terrifies my kid.
I think that I really would whack her in the head if she was here.
I Feel Really Dizzy
Nothing diabetes can do to us – is as harmful as living in fear.
It took three consecutive wins on one of the most grueling summer days that I can remember, for then eight year old Arden and her friends to become champions of their softball district in the summer of 2013.
If I recall correctly it was around the fourth inning of game two that Arden pushed open the dugout gate waving her hands at me. I jumped up and moved swiftly in her direction, she was repeating something that I couldn't make out until I got closer.
"I feel really dizzy."
Moments later I was in the dugout with Arden, I didn't bother to check her blood glucose before I gave her the first juice box. She would eventually consume over sixty carbs to get her blood sugar up to only 131.
Her BG dropped so quickly that the DexCom CGM didn't alarm until she was drinking her juice, by that time I had already tested – she was 37. The glucose monitor caught up to what was happening moments later and that's when I saw that not only was her BG 37, it was falling at a rate of greater than 3 points per minute.
Arden's spot in the line-up didn't come up in that inning and she didn't go back onto the field after her teammates batted. Arden spent that time lying on the bench with her head on my lap, waiting for the sugar to be absorbed. She told me that she was dizzier than she had ever been, her head hurt, she was flustered, a bit disoriented – it was one of the saddest things that I've ever witnessed as a parent. Until it wasn't.
Arden twice stood up during that time to check herself, hoping to feel better before her friends were finished on defense. She was beyond determined not to miss her at-bat that was due to come up when they got off of the field. Twice she stood in front of me looking ragged while pressing her hands against her temples, trying in vain to make her head stop spinning.
I told this story after it happened but I'm telling again for my #DiabetesAndFear series because even though it's only been a year, I now have a more complete perspective than I did that day.
Last year I was proud of Arden for being tough in the face of adversity. I felt resolute, if not a bit unsure, with my decision to let her hit at her next at-bat. That was the narrative then, proud with a touch of diabetes can't stop Arden.
Today I know that this moment taught us both a greater lesson. We live in a time where many parents try very hard to remove obstacles, no one wants to see their children struggle but I think that a person is made in those struggles and you find out what you're made of when challenged. In a world where I've seen kids leave a sports event because they skinned their knee, my daughter stood at the precipice of having a seizure, she did what she needed to survive – bore down and then won a championship.
This event happened almost 7 years after Arden was diagnosed. I would not have handled this the same way had it happened years earlier. When I was scared of diabetes this would have sent me running for our house and I may never have come out again. It is with great luck that I can tell you that other, smaller events like this happened before last year and they helped me to be able to find a calm focus on this day. Tomorrow, I'll tell you about one of those small moments.
I am reverent of what insulin can do and while there was a time when I was scared of it's power, watching Arden shrug off it's best punch taught me that this is the diabetes version of a skinned knee. Maybe it's not fair that this is our reality, but I am unwilling to allow the added concern to create a life of regrets. I am never reckless with my children's safety but I will be damned if I'm going to allow what was an anomalous event, to bring back the fear that enveloped me when Arden was a toddler.
Nothing diabetes can do to us – is as harmful as living in fear. You can believe me now or believe me later, but I can tell you this with certainty. I miss the time that we lost to being afraid and we can't get it back.
#DiabetesAndFear don't have to go together.
Guts Over Fear #DiabetesAndFear
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just letting you know that you're not alone
In celebration of the seventh anniversary of Arden's Day, I'll be talking about Diabetes and Fear.
Now I know that diabetes and fear don't sound like celebratory topics, but they are the very words that we should be talking about. Too many blogs are about the good stuff, too many talk about just the fear – not nearly enough talk about being afraid and getting past it.
Hearing the words, "Your daughter has type I diabetes" was decimating. It felt like a universal force ripped me from my body, fundamentally changed who I was, how I saw the world and what I expected from life – then shoved me back into an unfamiliar corpse to live out a numb existence.
Even though I was never the type of person to wallow in a moment, that feeling didn't leave me for years. I was stuck, couldn't move forward and diabetes wouldn't let me move back. Most days I knew that I was doing the wrong thing as I passively allowed myself to not try and escape. I would tell myself that all I needed to do was move forward, I believed things would be better if I kept moving... but I just couldn't make myself do it. There were too many new unknowns and I was afraid of every one of them.
As much as I knew that moving forward was the only answer and even though I could feel that my inability to do so was going to have negative long-term effects on our lives; I spent every hour of every day trying to pretend that I was building a strong defense, but in reality, I was only allowing myself to be trapped by a specter that only existed in my new fear-formed heart.
I knew. I KNEW that Arden was going to die, I could feel it. I constantly kept my eyes on her when she was awake, as if that would stop a low blood glucose from surprising us. I taught myself how to stay alive without sleeping and at one point had myself convinced that I could tell if she was high or low by looking at her.
Today, I know how wrong I was. Today I can tell you with the utmost certainty that I should have kept moving forward. That all it took to not be mired down in the fear, was the guts to not be afraid and the sense to focus on living instead of not dying.
“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.”
- from Life Is Short, Laundry Is Eternal
When I look back, it's unbelievable to me just how much fear was able to change who I was and how adamantly I was willing to defend my position. I really believed that diabetes was going to kill my daughter either today or in thirty years. Diabetes and fear had taken the place of reason. I had lost myself and the human desire to enjoy life to the diseases and in the process, forgotten why we had children. I was no longer a loving father who wanted to show his children the world, now I was but a well-meaning jailer trying to protect Arden against the one thing that none of us can guard against.
One day I was lucky enough to fail at my job of never letting anything 'bad' happen to Arden and then the process of moving on was finally able to begin.
I was saved by the very things that I was trying to avoid... they are my topics for the remainder of this week.
#DiabetesAndFear don't have to go together.
Diabetes and Fear
Come back Monday and we'll talk about #DiabetesAndFear
Arden was diagnosed with type I diabetes on August 22, 2006 – just a few weeks after her second birthday. One year later, having never read a blog in my life, I began to write Arden's Day. My goal back then was to share with family and friends what living with type I was like so that they could hopefully understand our new life a bit better.
Before long someone shared the site with a person outside of my circle and a month later I received my first email from a mother who lived in England – she was thanking me for sharing our life with type I diabetes and wanted me to know that my blog was helping her family.
It would be an understatement to say that I wasn't expecting that.
At the end of her note the woman offered me her support should I ever need it... that was my first interaction with someone in the diabetes community. That email reshaped my intention for this blog. I gave it a name, bought a url and set about sharing our days with the hope that our struggles may make yours a little easier.
In honor of Arden's last eight years of living with type I diabetes, I will be dedicating all of next week to stories about diabetes fear – with the hope that our struggles may make yours a little easier.
Beginning on Monday I will post five blogs - one each day - about how I overcame the biggest problem that diabetes brought to my life. I'll talk about the specter that arrive at the moment Arden was diagnosis, tell you the stories of how we escaped it, muse a bit about life since I got rid of it. And talk about what to do if it should comes back.
Come back Monday and we'll talk about #DiabetesAndFear
No CGM, No Problem
I completed a rather exhaustive set of parent, user and creator interviews last week about CGM in the Cloud.
Arden turned ten years old in July but in softball years she is consider to be nine. 9u Little League all star play is a one tournament and done setup -- district play does't begin until 10u when it is then possible to play in a District, Section, State and finally Regional tournament (The World Series only exist at 12u).
Arden's team won the 9 tournament in our district and with that, softball was to be over.
Until she tried out for the 10u team and made it as a sub. Now you know, if you already didn't, that the "u' in the age bracket stands for "and under".
Arden's 9u tournament began in early June before school was over and they practiced for weeks before the Father's Day tournament. SO she had already been playing for a while when..
The 10u practices started just days later in June and on the evening of August 8th, the 10s played their last game. Three straight months of softball. There were practice almost daily and games when there weren't practices. It's been a mild summer here but at times the heat has been grueling. Blood glucose levels have been mostly stable during play but late night lows have been more common this year than in the past. We are handling it well.
With three games left in the Regional Tournament, oh yea by the way... they won the whole thing (Arden had the winning hit in the championship game). Anyway, with three games left in the fourth tournament Arden showed up at the field without her CGM. Too far from the hotel to go get it, we went old school diabetes and never missed a beat.
With DexCom we test after warmups which is about thirty minutes before the game begins and make any adjustments that are necessary. After that Arden uses hand signals (she holds up her fingers) about every two innings to let us know what her DexCom is reading. If there is an issue, we handle it.
Without DexCom we tested after warmups which was about thirty minutes before the game began and made the necessary adjustments (she needed a few carbs). After that Arden used hand signals (thumbs up or thumbs down) about every two innings to let us know how she felt. We tested before the fourth inning. There were no issues.
Why did I blog this non-story about not having Arden's CGM?
I completed a rather exhaustive set of parent, user and creator interviews last week about CGM in the Cloud (I'll be explaining CGM in the Cloud soon for those who aren't aware) and if I'm being quite honest, I'm still wrapping my head around all that I learned. So much good stuff there, between having better access to data and comfort for parents, but there's something about it that makes me uneasy and I'm trying to find the words to share that feeling without diminishing the joy that I felt hearing the parents talk about their peace of mind and the people who are using the data to better their health. But there is a conversation to be had about fear and I want to have it... just need to find the words.
More great blog posts of Arden's Day