Arden's 10th Anniversary JDRF Walk
Arden was diagnosed with type 1 diabetes just after her second birthday in August of 2006. That October we participated in our first JDRF Walk.
First Walk 2006, Age 2
Yesterday we walked for the tenth consecutive year...
Arden designed her own walk shirt this year to mimic a softball t-shirt. Big thank you to OmniPod for being cool with us using their Podder logo to make the shirt. It was a great day, the weather was perfect and a ton of Arden's friends and teammates came along in support.
i'm trying to decide what to do with the extra shirts...
Arden's Nine Year Diaversary
On this very date, some time after midnight in 2006, I remembered something that I meant to say to my wife Kelly but forgot to earlier in the day. Arden was two years old, we were on a family vacation and she had been very sick for days. Our family was gathered around a table playing a board game late at night, Arden was sleeping on Kelly's lap.
"Arden’s breath smells funny, metallic or maybe sweet..."
Moments after I spoke those words, all sense of joy left our world. A few hours later Arden was diagnosed by an ER doctor with type 1 diabetes.
One year later as the anniversary of that night approached, I started writing on the Internet about my life as the father of a child who lived with type 1. I posted my first blog at 3 am. I spoke in that first post of a high BG that was over 220 and I talked about that number like it wasn't really that high. Back then our diabetes technology consisted of a small meter and not much else, I was scared, our technology was lacking and 220 seemed safe as she slept. Safe in the short term that is.
Much thankfully, has changed since then...
Tonight Arden is sleeping in her bed, BG is 78 and steady. I'm bumping it up before I go to sleep with a short temp basal decrease on her Omnipod, I'd like to have it at 95 before I finish writing this. I'm watching her blood sugar in real-time on my iPhone at the moment. Again, much has changed in nine years, no more sneaking into rooms like a vampire.
My daughter has had type 1 diabetes for nine years and I've been sharing my life as her father for eight of them. I've seen this blog help many families and I have a sincere hope that it will help many more. Arden has always been generous and allowed me to share my experiences without reserve. Aside from the occasional request to leave out a detail, she lets me tell my story in the hopes that something we have learned or lived through may help you. I got my joy back years ago and I don't want you to be without yours for a second longer than you have to be. I believe very much that community support in all its forms, is key to finding balance and recapturing the joy you felt before diabetes arrived.
But my story is her story and she's made a request...
Arden no longer wants this blog to be adorned with a header image that depicts her as a four year old. A reasonable desire, I'm sure you agree. She made this small request at the beginning of 2015 and since then I've been working with an artist that I love to replace the art that is at the top of the blog, on Facebook, Twitter as well as my social media badges. The banners, profile images and Juicebox Podcast cover art are nearing completion and should begin popping up in the coming weeks. The artist has created a representation of that sweet picture of a four year old Arden, the one in the yellow top, that is reminiscent of the original. It was my goal for current readers to be reminded of that image and for new readers to not see Arden as a four year old.
Moving forward my goal for this blog and my new podcast remains the same as ever. I'll live my life as well as I can and when something happens that I believe would help you to live yours, I'll share it here and on the podcast (Which you guys are being so supportive of... thank you!). A podcast, a lot really has changed in nine years.
By the way, Arden's BG is now 98. I temp basal'd that low away like a champ... but then I've had nine years to practice.
Until there is a cure, I'll be here if you need me.
Ardens 9th JDRF Walk
Arden was diagnosed in August of 2006 and we participated in our first JDRF Walk two months later. Yesterday was Arden's ninth consecutive walk, and this year we did things a little differently.
We tried not to squint but the sun was strong!
In the past our group has been seventy people strong, other times we've walked with a dozen friends, six people came one year, we usually have team shirts – yesterday it was just us. We didn't invite family or close friends, never sent an email or made a post on Facebook announcing the walk, heck our son even had something to do and couldn't make it for the first time.
Yesterday Kelly, Arden, myself and one of Arden's friends (Hi Jamiee) made our way on a windy and cold morning to the take the walk that has meant many different things over the years.
The first year we were still in shock from Arden's recent diagnosis when we went to the walk out of, what could be described as, a manic desperation to cure our daughter. Year two felt like giving back to the people who were diagnosed after Arden and we put so much effort into fund raising for the first five years. Over time the walk has been a celebration, a call to arms, always an opportunity to spread awareness, but yesterday I found myself reflecting for the first time.
Arden and Jaimee
"Can you believe this is our ninth walk?", I asked Kelly. See replied, "Can you believe Arden is ten years old... and how is our son fourteen!?". Time certainly does fly!
Here's Arden in 2006 at her first walk
The walk began on Sunday, as it always does, with a slow descent down a hill that this year was lined with signs that were adjourned with kid's faces and the details of their length of time with diabetes. When we reached Arden's sign my heart filled with an odd blend of pride and sadness. I wondered to myself how it was possible that in just one more year, we'd be doing this for a tenth time. After we took a picture of Arden's sign, she and Jaimee spent the walk on their scooters as Kelly and I strolled behind them enjoying the fall air (except for when a girl in front of us lit a cigarette - why?) and chatting. Early in the walk I shared with Kelly that I almost cried thinking about how long we've been at this diabetes thing and Kelly reminded me of the year that Arden wouldn't accept being held because she thought she would have to refund her donations if she didn't finish on her own. Overall I tried not to give type I too much of my attention, opting to enjoy our time together in the beautiful park.
Kelly and Arden
Kelly and I did talk for a while about the possibility of making Arden's tenth walk into an event. It was nice to have this year to quietly walk alone, but I'm hopeful that next year will find us back with a huge, raucous group, because despite enjoying the low key nature of our morning - we missed everyone.
Maybe we'll see you next year for Arden's 10th JDRF walk!
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.