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.
Spotlight: Type 1 Diabetes Community on Facebook
One of the goals of my (and many other diabetes bloggers) advocacy is to bring the community, comfort and guidance of the Diabetes Online Community into the real world - because not everyone is online but everyone should have the ability to find others who understand their lives with diabetes.
During the recording of episode #23 of my podcast I asked Jack's Mom and Dad about the guidance that was provided to them at the hospital during their son's type 1 diagnosis. I was thrilled to hear that insulin pumps and continuous glucose monitors were on the menu but I couldn't quite believe my ears when Beth told me that their doctors recommended a Facebook support group. My heart leapt and I instantly thought of Cherise Shockley the founder of DSMA... she is always talking about bringing the goodness of the online community into the real world. Looks like it's happening and wait until you hear how that advice has benefited the Tran family.
Below is some information on the Facebook group that Jack's parents are members of and an inline player that you can listen to their podcast episode with... you can also listen at iTunes, Stitcher or on your favorite podcast app.
A little history from the TOFN founder, Alison Zettle:
"TOFN- is for parents(grandparents) of school-aged children or younger with type one diabetes living in Texas. The parents wanted to keep the topics focused on kids issues and not adult issues. We have three networks TOFN-North Texas, TOFN-Central Texas and TOFN-South Texas which includes Houston.
How it started: Andrew was dx in March 2010. I was so overwhelmed and I felt so alone. I read and read and read and I kept coming across the statement made by adults with type one "I felt so alone and different as a child". That broke my heart and I knew that in today's day and age our kids did not have to live/feel like that. We have to be aware the mental strain of having type one as well as the physical one.
I knew there had to be other parents living near me that had a child with type one. I wanted to meet them and learn from them and have Andrew meet other kids living successfully with type one. But no one could give me the names of anyone living with type one near me due to HIPPA laws. So I decided to create a local network so that parents and children could meet each other , learn from each other and support each other.
TOFN works closely with JDRF and the local children's hospitals. It took a lot of work to get it going but Andrew and I wouldn't be were we are today without the support of all our fellow D mom's and dads. The reason TOFN is so successful is because the TOFN members themselves. Someone is always there day/night to give you a much needed virtual hug or a "way to go"! I hope TOFN has made a difference in many families lives as it has certainly made a difference in mine."
Sometimes Your Blog Makes Me Feel Like a Failure
A long time ago on a blog far far away lived the father of a little girl who has type 1 diabetes...
Many years ago during a conversation with a fellow diabetes parent named Michelle I learned something about my blog that I was painfully unaware of... "Sometimes", Michelle told me, "Sometimes your blog makes me feel like a failure". This was of course, not my goal.
I was crushed because it wasn't Michelle who failed, it was me
Michelle and Mason
Michelle went on to share with me that while she enjoyed Arden's Day and found it to be refreshing and honest, it felt like my writing focused more on what went right with diabetes and in fact that the lack of relatable 'diabetes fail' conversations left her feeling as if everyone was 'succeeding' but her and that she was failing her son Mason.
I took her words to heart
I spent the next few days rereading my own blog and I could see what Michelle was talking about. I wasn't purposely just talking about the 'good stuff' but my attempt to be positive for the community was definitely coming off slanted in that direction. So I changed how I share online with Michelle's brave words as my guide. The adjustment was difficult in many ways but also incredibly rewarding. Anyway, that was a long time ago and today I pride myself on how honest and completely transparent this blog is - Not only is Arden's Day now a complete reflection of my life with type 1 diabetes but I've seen the power of sharing the good and the bad and how it has helped to buoy other families in their times of trouble.
I owe all of that, to Michelle Golladay and she is this weeks guest on the Juicebox podcast.
As you listen to Michelle and I talk about parenting and diabetes she'll spend a few moments telling me about a Parent Advisor Program that she has helped to set up at the Akron Children's Hospital - bringing the DOC IRL! I've included links here and in the show notes of the podcast, local Ohio residents and those interested in learning more should check them out.
You can listen to our conversation right here with the embedded player, on iTunes, Stitcher or your favorite podcast application.
The Importance of the Diabetes Community
This is the second in a series of five pieces that I wrote for Omnipod's Suite D blog. Part three is live on Suite D now and will arrive here next month.
It's a paid freelance gig, you can read my disclaimer about that on part one of the series (link below),
Part 2: Finding Support
My bedroom was pitch black and the house completely silent. It was well after three in the morning and I hadn’t been to sleep. My belief that my daughter Arden’s blood sugar would rise to a safe level was tenuous that evening so I was watching over her even more than usual.
When I fall asleep the likelihood of me waking up when I need to is slim. So on nights like this one I tend to just stay up. This night happened before we became continuous glucose monitor users and I would periodically walk from my room to hers to check her blood sugar. Each time I climbed back into bed, I became a little less certain that I could stay awake. Because my wife was sleeping I was trying to stay still, my eyes were sore from a long day that was getting longer. I had to stop watching television on my laptop, because it felt like there was sand in my eyes. I was exhausted, bleary-eyed and pretty sure that I was about to nod off – so I opened my Twitter app and, perhaps out of desperation to stay awake or maybe in an effort to not fall apart, I told who ever may be out there what was happening.
A few silent minutes later, I received a response from a woman whom I’d never met. She told me that she was also sitting up watching a blood sugar that she didn’t quite trust. That was it really. We didn’t talk much or offer one another solace. It was sort of a, “I’m here doing this thing and it’s getting the best of me.” And a reply that basically said, “Me too.”
I closed my laptop, the abyss of the night enveloped me and I began to sob tears of relief.
I was buoyed by the notion that there was another person in the world that was doing what I was and suddenly everything felt better. I learned that night that it isn’t the diabetes that made me feel alone and it wasn’t the darkness that caused me to want to reach out; I was being oppressed by the feeling that no one understood our life.
And just like that, with a tweet, I found sameness with someone that I couldn’t see, hear or touch. My diabetes community expanded. No longer would I have to wait for a JDRF walk to talk to a person who understood my life. Supportive glances, understanding words and the satiation that sameness brought, they were all I needed to feel recharged. Support came that night, but not in the form of mentorship or advice. This wasn’t a plan for counting carbs or talks of how to best prep a pump site. It was simple, beautiful and kind. A brief encounter with a person who had walked in my shoes and reassured me that I was not alone.
I’ve learned diabetes jargon, gathered information about insulin pumps, medications and ways of handling type 1 diabetes from the diabetes community. They’ve taught me with their openness to be comfortable with others being my rock when I can’t do it for myself. With the help of these wonderful new friends I began to see a light at the end of a tunnel, I was beginning to believe that it was possible for us to find our way back to feeling normal.
Read 'The Importance of the Diabetes Community Series
Part 1: How it Saved Our Family
Part 2: Currently Reading
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.
The Importance of the Diabetes Community
For those of you who are new to Arden's Day...
I do a little freelance writing some times. Once a year I write a series for Insulet, the company that makes the Omnipod insulin pump. It is no secret that when I'm paid to contribute articles the company paying me is hoping that my blog readers will checkout their blog, site, products etc. Hopefully they also like my writing, but I digress.
When I negotiate my writing contracts I always push to be able to repost what I've written here on Arden's Day. There are two reasons for that. 1. I don't want you to feel pressure to visit another site and 2. I don't want to hand in less than my best work in an effort to keep the 'good stuff' for Arden's Day, and for you. This way it's all the 'good stuff' and you can read it where you'd like. Alllllllll that said, this is the first in my five part series on the Diabetes Community. It ran on Insulet's Suite D blog one month ago (I have to wait a month to post here). Part 2 is up now on their blog as well, you can read it on Suite D or wait until next month and I'll repost it on Arden's Day. One last word on this. While I am paid to write for Insulet, it's not nearly as much money as you may be imagining and besides, there is no amount of money that could make me pass information or sentiments to you that are anything less than my 100% real feelings and experiences. This blog, our community and the responsibility that I feel toward you all means too much to me for anything like that to every happen. I just love the Omnipod and am happy to tell people about it. And you know what? Good on Insulet for letting me repost here, they couldn't have been thrilled when I made that request.
Part 1: How it Saved Our Family
When my daughter Arden was diagnosed with type 1 diabetes in 2006, our family was violently thrown into a world that we didn’t understand. The days, weeks and months that followed were full of endless sadness, fear and moments that hindsight would later tell us we could have handled much better.
I’m choosing to share my largest diabetes misstep from that time in our lives, because it led me to what may be the most valuable discovery of my adult life. This is part one of my five-part series about community and how it will save, support, teach, improve and transform your life with diabetes.
I should have sought out other people who understood our struggles, I should have found community. Too many of the decisions I was making were informed by speculation that was fed by an often self-imposed and largely unnecessary fear.
What I needed was support and wisdom, but instead I hid from the world and, in doing so, created a vacuum that was not conducive to living well. Had I found other people living with diabetes sooner, they could have shown me what I now know, but took much too long to discover.
Arden and Kelly at our first JDRF walk, two months after diagnosis.
My first experience meeting other people from the diabetes community was at our local JDRF walk. The walk we attend goes through a park full of winding paths, steep hills and majestic scenery – countless thousands of people all moving forward in love and support of one another.
At some point during the morning Arden needed insulin. We had just stepped off the path so others could pass when I realized that pausing our life to give Arden insulin didn’t seem in any way noteworthy to the people passing by. And then it hit me.
Everyone here has or loves someone who has diabetes. They don’t look scared and their faces don’t reflect the sadness that I feel. We were suddenly and beautifully surrounded by people whose lives weren’t being defined by diabetes. It was right then that I began to believe that diabetes wasn’t always going to permeate every second of our lives.
To this day I believe that the most beneficial aspect of what the JDRF provides is the opportunity to find sameness. If those walks didn’t produce a dime for research, I would still be there each year just to spend a little time around people who understand. Each year when I walk, my greatest hope is that someone who is feeling as I once did will see our faces and think, “I’m not alone. Those people look happy – we can be happy too.”
Community can take many forms and often the support you need can’t wait for a moment that can be found in real life – you may need the community to come to you. Luckily, the diabetes community is one of the most well-represented patient communities online. There are so many different ways to find kind, helpful and present people who would love nothing more than to help you believe that living well with diabetes is a tangible goal. These people have walked the path that you are on – they know the shortcuts. They write blogs, take the time to lend an ear on forums and give their best advice on Facebook pages. You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!
Read 'The Importance of the Diabetes Community' Series
Part 1: Currently Reading
Part 2: Finding Support
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.